1999 ARACHNOIDITIS SURVEY

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1999 ARACHNOIDITIS SURVEY
Sarah Andreae-Jones MB BS (Smith)
Patron of The Arachnoiditis Trust
England

This is a global postal survey of arachnoiditis sufferers, with participants from USA, UK, Europe, New Zealand and Australia.

The object of this survey is

1. To raise interest amongst the medical community and thus hopefully clinically based research.

2. To increase understanding of how this condition affects the sufferers. (In particular, to give some idea as to prevalence of each symptom)

Whilst the information is anecdotal, the size of the survey is of statistical significance.

It should be noted that previous surveys: (Long; Aldrete) have looked at a narrower range of symptoms. This survey has attempted to include the majority of all the commonest symptoms. A direct questionnaire was sent out and all replies of patients with a diagnosis of arachnoiditis were entered into the survey. Data has been collected over a period of several months via e-mail and "snail mail". (Some survey responses indicated that there was no diagnosis: these were excluded from the main body of results. However, this data was compiled separately for comparative purposes (using cases with one or more of the risk factors (i.e. not based on symptom picture).

Comments: Interpretation may be difficult due to the anecdotal nature of the data.

Although there is a predominance of over 50s age-group, it must be note also the predominance of respondents having suffered arachnoiditis for over 10 years (and in some cases over 20 years.) This would therefore indicate that the onset of the condition was in fact commonly in middle age. This has a significant bearing on the impact on the sufferers’ lives and those of their families.

Looking at risk factors, the numbers of course reflect the fact that in the majority of cases, the condition is multifactorial in origin. There are, however, some 40 cases in which there were only chemical causes (no mechanical risk factors such as surgery, trauma or degenerative conditions).

Data about history of surgery/myelogram/epidural anaesthesia/epidural steroid injection refers to one or more of each type of procedure: i.e. if a respondent has several interventions, this is recorded only as one as regards incidence.

This is to avoid confusing the data. Further breakdown of the data is also presented to attempt to clarify.

Data about site of lesion: Cranial involvement includes residue of oil-based myelographic dye in the skull seen on X-ray.

As regards concomitant autoimmune disorders: the overall total incidence of diagnosed autoimmune conditions was 154 (i.e.48%): this refers to the total number of diagnosed conditions, but as some cases involved several concomitant conditions, it is helpful to look at prevalence: including fibromyalgia, there were 97 cases i.e. 30%. This is much greater than would be expected in the general population.

Pain was universally a part of the symptoms. As discussed in my article "The Arachnoiditis Syndrome", it may be of several types and in various sites. Overall, however, the neurogenic pain is the predominant feature and this tends to be a constant burning (dysesthetic pain), with intermittent stabbing and electric shock pains. (Lancinating).

Commonly there were also other features such as allodynia (pain due to non-painful stimulus, especially light touch) and bizarre sensations.

Data about the site of the pain obviously will reflect the site of the lesion, but it should be noted that headaches were common (189 cases=60%), regardless of the spinal area involved.

RESULTS: EPIDEMIOLOGY

TOTAL NUMBER OF RESPONDENTS: 317

(percentage figures rounded to nearest integer; those less than 1% excluded)

AGE GROUPS:

30-40 16 (5%)

40-50 55 (7%)

50-60 124 (39%)

60-70 84 (27%)

70-80 36 (11%)

80-90 2

GENDER:

MALE 94 (30%)

FEMALE 223 (70%)

TIME SINCE DIAGNOSIS (YEARS)

Unspecified 17 (5%)

1-5 87 (27%)

5-10 80 (25%)

MORE THAN 10 133 (42%)

LEVEL OF LESION (S):

LUMBAR 277 (87%)

   LUMBAR LESION ONLY 186 (59%)

THORACIC 75 (24%)

CERVICAL 62 (20%)

   WIDESPREAD 131 (41%)

CRANIAL 43 (14%)

RISK FACTORS:

TRAUMA 25 (8%)

STENOSIS 59 (19%)

SPINAL SURGERY 236 (74%)

OIL-BASED MYELOGRAM 183 (58%)

WATER-BASED MYELOGRAM 95 (30%)

UNSPECIFIED MYELOGRAM 63 (20%)

SPINAL/EPIDURAL ANAESTHETIC 73 (24%)

EPIDURAL STEROID INJECTION 193 (61%)

MENINGITIS (including chemical) 23 (7%)

