| .
This thesis was
added Chapter One Appendix One . . .
|
The Presenting Symptoms Associated With Arachnoiditis And The Experience Of Living With Them In Everyday Life A thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Nursing at Massey University by Christine Hopkins - 1998 Chapter Six: Symptoms and Human Field Patterns.IntroductionThe previous chapter examined the symptoms of arachnoiditis as presented in medical and nursing literature and noted that difficulties in determining which symptoms related specifically to arachnoiditis prevented presentation of a definitive list. This chapter describes the human field patterns revealed at interview through the process of pattern appraisal, in which participants were asked to describe the experiences and perceptions they believed were symptoms related to arachnoiditis. A symptom is defined as any circumstance, event or condition that accompanies something and indicates its existence or occurrence (Webster, 1997). Medical terminology identifies a symptom as subjective evidence of disease or of a patient’s condition (Dorland, 1988). Although symptoms are taken-for-granted concepts for health professionals, who usually consider them in particular groupings ‘belonging’ to a specific disease, it was not known if participants in this study understood the concept in the same way. Because this study asked participants to identify and group their own symptoms in association with arachnoiditis, the researcher felt it was important to establish just what their understanding of the term ‘symptom’ was in comparison with dictionary definitions. Accordingly, each participant was asked to say what the word ‘symptom’ meant to them. They were then asked to describe the symptoms they had that they related to arachnoiditis. Where possible, the data is presented under the names participants gave their symptoms. An overview of the symptoms has been abstracted from the transcripts and included as a symptom summary (Table 1) for each participant. Table 1: Summary of symptoms*
Participants’ definitions of a symptom Two participants did not define the word, instead offering “mini electric shock” and “back pain and pins and needles.” Two participants used the word ‘sign’. For one, a symptom was “an outward sign that something is not right” and for another, a “sign that something is wrong.” Three participants described a symptom as indicating something “wrong” with themselves - “something’s wrong”; “ . . . what’s wrong with you or what makes you think something is wrong with you”; “ that there’s something wrong down in there.” Two participants linked the term to what they were feeling - “ it’s something that’s distracting you from feeling okay” and “ how you are feeling.” For another it was “one of the effects of his condition.” One felt it was “a thing that makes you aware of what is going on in your body.” Another stated it was “probably a problem associated with the condition.” One participant summed up symptoms as “what you’d describe.” For another, it was “something you can relate to that you’re telling someone you’ve got, that makes you feel unwell.” Pain patterns associated with arachnoiditis. This section provides a description of the symptom identified by participants as pain. It was difficult to be exclusive about the location of various pain experiences, as pain experiences in other parts of the body seem to be all related to, or concurrent with, back pain. Experiences of back pain fall into three groupings: no pain, intermittent pain, and constant, severe, remittent pain. Descriptions are presented within these three subcategories. Paul Unique among the participants is Paul. He has an MRI confirmed diagnosis of arachnoiditis, weakness and mobility problems in his lower legs, but no pain. He is very much aware of his good fortune in this regard. I have no pain or don’t suffer these horrendous things that some of the other folk [in arachnoiditis support group] do... I think I’m one of the lucky ones, that I’ve got no residual pain, really. He did have back pain prior to his spinal surgery, but has had none since. He worries more about a close relative, who has had four spinal operations and is still in “quite a bad way” with a lot of pain. For two participants, neither of whom have medically confirmed arachnoiditis, the pain is more aching or sore than anything else. Greg Greg’s back pain occurs in various sites “up and down my back at different times” with soreness of his shoulders and arms, and loss of power in his hands. There has been a change over time to his pain. I actually have more pain in the back than I used to. It’s sort of constantly there. I can go through a few days where I don’t feel it. But then it’s like this. I mean, if I stand up I get a twinge or something. Mostly, it seems to be in the back. And I’m sort of finding that now it’s moved down the bottom ... there is a conclusion from the x-rays and things that the bottom disc in my back is, has completely gone. And the one above it is going. I think it’s that particular second disc that’s causing the pain. Mick Mick’s back “plays silly buggers” on sitting or standing for too long. Always got sore hips. It just aches there all the time, sort of style . . . It’s always there . . . about where I had the operation, roughly, or just below it. And round about the, just above the buttocks itself. This leads to restrictions in his activities. “You know, I’m sort of growing used to it now. But if I get out in the garden for any length of time, it starts hurting worse. Or stand over the bench too long, it’ll get worse.” Severe, remittent, burning pain Jack Jack, with two major accidents and surgeries had, at the time of interview, a diagnosis of myalgic encephalitis (ME) but no explanation for his back symptoms. Pain was not relieved by his initial lumbar surgery, but he had thought that was to be expected after surgery and would gradually disappear. Instead, there has been increased pain and tingling. A burning area has increased in size from halfway up his buttocks, to “above L4 to L5” and out to the sides of his hips. The burning sensation has intensified, feeling like an “over hot, hot-water bottle” is resting in his spine. He cannot remember whether the burning started months or years after his surgery. There is an aspect to his burning pain not mentioned by any of the other participants. I get not only the burning sensation, but my back goes numb and cold . . . the rest of my body could be hot. I could be sitting here at night with my shirt off, with the heater on, and feeling really nice and warm, and the whole area that I’ve just described will be numb and cold. And the wife will put her hand on my back and she’ll take her hand away, because it’s so cold, physically cold. It’s cold, [but] it feels burning. Hot burning [but] if you touch it, it’s cold. Jane Jane, whose G.P. and specialist are both convinced she has arachnoiditis, despite lack of MRI confirmation, has back pain centred over her lower spine, spreading up to between her shoulders. Her thoracic pain has a “burning, stabbing” quality and is “deep in the vertebrae” but not in the muscles around it. Although she initially said it was intermittent, she later qualified this. “I think you learn to ignore it. You know it’s there. It’s there all the time. It’s dull, and then it flares.” The quality is therefore remittent, having periods of abatement without any actual cessation, alternating with exacerbations lasting two to three hours in which it flares “like somebody with a match in there” and becomes intolerable. In her lower back, it “transfers over my left hip and down to my leg. It follows the sciatic nerve.” Sometimes, the pain extends outside the sciatic nerve distribution, usually as a burning pain around her knee. Jim Jim’s back pain is constant. “Pain’s there all the time. You take it for granted.” His diagnosis of arachnoiditis was made in 1989, on MRI evidence. His back pain is all around the middle of his spine and “sometimes it feels actually as if it’s splintered.” He, too, has a burning quality to his pain, like “a fire.” This has been with him for the last eleven years, developing gradually and spreading outward from his spine to a wider area. “The other pain area, very much so, is the neck,” along with aches and pains in his shoulders. His clavicular area is also painful “and you can touch any of your bones [indicating his clavicles] and they are, in fact, extremely sore.” The pain in this area is compounded when the back of his neck goes into spasm “from time to time and can be very painful.” Jim also finds the bones in both his left and right legs get very sore on walking. This is not a muscular pain, although his calf muscles do also ache. “It’s deep in the - it’s definitely a bone thing and sometimes, in fact, I have to stop walking . . . x-rays have been taken and there is no abnormality on the bone scan.” Mary For Mary, who does not yet have any diagnosis, pain became permanent in her life after her first epidural, apparent to her from the time the local anaesthetic wore off. She describes it as like an “ice burn” which is “deep,” rather than on the surface. She locates it as “probably the lower lumbar, and it radiates both sides. And that’s there all the time. It’s starting to come down the front and side of my legs.” The pain also extends up her back. “When I move. When I use it. It’s not there all the time.” It is also worse on moving her neck in any direction. Rose Rose, who has had a diagnosis of arachnoiditis from some doctors but not from others, has continual and severe back pain. Pain is synonymous to her with cramp. The “muscles feel like they are going to spasm, but they are not, they’re actually relaxed, because there is no lumping of the muscles.” Lying on her side worsens it by adding numbness to the experience. The pain has a constant, strong, burning quality, particularly on the left, and extends down into the pelvis, into the coccyx and into the groin. Nothing gets rid of it. The cramping, the burning and just the constant - oh, there’s a sharp, a very, very sharp nerve pain that goes down the tailbone and across to the hip. But it just doesn’t relieve. There have been a number of changes over time in both the type and the severity of her pain, which she links to medical interventions. Prior to each change she thought her pain was as bad as it could get and agreed to further procedures because of assurances that the pain would be relieved by that procedure. I thought I was in pain when I first had the accident. But I had no inkling at all of what pain was like. Yeah, at that stage it was, thinking back on it now, it was annoying, more than anything else. This pain altered markedly after her first epidural steroid injection. It caused severe pain and I’ve never known anything like it. And I went to hospital within three months and had to be operated on. And there was no disc protrusion or anything - just the badly swollen nerve root. Rose had high expectations of this surgery, which aimed to decompress the nerve root. Unfortunately, the surgery did not have the expected results. He said to me that he could guarantee the pain in my legs would go. But the pain at that stage was the first time I’d ever experienced the cramping. I couldn’t move my leg, it was just cramped. Rose reflected anger and despair as she related how the doctor had promised a second lot of steroids, given in 1994, would alleviate this cramping pain. The doctor had promised me that I had nothing to lose - at worst I’d be no worse than I was. At best I’d be pain free for two months . . . I’d walked into the hospital and I haven’t been able to walk properly since and the pain is just - I thought I had cancer [since the day] of the injection. Pain that I’d never had before in the tailbone. Rose sought explanations for her pain and was told the nerve was dead. We queried that, because in our way of thinking, if a nerve, if it’s dead, why is there still so much pain? And he - the way he explained it was like a dam. You’ve got a dam. You build a dam and heavy rain and that, it fills up and then it overflows, and it was the overflow from the dam of the dead nerve that was causing the pain. This search for an explanation has led to further confusion. “It doesn’t make sense, Everyone tells me something different.” Terry Terry’s pain varies through the day. A “dull ache” when he isn’t doing anything, it intensifies with activity. Terry feels pain in his neck, his thoracic region, his lower back and in his left leg. He has had multiple injuries and surgeries to his spine, starting with an operation for hiatus hernia twentyfour years ago, in which a rib was removed to gain access to the site. “I always knew I had a weak side where that rib had been taken out.” His “burning sensation and that cramp