The short version: I was bedbound & in severe pain. Now I’m not. I am physically stronger although still a wheelchair user. My flare ups are less often and the pain is much less severe. I have found treatments that work for me and I am moving in the direction of gradual recovery.

The long version: I will explain my situation just in case it can help someone.

I don’t usually like any of the labels for my condition, but in the last 14 years I have been diagnosed with Tennis Elbow, Repetitive Strain Injury (RSI), Fibromyalgia, Chronic Regional Pain Syndrome (CRPS or RSD), Chronic Fatigue/M.E.

My physical problems started in the elbow and spread to the wrists and hands. Then to my voice, legs, feet and eyes. I gradually declined from age 28 with RSI to age 36 totally bedbound needing to be hand fed by a carer and having to drink through a straw as I was too weak to lift a cup or fork. I couldn’t bear any weight on my legs and couldn’t stand for anyone to touch my legs or feet. I was only able to travel in a wheelchair with my legs elevated. My feet and legs would go purple and deep blotchy red when not elevated. I couldn’t watch TV or look at computer screens without causing a flare up of burning pains in my eyes. I became light, sound and chemically sensitive. Flare ups of burning pain (like all the cells were screaming) would happen regularly, this type of pain was accompanied by feelings of despair. During the flare up, the part of the body affected would feel completely weak, not tired but as if the electricity to that part was completely switched off. At the worst time (age 36 – 38) the flare ups could last weeks. During these flare ups it was almost as if I was paralysed as so much of my body was “switched off” by the pain and weakness. At that time I was unable to talk, write or use sign language, most of the time I was utterly disconnected from the world.

So if it is RSD you could say it was full body RSD.

Between age 28 – 36 I saw the condition as physical one, which it agonisingly was. Increasingly though, I started to wonder if there was an emotional connection. At 36 I began having treatments that worked on the emotional/energetic level such as: Emotional Freedom Technique (EFT), Be Set Free Fast (BSFF), Human Bioacoustics (Sound Therapy), Cranio Sacral Therapy and recently Scenar Therapy. These sessions usually resulted in trauma releases such as strong emotions coming up and out, sometimes body shaking, heat, cold and crying. After each release I experienced pleasant sensations in my physical body. And a very gradual decrease in pain and flare ups.

Even though I now acknowledge and treat my condition on the emotional/energy/trauma level, I never dismiss my condition as psychosomatic. I like the way Robert Scaer describes this connection:
“The emotional component often leads the allopathic physician to designate the medical syndromes of trauma as "psychosomatic" diseases, with an emotional and not a physical cause. I think a more accurate term would be "neurosomatic" diseases, as these disorders are related to abnormalities in the balanced function of the brain and autonomic nervous system. Although the abnormal body states in trauma are hard to pin down with tests, they still are quite real and definitely are "physical."

I am now 42 and although I am still a wheelchair user, I can stand up and walk a short distance (which is gradually increasing) with no flare up. My sound and light sensitivity is about 70% better. I have regained significant use of my arms, I can feed myself and I have typed this forum post with no pain or flare up. My voice is still on and off but the flare up time and intensity is much less. My eyes are about 80% improved, I look at the computer for hours each day with no problem.

From age 28-36 I was on a path of decline. For the last 6 years I have been on a path of gradual positive progress. Everyone is different and mine is a severe case, but I have been lucky enough to find therapies that help with relaxation, pain relief and that appear to be treating the cause rather than the symptoms.