CHYMOPAPAIN 4

LUMBAR PUNCTURE 7 (2%)

SUBARACHNOID HAEMORRHAGE 2

SPINAL TUMOUR: 3 + EPENDYMOBLASTOMA 1

DURAL TEAR/PUNCTURE/CSF LEAK 8 (2%)

FURTHER DATA ABOUT MYELOGRAMS:

TOTAL NUMBER OF CASES WHO HAD A MYELOGRAM
267 (85% OF ALL RESPONDENTS)

SINGLE MYELOGRAM 146

MULTIPLE MYELOGRAMS 121

CASES WITH OIL-BASED ONLY
117 (44% OF TOTAL NUMBER OF MYELOGRAMS)

CASES WITH WATER-BASED ONLY 44 (16% OF TOTAL)

CASES WITH BOTH 49 (18% OF TOTAL)

UNSPECIFIED 57 (21% OF TOTAL)

CHEMICALLY INDUCED ARACHNOIDITIS (NO OTHER RISK FACTORS) 40 (13%)

MISCELLANEOUS ASSOCIATED CONDITIONS:

SYRINGOMYELIA 6=2%

ARACHNOID CYST 1

ARNOLD CHIARI MALFORMATION 1 1

PARS DEFECT:1 ; CONGENITAL BRAIN AND SPINAL CORD DEFECTS 1

SPINA BIFIDA OCCULTA 12=4%

TETHERED CORD: 3 + DIASTIGMATIC MYELIA 1

SPINAL ABSCESS 2

POST-OPERATIVE INFECTION (SPINAL) 2

TARLOV CYSTS 2

CONGENITAL KYPHOSCOLIOSIS 1

POSSIBLE ASSOCIATED FACTORS:

RHIZOLYSIS 2

RACZ PROCEDURE (HYALURONIDASE) 1

PREVIOUS SERIOUS VIRAL INFECTION (EBV*, HERPES ZOSTER**, HEPATITIS, ETC.) 41=13%

MUMPS ENCEPHALITIS 1

TUBERCULOSIS 4

POLIOMYELITIS 2 + 1?

OTHER INFECTIOUS DISEASE:

   LYME DISEASE 1

   BRUCELLOSIS 2

   RHEUMATIC FEVER 2

   TYPHOID 1

Notes:

*EPSTEIN-BARR VIRUS = GLANDULAR FEVER / INFECTIOUS MONONUCLEOSIS

**CHICKEN POX / SHINGLES

RESULTS: SYMPTOMS/SIGNS

TOTAL NUMBER OF PARTICIPANTS 317
(223 Female,
94 Male)

Age range 30-82

Mean age group 50-60

Pain 100% (see accompanying notes)

Stiffness 79%

Muscle cramps / twitches / spasms 81%

Weakness 82%

Balance difficulties 70%

Numbness / tingling 86%

Bladder / bowel / sexual dysfunction 68%

Difficulty in thinking clearly / decision making / memory 63%

Depression / anxiety 62%

Sleep disturbance 84%

Increased sweating 63%

Heat intolerance 58%

Intermittent low grade fevers 28%

Flu-like feeling and malaise 42%

Raised ESR / white cell count 14%

Enlarged lymph nodes 10%

Joint pains 72%

Skin rashes 32%

Frequent infections 20%

Sinusitis 32%

Slow healing / tendency to scar easily 29%

Limb / generalised swelling 38%

Reflex Sympathetic Dystrophy 3

Trouble swallowing 27%

Angina type chest pain (but no heart disease found) 31%

Weight gain 50%

Reduced mobility (i.e. house / chair / bed bound?) 68%

Allergies (new, e.g. multiple drug allergies) 25%

Dizziness / vertigo 44%

Dry eyes / mouth 58%

Bruising 39%

Fatigue 76%

Dental problems (tooth / gum) 28%

Low potassium 10%

Abnormal blood tests 13%

Abnormal kidney function 7%

Abnormal liver enzymes 7%

Chemical Hepatitis 1

Osteoporosis 14%

Shortness of breath 32%

Lung problems 10%

Gastrointestinal problems:

   General 41%

   Irritable Bowel Syndrome 8%

Visual problems 45%

(Women) Menstrual irregularities (if pre-menopausal) / early menopause / painful periods 14%

Diagnosis of Autoimmune disorder:

Ankylosing Spondylitis 4

Autoimune hearing loss 1

Autoimmune pancreatitis 2

Coeliac disease 1

Crohn’s disease 2

Type 1 Diabetes Mellitus 12

Endometriosis 4

Haemolytic Anaemia 1

Lupus 5 (incl. 1 discoid) + 4?

