Did Fibromyalgia Save Me?

The following was written in February or March of 2010.  I neglected to revise and post it until now, after reading this Esquire article and Roger Ebert’s response to it.

**DISCLAIMER: The following are just my opinions and/or my experiences.  Do not use anything in this blog to justify avoiding medical treatment or to justify anything else.  Talk to your healthcare provider and see my other disclaimers on the right.**

I was shocked to see what happened to Roger Ebert.  I didn’t see the Oprah episode first – I saw this article about it.  I had no idea that Roger Ebert had thyroid, then salivary gland, and then jaw cancer, that the surgery to remove part of his cancer-ridden jaw and the radiation caused his carotid artery to burst, or that he was left without a jaw and without a voice after his doctors saved him from bleeding to death.  I didn’t know that other parts of his body suffered as doctors tried unsuccessfully to reconstruct his jaw.  My heart broke as I watched this clip.  I actually didn’t realize he hasn’t been on TV in four years.  Four years ago…I guess that would be 2006; my fibromyalgia started in 2007, so maybe this was all coming out when I was in too much pain to know anything, or maybe it was kept quite, or maybe I was living in a cave at the time.  Anyway, as sad and heart breaking as it is to see what’s happened to him, it’s also heartwarming to see that he remains optimistic and enjoys his happy life, and that, thanks to CereProc, Roger Ebert can have his own voice back.  It’s wonderful to see that he has survived, and continues to have his voice heard.

A few months before my Fibromyalgia started, one of my doctors felt a bump on my thyroid.  The non-invasive tests couldn’t determine for sure whether the bump was benign or not, so, exactly two days before my Fibromyalgia started, I went to see the surgeon about the removal of Bobby.  That is my thyroid tumor’s name; it is to be spoken with a British accent.

Normally, I’m terrified of any kind of surgery; I’m really uncomfortable with the idea of being sliced open in any way.  Because of that fear, other than my wisdom tooth removal, I have avoided every other surgery any of my doctors have ever suggested or strongly encouraged (I think there were only two).  The Bobby-removal was different; my doctor told me I had to remove it because even if it’s benign, it could grow and because of its location, that would not be good, I assume because it could block things that I enjoy, such as eating and breathing.  I was fully convinced that this surgery wasn't one that I could avoid when the surgeon mentioned that there was a 30% chance that it was cancer.  Also helpful in convincing me was the fact that this particular surgeon was willing to do the surgery with a local anesthetic, which eliminated my fears of general anesthesia.

After my Fibromyalgia symptoms began, it became clear that my body couldn’t possibly handle surgery, so my doctor told me we could wait, so we did.  When I went to my next checkup a few months later, that doctor found that Bobby had miraculously shrunken a little.  They didn’t believe my tumor could shrink.  But it did.  So the surgery was no longer urgent -- the cancer risk was either gone or almost gone (I can’t remember which) since it had shrunken.  A few months after that, it shrunk s’more.  It has remained the same shrunken size since then (knock on wood), but that’s ok, it shrunk enough to let us all know there’s no need to remove it now (if it grows enough to cause problems, I assume that would change).

When Bobby shrunk, I realized that my Fibromyalgia, as horrible as it is, had saved me from surgery that I fear so very much.  I wondered if my body decided to do something drastic since my brain had become willing to have it sliced open; it was as if my body had to buy some time.

After seeing what happened to Roger Ebert, with his surgery going awry, I feel even more strongly that Fibromyalgia had not only saved me from surgery that I fear so intensely, but it might have also saved me from a lifetime of a different kind of disability.  As I mentioned in a previous blog posting, I’m also legally blind (from birth), so either way, another disability would have piled on struggles, and I imagine that Fibromyalgia might be a lesser evil than what could have arose.  Of course, if I’d had the surgery and something went wrong, I still could have gotten the Fibromyalgia on top of that.

I’m grateful to G-d, to my body that has often saved itself, and to the Universe, that I didn’t have surgery that could have potentially caused so many other problems.  The surgeon who would have performed the Bobby removal is probably a great surgeon, but I can only imagine that a celebrity like Roger Ebert probably had a great surgeon as well; there are always risks with surgery.  I’m really grateful, even to Rachel (my fibromyalgia’s name), that I didn’t have surgery at that time.

Beyond the obvious irony of one horrible debilitating syndrome saving me from other terrible things that could have been, there is further irony in Rachel saving me from Bobby-removal.  I’ve read that it is thought that Fibromyalgia can be triggered by a physically or emotionally traumatic event, and I believe the impending removal of Bobby and part of my thyroid gland might have been the emotional trauma that might have summoned Rachel.  As I mentioned, it was exactly two days before the onset of my Fibromyalgia symptoms that I saw the surgeon and became fully convinced that I should have the surgery, and became aware of the 30% chance that Bobby was malignant.  I should have been freaking out – I should have been an emotional wreck.  But I wasn’t – I couldn’t even cry (despite my attempts).  It was too much to handle, so I detached, I didn’t feel anything, at least not as strongly as I should have, and normally would have.  My Fibromyalgia symptoms began with what appeared to be a terrible (unknown) viral infection (based on how my body reacted), and that was very possibly the physical trauma that helped trigger my Fibromyalgia (I’ve read that Fibromyalgia can start with a big infection).  However, I believe that the unfelt emotional trauma of a (second in two years) cancer scare and intense fears of impending surgery might have also contributed to the onset of my Fibromyalgia – the very Fibromyalgia that saved me from the surgery that I so feared and bought time for my body to confirm that my tumor is benign.  Knock on wood.