business all comes from that area.” That “cramp business” refers to the burning cramp that spreads across the middle of his upper back “by the time I’ve walked 10 minutes ... It just becomes like a tighter and tighter burning feeling.” He thinks falls on his back, the first nineteen years ago and the second ten years ago, while wearing breathing apparatus during his work, have resulted in further injury to the operation site. “That burning, tightness thing that comes across my upper back just below my shoulder blades . . . that’s where the breathing set was resting on my back.” Although the pain originates in his spine, he feels it primarily in the muscle tissue and finds it very hard to describe. It’s not like a scald burn or a hot touch burn . . . It’s not like any other sort of pain I get. It’s just a burning, painful sort of cramp sort of thing . . . like a crampy, burning sensation that just sort of locks up your whole upper back. But only on the back. It doesn’t come round the sides, or anything. When he is not walking, the pain is less. It’s more prevalent in the left side, slightly out toward the kidney. In fact, there’s some times when I think it must be a kidney infection, except that, where you’ve got a slight leaning forward motion, there is a definite sharp grab of pain that seems to flick down my leg and though my pelvis and lower back. Tom Tom’s pain had been of gradual onset, but has become a “constant pain,” with him “all the time,” and extending higher up as “a burning sensation just below the rib cage.” This is much higher than the site of his original injury and surgery, and now involves a degree of intermittent chest pain. There has been disagreement among doctors as to Tom’s diagnosis, with the medical verdict one month prior to interview finally confirming a diagnosis of arachnoiditis. With or without a diagnosis, he finds his spinal pain hard to bear and hard to describe. “The pain is really hard to describe. When it’s really bad, it’s excruciating and you can’t do anything about it; nothing eases it.” The quality of his pain is “like a freezing cold burn” coming from the spine and “going all through your muscles around your back, and it comes right up and over your shoulders.” Tom cannot feel below his waist. “I can only feel it from the middle of my back, up.” However, he has an awareness that many of the sensations he feels higher up his back extend from that insensate region below waist level. Will Will has “lots of back pain.” As well as “burning,” Will describes his back pain as a tightness in which “it’s like being in a vice and somebody’s doing the vice up and it just gets tighter and tighter.” This painful sensation first occurred after a Metrizamide myelogram twelve or so years ago, after which he developed what his medical notes describe as “chemical arachnoiditis.” He had gone home following his myelogram, only to become unwell during the night. I got rushed into hospital in the middle of the night with, you know, I was hyperventilating, my hands were all pulled up really tight, my feet were pins and needles and I had no feeling. I was there for five days, I think. But I think it was the next night. It was the middle of the night. I woke up in pain and it felt like they had my chest and my heart and my back in a vice. It was really excruciating pain. And my vision was all funny and my hands were funny. And my feet were funny. Usually a dull ache he “can live with,” his back now sometimes gets so sore he has to stop what he is doing and rest a while. These exacerbations are similar to the vice-like pain he had at the time of his chemical arachnoiditis and are like “a constant squeeze, tighter and tighter and tighter” up and down his spine, including in his neck, his head and his lower back. Sometimes they last only an hour; other times they continue all night or all day “and then they’ll just go away.” This is quite different to the pain he had had initially. “The pain in my back was way down the bottom where I actually had my fall. I think it was L3 or something, was where I hurt it.” Will has no medical diagnosis for his symptoms “The scan (MRI) says it’s in real good condition, and they reckon there’s no need for me to get backaches. But I get them. So?” Of what sounded to be a particularly excruciating nature is the pain in the sacrococcygeal area experienced by two of the participants. Jim Jim struggled to describe the sensations he experiences in the sacrococcygeal area of his spine. “Pain, just pure, burn pain right the way through.” The burning “raw, raw, raw, raw” nature of the pain leaves him wanting “to freeze. What ever you do, hurts.” He finds that, “when that tailbone gets - there’s just no way out of it. You’ve just got to wait.” He has to be wary of the type of seating he uses, preferring a La-Z-Boy chair at home. And sometimes even, because this is soft really [seat he was sitting on during interview], I would find if I was sitting up straight, I would be putting the pressure on it. If you lie like this [sitting slightly on to one buttock] you put pressure off it. This difficulty with sitting interferes markedly with some of his activities. Like, when you are driving a car, I’ve actually had it where, when the driver of a car, the tailbone is just fire. You just cannot, there is nothing you can do to stop it. There is no where you sit, how you sit. If you take your bum off the seat it just doesn’t matter. You cannot move. You cannot move. You just take your foot off the accelerator and hold on to the wheel and lift yourself off the seat and wait for it to stop. He had been searching for information about it. “I’ve been looking, because I don’t know too much about it. I’ve recently learned that it’s called a cauda equina” and this knowledge has helped him access more information. He had asked his doctors but “all I’ve ever got from any of them is, I don’t know.” Rose Rose describes it as ‘right in the centre of things, as if it’s going to come through the tailbone” and “ sharp, a very, very, sharp, nerve pain that goes down the tailbone and across to the hip.” Bad as it may be while sitting on it, for Rose, this pain is far worse when she lifts herself off her seat. Rose sometimes tries to play a game of cards. Just to break the monotony and it hurts like hang but it’s okay, while you - the pain in my tailbone is so bad while you are there [sitting on it], but it’s worse trying to relieve it, take that pressure of it It seems to be this pain at the base of the spine that explains the sideways sitting noted at meetings with people with arachnoiditis and the need for large meeting rooms so people can lie or sit on the floor if they choose. Rose sat on a sofa with her feet tucked up beside her during her interview. Mary lay on her bed. Jim chose a soft chair and walked frequently, as did Jane, although neither she nor Mary distinguished a particular problem with pain in the coccyx. Five participants experience what they term as sciatica. Medically, this term is given to a syndrome characterised by pain beginning in the lumbar region and spreading down the back of the lower limb to the ankle and, sometimes, the foot. It is most commonly associated with disc protrusion and involves little weakness and sensory loss (Walton, 1985). Sciatic pain associated with arachnoiditis can be distinguished from that associated with disc protrusion by assessing several distinctive keypoints (ibid). The onset will be more gradual in arachnoiditis, the nerve will not be tender on pressure, and a progressive muscular wasting and sensory loss will be apparent. In contrast, sciatica associated with disc protrusion will maintain a stationary course or will show improvement. Chronic sciatica is recognised as a difficult pain problem in individuals who have been operated on many times for spondylitic or lumbar disc herniation, with postoperative continuation of pain in the distribution of the sciatic nerve, often with an associated reduction or absence of sensation in the painful areas of the leg. Further surgery to relieve this pain may convert the painful sensation into a burning dyaesthesia, which is probably of central origin (Nashold, Bullitt & Friedman, 1989). This study made no assessment of the category of sciatic pain experienced by the participants. Jack The use of medical terminology created confusion for Jack. The doctors used to say to me, have you got any sciatica? And I said, “What’s that? I don’t know what sciatica is.” And I just had localised, severe pain in my L4-L5 region. But since the operation, I do now get sciatica. I know what sciatica is. Jack did not enlarge further on what his sciatica was like for him. Jane Jane has sciatica across her hip and right down to her toes on the left side. This pain started during the period in which she continued to work in a job which required heavy lifting after she had sustained a back injury. “Severe pain. I mean, I couldn’t straighten up. I couldn’t straighten up.” There were subsequent major repercussions on her work life and Jane still berates herself for this. I took myself from full-time down to half time. Down from five days a week, from four, to three, to two to nothing. Because I just couldn’t - I had no - the pain down my leg was so severe. I was a fool. I should have given in earlier. Eventually she had surgery, but this only relieved the pain for about three months, a relief she now attributes to the post-operative enforced inactivity. Because I wasn’t moving around very much anyway. And once I started to get more mobile, the symptoms were coming back. The sciatica was coming back. And the pain was getting worse, and worse, and worse. Same as I had before. Not as severe. For the first six months, not as severe. But after six months, I was just about back to square one. Now she gets sciatic pain three or four times a day, particularly after work, at which time pain is “deferred” [sic] from the lumbar region into her upper back as well as to her leg. A burning, stabbing pain “transfers over my left hip and down my leg” and the doctors have confirmed it “follows the path of the sciatic nerve.” However, she believes it also sometimes extends to places where the sciatic nerve does not and manifests as an area of severe, burning pain, rather than a line of pain. Mary Mary has had “bad” sciatica down both legs, worse on the left, for the last seven and a half years. Sciatica was her first symptom after an epidural steroid injection for her initial injury, and she describes it as “like hot electric shocks.” At that time it was intermittent. Following her second spinal surgery in late 1990 or early 1991, in which the nerve roots were bathed in the same drug, Triamcinolone (Kenacort A-40, see Appendix One) that she had had in both epidural steroid injections, it became continuous, with no breaks or cycle to its occurrence. “It was actually worse. Once I came out, then I had the permanent sciatica and that’s when everything was really sort of set in.” Mick Mick presumes that what he experiences as “pains down, right down the leg itself, the back calf muscle area” is sciatica. The pain is a throbbing pain “more or less” and seems to travel down deep in the bone itself. Paul Paul’s experience of sciatica happened in March, 1997, at a time when his leg symptoms became worse. Like Mick, he is not absolutely sure that what he experienced was sciatica. When this first happened, I thought I must be developing sciatica or something of the sort. I had a, well, you know, these things happen at night when, like toothache, they come to the fore when things are all . . . Not that I - I really don’t know what sciatica is, but I guessed a sort of a pain from the groin down the leg. It settled down after a while, after copious amounts of Panadol and Digesic and things which didn’t really seem to do any good at all and eventually I was able to phase out of them. And I don’t take any medication now at all, and fortunately it doesn’t happen now. His pain was only on the right and suddenly “just went as it had arrived, and I’ve had no problem since.” Terry Terry experiences sciatic pain in his left leg, which he describes as “right at that point where the sciatic nerve starts. It’s, to me. it’s like a toothache pain.” The majority of the participants have severe and frequent headaches of various types that they did not have prior to the onset of their back problems. The generic nature of the word ‘headache’ does not give any indication of the variation of the experiences participants described. Participant’s variously ascribed their headaches as a symptom they associate with arachnoiditis, a side effect of Depo Medrol injections, or a result of surgery. The literature review did not find a mention of headaches as a symptom of arachnoiditis. Mick and Rose did not mention headaches. Paul