Multiple Sclerosis 11 + 3?

Polymyalgia Rheumatica 4

Psoriasis 1

Psoriatic arthritis 1

Raynaud’s disease 26

Rheumatoid Arthritis 23

Sarcoidosis 1

Sjogren’s disease 3 + 2?

Thyroiditis / Hypothyroidism 20

Ulcerative Colitis 1

Uveitis / Iritis 1

Vitiligo 1

Pernicious Anaemia 1

Miscellaneous Autoimmune 9

Fibromyalgia 19

? FMS 2

Total (incl.FMS) 154 (48%)

Number of cases (i.e. with one or more diagnosed autoimmune conditions) 87 + 11 FMS
98 (30% prevalence)

Diagnosis of:

Multiple Chemical Sensitivity 2

Myalgic Encephalopathy 1 + 1?

Chronic Fatigue Syndrome 3

Myofascial Syndrome 1

Myalgia 1

Other neurological diagnoses:

Epilepsy 3

Parkinson’s 1

Peripheral neuropathy 1

Postpolio syndrome 1

Miscellaneous conditions:

Carpal Tunnel Syndrome 1

Paget’s disease 1

Erythema nodosum 1

Renal calculi 7

General renal problems (e.g hydronephrosis, haematuria) 13

Hiatus hernia / reflux oesophagitis 8

Chronic leukaemia 1

Thyroid cysts 2 (see below)

Tumours:

   Breast 5

   Prostate 2

   bladder 1

   cervical 1

   thyroid 2

   ovarian 1

   pituitary 1

   colorectal 1

   renal 1 (with lung metastases)

   "bowel" 1

   malignant melanoma 1

   Melanoma 1

   Lymphoma 1

SUMMARY:

10 COMMONEST SYMPTOMS(in order of prevalence):

Pain 100%

Numbness / tingling 86%

Sleep disturbance 84%

Weakness 82%

Muscle cramps / twitches / spasms 81%

Stiffness 79%

Fatigue 76%

Joint pains 72%

Balance difficulties 70%

Loss of mobility 68%

Other common symptoms seen in the typical case:

Bladder / bowel / sexual dysfunction 68%

Increased sweating 63%

Difficulty thinking clearly 63%

Depression 62%

Heat intolerance 58%

Dry eyes/mouth 58%

Weight gain 50%

IMPORTANT NOTE:

It must be stressed that for any NEW or increasingly worsening symptom, patients must consult their doctor for examination (and investigation where necessary). It must NOT be assumed that all symptoms are part of arachnoiditis and cannot be treated. For example: chest pain: obviously a heart condition must be ruled out; often chest pain can be occurring as a result of indigestion type problems, maybe to do with some reflux of acid from the stomach: this is particularly likely if the patient is on anti-inflammatory medication. This can be eased considerably by appropriate treatment and furthermore, it may be necessary to discontinue the medication to avoid serious adverse effects.

THYROID PROBLEMS

CASES:

1. 49 year old female; Graves disease; water-based myelograms; also diagnosed with fibromyalgia

2. 57 year old female; Grave’s disease and thyroid eye disease; 2 myelograms (unspecified); also, IBS

3. .50 year old female; thyroiditis; 3 water-based myelograms; also IBS and ?Sjogren’s

4. ? age female; thyroiditis; myodil; also: Raynaud’s

5. 66 year old female; thyroiditis; Amipaque (water-based)

6. 54 year old male; thyroiditis; Myodil

7. 59 year old female; thyroiditis; unspecified myelogram; also Ca breast, DM, FMS

8. 67 year old female; thyroiditis; myodil; also Rheumatoid arthritis

9. 59 year old female; thyroiditis; myodil and omnipaque

10. 53 year old female; thyroiditis; myodil

11. 57 year old female; thyroiditis; myodil; also DM

12. 72 year old female; thyroiditis; myodil

13. 60 year old female; thyroiditis; pantopaque and omnipaque; also, FMS

14. 70 year old female; thyroiditis; both oil and water-based myelograms

15. 60 year old female; Hypothyroid; Myodil (oil-based) myelogram; also: IBS

16. 47 year old female; Hypothyroid diagnosed in 1996; Pantopaque (=myodil); also Manic-depressive disorder