Carrying the Hands of Time

I wrote the following 2 years ago, approximately 2 months after my Fibromyalgia began. I intended to post it on my Myspace blog at the time, but then decided against it, not wanting to be public about my illness. So I’m posting it now. (I did end up emailing it to a handful of friends and family at the time).

This was written before my diagnosis (I believe the diagnostic criteria for Fibromyalgia require at least 3 months of suffering). In fact, it was also before my misdiagnosis. In the 6 months that would follow, I had 3 relapses that were significantly worse than the original lapse (flare-up, whatever you want to call it) that I speak of below (I haven’t had any real relapses since I started physical therapy after my diagnosis (knock on wood)). When I wrote this, I still thought this was something (all the doctors could tell me at the time was that it might be a virus) that would go away and have a clear end. I had no idea of the chronic nature of what I was facing.

August 22, 2007

As most of the people who know me probably know, I've been afflicted with some unknown virus (every conceivable cause for my suffering has been ruled out) for almost 2 months, and although the bulk of the severe physical pain it caused dissipated within a week (or more?) some pain still persists. But that's not the purpose of this.

Since I've been fraught with pain and illness, I've had some strange and interesting experiences involving the mutability of the perception of time and a strange dichotomous sense of bodily awareness (or something like that). The latter, as well as other things I've experienced during this illness, have provided me with new insight that goes far beyond empathy for people suffering from various afflictions.

Throughout my illness, my perception of time has been distorted in sort of a disturbing way. For the most part, time, while I'm moving forward in it, moves so slowly. This makes sense, because it's not exactly fun when you're sick, and time sure does crawl slowly when you're not having fun. But when I look back on the time that has passed, the slowness isn't always maintained in hindsight. To the contrary, it seems to speed up when I look back on it --but it doesn't seem to have flown by, rather, it's slipped away: Has it really been a week since my last blood test already?...Where did the time go?...Where did Wednesday go?...Where did July go?...Where was I?...Did I really miss it? Is the summer really almost over? This all may sound normal, but it's different from normal....It's like it's vanished into the nothingness that it was for me. Life has moved forward -- people have moved forward and done things -- while I haven't moved, while I gradually recover from some unknown virus.

In the early days of my illness, my left shoulder was essentially crippled with pain, to the point where I really couldn't move it much if at all. When I would walk (very slowly), I found myself literally carrying my left hand with my pain-stricken but still functional right hand (fortunately I’m a righty). This was an odd experience -- it felt almost as if my left hand was paralyzed, as if it didn't belong to me, it was just some inanimate object. I didn't lose sensation in my body at all (physically or mentally), yet I still somehow experienced what I can only call illusions of detachment and inanimateness, like some strange dichotomy of movable parts and immovable parts. There is a neurological disorder [Somatoparaphrenia?] in which afflicted people believe a part of their body doesn't belong to them. That disorder involves a problem of perception, of propioception, I believe, and that is not what I experienced. However, carrying my own hand around gave me insight into what that might feel like (of course I always knew it was my own hand).

This illness has also given me new insight into what it's like to suffer from arthritis and chronic pain. I know now what it's like to hear that you may have rheumatoid arthritis (which I do not, thank G-d) -- I know now how it feels to essentially be told that this unbearable severe pain you're in right now will last forever, and may continue to not respond to medications. I understand more fully than I ever could before, why commercials for medications intended for rheumatoid arthritis make a point of being as positive, hopeful, and optimistic as possible. I understood these things before, I sympathized and even empathized before, but now I have this insight and understanding that goes far beyond any of that. I literally know what it feels like, and I'm truly grateful that I'm recovering, and my pain will end.

I think this might be too depressing to post....So I'll end with the bright side of being sick...

Being sick (at least for me) is a great way to lose weight! I don't recommend this method of weight loss though, it's very painful.

[Update: At some point, the weight loss stopped, and I began to gain weight. I’ve gained about 25 or more pounds in slightly more than 2 years since the fibro began, and I can’t seem to lose weight, no matter what I do. So I just try not to gain more weight.]

Since I've been sick, I've learned some new things about some of the ailments that were ruled out and about those that were suggested by people. Learning is always good.

My (finger) nails have grown longer and have become stronger than they've ever been before. This likely resulted from not using them (to open things, etc) as much as I do when I'm healthy. Long nails are pretty! Well, maybe they'd be prettier if they were polished.

[Update: My fingernails have remained stronger than they were pre-Rachel (pre-Fibro that is, see previous blog posting for details about Rachel's name). I’m guessing it (also) has something to do with the glucosamine/chondroitin/MSM and fish oil that I think I’ve been taking since I got sick (I’m not sure when I started taking the glucosamine etc, and I know I was wasn’t taking enough fish oil for the first several months of Rachel).]

When I was in the ER briefly in the beginning of this illness, the ER doctor was unbelievably hot...Clearly, that was nice.

I'm sure there are other silver linings, but I think that's a nice sampling. So if I've depressed you, I hope that this portion of this blog has rejoyified you (I'm allowed to make words up, I'm a linguist :-p [Well, I was a linguistics major in college anyway haha]).