and Tom do not believe that the infrequent headaches they have are connected to arachnoiditis. Greg Greg finds “there are specific occasions when I’ve overdone something, and I’ve hurt my back. Along with the sore back, comes the headache.” Greg supposes the majority of his headaches are reasonably mild. Every now and again, I get a fairly sharp one. From my understanding of headaches, I haven’t suffered a migraine as such, but I have had quite severe headaches, periodically. It’s probably basically too much bending, or lifting, or something. It’s no one particular activity that sets it off. Jack Jack links his headaches to problems in his neck arising from his surgery. “I get really bad headaches through my op., where I’ve had the operation on my neck. And that’s probably causing the bad headaches.” Jane Jane links her headaches to surgery. I never had the headaches when I, before my laminectomy. It is the post laminectomy back pain that causes the problems . . . Usually if I’ve got severe pain in my back or up into the middle of my back, I get these headaches. They, sometimes I have to go to bed. Although her headaches are migraine-like, she does not believe that they are migraines. “I don’t get migraines. I’ve never had migraines in my life. And it all comes from, I’m sure, my back” These headaches can occur two or three times a week and are very severe. I get these headaches just on the top of my head [and] can barely see out of my eyes. [It] feels like it’s exploding, as if the top of my head’s going to explode. There’s pressure inside that just needs to be released. They’re basically all on the top of my head. I don’t know. It’s a tightness. It’s like there’s not enough room. It wants to expand and it can’t . . . it’s just on the top of my head and I can sometimes, can barely see out of my eyes. So, I just go to bed. These headaches can last for a couple of hours, or for three days on end. “They just seem to have to take their course.” Jane also made a linkage between some of her headaches and stress. “If I get stressed, you know. I’m not a stressful person but in our life we do go through stress and I find that brings it on.” Jim The duration of Jim’s fleeting attacks that can be “as quick as that [snaps fingers]. They were evident during interview as a brief, grimacing wince, an involuntary movement of the hand towards the forehead and a slight lapse in concentration, occurring up to every five minutes. His comment was,“Yeah. Oh, it’s coming and going.” He dryly summed his headaches up with “You do wince, it’s so strong.” Mary Mary has headaches “all the time. They’re like migraines. Well, they are migraines. They’ve been diagnosed as migraines. I’m on medication for that.” Terry Terry knows that if his neck is out, his “head starts to ache.” He describes the pain he gets as neuralgic in nature. “The neuralgia thing’s in the right side. And that just gets to a point where my whole scalp and side of my face are just crawling. I can’t - it’s jangly, I guess is the best description.” Touch emphasises the pain. Untreated, “it’ll ultimately turn into a migraine. If I don’t do anything about it, they just go on and get worse, and worse, and worse.” His headaches may last for a whole day, getting extremely severe. Frequency has decreased since he had some manipulative treatment on his neck. Will Will cannot relate his headaches to anything specific. Sometimes I’ll get a headache half way through the day. And it’s, like it doesn’t seem like anything else is wrong. I’ll just suddenly get a headache. There’s not a lot of noise. Or I’m not doing anything that should give me a headache. The head pain is of an exploding nature. “As if they’re going to explode . . . Like, even when it’s like a heart beat, if feels like if it got any bigger, my head would explode.” Will has problems with his eyes, as well as his head. “It’s inside my eyes are sore. Inside my eyeballs are sore, yeah. Right inside.” Headaches linked to myelograms Three participants mentioned the headaches they experienced at the time of their myelograms. Jane Jane does not remember being told about headaches as a possible side effect. “I was told nothing. That there would be no complications. I wasn’t really told - I was told very little about what they were doing. Just that I had to lie flat.” Tom Tom felt sick and had blinding headaches with double vision which came right after a couple of days, along with difficulty in standing, which continued for a “period of time.” Will Will was warned he might get a headache after the test, but remembers a rather mixed message. “He said, there are no side effects. He said, you’ll get a headache and you might be sick. That’s it. And I got both.” Will then became very ill with what was diagnosed as chemical arachnoiditis. Headaches linked to epidural steroids Two of those who had epidural steroids administered for pain management developed severe headaches afterwards. Jane Jane had severe headaches, along with other pains, immediately after each epidural administration of Depo Medrol. She learned that this is a side effect of the treatment and that the manufacturer recommends that “epidurally, Depo-Medrol should never be given, because of the horrific side effects.” She then elected to have Depo Medrol intramuscularly instead, but found the headaches and other pains that still seemed to accompany the treatments so unacceptable in terms of subsequent benefit that she has currently discontinued them. She did question her doctor about these problems but “he never answered me. He said it was part of what I had to go through. That was his answer. Or else he would ignore me.” Mary Mary is certain her migraine-like headaches are clearly linked to the epidural insertion of transinilone. “Migraines came after the injection. Not the first injection, the second” and she has had no explanation she considers satisfactory for the onset of these migraines They just said, “Well, it could be a twinge, umm, allergy.” They’ve given sort of everything around the part, but they’re not prepared to even acknowledge that it could be - ah, connected with the injury or the treatment. Four participants have painful sensations in their feet. Jim Jim’s feet burn. “And that applies to both the feet, on the underside.” Mick Mick finds his toes and the bottom of his feet burn all the time, but he is not certain whether this is back-related, or because of diabetic complications. How can I put it? Oh, it’s just a burning. A very hot . . . it’s a hot burn. I can . . . it can be cold, yet my feet will be burning. And then they go the opposite way, and they get cold. I’ll put me slippers on. I’ll put them on for about an hour. And my feet’ll be back to burning again. Terry Terry has two sensations, one of burning, and the other of bruising. It feels like walking on hot rocks, right in the middle of my feet, it gets really hot, burning feelings . . . I can be standing at the sink, doing something and suddenly it feels like, in my left foot, I’m standing on hot coals. The bruising is like a stone bruise. “They’re stone bruised on the heels. If you’ve ever had a stone bruise, that’s what it feels like on my heels and in the middle of my feet for 95% of the time I’m walking around.” Will Will reports that it feels like “walking on hot rocks or something” in his feet. “Like, in the middle, it goes right through the middle here [indicated soles of feet] and it gets really hot burning feelings. And in the end, it’ll just go away.” Jane Jane has unexplained joint pains. “I didn’t understand why all my joints were sore. Because it wasn’t - it was different to my back. Totally different. And I was tired and just not myself.” Referral to two rheumatologists brought a diagnosis of fibromyalgia as an explanation for these pains. “ I’ve had two rheumatolgists tell me it was that. Straight away. Recognised it straight away.” Jim Jim has pains that shoot down to his leg and knee. “There are pains around the knee area. From here down to the knee area. That can develop. But I think they’ve covered that with arthritis. It travels down at the side, and it sort of goes around the knee.” He is not sure whether he agrees with the diagnosis of arthritis. I mean that’s what I’ve been diagnosed as. And fibromyalgia. I don’t know. I mean I’m so confused by it all, really, that - Because I actually asked the specialist what is the connection with, if any, and he said there is none whatsoever. With either arachnoiditis or anything else. You know, it’s got nothing to do with your back. So he said. Jim also gets swollen joints in his hands. Arthritis medication helps with this but, again, Jim is not sure at the sharp delineation between diagnoses. Oh, yes. It certainly helps, Yes. Because, I mean, there’s no doubt about it. My hands were swelling up and I was definitely having trouble with those joints [in hands]. Of that, you know, there’s - but to say there’s no connection is, I feel, possibly a grey area. Rose Rose has pain associated with osteoarthritis in both knees. This is showing up on x-rays and stems from surgery for cartilage tears occasioned by hurdling when she was a teenager. Tom Tom has shoulder pain but is uncertain whether it is primarily connected with wheelchair use or to his back. I started having problems with my arms. My hands were locking. Swelling, and you just couldn’t move them. And my arms were really painful to me. I could move them but they were very, very painful in the shoulders to move. And it aggravated any time I wheeled any great distance, it was aggravated. Tom has chest pains, diagnosed as angina, and, at one time, as a myocardial infarction. These attacks can be severe enough to cause collapse and, initially, before he knew what the problem was, hospitalization. “The first one was just in the centre and it was like indigestion, really. It was just a bad pain in the middle and I couldn’t get rid of it. Shortness of breath and I felt cold and clammy.” This episode led to his referral to a physician who, on learning Tom had no true diagnosis for his back problems, decided to write to a “specialist asking whether or not my heart problems could be related to my back. And they pulled me in and started doing tests. MRI’s, the works.” The orthopedic specialist ordered the MRI and on the basis of the MRI wrote back to the physician and said “No, that it wasn’t related.” Tom has had several more of these attacks and is now on Anginine. Tom believes his heart problems are linked to his back, at least in part. I started having problems with my heart. And they started looking in to it very seriously then, to find out why I was in a wheelchair and so on. Two years after I’d ended up in the wheelchair. OK. I started having heart problems. When I was first admitted, it was query MI. They did all the group, blood groups and everything and it came back that it wasn’t, and it came back that I had a very high cholesterol. I had 13. They suggested a diet, and I went on the diet and that. About six months later, I had another one. They gave me anginine and so on at the hospital, and that didn’t work. And so they put me in to ICU for three days. It just gradually went away. There was no damage to my heart the first time. The second time, there was. That was an MI. Although the researcher did not mention it, five participants spoke of their ability to tolerate pain. Jane Jane feels she has always had a high level of pain tolerance. I have a very high tolerance to the pain anyway. Which I’m probably lucky I have got that. I’ve always had it and I think that’s how I - [orthopaedic specialist] said to me, I originally were [sic] able to keep working. Because of my high tolerance of pain. Even so, there are times when she finds it can get “really intolerable” Jim Jim mentioned he just keeps “tolerating the pain” Rose Rose feels her tolerance levels have increased. “What I was suffering then, my tolerance level had got pretty high.” and links this with an ability to endure. Rather than take extra medication, “I’ll put up with it.” Terry Terry believes the rise in his tolerance levels are a characteristic of chronic pain. “I think the pain tolerance goes up. You get a better pain tolerance if you are in pain all, or a lot of, the time. And people’s pain thresholds are higher than others, or less than others.” Tom Tom, like Terry, believes his pain tolerance has increased in the face of ongoing pain. “Like, my pain tolerance is a heck of a lot higher than somebody that doesn’t have pain all the time. So you adjust to it.” Spontaneous abnormal sensations, including electric shocks, pins and needles and tinglings, are called paraesthesiae. They are the result of disordered function in the pathways conducting the finer and discriminative aspects of sensibility (Walton, 1985). When they occur in people with lesions of