17. 41 year old female; Hypothyroid; one unspecified myelogram;

18. 38 year old female; Hypothyroid diagnosed 1991; no myelograms but had epidural steroid injection; also has Raynaud’s and duodenal ulcer

19. 50 year old female; Hypothyroid; 3 myelograms; also: vitiligo and IBS

20. 68 year old female; thyroid surgery; myodil

21. 56 year old female; thyroid surgery; myodil

22 .61 year old female; partial thyroidectomy; myodil

23. 57 year old female; Thyroid tumour; myodil

24. 62 year old female; Thyroid tumour; myodil

25. 69 year old female; lymphoma >> thyroidectomy; myodil ; also diagnosed with MS

26. 46 year old female; thyroid cyst >> hypothyroid; myelogram

27. 64 year old female; thyroid cysts, small goitre; no myelogram but ESIs; also RA, multiple allergies

TREATMENT

MEDICATION: (in current frequent use)

OPIATES (e.g. Morphine, Pethidine, Methadone, Tramadol, etc.) 171 (54%)

ANTI-INFLAMMATORY (e.g. Brufen, Mobic, Naproxen, Vioxx etc.) 144 (45%)

ANTIDEPRESSANT (commonest Amitriptyline; also Prozac, etc.) 90 (28%)

ANTICONVULSANT (e.g. Tegretol, Neurontin, Vigabatrin) 84 (26%)

MUSCLE RELAXANT (e.g. Baclofen, Robaxin, Dantrolene, Zanaflex) 34 (11%)

BENZODIAZEPINE (e.g. Diazepam, Clonazepam, Nitrazepam, etc.) 39 (12%)

DIURETICS (for fluid retention) 17 (5%)

INA ("the pump") 8 (2%)

   incl. CLONIDINE 2

SCS (Spinal Cord Stimulator) 2

STEROIDS 4 (1 via portal implant)

QUININE (for muscle cramps) 3

MEXETIL 1

AXSAIN CREAM (topical capsaicin) 1

OXYBUTININ (for bladder muscle instability) 1

BETHANECOL (for urinary retention) 1

ETIDRONATE (for prevention of bone loss in osteoporosis) 1

RITALIN 1 (for epilepsy)

PARAMAX (Paracetamol + Metoclopramide) 1

SINEMET (for Parkinson’s) 1

BETAHISTINE(for Meniere’s disease) 1

NONE 10 (3%)

PARACETAMOL/ASPIRIN ONLY 4

TENS 2

Note low percentage on no medication or simple analgesia; generally, for respondents who were not on medication, this was due to inability to tolerate stronger medication due to side-effects or adverse reactions.

Most cases in the survey involved polypharmacy, with a combination of opiates with antidepressant and/or anticonvulsant being common. Anti-inflammatory medication (NSAIDS) usage was common despite a considerable number of respondents stating that they had had to discontinue use due to adverse gastric effects (e.g. gastric/duodenal ulcer, heartburn, gastric bleed), which are well-known with this type of medication.

Antidepressant medication is used at a subtherapeutic dose as regards treating depression (i.e. say 25mg amitriptyline rather than 75-150mg) it is useful for neurogenic pain. Tricyclic antidepressants are most effective, whereas SSRIs (newer type) such as Prozac are often poorly effective. Of course, in some cases, full antidepressant dose may be given to combat any depressive features compounding the physical problems.

Anticonvulsant medication is useful for neurogenic pain.

Benzodiazepines: a group of drugs including valium: used either as a muscle relaxant or to combat anxiety, or perhaps as sleeping tablets.

Both opiates and benzodiazepines are known to cause physical and psychological dependence (though the latter is not as marked in usage for analgesia as compared with recreational use) and tolerance to opiates may necessitate increasing doses for the same therapeutic effect.

