Personal view

Reflex sympathetic dystrophy syndrome--from the inside

In 1978 my left brachial plexus was damaged by the seat belt that saved my life in a serious motor accident. On regaining consciousness I was aware of an intense sensation of ice and fire and pins and needles on the left side of my neck, radiating down my left arm and upwards to myface. Compared with this my fractured left wrist was of minor interest. Although the intensity of these sensations lessened after a few minutes, they have continued more or less unabated for 16 years. At the time of my accident I was physically fit, athletic, and outgoing, with a wide circle of friends and a full life. Work and leisure pursuits were essentially physical. Robbed of these by an obscure medical condition causing pain upon physical or emotional stimulation, I became withdrawn and depressed.

After the accident I experienced acute hypersensitivity and pain in my wrist, which was in plaster: any incautious movement of my left shoulder produced piercing pain. My sense of touch was impaired--for instance, to the fingers of my injured hand my skin felt like pumice stone. Cold always intensifies the pain. The wrist and arm pain became so unbearable that I begged my orthopaedic specialist to remove the plaster. Saying that the fracture was insignificant anyway, he removed the plaster and applied a crepe bandage instead, telling me that I was neurotic. A rigorous course of physiotherapy was prescribed, which not only increased my pain but resulted in a frozen shoulder, which has never fully recovered. Nine weeks after my injury the specialist seemed puzzled and concerned by the appearance of my arm, hand, and fingers, which were still badly bruised, the arm markedly wasted. Without any explanation he told me that he was no longer prepared to treat me. Thus began a nightmare whereby I was shunted from specialist to specialist who tended to suspect that I might be exaggerating or inventing symptoms for financial gain, and who wrote conflicting and confusing medicolegal reports concerning my injuries.

In 1979 I was referred to a hand specialist, who diagnosed a rare lesion involving the disruption of radiocarpal and intercarpal ligaments causing subluxation of the scaphoid bone which, separated from the lunate bone, had rotated backwards.

He advised an operation to excisethese bones, replacing them with a Silastic implant, adding that it was no wonder I was in pain. For a time my sanity was restored but as I had to choose between a medicolegal report or an operation an altogether different, unsuccessful operation was later performed by another specialist, and to date I still have a painful, vulnerable wrist with restricted movement. Although an arthrodesis could to some extent relieve the wrist pain, I wonder if at this late stage an implant could help me. I cannot differentiate between the pain caused by reflex sympathetic dystrophy, brachial plexus damage, or the continuing disruption of bones in my wrist as shown in the last x ray examination in 1985.

On the whole, attempts to explain my bizarre symptoms and pain to the average doctor have all too frequently resulted in my problems being diagnosed as psychogenic in origin. In fact reflex sympathetic dystrophy often goes unrecognised clinically simply because it is poorly understood. A defensive reaction on the part of the sufferer to the dismissive terminology used by the more sceptical members of the medical profession merely exacerbates the unavoidable cycle of stress exacerbating the pain, which exacerbates the stress--rendering the sufferer ever more vulnerable to misdiagnosis and misunderstanding. Taking the line of least resistance, at present I have no option but to settle for a surgical wrist support and repeat prescriptions of analgesics, diazepam, temazepam, and amitriptyline at night.

Other than being offered a place on the waiting list of a pain clinic many miles away, I have received little or no counselling since my accident. No one has explored the possibility of other physical causes for my symptoms. Three months after the accident I was given a guanethidine sympathetic block injection. A tourniquet was applied to my upper left arm and the guanethidine injected into a vein. When the tourniquet was released and the guanethidine reached my brachial plexus the pain was so excruciating and unexpected that I screamed. The doctorwrote a medical report stating that I suffered from a serious psychiatric condition. The same pain recurred during a cervical myelography in September 1984 and again in 1987 when I was injected directly into the brachial plexus without an anaesthetic.

By 1987 I had become despairing, reclusive, and convinced that I was going mad. A feeling of shame and lack of freedom to discuss my physical problems had created a deep sense of isolation and anxiety. Consequently not only do I have a bizarre catalogue of aches and pains in need of attention but also I suffer frustration, repressed anger, and a fear of discussing my symptoms.

Currently any but the mildest stimulation, physical or emotional, produces unpleasant symptoms ranging from an ache to extreme pain. Clear liquid runs from my left nostril, my left eye often feels numb, cold, and heavy; my ears ache. The symptoms which primarily affected the left side of my face have spread to include my entire face, although less so than the left. There are temperature variations between my left and right legs and feet. My mouth feels as if I have had dental block injection, yet my face is so sensitive that during dental treatment a soft cloth must be placed between my face and the dentist's hand. There is a palpable, varicose vein type nodule in the left brachial plexus, which often hurts when bending down or exercising. There is persistent pain in the lumbar and cervical spine and head, and I tend to suffer from hyperthermia.

Even a minor shock or upset, if it is sudden, causes instant hyperaesthesia and a vibrating, scalding sensation in my face; the arm and hand ache. The intensity of symptoms is commensurate with the level of stimuli. There is often a painful lump beneath the left scapula; physiotherapists comment on the odd shape of my scapulae. My face has dropped marginally on the uninjured side. There is wasting of the left shoulder and arm and a marked shortening of the injured arm, though not from the lack of use.

By nature cheerful and optimistic, I endeavour to exercise as much as possible and am still keen to take up challenging new pursuits, albeit within an ever narrowing field. But beyond the safety of home and an increasing need for bed rest, reflex sympathetic dystrophy tends to triumph over my needs and desires. Since I am constantly on guard against being touched on my left side, social interaction is minimal.

I try to accommodate my symptoms as cheerfully as possible into a low key lifestyle, but none the less fantasise about conferring under one roof with medical specialists of diverse skills who might be able to pin point my problems. Drugs such as amitriptyline, which act on inhibitory sensory pathways, definitely reduce the intensity of symptoms.--ANNA ALEXANDER lives in Cornwall

Anna Alexander 

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