the posterior column of the spinal cord, they may also include a sensation of a tight, constricting band, or a feeling of swelling of the part which is not apparent on inspection of that part. Four of the participants spoke of pins and needles. Jack Jack feels them in his legs on sitting down, with the area going “numb and you can’t move, and you get pins and needles” after which he can’t recommence movement easily. I can’t move my leg, I can’t move, you know? I’ve got to lift my knee over, and the whole of my legs. I’ve got to sort of crawl over to the couch, and get myself up, and straighten my leg out. All this type of nonsense. Jim Jim, as well as a burning sensation, gets pins and on the underside of both feet. Mick Mick gets “a funny type of pins and needles” in the thigh, and in the back of his legs on standing for long periods. “You run your fingers up and it feels all horrible.” Will Will has pins and needles, which can manifest at any time and in almost any part of his body. He describes them as “funny little things. All different places. In my head. In my back. In my legs. Down at my feet.” They are not necessarily stationary in one spot. “The moving pins and needles are a real pain.” The size of the patch varies, as does the time of day or night they occur and the activity he is doing at the time. I’ll get them in the middle of my back. And it will feel like there’s a spider or something walking up and down my back . . . I’ll probably get them when I’m asleep, but I don’t notice them because I’m asleep. But when I’m awake, it just about drives me nuts. They are intermittent. Sometimes I don’t get them for ages. And I’ll just be sitting at home doing something, and my feet will have pins and needles in them, or my arm. Sometimes, when I’m at work, I’ll be walking round at work and get a patch in my head. He has never been given an explanation for these sensations. Four participants experience what they describe as electric shocks. Jim The first symptom Jim mentioned was “mini electric type shock . . . They’re so inconsistent, I couldn’t - there’s no pattern I could put to it.” These have occurred “since about 1986, I’ve had all these episodes, things.” The shocks occur in an upward direction and can be accompanied by unexpected movement of body parts. They are, are something like, in this finger, for example -it is just like a little shock - and it straightens up on me. And the other symptom of it is, you can be walking along, and suddenly you’ll get this sensation, and it shoots right through your body, and your jaw goes [demonstrates jaw clunking shut and chin down to chest]. You feel as if, you know, it travels right up from your feet around, and sort of goes like that and just, and just - You don’t necessarily have it as bad as that. Sometimes, it’s just, you just feel the sensation of tingling going upwards. Always upward.” Mary Mary links her seven and a half year experience of electric shock to her sciatica, which she describes as “like hot, electric shocks down my legs. And they’re continuous. There is no actual break in them, or there’s no cycle.” Tom For Tom, the shocks power through his whole body. They’re like electric shocks through your entire body. Even though I can’t feel below my waist, it actually just locks everything out. It’s like being electrocuted. The pain is unbearable. I wouldn’t wish it on my worst enemy. It’s excruciating. He likens the sensation to that of the dentist touching a nerve in a tooth, but “double it and imagine it running though the whole body, arms and everything.” Tom cannot place a direction on his sensation. He does know when it is coming because it is preceded by feeling “really, really bad. My muscles are spasming and I can feel them going up my back. You know, rippling. Going up my back. And my legs will take off involuntarily.” The shock itself then occurs “like a bang” and locks everything else out. His electric shock sensations are linked to myoclonic spasms that throw him out of his chair. Will Will’s first shock occurred during his myelogram. “It was like something was running high speed up my back, like an electric shock in my spine.” Twelve years later, similar sensations still occur. I can just be walking along and it’s like someone has zapped me with some leads or something. I don’t visibly move. Somebody wouldn’t see me but I can feel it inside me. I’ll just be sitting somewhere sometimes and I’ll jump like I’ve had a fright. That’s the sort of thing it is. It doesn’t blow me out of bed or anything like that. He has no idea of direction of current. “ I’ve never really worked it out.” Numbness is one of the terms commonly used by people to describe a disorder of sensation, and to them it can have many meanings (Walton, 1985), including abnormal sensation, clumsiness and weakness. In this study, it was mentioned by all participants except Mick, and to all those who experienced it, it was related to abnormal sensation. Greg Greg has numbness and funny sensations down the legs, through the muscles, mostly in his right leg. This started right back at the time of his injury and still happens intermittently nine years later, particularly in the thigh muscles, which just “go dead” occasionally. The sensation has also recently started to occur in his left leg. Jack Jack finds sitting leads to his legs feeling numb and tingly so he has to manually move his legs before getting to his feet. This has been a recent, progressive deterioration. Like now, I’ve noticed that when I sit down - as you notice where I’m sitting now [on the floor with his legs tucked sideways], I sit like this because I feel comfortable. But, if I sit here for too long, whereas like, even as far back as six months ago, I’ve had - could move my legs after about say sitting here for about an hour, I could move my legs by myself, now, if I sit like this, in this position, I’ve got to manually move my legs. Because I can’t - my legs go all numb and tingly, and I go all tingly, and no feeling right through my - especially my left leg. He also has an area of numbness in his back that, as mentioned earlier, goes icy cold to the touch. Jane Jane’s numbness is in her left foot “under the ball of my foot and in my toes” which feel “funny to walk on, like you’ve got no foot, that there’s nothing there.” This numbness initially led to problems when she burned her foot several times in the bath, before she got into the habit of feeling the water with her hand instead of her foot. Jim For Jim, from time to time down his right leg it is “as though it’s going hot to cold, then absolutely nothing.” He also gets “numbness in the right arm down to about the elbow.” This feeling comes and goes. “Suddenly you’ve lost the use of this arm . . . it’s a dead weight” and he cannot use it. Mary Mary experiences numbness in both legs, which leads to problems in detecting injuries. It seems like - the pain’s on the inside, but it feels like the outside is numb, like it’s - like a sort of nonsensational. I can even scratch myself or cut myself and I feel very little. It’s as if all the nerve endings have gone. That comes and goes. It’s like a dull, dullness all the time. On the surface. Paul Paul hasn’t “got a terrible amount of feeling in my feet. I haven’t for a long time [and] it’s worse [recently].” Rose Rose’s numbness is in her left leg, which is numb down the outside, and also in her back which has big patches that are completely numb all the time and “never come back.” When asked if this meant she could not feel touch on the area, she disagreed. “It’s a different sensation. It’s like there is nothing there.” The closest analogy she could find was as if a dental injection had put the nerve to sleep. The area of numbness in her leg is “both burning and numb.” Terry Terry remembers the doctor’s concern about the lack of feeling in his left leg. They were concerned about the fact that I had the sciatic pain and the numbness. The lack of reaction to needles and things when they pricked the soles of your feet. I didn’t like it on my right foot but I couldn’t feel it on my left, sort of thing. And still can’t. Tom For Tom, there is now total numbness in both legs. This numbness includes feeling no pain in his legs. After his second fusion operation he woke with “severe numb patches in the legs.” The numbness progressed from losing all feeling from the waist down when sitting for a long time but with a return of sensation overnight, to a permanent loss. Will Will, like Rose, uses the analogy of a nerve asleep at the dentist. He locates the numbness at a deeper level than Mary who describes it as a surface dullness. His attempts to describe his numb sensations have lead to mixed reactions from doctors. Like numb. But it’s numb and pins and needles together. Right. So, is it sort of like that feeling you get when your tooth’s been anaesthetised? You know, your nerve at the dentist? It’s like that. But, it’s like that in the middle. And round the outside of it, it’s pins and needles. Like, when I first tried to explain, I didn’t know how to. If someone asked me if it was numbness, or if it’s pins and needles, I said, well, it’s like both. It’s like there’s numbness in the middle, pins and needles round the outside. And the doctor looked at me like I was stupid. Rose was the only participant to mention this symptom. She did once tell a doctor, who had asked what sensations she was feeling, about it, but it was dismissed by the second doctor present as irrelevant. I said, “Well, it feels like a tight band right across my waist, as if there’s something like a bit of string tied tight.” And he mentioned that to [the other doctor]. And he said, “Oh, don’t worry about that.” were his words. “Don’t worry about that at the moment.” Cramps, spasms, fasciculations and myoclonic contractions. Spasms and cramps play a major part in the symptom experiences of the participants, with different types of spasms and cramps occurring in different parts of their bodies. In association with arachnoiditis, cramping sensations and painful muscle spasms suggest ventral root involvement that may be later followed by atrophy and fasciculation. Painful spasms of the extremities may also indicate spinal cord involvement at a higher level. Guyer et al., (1989) noted frequent cramps or spasms in the legs on activity. Spasms in the back, legs and feet, along with spasticity (jumping or jerking) of the limbs are given as symptoms of arachnoiditis in the Back Pain of America Newsletter (Arachnoiditis: What is, 1996). Paraspinal muscle spasm or contracture and limitation of range of motion of the trunk were considered characteristic symptoms of arachnoiditis by Burton (1978) and by Quiles, Marchisello and Tsairis (1978). Auld (1978) gives a sequence of symptoms that includes cramp: radicular pain - operation - increased radicular pain and severe bilateral leg cramps - temporary improvement - chronic bilateral pain, which he considers indicative of the possible development of arachnoiditis. In this syndrome, severe cramps and spasms in both legs, sometimes accompanied by fever and chills, begin on the first, second or third post-operative day and last for four to twenty days. There is usually some improvement but then signs of chronic arachnoiditis develop over the following months or years, with new neurological deficits and relentless bilateral back and leg pain. Myoclonic spasms are experienced by one participant, Tom, who calls them “ironing board spasms” in which his whole body arches back and actually throws him out of the wheelchair, as if he is having an epileptic fit. “When I ironing board, that basically takes the whole body. It actually throws me out of the wheelchair.” These spasms are extremely painful, so much so that, although fully conscious at all times, Tom cannot talk because of the pain. He can only hope that someone familiar with his needs will put him in the recovery position and stay quietly beside him until he is well enough to be assisted back into his chair. Jim The muscles in Jim’s lower leg are always in motion and both he and an observer can watch as each muscle successively tightens and relaxes, following a circle around his lower leg. “It’s always in spasm - I could pull them up [trousers] and you could just watch it happen right now.” He did so, and each muscle in turn visibly tightened and relaxed in a continuous circle around his lower leg. The associated pain varies. On the day of interview it was “acceptable, you know, ... but sometimes it starts going like this, that can get more - it can do it much harder and closer then, where you’ve sort of like pulled a muscle.” This can become severe enough to be cramp-like in intensity, and can wake him “in the middle of the night for no reason. You’re doing absolutely nothing, you’re asleep and suddenly you wake up