RESEARCH SURVEY 1999: UNDIAGNOSED CASES

Results: (BRACKETS DENOTE RESULTS IN DIAGNOSED CASES)

TOTAL NUMBER OF PARTICIPANTS 29
(18 Female,
11 Male)

Age range 37-78

Pain 100% (see accompanying notes)

Stiffness 79% (79%)

Muscle cramps / twitches / spasms 79% (81%)

Weakness 69% (82%)

Balance difficulties 52% (70%)

Numbness / tingling 83% (86%)

Bladder / bowel / sexual dysfunction 59% (68%)

Difficulty in thinking clearly / decision making / memory 52% (63%)

Depression / anxiety 66% (63%)

Sleep disturbance 69% (84%)

Increased / decreased sweating increased 52% (63%)

Heat intolerance 55% (58%)

Intermittent low grade fevers 21% (28%)

Flu-like feeling and malaise 62% (42%)

Raised ESR / white cell count 3% (14%)

Enlarged lymph nodes 14% (10%)

Joint pains 62% (72%)

Skin rashes 31% (32%)

Frequent infections 24% (20%)

Sinusitis 24% (32%)

Slow healing / tendency to scar easily 31% (29%)

Limb / generalised swelling 28% (38%)

RSD 1

Trouble swallowing 31% (27%)

Angina type chest pain (but no heart disease found) 24% (31%)

Weight gain 55% (50%)

Reduced mobility (i.e. house / chair / bed bound?) 62% (68%)

Allergies (new, e.g. multiple drug allergies) 45% (25%)

Dizziness / vertigo 38% (44%)

Dry eyes / mouth 55% (58%)

Bruising 41% (39%)

Fatigue 69% (76%)

Dental problems (tooth / gum) 31% (28%)

Low potassium 1

Abnormal blood tests 14% (13%)

Abnormal kidney function 7% (7%)

Abnormal liver enzymes 1

Osteoporosis 10% (14%)

Shortness of breath 41% (32%)

Lung problems 2 cases (10%) Multiple pulmonary emboli

Gastrointestinal problems

   General 14% (41%)

   IBS 24% (8%)

Visual problems 45% (45%)

(Women) Menstrual irregularities (if pre-menopausal) / early menopause / painful periods 14% (14%)

Diagnosis of:

Lupus ? 1

Raynaud’s disease 4

Other autoimmune disease

Rheumatoid Arthritis 1

Thyroiditis 2 + hypothyroid 1

Mixed connective tissue disease (MCTD) 1

non-specific inflammatory arthritis 1

Iritis 1

Diagnosis of MS 1

Other neurological diagnoses:

Epilepsy 1

Muscular dystrophy 1

Chronic Fatigue Syndrome 1

Miscellaneous conditions:

Carpal Tunnel Syndrome 1

Sarcoidosis 1

Paget’s disease (skull) 1

Erythema nodosum 1

Granuloma annulare 1

renal calculi 1

sleep apnoea 1

keratoconus + cataracts 1

cystic ovary 1

TOTAL NUMBER OF RESPONDENTS: 29

AGE GROUPS:

30-40 4

40-50 12

50-60 7

60-70 4

70-80 2

GENDER

MALE 11

FEMALE 8

LEVEL OF LESION(S)

LUMBAR 20

THORACIC 4

CERVICAL 7

CRANIAL 3

RISK FACTORS:

TRAUMA 2

STENOSIS 6

SPINAL SURGERY 16

OIL-BASED MYELOGRAM 6

WATER-BASED MYELOGRAM 11

UNSPECIFIED MYELOGRAM 2

SPINAL / EPIDURAL ANAESTHETIC 3

EPIDURAL STEROID INJECTION 14

MENINGITIS (including chemical) 4

LUMBAR PUNCTURE 1

SUBARACHNOID HAEMORRHAGE 1

TUMOUR (brain) 1

DURAL TEAR / PUNCTURE/CSF LEAK 4

LUMBAR SYMPATHETIC BLOCK 1

MISCELLANEOUS ASSOCIATED CONDITIONS

CONGENITAL ABNORMALITY (SPINAL) 1

SCHEUERMANN’S DISEASE 1

SPINA BIFIDA OCCULTA 1

PAGET’S DISEASE IN SKULL 1

EPILEPSY 1

MUSCULAR DYSTROPHY 1

PREVIOUS SERIOUS VIRAL INFECTION (EBV, HEPATITIS, ETC.) 2

POLIOMYELITIS 1

SPINAL FUNGAL INFECTION 1

OTHER INFECTION:

   CHLAMYDIA 1

   E.COLI 0157 1

DIAGNOSES:

FAILED BACK SURGERY SYNDROME 3

EPIDURAL/POST-OPERATIVE FIBROSIS 3

MS 1

CFS 1

FMS 3

NEUROGENIC PAIN 1

RSD 1

MEDICATION:

OPIATES 16 (55%)

ANTI-INFLAMMATORY 8 (28%)

ANTIDEPRESSANT 12 (41%)

ANTICONVULSANT (e.g. Tegretol) 6 (21%)

MUSCLE RELAXANT 2

BENZODIAZEPINE 3

COMMENTS:

The majority of respondents felt that they in fact have arachnoiditis but have been unable to get a diagnosis. In some cases, they have been trying for years and have been left without any diagnosis whatsoever.

