Monday, January 17, 2011

The Good, The Bad, And The Otherwise

Back in February 2010 I was referred to a specialist, a rheumatologist. He twisted my joints, poked and prodded, made a couple of comments about Asimov and sent me on my way.

My Doktor, upon receiving the rheumatologist's findings, gave me a "" look.

Regional Pain Syndrome

The symptoms of CRPS usually manifest near the site of an injury, either major or minor. The most common symptoms overall are burning and electrical sensations, described to be like "shooting pain." The patient may also experience muscle spasms, local swelling, abnormally increased sweating, changes in skin temperature and color, softening and thinning of bones, joint tenderness or stiffness, restricted or painful movement.

The pain of CRPS is continuous and may be heightened by emotional or physical stress. Moving or touching the limb is often intolerable. The symptoms of CRPS vary in severity and duration. There are three variants of CRPS, previously thought of as stages. It is now believed that patients with CRPS do not progress through these stages sequentially. These stages may not be time-constrained, and could possibly event-related, such as ground-level falls or re-injuries in previous areas. Instead, patients are likely to have one of the three following types of disease progression:

  1. Stage one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.
  2. Stage two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.
  3. Stage three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening and thinning is more dispersed.

Upon reading the symptoms, I returned the "" look to my Doktor.

The only symptom I had and have in common with this condition was pain. And you know, that's a symptom I have in common with, say, piranhas. Does that mean I have piranhas? No. No, it does not.

As such, we elected to overlook that diagnosis and continue with physiotherapy, which had been making significant improvements. For a while. Well. Yeah.

Hands started to deteriorate again, no matter what I did or did not do, which lead to the prescription of Cymbalta among other things, and, eventually, another referral to the rheumatologist.

My Doktor had specifically chosen Cymbalta as it has been proven to be effective in the mitigation of chronic pain. Curious, I asked my physiotherapist about the idea behind Regional Pain Syndrome and the theory my Doktor appeared to be latching onto in regards to overactive nerve activity and a brain that no longer filtered properly.

"Absolutely," she said. Although the problem with my hands may have started as a very straight-forward Repetitive Strain Injury, it had gone on long enough that the nerves would have changed with the conditions they found themselves in. In layman's terms; the nerves expect pain, so they make it. The brain expects pain, so it receives it.

I had my doubts when my Doktor explained his reason for the Cymbalta. Pain is not something that should be covered up. It's there for a reason, it's the best warning sign you get that something is wrong. There have been many, many steps backward on this "road to recovery" my hands have taken me on. One of the biggest was late last year. The Doktor had given me Celebrex, with instructions to take one a day for a month, and see how that helped. I was having adverse reactions to over the counter painkillers, and thankfully the Celebrex had no such effect. It's a slow-acting medication. Not designed for quick pain relief, but for chronic pain relief. It only kicks in after a few days, once appropriate amounts are in your blood.

It was lovely, being without that pain. Lovely.

At the end of the month, when I went off the Celebrex, the pain returned and was significantly worse than previously. I could only assume that without the pain to hold me back, I was working too much and not realising, and doing even more damage to my hands.

That terrified me. I wouldn't take any more painkillers after that, except at night when it was the only way I would get to sleep. The pain was necessary to keep me in check. I needed the pain, to listen to.


I was getting better.

I could see it when my physiotherapist tested the tension in my nerves, and I could feel it when she went at my muscles and nerves with her frighteningly effective hands. I could feel it when I moved and when I stretched.

Improvement = more pain?

No comprende.

The rhuematologist twisted my joints and poked me hard enough to bruise and made some more comments about Asimov, and then wrote on a piece of paper "fibromyalgia" and peered at me over his glasses.

Fibromyalgia is a medical disorder characterized by chronic widespread pain and allodynia, a heightened and painful response to pressure...Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently comorbid with psychiatric conditions such as depression and anxiety and stress-related disorders such as post-traumatic stress disorder. Not all people with fibromyalgia experience all associated symptoms.

"I've seen this," I said. "When I was reading up on Cymbalta."

He gave me his recommendations - to raise the dose of Cymbalta or stay on Celebrex indefinitely - and sent me on my way.

My Doktor was well pleased to hear this, his hypothesis being confirmed by a second source, until I pointed at that at the current dosage of Cymbalta I had noticed no different in pain levels and given the somewhat UNRELENTLINGLY ARSEHOLEY side-effects currently afflicting me, no way in hell was I going to start a higher dosage.

And that's where we are now. I'm to stay on 60mg of Cymbalta for the next couple of months. Should the current side effects of RAGING INSOMNIA and SOB-INDUCING RESTLESSNESS abate, I will try a higher dosage in the hopes it alleviates my chronic pain. If not, I'll drop back to 30mg of Cymbalta and stay on Celebrex for...however long.

I've done my reading around on the intertubes, and I have my reservations about the diagnosis. Fibromyalgia itself is something of a controversial condition, and when I look at the symptoms and requirements of diagnosis, my face gets a little skeptical. I'm not sure I tick all those boxes.

But, what my physiotherapist said makes sense to me, and she is the one who knows my condition best. I trust her opinion.

The majority of those I have shared this diagnosis with have expressed quite sharp-edged dismay, to my surprise and gratitude. Yes, well. The idea of living with chronic pain isn't exactly a happy ending. It's not something that really featured in my plans for the future, you know?

That said, I'm descended from people who pay sweet bugger all attention to pain. They shrug off cuts and don't notice bruises, strain and pull and twist things and simply treat them gently till they've calmed down, barely even notice when they're sick because, hey, it isn't actually stopping them from getting on with things. One of the problems in talking to my medical posse about my hands, for the entire duration, was being able to express the "level" of pain. When it's bad enough to keep me from working, then I notice it. Beyond that...look, I'm uncomfortable all the time, so I don't really pay it any attention, sorry.

The pain was there to stop me from doing damage. If my nerves are simply crying wolf, and there is no damage being done?

Fuck yes I will live with chronic pain. Fuck. Yes.
Fuck yes I will take medication indefinitely. Fuck. Yes.

Because what this means is the damage is not that bad. What this means is physically I can and am recovering.

What this means is I can think about writing.

I have a future, again.


Which isn't to say I can throw all caution to the wind. I'm currently filling another position at work, a role that involves more computer work than my own, and combined with the recent spate of blogging; I feel it. Oh boy am I feeling it. Ouch. Ow. Argh. Getting a bit carried away with this heady air of possibility. Oh air. Oh air.

This may be the first breath I've taken in 21 months.


  1. Am very glad to hear of the (albeit gradual) slope towards recovery, especially so about the writing. What your PT says about nerves makes sense to me and yeah the meds can help the brain as well as said nerves. OTOH pain is sucky :-/ and the raising of dosage always scares the fuck-all out of me so yeah - fingers crossed for the next few months, whichever way the dosage goes!

  2. Having lived with my own chronic problems for years (stupid frakking Crohn's Disease), I can relate and I am really REALLY pleased to hear that positive note in your post, Tessa. More power to ya!

  3. Thank you, you two. It's been a perplexing ride, this whole RSI thang, but this does seem in line with what my body is telling me. Stupid body.

    Unfortunately, what I said about getting a bit carried away?

    Yeah. Whoops. Ahem.