with it.” Known as fasciculation, this phenomenon usually only involves individual motor units in a muscle, but when associated with compression of the spinal cord, ventral roots or anterior horns of grey matter, affects whole muscles innervated by the affected segments (Walton, 1985). Six participants noted muscular spasms, in various areas of the body. Jim Jim experiences periodic, very painful spasming in the back of his neck. It interferes with his range of motion, so he cannot turn his neck far enough to reverse the car. He describes it as ‘locks up from time to time’ and he must hold his neck “just so” and manoeuvre it around to keep it out of spasm. Mick Mick gets jumping spasticity in his legs when he sits down; this is not a bother when he is walking around. He links these jumps to his “nerves playing up.” He does not describe them as cramp, nor does he mention pain as part of the sensation. Rose Rose’s lower limb cramps have also been described under the section on pain, because she links them more to pain than to actual cramp, as they are more a sensation than linked to apparent spasm. Her muscles feel as if they are cramped, but there is no visible evidence, such as lumping of the muscles, and the muscle tissue is relaxed on palpation. Lying on her right side worsens it, and the area goes completely numb as well. If there is any pressure on the bowel, the cramping, along with the burning, becomes a lot worse. Since she is prone to constipation and must take laxatives regularly, this is a considerable problem for her. In fact, she rates cramp, along with the burning, as her two major problems. Rose expresses a great deal of anger about this cramping sensation, as she links it to two epidural Depo-Medrol injections. “The pain at that stage [the first epidural injection] was the first time I’d ever experienced the cramping. I couldn’t move my leg, it was just cramped.” She was particularly angry about the second injection, as she feels that if the specialist who administered it had read the Adverse Reactions insert he would have seen that cramp and bowel and bladder dysfunction were known side effects and not given that second injection. “Now, if he’d gone back and looked at that, he would have found it, and I can’t see why he gave it to me again.” Three months went by, during which medication failed to relieve this cramping pain. “The pain was so severe and I’d gone from before that injection, I’d gone from just Panadol and they’d actually put me on Valium and Actopen.” She then had a laminectomy, reporting that the surgeon who performed it told her, it’s the one thing it would do, would completely get rid of the pain in my leg. He could more or less guarantee that. And yet when I come out of theatre they had to get hot water bottles on my leg. Every part of my leg felt, just the cramp was so bad. And I thought, “Oh, oh, hasn’t worked.” Terry Terry, like Rose, links his cramp to pain. For him, it comes on after walking, and is felt as a burning cramp across the middle of his upper back, in which the muscles actually get gradually tighter and tighter. He found there was a paucity of words to describe the feeling. “ Oh, it’s really hard to describe it. It’s not like any other sort of pain I get. It’s just a burning, painful sort of cramp sort of thing.” In his job, he was well acquainted with burns and scalds and was able to state clearly that “ it’s not like a scald burn or a hot touch burn. It’s a big, a general pain. You know, like a crampy, burning sensation that just sorts of locks up your whole upper back.” To him, it feels as if it comes from the muscles into the spine and also spreads out over the back but does not spread round to the anterior ribs. Tom Tom, as well as his “ironing board” spasms, experiences chronic spasming that started at the time he lost all the feeling in his lower limbs and had to go into a wheelchair. These spasms radiate up, not down, his back and have an icy burning sensation to them. During them, his back muscles all “knot up” and actually “visibly protrude.” It is difficult to know whether these back spasms are part of the pain-spasm-pain cycle, or directly linked to neuropathic changes. He also has uncontrollable leg spasms that occur when he has “overdone” things. These spasms alternate with his legs being completely “floppy.” In association with electric shock sensations in his body, they make him feel really, really bad. My muscles are spasming and I can feel them going up my back. You know, rippling. Going up my back. And my legs will take off involuntarily. And I know I’ve got to turn round and tip back and try and ease the pressure. Or it’s going to get worse. But sometimes I know there’s nothing’s going to stop it. On being asked how he kept himself reasonably safe when he knew such spasms were going to occur, he reported that he stayed home if he was feeling really bad, although “couple of times, it’s caught me off guard.” Spasming has caused problems with further MRI tests, because he cannot lie on the bed without sedation. “It’s too hard and it’s painful and it puts me in spasm straight away.” This led to his refusal to have another MRI recently, a difficult decision in view of his worsening thoracic symptoms. Will Will’s spasms are different again to those of the other participants. Some mornings, he wakes with his hands clenched tight shut and “all pins and needles.” His legs feel the same from the knees down. I just worked on it for a while until I got my hands open. And then worked on my feet. And then I got out of bed and it was all right.” He has “had a lot of that, of late, where they’re clamping shut.” His doctor told him he had poor circulation, but he disagrees, as he has no coldness or colour changes in his extremities that would support that diagnosis. The squeezing, cramping pains he experiences in his chest began immediately after his myelogram, in which metrizamide was used. These cramping chest pains have occurred intermittently since that time. In his back he feels as if the paravertebral muscles in his upper back are being squeezed. He describes it thus: “sort of the best way to describe it is, it’s like being in a vice and somebody’s doing the vice up. And it just gets tighter and tighter. And then they’ll just go away.” These sensations can occur at any level in his spine or neck and also as headaches. He has no explanation for any of these symptoms, except that they are “not due to arachnoiditis.” He links the sensations to pain and does not use the terms ‘spasm’ or ‘cramp’. Five participants linked their falling to arachnoiditis. Of the others, Terry and Will’s symptoms occurred after falls but neither have had falls as a result of their symptoms. Greg, Jim and Mick did not mention falls. Jack used to have falls but does not at present. In those who do fall there were indications of power loss, or motor weakness. The collapse tended to be sudden and in two resulted in further injury. Jack Jack does not have problems with falling now but did when he had his first injury, which was eventually diagnosed as a bone splinter pressing on the cervical cord. He was having dizzy spells and falling over as he collapsed. He is rather bitter about this because nobody believed him when he complained of these symptoms. And they were telling me that I was, the doctor was telling me, I was a thirty year old man, that I was overworking, and I worked myself too hard. I’d built myself a home and uh, spent too many hours working on the weekends. And I had [a seriously ill child] and that was causing the stress and that was causing the dizzy spells and headaches. Surgical removal of the bone splinter alleviated the falls. Now, despite constant numbness below the knee in one leg, he has no problems with walking and falling, although the potential is there because, increasingly, he has to manually move his legs after sitting down for a period of time before he can move freely again. Jane Jane sometimes just feels “that my legs aren’t going to hold me and I’ve had several falls. Falls, you know, I don’t know why. And I just feel that something’s not holding me there, and I just go.” Jane has the distinct sensation that the loss stems from her back. “It’s my back. There’s no power to hold me up, no strength, that’s the word, no strength there to hold me up. All of a sudden, I’ve got no strength.” She does not get sufficient warning to protect herself, and has sustained significant damage in a recent fall. I fell out the back door, June last year, and I’ve done quite a bit of damage to my knee. I’m waiting to go and have some surgery there. I had no warning that my back was not going to hold me up to get me down the steps. This knee injury has had a flow on effect in that it severely limits the cycling she does on her exercycle to relieve her sciatic pain. It is her left leg that gives way and she has had to learn not to step out on her left side. “If I step out on my left side, I’ll go. And it has happened quite regularly.” Matter of factly, she added, “But most times I can pick myself up very quickly and keep going and not be hurt. But I have been hurt several times.” Mary For Mary, both legs suddenly and unexpectedly go numb and give way while standing, and she falls. She used to fall over things left on the floor when her children were younger, because she could not look down. She had “a bad fall in November. My daughter has got a shop and I fell down the back steps” which significantly worsened her pain. “It just sort of exploded from there.” Paul Paul’s only symptom was a sudden lack of strength, which causes his legs to suddenly give way, necessitating the permanent use of a walker frame. Just basically, I’ve no strength below my knees. That is the main thing, and that, of course, affects my mobility and my balance. I’ve no balance. If you stood me in the middle of the floor there, well I don’t know whether I’d fall over, but I’d certainly be rooted to the spot. Paul was puzzled that there was no obvious reason as to what might have initiated this lack of strength. I hadn’t had a stroke or a bad fall. I’ve been very careful right from day one, really, . . . about how I went and I’ve never had, well, I’ve had a few tumbles on the grass, but I haven’t had a bad fall, you know, that might trigger this, so I can’t really account for why this sort of happened. And, as I say, that was back in March, which was four months now. It was his daughter who insisted that he get a walker because, even with a walking stick, he still wasn’t able to move round comfortably and yet be supported when his legs suddenly wouldn’t hold him. Rose Rose feels her power loss occuring between her hip and the back of her knee and doesn’t think it is the muscle. She describes it as a “weird feeling” in which she “will be walking, and suddenly my leg just seems to give way, and no weight can be put on it.” She must then grab something or, if nothing is handy to hold on to, very slowly see if the leg can take the weight. There is a great deal of pain with this for her too, and sometimes the leg is so bad it cannot be moved and she must call for someone to bring crutches so weight can be taken off her legs on to her arms. Tom Tom is now in a wheelchair, but his motor paralysis began as falls. “I started falling. I was originally on crutches. I’d be walking down the street and - using my crutches - and then, suddenly, I’d be on the ground. And everything had just given way.” He tried to rationalise these falls. “I couldn’t figure out why. I thought I was being clumsy, to start with. Tripped on a crack, or something like that.” These falls led to a specialist visit and an unwanted outcome, the use of a wheelchair. “And every time I went down, just about, I broke a pair of crutches. And ACC were getting very annoyed. And I went to see the specialist. And he ordered a wheelchair for long distance.” It was “about two years after that last operation [second spinal fusion] that I started falling and ended up where I am now [in a wheelchair].” His problems have compounded recently, as his arms have suddenly started giving way when he uses them to throw himself into and out of his wheelchair. His first interview had to be postponed because he fell getting in to his chair that morning. “Just as I shoved, bang. And I bit the dust.” Five participants used the word fatigue in their descriptions of their symptoms Jack Jack spoke of fatigue as the worst of his symptoms. The worst thing is the chronic fatigue. It’s quite bad. I mean, I can sleep. I can go to bed at 11 o’clock at night - if I’m lucky to get to sleep at eleven, and, you know, I’ll have an unbroken sleep all night and then get up in the morning and I’ll like to go back to sleep. And it’s not that I’m a lazy person. It’s just that I’m so tired. And I don’t know what to do about it.