The results demonstrate the similarity of the symptoms to those of diagnosed arachnoiditis cases; however, it must be acknowledged that many of the symptoms are non-specific. Obviously, further investigation (examination and tests) is not possible in this postal survey, but it might be of considerable use in future research.

Note that the risk factors were the criteria for inclusion in the survey, not just the symptomatology.

Sarah A. Andreae-Jones MB BS (Smith)

Patron of the Arachnoiditis Trust

December, 1999.

30-40	16 (5%)
40-50	55 (7%)
50-60	124 (39%)
60-70	84 (27%)
70-80	36 (11%)
80-90	2

Unspecified	17 (5%)
1-5	87 (27%)
5-10	80 (25%)
MORE THAN 10	133 (42%)

LUMBAR	277 (87%)
LUMBAR LESION ONLY	186 (59%)
THORACIC	75 (24%)
CERVICAL	62 (20%)
WIDESPREAD	131 (41%)
CRANIAL	43 (14%)

TRAUMA	25 (8%)
STENOSIS	59 (19%)
SPINAL SURGERY	236 (74%)
OIL-BASED MYELOGRAM	183 (58%)
WATER-BASED MYELOGRAM	95 (30%)
UNSPECIFIED MYELOGRAM	63 (20%)
SPINAL/EPIDURAL ANAESTHETIC	73 (24%)
EPIDURAL STEROID INJECTION	193 (61%)
MENINGITIS (including chemical)	23 (7%)
CHYMOPAPAIN	4
LUMBAR PUNCTURE	7 (2%)
SUBARACHNOID HAEMORRHAGE	2
SPINAL TUMOUR: 3 + EPENDYMOBLASTOMA	1
DURAL TEAR/PUNCTURE/CSF LEAK	8 (2%)

TOTAL NUMBER OF CASES WHO HAD A MYELOGRAM	267 (85% OF ALL RESPONDENTS)

SINGLE MYELOGRAM	146
MULTIPLE MYELOGRAMS	121

CASES WITH OIL-BASED ONLY	117 (44% OF TOTAL NUMBER OF MYELOGRAMS)
CASES WITH WATER-BASED ONLY	44 (16% OF TOTAL)
CASES WITH BOTH	49 (18% OF TOTAL)

UNSPECIFIED	57 (21% OF TOTAL)

CHEMICALLY INDUCED ARACHNOIDITIS (NO OTHER RISK FACTORS)	40 (13%)

SYRINGOMYELIA	6=2%
ARACHNOID CYST	1
ARNOLD CHIARI MALFORMATION 1	1
PARS DEFECT:1 ; CONGENITAL BRAIN AND SPINAL CORD DEFECTS	1
SPINA BIFIDA OCCULTA	12=4%
TETHERED CORD: 3 + DIASTIGMATIC MYELIA	1
SPINAL ABSCESS	2
POST-OPERATIVE INFECTION (SPINAL)	2
TARLOV CYSTS	2
CONGENITAL KYPHOSCOLIOSIS	1

RHIZOLYSIS	2
RACZ PROCEDURE (HYALURONIDASE)	1
PREVIOUS SERIOUS VIRAL INFECTION (EBV, HERPES ZOSTER*, HEPATITIS, ETC.)	41=13%
MUMPS ENCEPHALITIS	1
TUBERCULOSIS	4
POLIOMYELITIS	2 + 1?

OTHER INFECTIOUS DISEASE:
LYME DISEASE	1
BRUCELLOSIS	2
RHEUMATIC FEVER	2
TYPHOID	1

TOTAL NUMBER OF PARTICIPANTS	317 (223 Female, 94 Male)

Age range	30-82
Mean age group	50-60

Pain	100% (see accompanying notes)

