transabled.org

 

• About
• Login
• Contact
• Accessibility

Google Search:
Web transabled.org Go

 

Home / Thoughts / Other's Thoughts / Chloe's Thoughts / Fibromyalgia and BIID

Fibromyalgia and BIID

Written by Chloe on Wednesday, January 7, 2009

Fibromyalgia is the only physical condition I have that is truly disabling. It considerably impacts how I manage BIID. There are also lessons I can learn from it. A lot of us seem to have impairments unrelated to our BIID. It is useful to contemplate how they interact.

The primary symptom of fibromyalgia is pain; pain which can be extremely intense. Fibromyalgia pain is far beyond any other pain I have experienced. I shall attempt to describe it, but if you haven’t been there it’s a bit like trying to describe BIID or major depression. Intense fibromyalgia pain robs one of the ability to speak. Formulating a sentence is far beyond one’s abilities. One has to think in order to speak. Thinking is out of the question. Moving is out the question. Screaming is out of the question. Even if one could think, one would still have to breathe in order to speak. Autonomic breathing has shut down. Every breath is a conscious agonising effort. One tries to breathe as little as possible. Forget about sleeping. It is amazing how long one can go without sleeping when there is no choice.

After the pain has eased up a bit, one can start to think. But there is only one thought; how to be in less pain. One would be in less pain if one was dead. I have definitely wanted to die because of this; a good reason for me not to own a gun. My worst fibromyalgia affects my left arm. I have often thought how nice it would be to have a left shoulder disarticulation amputation. No, this isn’t part of my BIID, but when I am in that amount of pain the absence of a left arm seems like a very sensible option.

Fibromyalgia, like BIID, is not well understood; and, like BIID, it can manifest in different ways. My case is as typical as any. It affects my upper body much more than my lower body, and my left side more than my right side. So my entire left arm is always in constant pain. My right leg is seldom in pain. The upper body pain frequently affects my neck and upper back as well. There is an ensemble of other symptoms associated with fibromyalgia; muscle spasms, for example, which only affect my upper back. I don’t believe the muscle spasms in my left thigh are associated because they are much more recent, although the area around my left knee is often affected by fibromyalgia.

There are different primary causes of fibromyalgia. I have postinfectious fibromyalgia, which is thought to involve an autoimmune response against muscles, tendons and ligaments. It started in 1986, and took eleven years to get a correct diagnosis. This is not unusual at all. Fibromyalgia is a bit like BIID. Patients are ignored by physicians, treatments are witheld, psychotherapy is suggested, it is implied that one is making it up. You get the picture. Physicians can’t SEE why you have fibromyalgia pain, just like they can’t SEE why you need to be paraplegic. I have learnt to save up pain medications from obvious injuries so that I have them available when I really need them. One of the biggest emotional traumas of my life was being denied pain medications in a severe fibromyalgia episode because the f*cking physicians couldn’t SEE the f*cking pain. Sorry! Yes, I’m still angry about this.

Fibromyalgia is episodic. For most people there is continuous background pain, then different parts of the body can flare up into agony. In the beginning I had no clue what this was or how to treat it. Neither did physicians. They often suggested things that made it a lot worse. The result was that my first major episode, centred around my right shoulder, lasted for two years. I believed that I would have to live with those very debilitating pain levels for the rest of my life. I think this is part of the reason I actually enjoy having some physical pain now. It reminds me how grateful I am that the pain is not worse. Eventually I discoved that megadoses of aspirin would help a lot in ending an episode. We are talking large doses here, such that the toxic side effects start producing neurological damage manifesting as hearing loss. I stopped doing this after a few years.

I have become very adept at managing fibromyalgia through trial and error. I know exactly what will trigger a major episode: physical trauma, emotional stress, viral infections, and cold temperatures. I know what works to treat it: very large doses of Aleve (naproxen)(no side effects), immobilisation of the affected part, transdermal capsaicin, and heating pads. It took a long time getting here, but I can usually knock down a major episode within two weeks now.

The treatment of fibromyalgia happens to have some crossover with my BIID: immobilisation of affected parts. My left knee area is frequently affected. When it is really bad I will use a rigid knee splint, especially at night. I already had quite a selection of knee braces and knee splints prior to my fibromyalgia in order to help manage the need for my legs to be paralysed. My left wrist area is more commonly affected than my knee. I also happened to have a good selection of left wrist braces in order to help manage a possible secondary minor BIID with regard to amputation of my left hand.

The most frequent and most severe episodes involve primarily my left shoulder. This renders the entire arm useless. I have shoulder immobilisers, slings, etc. This is when I need help with dressing, eating, etc. Sometimes it’s the right arm. On rare occasions it’s both arms at the same time. Yikes! Even with one arm affected I can’t get out of bed easily. I’ve perfected a roll out of bed without using my arms such that I land on my feet. That’s not going to work with paraplegia. More yikes!

In trying to prepare myself emotionally for paraplegia I find that I have already gone through some of the things one might expect, albeit on a much smaller scale. I had to accept that fibromyalgia was never going to go away, and that I would be in constant pain for the rest of my life. I had to accept that there were things I enjoyed doing that I would never do again. Tennis and cross-country skiing are out of the question. Swimming is limited to a back paddle with my arms close to my sides. I had to adapt to find different ways of doing seemingly simple tasks: no lifting heavy objects; no reaching for things above shoulder height; no looking over my shoulder. I had to accept that sometimes there are things I can’t do by myself that I need help with. Getting dressed is the most frustrating. When things are bad I have my partner tape my entire arm to my body so that it is completely immobilised. I guess that’s a pretty good simulation of a shoulder disarticulation.

I thought I was managing fibromyalgia pretty well… Until I got a wheelchair. Excessive wheelchair use does trigger fibromyalgia episodes. An episode in an arm makes it impossible to wheel. This sucks! I have to be pushed. I am now going through another period of adjustment of trying to deal with fibromyalgia and BIID together; finding ways of making things work. One of the ways is to "cheat" with regard to using my legs. This will not be an option after I have paraplegia.

I had not anticipated how much the new wheelchair would help with this. The effort of wheeling in the new chair is significantly less. Consequently it is not triggering fibromyalgia as much. Moreover the reduced effort allows me to wheel during a mild to moderate episode.

The combination of fibromyalgia and paraplegia together will sometimes give me the functional equivalency of quadriplegia. I don’t like this. However, it does not stop me from needing to be paraplegic. I just have to accept the reality of what it is really going to be like at times.

Tags: Agony, Amputation, BIID, Braces, Fibromyalgia, Impairments, Muscle Spasms, Pain, Paralysed, Paraplegia, Quadriplegia, Shoulder Disarticulation, Splint, Trauma, Wheelchair

Twitter Updates

Follow me on Twitter