He described this tiredness as through his “whole body. A just tired feeling right throughout my body” associated with a feeling of heaviness. Although not constantly present, this feeling requires prolonged rest. It’s not all the time. It’s like, umm, if I can have 16 or 18 hours sleep, and the next couple of days I’ll probably feel really good, and I’ll be back to normal. But then it’ll slowly just drain me again. He has felt like this for the last three years and it is gradually worsening. Jack is unsure what to make of his fatigue. Plus the - like, I’ve got the pain with it, but I don’t know whether, you see, I’m not sure whether what’s happening to me is the result of the injury, or the operation, or is a subjective thing. I don’t know. Because I don’t know how to tell the difference between what’s been the result of the operation and what’s the result of that dye being injected into me and just getting old and getting tired. I don’t know. His doctor has diagnosed him as having “ME” [myalgic encephalitis] and he has other symptoms that accompany the fatigue. “I’d get, sometimes I’d get a feeling of unwellness, sort of - temperatures, just not feeling well” during which his glands are swollen in his neck. The doctors have given no explanation for these symptoms, nor any treatment. Jack doesn’t “know how you get it. But they actually said I had it. And I asked them if there was anything they could do, and they said there was nothing much that they could do.” He finds it one of the most difficult aspects of his situation, because his wife cannot understand his need for sleep. I can’t do the things I used to be able to do. And she can’t relate. And she can‘t understand why that, if I go to bed and sleep for eight hours, that I should have to go back to sleep. She thinks that I’m a bit lazy.” Despite the limitations of his fatigue and pain, he coaches children’s sports and has slowly renovated parts of his house. I mean, a lazy person wouldn’t have done this [referring to newly extended and decorated room]. I mean, it’s taken me months and months. But I’m really fussy and I do a lovely job. Jane Jane also has a diagnosis that connects her tiredness to a disease other than arachnoiditis. “I have fibromyalgia, too. And that comes with fatigue. And the pain from the shoulders and things. That’s all contributing. That makes you awfully tired.” This fatigue has developed since her back problems began, and she was diagnosed with fibromyalgia three years ago. Jim Jim has no medical explanation and relates his fatigue to the effort of living with his pain. I’d call it fatigue, which is arrived at through the pain and the physical effort required to keep going with the ahh, the strain of it all. It’s just tiring, simply tiring, you know. Even putting on a brave face. You know, you get home and you go ohhh (relaxing down), you know? And you’ve kept this face going - I’m fine. You know? You’re not fine, but you can’t explain it to everybody. This fatigue requires frequent rest. “If it gets that bad, I have to take time out and lie down and that can be anything from an hour to three hours, two or three times a week, perhaps, yes.” He had driven for an hour to the interview with an awareness that “Tomorrow will be the effect. Some of it will be now, but the majority of it will be upon me tomorrow.” This was his choice because he had another meeting to attend after the interview. “But I don’t mind that, because today is - you know. I know that I don’t expect to do anything after having done this [attend an afternoon meeting].” This careful balancing of activity with the opportunity to rest has become his way of living with this symptom. That’s basically how I try and do it so that, umm, at least I can try and achieve something. Totally half negative all the time, if you like. It’s better to be - try and get a bit of positive. Terry Terry links his tiredness to the effort of living with pain. He works part-time and does most of the housework, as his partner is also unwell and cannot manage it after her full-time job. Terry knows he has “a certain amount of things [to do] and I do them.” Like Jim, he has a limit to how much he can achieve, although his absolute need for rest comes on the same day, rather than the next day. At 2 o’clock, things are slowing down for one reason or another, The jobs have sort of been done, and I guess it’s that thing, when you sit down, it sort of washes over you. You know? You think, I really need to sit down. I sit down and then I’m, phooff. I mean, I can sit in the chair in the lounge and sleep for 20 minutes, at that sort of time. He likened this need for sleep at one point in the interview to a sudden switching off, rather than a gradual tiredness “Just switch off the lights.” At another point he likened it to a wave. “It’s just like a huge wave that just comes over me. Like, I’ve just got to feel that I’ve absolutely run out of every sort of energy that I’ve got.” He sees an interconnectedness between his fatigue and the pain he has, but he is unclear as to the interplay between the two. “It’s not something that I’ve actually put together . . . it’s maybe the pain that’s worn me down to that point. I’m just tired of dragging myself around, yeah.” He has found that allowing for that sleep, when it is needed, makes a difference. Like, about 2.30 - 3 o’clock, not every day, but some days, I go and lie down, and I’m probably asleep for 20 or 40 minutes. And that time just goes in an instant. It’s a really deep sleep. And that actually gets me through the rest of the day quite well. Will also struggles with an overwhelming fatigue that is more than just tiredness. There are various aspects to this fatigue. He finds he falls asleep without warning if he sits down. “If I get home from work and I sit on the couch . . . in about five minutes, I’ll be asleep.” He has not been struggling with tiredness before this happens. “I’ll be walking around, running around. And as soon as I stop, as soon as I sit down, I’ll just go to sleep.” On being woken up, “I’ll just get up and walk around and be as good as gold.” These sleeps don’t prevent a deeper fatigue that also troubles him. He describes a weariness and a heaviness in his limbs. Fatigue affects activities he used to do without a second thought. Like I, because we’ve got a baby at the moment, I’m going to [the supermarket] and getting groceries. After I’ve done about two aisles on a Thursday night, I feel like I’m dragging myself round the rest of the shop to get to the other end. Will, who is only in his mid 30”s, went to the doctor about this tiredness because he felt it was abnormal for his age and desired activity level. “When I was under Dr X, I went to him lots of times because I thought I was tired. But he didn’t do anything about it. Didn’t know what it was.” He has accessed his medical notes from that time. “I had a look through all my old medical notes and things. And it’s got, ‘tired, thinks doing too much at work’. Or ‘tired, no explanation’, ‘Tired’.” He feels his other symptoms are worse when he is feeling so tired, but is unable to remedy this tiredness by going to bed earlier. When I go to bed, I’ll go to bed at midnight, then I’m tired. If I go to bed at nine o’clock, I’ll be in bed for an hour and I still won’t be asleep. And I’ll be wriggling around and getting up and getting drinks of water and walking round the house. Being busy at work can also make things worse for him. “ If I’m not real busy at work and doing a lot, I’m usually pretty good.” This fatigue is not because of pain, which Will does not rate as his worst symptom and which has not interfered with his life as much as the fatigue. I’ve not had a lot of days off work with the back pain. But I’ve had days off work, where I can’t get out of bed. Too tired, yep. Can’t even open my eyes. Usually, it’s, luckily, it’s been at the weekend. Like I’ve had a Saturday and a Sunday and then it’s been the Monday as well. He still doesn’t have a reason for this tiredness. “Whatever it was or whatever it is, I didn’t have any other symptoms.” He does, however, have unexplained swollen glands, healing difficulties and other symptoms that are similar to those of ME. Three participants, all of them men, mentioned problems with excessive perspiration. Known variously as hyperhydrosis, hyperidrosis or polyhydrosis, excessive perspiration is indexed in Walton (1985) under ‘sweating, excessive, post-spinal cord lesions’ indicating that knowing and searching for the technical terms in an index can be misleading. Disturbances of sweating mechanisms are considered rare after partial cord lesions, except in syringomyelia, a recognised complication of arachnoiditis. Usually, loss of sweating may occur when the sympathetic ganglion cells in the lateral horns of grey matter are destroyed (Walton, 1985) but excessive sweating may also occur, sometimes spontaneously and sometimes excited reflexly when the person eats hot or highly seasoned food. None of the accessed literature on arachnoiditis mentioned sweating problems. Jim Of the participants who linked undue perspiration to arachnoiditis, Jim has irregular, unpredictable, drenching night sweats. The perspiration is colourless and does not stain his clothes. “You can feel the water running off, you are sweating so much ... In fact sometimes I have to get out of bed and put a towel down for it - because I freeze after that.” The other two share a phenomenon that had also come to light amongst those contacting WDRC over the last few years - bright yellow colouration of their sweat. Jack Jack had previously only sweated during heavy physical exercise, like rowing and rugby, but since the injections has sweated out a yellow substance, particularly from the axilla area. His perspiration is “an absolutely bright yellow... Since I’ve had these problems, being related to the injections or not, or the operations, I’ve sweated out yellow substance out of my body.” He has not noted any particular odour to it. He was, however, sufficiently concerned to seek medical advice. “I have actually taken shirts to the doctors’ and actually showed them, it’s been so yellow. I mean, if it’s a white shirt, it’s been absolutely bright yellow, coming out.” His perplexity was not resolved and he is left wondering. I used a little bit of deodorant for years, but never, ever, ever, never, ever, ever come across this. And since I’ve had - you know, well, I can’t relate it to the dye, because I don’t know whether it’s the dye. I don’t know whether it’s the food I eat, or age. I don’t know, I don’t know. All I know is, all of a sudden, I started, umm, you know, like with all these problems, you know, getting rid of this stuff out of my system. The perspiration is sometimes accompanied by feeling unwell. “Sometimes I’d get a feeling of unwellness sort of - temperatures, just not feeling well. And sort of, nothing I could describe” accompanied by swelling of the glands under the neck. This, coupled with his extreme fatigue, has led doctors to give him a diagnosis of ME, but with no explanation as to why he might have it, or why his perspiration is yellow. Will Will is also puzzled by a similar strange symptom. When I sweat, which I do really often, anything that’s white, turns yellow. Like, if you look at our bed at home, it’s not hard to see which side I sleep on. Because it’s got a woolrest on it and it’s yellow on one side . . . It’s like iodine kind of yellow. Onset is unpredictable. “It can be, like, I don’t even have to be hot. Like, well, it can be a cold night, and I’ll start sweating real badly.” He is not sure how long this problem has been with him and measured the time in relation to how long the bed mattress had lasted. “Oh, I don’t know [how long he’s had excessive sweating]. The bed we had before the one we’ve got now had a foam mattress on it, and the foam mattress fell apart. It went rotten.” He is pretty sure either he or his wife would have noticed and commented if it had been happening before the injection. “I don’t sort of remember having it before I had the injection. I don’t remember having it before then but I really don’t know. Yeah. I would have noticed.” For him, sweating is also a warning sign that he is running out of steam. First of all I start to sweat, even if I’m not, you know, it’s not a hot day or something, I’ll start to sweat. And then I’ll get a sore chest. And then I know it’s time to stop . . . My chest gets really tight. I don’t cough or anything. I don’t sneeze. I just get a really tight chest, so I stop straight away. He has had his heart checked for problems and has no explanation for these symptoms. His wife tells him he smells funny “But she nevers says, like, what it smells like. Because I’ve said, “Oh is it grease?” and she says, “No. It isn’t grease, it’s different. You smell of something different.”” He works with machine oil, so she is used to that smell. While he links it to iodine, he does not know if that is the smell. “I don’t know what iodine smells like.” He no longer wears any white clothing. “I used to wear white T-shirts. I don’t wear white, I wear all dark coloured T-shirts now. Don’t wear any light colours.” He has spoken to fellow sufferers from other parts of New Zealand who contacted him. One has “ got all the same things that I’ve got. He sweats real bad.” This sweat is also bright yellow and “ he didn’t relate the yellow sweat until I said to him. And his wife also notices the smell . . . I must have talked to him about the smell because his wife said he smelled funny too.” Another man he spoke to “ was a business man, and his shirts were all going yellow. And his wife was accusing him of all sorts of stuff, getting yellow stuff on his shirt.” There was a sense of shared embarrassment, relieved by hearing that another shares the problem. “It was brought up at one of the meetings I went to. I didn’t bring it up, some one else brought it up. And he was really embarrassed about bring it up.” Interestingly, at a recent arachnoiditis group meeting to which the researcher was invited, one lady asked another whether she had just got out of the shower or whether her wet-looking hair was due to sweating. Embarrassment turned to shared relief as three other ladies, including the questioner, said they had the same problem. Two were on medication for it. Three had cloths with them to constantly mop their brows. One mentioned that she often felt that water was running down her legs. Another noted that any uncovered areas perspired. Her doctor had said it was because the nervous system was too active