Stiffness	79%
Muscle cramps / twitches / spasms	81%
Weakness	82%
Balance difficulties	70%
Numbness / tingling	86%
Bladder / bowel / sexual dysfunction	68%
Difficulty in thinking clearly / decision making / memory	63%
Depression / anxiety	62%
Sleep disturbance	84%
Increased sweating	63%
Heat intolerance	58%
Intermittent low grade fevers	28%
Flu-like feeling and malaise	42%
Raised ESR / white cell count	14%
Enlarged lymph nodes	10%
Joint pains	72%
Skin rashes	32%
Frequent infections	20%
Sinusitis	32%
Slow healing / tendency to scar easily	29%
Limb / generalised swelling	38%
Reflex Sympathetic Dystrophy	3
Trouble swallowing	27%
Angina type chest pain (but no heart disease found)	31%
Weight gain	50%
Reduced mobility (i.e. house / chair / bed bound?)	68%
Allergies (new, e.g. multiple drug allergies)	25%
Dizziness / vertigo	44%
Dry eyes / mouth	58%
Bruising	39%
Fatigue	76%
Dental problems (tooth / gum)	28%
Low potassium	10%
Abnormal blood tests	13%
Abnormal kidney function	7%
Abnormal liver enzymes	7%
Chemical Hepatitis	1
Osteoporosis	14%
Shortness of breath	32%
Lung problems	10%
Gastrointestinal problems:
General	41%
Irritable Bowel Syndrome	8%
Visual problems	45%
(Women) Menstrual irregularities (if pre-menopausal) / early menopause / painful periods	14%

Ankylosing Spondylitis	4
Autoimune hearing loss	1
Autoimmune pancreatitis	2
Coeliac disease	1
Crohn’s disease	2
Type 1 Diabetes Mellitus	12
Endometriosis	4
Haemolytic Anaemia	1
Lupus 5 (incl. 1 discoid)	+ 4?
Multiple Sclerosis	11 + 3?
Polymyalgia Rheumatica	4
Psoriasis	1
Psoriatic arthritis	1
Raynaud’s disease	26
Rheumatoid Arthritis	23
Sarcoidosis	1
Sjogren’s disease	3 + 2?
Thyroiditis / Hypothyroidism	20
Ulcerative Colitis	1
Uveitis / Iritis	1
Vitiligo	1
Pernicious Anaemia	1
Miscellaneous Autoimmune	9
Fibromyalgia	19
? FMS	2

Total (incl.FMS)	154 (48%)
Number of cases (i.e. with one or more diagnosed autoimmune conditions)	87 + 11 FMS 98 (30% prevalence)

Multiple Chemical Sensitivity	2
Myalgic Encephalopathy	1 + 1?
Chronic Fatigue Syndrome	3
Myofascial Syndrome	1
Myalgia	1

Epilepsy	3
Parkinson’s	1
Peripheral neuropathy	1
Postpolio syndrome	1

Carpal Tunnel Syndrome	1
Paget’s disease	1
Erythema nodosum	1
Renal calculi	7
General renal problems (e.g hydronephrosis, haematuria)	13
Hiatus hernia / reflux oesophagitis	8
Chronic leukaemia	1
Thyroid cysts	2 (see below)

Tumours:
Breast	5
Prostate	2
bladder	1
cervical	1
thyroid	2
ovarian	1
pituitary	1
colorectal	1
renal	1 (with lung metastases)
"bowel"	1
malignant melanoma	1
Melanoma	1
Lymphoma	1

Pain	100%
Numbness / tingling	86%
Sleep disturbance	84%
Weakness	82%
Muscle cramps / twitches / spasms	81%
Stiffness	79%
Fatigue	76%
Joint pains	72%
Balance difficulties	70%
Loss of mobility	68%

Bladder / bowel / sexual dysfunction	68%
Increased sweating	63%
Difficulty thinking clearly	63%
Depression	62%
Heat intolerance	58%
Dry eyes/mouth	58%
Weight gain	50%

OPIATES (e.g. Morphine, Pethidine, Methadone, Tramadol, etc.)	171 (54%)
ANTI-INFLAMMATORY (e.g. Brufen, Mobic, Naproxen, Vioxx etc.)	144 (45%)
ANTIDEPRESSANT (commonest Amitriptyline; also Prozac, etc.)	90 (28%)
ANTICONVULSANT (e.g. Tegretol, Neurontin, Vigabatrin)	84 (26%)
MUSCLE RELAXANT (e.g. Baclofen, Robaxin, Dantrolene, Zanaflex)	34 (11%)
BENZODIAZEPINE (e.g. Diazepam, Clonazepam, Nitrazepam, etc.)	39 (12%)
DIURETICS (for fluid retention)	17 (5%)
INA ("the pump")	8 (2%)
incl. CLONIDINE	2
SCS (Spinal Cord Stimulator)	2
STEROIDS	4 (1 via portal implant)
QUININE (for muscle cramps)	3
MEXETIL	1
AXSAIN CREAM (topical capsaicin)	1
OXYBUTININ (for bladder muscle instability)	1
BETHANECOL (for urinary retention)	1
ETIDRONATE (for prevention of bone loss in osteoporosis)	1
RITALIN	1 (for epilepsy)
PARAMAX (Paracetamol + Metoclopramide)	1
SINEMET (for Parkinson’s)	1
BETAHISTINE(for Meniere’s disease)	1

