The Aword

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Arachnoiditis patients tend to experience widespread pain rather than what doctors and textbooks tell us should be the case; we are expected to conform to the standard medical pattern, with symptoms confined to the lower limbs and in particular to areas corresponding with the relevant spinal segment involved in the arachnoiditis disease process.

I've read a good many textbooks and I've yet to find one that adequately describes the day-to-day problems I have had for many years.

I guess that whilst my brain knows the information, it has not seen fit to communicate with the rest of my body, which, as a consequence, stubbornly insists upon somewhat anarchic rebellion against the textbooks!

This leaves me with two options: one, to assume that I have lost my marbles (actually, I never had any, we used to play Monopoly instead!); two, that there is in fact a quite logical explanation for my problems.

As you know, I have run a couple of surveys, and have found that I am far from alone in this sort of situation. For instance, some 72% of respondents in my 1999 survey had joint pains, and from my other surveys and contact with many arachniacs over the last three and a half years, it seems that generalised joint and muscle pain alongside fatigue and malaise, is extremely common amongst us.

Indeed, a significant proportion of survey respondents have been diagnosed with fibromyalgia, which still, regrettably, still has ?waste basket diagnosis' connotations.

Some folk are diagnosed with both arachnoiditis and fibromyalgia. Personally, I believe that the fibromyalgic symptoms arise as a secondary problem to arachnoiditis.

I have had joint problems for most of my adult life and have been diagnosed with ?non-specific inflammatory arthritis': so a bit like rheumatoid but not, thankfully, as severe.

In addition, I continue to experience a great number of generalised aches and pains set against the background of my back, saddle and leg pain.

In essence, what is happening to many of us is a chain of events:

1.        Original spinal problem; may occur alongside other musculoskeletal problems e.g. trauma> multiple fractures; lumbar herniated disc and cervical spondylosis

2.        Ineffective treatment and/or recurring problem

3.        Continuing pain due to unresolved spinal problem

4.        Development of arachnoiditis; may cause muscle spasms>>pain

5.        Unremitting pain>> muscle tension>> pain>> joint put under abnormal pressure>> strained tendons/ligaments>>pain

6.        Pain>> reduced mobility>> muscle wasting>>weakness

7.        Alteration of posture to compensate for back+/- leg pain>> muscle tension and abnormal joint use ; often fibromyalgia -type or myofascial pain syndrome symptoms occur

8.        Weakness due to spinal problems (muscle atrophy/myopathy) further alters posture and gait.

9.        Interrupted sleep due to pain>>increased muscle tension. At this stage, symptoms may be similar to Chronic fatigue syndrome.

10.     Stress due to life-changing illness>> increased muscle tension

11.     In some people, development of an autoimmune condition such as lupus/rheumatoid arthritis/psoriasis*>>joint pain

12.     Original spinal problem may persist or become exacerbated

13.     Degenerative conditions such as spondylosis/osteoarthritis, spinal stenosis and osteoporosis (sometimes due to loss of mobility) may complicate the spinal problems.

* psoriasis can be associated with joint problems: psoriatic arthropathy

Of course, this all looks rather complicated, and it is only a very brief overview!

In reality, this sort of situation is, of course, complex and ongoing, thus requiring a thorough assessment and in all likelihood, a holistic approach to minimising symptoms (cure being unlikely).