and set off the sweat glands. These ladies had all had metrizamide and attributed the onset of their sweats to its use, since they had not had any problems before and were too young at the time of onset to link it to menopause. One of the study participants then commented that she also had that symptom but had not mentioned it at interview because she did not think it was anything to do with arachnoiditis. All agreed that they found it very embarrassing and that it, on top of the problems relating to pain, further limited their desire to go out in public. Four participants, Greg, Jim, Mary, and Terry had ‘depression’ and had been prescribed medication for it. Greg is not at all surprised that he has depression. I’m suffering from depression because I’m probably dissatisfied with my life. I wasn’t getting anywhere. And then the back injury sort of came up and became a major problem. But the back injury and being off work for so long is not terribly conducive to a happy and settled state of mind. That’s for sure. He alternates between getting “very, what’s the word, self-centred, or something, and feel miserable and sorry for myself” and looking round and recognising that there’s people a hell of a lot worse off than I am . . . There’s too much to do. You can’t sit round all day moaning about what you haven’t got and all your injuries. It’s best to get out and do something. He takes medication for this depression. I think it’s a fairly mild antidepressant. And I’m taking them for depression. I appreciate in some situations they use antidepressants to relax the muscles as well. But mine are antidepressants and I’ve been on them for, before this [any knowledge of arachnoiditis] came up, two and a half years, I suppose. And I can appreciate I’m probably going to be on them for the rest of my life. He is unsure if this medication actually makes any difference to his depression and considers it as “just another medicine that I take, basically.” Another participant with a diagnosis of depression is Jim. His diagnosis creates problems for him as he feels it was considered by some health professionals to negate any other symptoms that he experienced and sought help for. His physical symptoms were “attached to the depression, blaming the depression.” He had just been through a marriage break-up and acknowledges that this was a factor in his depression. He also found the loss of his career depressing, as he had held an important and well-paid job prior to his back problems developing and his symptoms have deteriorated to the point where he is now considered by ACC to be unemployable. Like Terry, he sees a linkage between living his life with the disabilities associated with severe pain and being depressed. He recently went overseas and noted an improvement in his depression. “Now I’ve come back, I just feel as if I’ve gone totally backwards and that’s a bit disheartening.” What he vehemently disagrees with is the implication that his pain is due to the depression. The ironic thing for Jim was that he had a diagnosis of arachnoiditis all along, but was not aware of it. Originally diagnosed in England, he brought copies of his doctor’s notes to New Zealand but did not read them until recently. It was then that he discovered he had been diagnosed as having arachnoiditis back in 1989. No-one made a similar diagnosis in New Zealand. His back problems seemed to him to have been discounted whenever he was receiving any other treatment. He was initially given Valium which, he feels, did no good and caused him problems in discontinuing its use. He has also had extensive therapy from psychologists and mental health personnel but has not found that particularly helpful. They haven’t got the time . . . they seem to make a quick diagnosis [of what he was never quite sure] and “How are you?” and, “ OK, fine?” and, “Do you need another prescription?” Basically, that’s how it feels. An extremely low point in his life saw him go to a unit for what he thought was rest and relaxation, so as to give his wife a spell from looking after him. But it turned out to be the psychiatric department. And, of course, there were so many other patients there which were, oh, so bad, you know, we - and - that was - I mean they - the back was not - I was not in there for treatment of my back or consideration of my back at all. They were concentrating purely on my head. The times that they did pay lip service to the pain etcetera I was basically laughed at and told to move. He remembers the staff as extremely unhelpful and eventually, unaware that, as a voluntary admission, he could have just discharged himself, determined to play things their way. I organised within myself to get out of there. That place . . . by saying how much better I was and that, yes, yes, I fully understand now where I went wrong, and that sort of thing. I promise, you know, that I’m OK, and all that sort of thing. It took me about ten days, I should think. Mary has had problems with depression, mainly in the last year, coinciding with a marked deterioration in her physical condition. She links her depression to “the way that it has been” for her and feels her outlook on life at present is affected by the depression. She worries about how much worse she will get, but does feel the medication she is on has helped a lot with the depression. Terry experiences intermittent depression. “At the moment, no. But I’ve got Prozac, Serapax, something like that, in the cupboard up there . . . I do get depressed.” He has given some thought to the reasons for these depressive episodes and sees positive benefit from medication, which he requested from his doctor. I don’t know why it comes on. Perhaps there’s a propensity to move into that sort of thing as part of my nature. I don’t know. But I certainly feel I know when it’s starting to come on. I feel very down. I feel like the pain’s getting worse, and bits and pieces, and I actually asked the doctor for the antidepressants, because I read somewhere about it being a part of pain management or pain control. And we tried it and I certainly had an improvement in my, by lifting my depression, the pain didn’t seem as bad. He, too, sees the pain he experiences and the depression as interlinked. “I think it’s a grinding down of your everyday sort of [resources]. You know, you’re sort of battling the pain all the time.” Being depressed was seen by participants as distinct from depression. Being depressed was considered a human response to their situation, whereas depression was a state that came on unbidden and was not removed by actions of the participants. Jack Jack found the terminology used by health professionals confusing and unsatisfactory. They used to say to me, “Are you depressed?” and I used to say, “ No, I’m not depressed.” But I used to say, “I don’t know what depression is.” And I used to say to them, excuse me [aside to researcher] “I’m pissed off. I’m really angry and I’m pissed off, but if that’s what you guys call depression, then I’m depressed. But I’m really angry that I’m not well.” Rose Rose rejects a diagnosis of depression but finds life very depressing at times. “It’s not depression. It’s not that at all. but you sort of think there’s got to be something better out there, than to go on for the rest of your life like this.” At this point she became rather weepy and, on being asked what she usually did when she was feeling down like that, said she would “just spend the day crying.” unless someone happened to distract her in some way. “Somebody will ring me up” She does not have an active strategy herself. No. There’s no one here I can ring. So I just shut myself in my room [and cry]. And try and sleep. And sort of wait until the night pills are due. And if that doesn’t do anything, well - another bad night. Doctors have tried to persuade Rose to take antidepressants but contact with others on antidepressants and dissatisfaction with relationships with the doctors concerned influence her attitudes to medication. “He [specialist] sort of said, he wanted me to try Amitriptyline and I said no. And he actually wrote in the report that I’d had it before. And I’ve never, ever had, and he knows that.” She was unclear whether this was intended for pain management, or for management of depression, and ultimately refused it because she had “seen other people, what dosage they’re on. And they’re just like zoombies” and told the doctor, “My body’s pretty well packed up. I’m not having my mind go as well.” Tom Tom’s experience is recent and depressing, but not called depression by him. It relates to having recently found out for certain that he will never walk again. “I’d really build my hopes up. When I got the phone call [from ACC], I must admit, I really broke down. It just knock me and still does at times.” The method by which this information was broken to him appears to have had a major effect on his reactions and he repeated the point later in the interview. “Just to be rung up like that, that threw me. And it still does.” He had been told that his paralysis was psychological and he had actually hoped that was so and he would be able to walk again after appropriate psycholgical help. He had said at interview that he was “adjusting to it” but “it’s had a very bad detrimental effect.” Tom is not on antidepressants and has not had “any counselling ... all the way through.” Two participants, Will and Jane, did not mention either depression or being depressed. Of the other two, Mick gets “a wee bit down” but likes fiddling around and making things, so he usually gets out and “mucks around” to keep himself occupied until his mood lifts. Paul, when his lower limb weakness first began, “wasn’t depressed. I don’t suffer from depression, but I was a bit taken aback.” Now, he feels that, in the absence of any pain, things are not actually much different to what he expected life to be like once he was retired, anyway. Perhaps it’s all my lazy genes have come to the top. I’ve quite accepted, you know, I’m quite happy. I do a lot of reading, which is a great - especially in this sort of weather, it’s pretty easy to settle in with the radio and a good book. Suicide is a recognised outcome of arachnoiditis (Guyer et al., 1989). As with depression, there is a differentiation made by participants between two aspects of the same symptom, being suicidal and having plans to commit suicide. The former is seen as undesirable, linked to depression, and requiring treatment. The latter seems closer to euthanasia, a total method of pain control if pain ultimately becomes unbearable. Although the participants who spoke to this subject said they did not mind if small sample size, and the fact that most of the participants know each other, meant they could potentially be identified, the researcher made a decision to further protect anonymity by not using any names for this section. The guide questions did not directly seek to ask participants if they were suicidal. Suicide was mentioned spontaneously by four participants. For one, it was part of their past, before their surgery, at which time alcohol was also a factor in their pain management. It was not a consideration at the time of interview. One participant spends long periods during extreme flare ups of pain feeling actively suicidal. These feelings are seen as quite distinct from depression and this person does not see themself as depressed. Two other participants, while they do believe they also have problems with being suicidal because of depression, see the two as quite distinct - suicide, referred to as euthanasia by one, is a future option for pain control, not an outcome of depression. As one put it, “I don’t see how it [euthanasia] can avoid being there. Because you get to the point where you seem to be fighting survival on every front. There’s no ease for what you are dealing with.” For the other, it is also constantly there. “It’s something that’s constantly in the back of my mind and I thought that if I ever got to the point where my strategies don’t work any more, that’s an option I’d seriously consider.” Accordingly, plans have been made. I know what I would do and how I would do it. So I’ve actually got a strategy that I’ve got in place now, that I think that if I got to a point that I thought it was not going to improve any more, or that I felt that my quality of life was such that I can’t be bothered any more, I would use it. Both these participant’s views seem to reflect the sheer effort they have to daily expend on coping, so they see suicide/euthanasia as a choice for the day when they just cannot live with their situation anymore. Up until now, there has always been that ‘tomorrow might be better’. But if it got to a point where tomorrow and the next day and the next day aren’t, well, probably over a period of time, I would certainly consider it a serious option. It is this coolly planned, long-term aspect that seems to distinguish this kind of suicidal thinking from that linked to depression. At the same time there is a recognition that suicide seems more desirable at times of depression, and that this kind of thinking is not the same as that of suicide as a clearly planned choice for the future. “I think that’s [suicidal desires] probably one of my alarm bells, and I go on the Serepax, or whatever” This takes about three days to ‘get back up again’ with the danger point for suicide being seen as ‘those first couple of days when I actually accept that I need to take [the medication].” All have children. Two of the three have close family and partners. One has found immense strength and support from that partner. “If it wasn’t for [x], yeah, I wouldn’t be here now. [x] is my life. Even for the [children’s] sake, I still wouldn’t be here. I must have met [x] at the right time.” The other feels an ambivalence about the whole complex integrality of family and self. . . . the other thing that keeps you from doing that, I guess, isn’t only the hope that the next day might be better, or whatever. It is the effect it would have on your family ... And I actually feel a bit angry at times about that ... What would they think? How would they be left? And it annoys me, because those attachments are still there that prevent you from doing your own thing. The third has no close links with family and few friends of long standing close by. Support during depressive suicidal thinking is therefore not readily available. This person copes alone until “Finally, I have to pick up the phone and phone [overseas]. A very good friend of mine over there. That’s as much as I have.” Support