NONE	10 (3%)
PARACETAMOL/ASPIRIN ONLY	4
TENS	2

TOTAL NUMBER OF PARTICIPANTS	29 (18 Female, 11 Male)

Age range	37-78

Pain	100% (see accompanying notes)

Stiffness	79% (79%)
Muscle cramps / twitches / spasms	79% (81%)
Weakness	69% (82%)
Balance difficulties	52% (70%)
Numbness / tingling	83% (86%)
Bladder / bowel / sexual dysfunction	59% (68%)
Difficulty in thinking clearly / decision making / memory	52% (63%)
Depression / anxiety	66% (63%)
Sleep disturbance	69% (84%)
Increased / decreased sweating increased	52% (63%)
Heat intolerance	55% (58%)
Intermittent low grade fevers	21% (28%)
Flu-like feeling and malaise	62% (42%)
Raised ESR / white cell count	3% (14%)
Enlarged lymph nodes	14% (10%)
Joint pains	62% (72%)
Skin rashes	31% (32%)
Frequent infections	24% (20%)
Sinusitis	24% (32%)
Slow healing / tendency to scar easily	31% (29%)
Limb / generalised swelling	28% (38%)
RSD	1
Trouble swallowing	31% (27%)
Angina type chest pain (but no heart disease found)	24% (31%)
Weight gain	55% (50%)
Reduced mobility (i.e. house / chair / bed bound?)	62% (68%)
Allergies (new, e.g. multiple drug allergies)	45% (25%)
Dizziness / vertigo	38% (44%)
Dry eyes / mouth	55% (58%)
Bruising	41% (39%)
Fatigue	69% (76%)
Dental problems (tooth / gum)	31% (28%)
Low potassium	1
Abnormal blood tests	14% (13%)
Abnormal kidney function	7% (7%)
Abnormal liver enzymes	1
Osteoporosis	10% (14%)
Shortness of breath	41% (32%)
Lung problems	2 cases (10%) Multiple pulmonary emboli
Gastrointestinal problems
General	14% (41%)
IBS	24% (8%)
Visual problems	45% (45%)
(Women) Menstrual irregularities (if pre-menopausal) / early menopause / painful periods	14% (14%)

Rheumatoid Arthritis	1
Thyroiditis 2 + hypothyroid	1
Mixed connective tissue disease (MCTD)	1
non-specific inflammatory arthritis	1
Iritis	1
Diagnosis of MS	1

Carpal Tunnel Syndrome	1
Sarcoidosis	1
Paget’s disease (skull)	1
Erythema nodosum	1
Granuloma annulare	1
renal calculi	1
sleep apnoea	1
keratoconus + cataracts	1
cystic ovary	1

CONGENITAL ABNORMALITY (SPINAL)	1
SCHEUERMANN’S DISEASE	1
SPINA BIFIDA OCCULTA	1
PAGET’S DISEASE IN SKULL	1
EPILEPSY	1
MUSCULAR DYSTROPHY	1
PREVIOUS SERIOUS VIRAL INFECTION (EBV, HEPATITIS, ETC.)	2
POLIOMYELITIS	1
SPINAL FUNGAL INFECTION	1
OTHER INFECTION:
CHLAMYDIA	1
E.COLI 0157	1

FAILED BACK SURGERY SYNDROME	3
EPIDURAL/POST-OPERATIVE FIBROSIS	3
MS	1
CFS	1
FMS	3
NEUROGENIC PAIN	1
RSD	1

OPIATES	16 (55%)
ANTI-INFLAMMATORY	8 (28%)
ANTIDEPRESSANT	12 (41%)
ANTICONVULSANT (e.g. Tegretol)	6 (21%)
MUSCLE RELAXANT	2
BENZODIAZEPINE	3