from health professionals has not altered their views. One participant did approach a general practitioner about his plans. The doctor opted not to handle it herself. She sent me off to talk to someone about it, but that was some time ago. And because it’s never come up again, she’s never mentioned it, so it’s probably in the too hard basket. If you’re not talking about it, it’s not happening. One participant felt if would be impossible for a support worker to know when to be worried as to the actual risk of suicide at any given moment. Another, during discussion concerning the warning signs of impending suicide, commented “I’m smoking [figuratively], because I’ve actually given a lot of stuff away. I don’t know if it’s for that reason. It’s just happening. Why it’s happening, I don’t know, but that’s what’s happening.” Despite these current feelings, euthanasia is still “in the future. But not at the moment” for that person. Interestingly, all three of these people have current input as support workers, where they deal with people who are suicidal, and two have had some training in working with suicidal people, through Samaritan’s courses and counselling courses. When I get a case like that, I always ask the person’s permission, if I think it’s really desperate, if I can, if they will ring the field worker in the area. And if they can’t, I ask their permission for me to ring them. And I do. I get in touch with them. However, they do not appear to have the same strategies in place for themselves, when actively contemplating suicide, as they try to put in place for those they support. One participant does not consider actively ringing someone as an option, at the same time welcoming calls from others if they happen to ring. This person sees a need for a much more active counselling role in pain management, especially for the crisis situations. Mary Mary has serious incontinence. For three years she has had to “ catheterize myself every four hours, and wear an incontinence pad all the time” She takes enemas every second day because of “Just having no idea when I need to go, having no sensation of needing at all.” The bowel problems developed two years ago. “That sort of came later.” Since the fall that occurred between interviews, she has had a worsening of her bladder incontinence. “And my incontinence has completely gone. I get no warning at all, nothing.” Accordingly, she has had to increase the frequency of her catheterizations to six times a day. Paul Paul is aware, through his doctor, that these problems can occur, and is grateful that “that’s never been a problem, so that’s another thing to be thankful for small mercies.” Rose Rose finds any pressure from her bowel makes the burning back pain worse and her leg cramp really badly. “I know if there is any pressure on my bowel, the burning and the pain is a lot worse. That makes my leg really cramp badly, so the bowel has a lot to do with it.” To try to prevent this she “takes laxatives all the time. And if they don’t work, or if they work too well, the problems still there either way, so . . .” Tom Tom, at the onset of his paralysis, lost both bowel and bladder function. At that stage, I’d lost my bowels as well, and bladder. And that was a new one for me, because I’d never had that. I was having problems going to the toilet. And I was having to pound my bladder to make me go. But I hadn’t had any problems holding it. Like, I knew when I wanted to go. I couldn’t start it, but I knew when I wanted to go. And I wet myself and everything. And I couldn’t figure out why. He was in a rehabilitation unit at the time, and still remembers the fear and horror he felt when he wet himself and had to be changed by the nurses. He currently has no problems with incontinence, provided he is able to get to the toilet quickly and regularly. He also gets diarrhoea, despite medication designed to prevent it. I don’t get constipated. Even with the drugs, I don’t get constipated. My problem is the opposite, diarrhoea. And I haven’t been able to stop it. I’ve used bulking agents, and everything, and it doesn’t seem to work. So what I’ve done is, I’ve made a regimen and I go the same time everyday. And I sit there and I press. Tom sometimes has “help” from an enema, which clears his bowel out and improves the diarrhoea. It was unclear from the interview whether this diarrhoea is due to constipation with overflow or to abnormal frequency and liquidity of bowel motions. Two of the male participants had problems with impotency. One participant had been told the “message was not getting through.” This, not surprisingly, affects his “marital relations.” One female participant mentioned problems with sexuality, including being told by her doctor of the time that she could expect her husband to seek his “gratification” elsewhere. Will now has a constant, embarrassing, irritating cough which he attributes to arachnoiditis. I was coughing until I was sick, I just wouldn’t go anywhere. In case I had it when I was out. Because it was really embarrassing. All since the test. I get, I was coughing until I was vomiting. Even though I didn’t feel sick, or if I had nothing to eat, and I was dry retching. And driving round town and I’d have a little cough and then I couldn’t stop. Will still has no idea why this coughing occurs. There is no tickle associated with it. “You just start coughing for no particular reason.” The coughing paroxysms last for “a couple of minutes. It’s annoying. You know, if people are around, you feel really embarrassed.” The cough is not usually a productive one, but he became seriously ill at one time because he ignored it. Sometimes I can bring up phlegm. But even when I have that, all that was taken to the lab and analysed and they said, “Well, there’s nothing wrong with it.” And one summer, like, when I had the bad cough - I get chest pains as well, and sore round my arms, and stuff like that. I got used to that and I left it. And I ended up getting pneumonia. Because I thought it was just normal. Something that was just happening, and I left it and I left it. And [wife] said, ‘Oh you’d better go to the doctor. You don’t look very well.” And I said, “No I’m all right. There’s nothing that’s different.” Then I started getting a temperature and she took me to the doctor and I had pneumonia. Jim gets shortness of breath, associated with shooting pains in chest. One of the areas I get pain, is from the chest. It feels from the back. It’s like a spear, or something, going right through you to the front. And you eventually get so short of breath with it, as well, it all feels so tender. Will, since his myelogram, has had problems with his healing processes. His glands in his neck are swollen. He bleeds easily, and wounds fail to heal. If I have an accident, if I cut myself at work, it bleeds for ages. It makes, a small cut will leave a big scar on my hand or my leg. There’s one there. It was only a real shallow cut. But it took probably a month or six weeks to heal up. It was all open. It looks like it’s poison. But it never gets infected . . . . It wasn’t pus-y looking. But it went white. And all horrible looking. My mother-in-law said, “Oh! You’ve got poisoning in your hand.” And I said, “No. It’ll heal up.” I’ve got one there. I’ve got one on the back of my foot I did at home where the kids shut the door on my foot. That took, I don’t know, six to eight weeks to heal up. I don’t know if it’s anything to do with it [his other health problems]. They haven’t really got an answer. No. The doctors don’t know what it is. Will experiences deep, internal itching. I get itchy bits. Itchy legs and itchy hands and itch till I pull all the skin off my legs and, particularly in the summer time, when I get into bed at night. That’ll be sort of warmish nights, and I’ll get an itch in my back and I’ll scratch. And then, that isn’t on the skin. Like that, I sort of itch that, but it feels like it’s further inside there. The ones on my legs, I’ll itch them till I’ve got big scratch marks on my legs and they don’t go away. They’re deep, they’re inside. They’re not on the skin, or anything. Rose believes the onset of premature menopause was related to steroid injections she was given for pain. Jim mentioned that he had memory loss but did not elaborate on what this meant for him. Mary also has memory loss, which she attributes to medication. Disturbances of heat-cold mechanisms Disturbances of heat/cold mechanisms are a recognised symptom of nervous system disorders. Three participants described sensations of this kind. Jim Jim’s sensation is, as mentioned earlier, partly associated with numbness in his leg. “It feels as though it’s going from hot to cold, and then absolutely nothing.” He also has heat changes elsewhere in his body. “There are parts that fluctuate. But, generally, it’s the whole body. You know, you just feel hot, or you feel absolutely freezing.” Although Jim has night sweats, there is no perspiration or clamminess associated with his heat/cold changes. “It’s a dry heat or a dry cold.” Terry For Terry, this is a relatively new sensation. “The other thing that I’ve got is like a cold sensation in all my left arm and shoulder side. And that’s something that’s only happened in the last six months.” He has “no idea” why this happens. Will Will also finds his awareness of heat and cold has changed. Sometimes it can be a warmish day and I’ll feel cold, and on a cold day, I’ll feel hot. So, I don’t know. It’s like, it’s almost like there’s something wrong with the temperature control in my body, at times. And I shouldn’t be feeling hot. Jane Others have commented to Jane on the way her temperament has changed. My partner knew me twenty two years ago, and he couldn’t believe how I have changed. How moody and very quick tempered, I’m very quick tempered, which I was never that way. I was always very placid. But I try to control myself, but sometimes I can’t. I actually would like to understand why I’m like that. And probably control myself better. Jane is troubled by her mood changes because of the way they impact on those around her. I try very hard not to sort of fly off the handle, but sometimes I - for no reason- I do it. And I have thought at times of having some counselling, because of that. Because I don’t think it’s very fair on these little children. Oh, I’m kind to them, don’t worry about that, but instead of me saying, “Now, you shouldn’t do that,” my voice is raised. And that really isn’t me. Mick Mick does not feel that his symptoms have affected his mood “I try not to let it sort of get me.” Will Will has also found it increasingly difficult to maintain an even mood as his symptoms have developed. I’m not very patient now. I’m not as patient as I used to be, put it that way. I don’t know whether it’s because I’m getting older, or what it is. But, like if I’m doing something and it’s not going right, I lose patience real quick. And I never used to be like that. Will Will had an episode of unexplained jaundice. “I’d been to the doctor with bright yellow feet and he thought I had hepatitis. But I passed all the tests. Didn’t have hepatitis. He doesn’t know what that was.” The yellowness appeared on the bottoms of his feet, on his hands and in his eyes and was the same colour as the yellow perspiration he gets. “Same colour. Really, really yellow. And then it just went away. I had it for two days, I think.” This happened about six or seven years ago and has not recurred. Jim Jim feels lack of sleep is part of the overall situation he is in. “Lack of sleep, that comes with all of these. This morning, I’ve been awake since four o’clock. It’s sometimes just pain, but other times it’s - I don’t know - stress, I suppose, you get things on your mind.” Mick Mick gets tired through his inability to sleep well because of his hip pain when lying in bed. He often only has three hours of sleep per night. To make up for this he’ll “nod off on the couch” although this is dependent on him not being “annoyed” by other family members. Terry Terry used to have trouble sleeping but “since I’ve started the job, I’ve actually slept better. Maybe because I’m just exhausted.” He feels he maybe “wasn’t sleeping so well, because I was spelling myself through the day.” Will Will has frequent nights of lying awake, and has had to structure a strict bedtime routine. If he goes to bed early, no matter how tired he is, he tosses and turns. If he goes at midnight, he usually gets off to sleep without difficulty. If I go to bed at twelve, it’s good. I’ll more or less go straight to sleep, most of the time. But if I don’t get to sleep, then I’ll still be awake at 2 o’clock, 3 o’clock. And then the alarm goes off at half past six. Two participants spoke of their need to lose weight, and the difficulties they have in doing so when their ability to exercise is so limited. Mick Oh, weight issue, yes, that’s an ongoing thing, that one. I mean, I can do a lot of walking, I can do a lot of, a certain amount of exercise that I can do. But I still don’t seem to lose any weight and I don’t eat a lot of fatty foods or anything. Mary Mary’s doctor tells her she is unable to have an MRI until she has lost weight. “I’ve got to lose a lot of weight first. It’s unlikely to be - to give a good result to anyone over a 100kg. So I’m losing it at the minute.” She finds this very difficult, since she can barely walk. “Because I can’t get any exercise.” Will has an ongoing problem with deteriorating vision. Every time I go to the optician, I need stronger glasses. Which he [the optician] thinks is a bit funny, because my eyes should have stopped getting any worse. There’s supposed to be a period where your eyes don’t get any worse. And then when you get older, they start getting worse again. But mine get worse all the time. Every time I go. So there is nothing - I haven’t got glaucoma, or anything like that, causing it. Mick is troubled by “ringing in the ears. Or, in the head actually, not ears. It’s more in the back of it.” This started suddenly in about 1990 when he was driving through a forest and he heard this buzzing. And said, “Oh, yes, it’s the locusts.” And got out of the forestry and, still with me, you know. And it’s sort of been with me mainly, on and off, all the time. Occasionally, it stops, but not very often. He has had an investigatory MRI and has had tinnitus explained to him but is unsure if he really has tinnitus because “it’s not in the ear itself. It’s in the middle of the head.” He does not associate it with other symptoms, such as neck pain |
||||||||||||||||||||||||
