Fibro-Spoons

[Originally an email, August 8, 2008 (08/08/08!)]

I happened upon "The Spoon Theory," which describes to healthy people what it's like to have an "invisible" and chronic disease. The Spoon Theory is actually about lupus, but this person changed it to be about her fibromyalgia (I think it's a her) by replacing the word “lupus” with “fibromyalgia” everywhere.

It's really good, although there are obvious differences between this person and me (she's on drugs, she has some symptoms that I (knock on wood) no longer have and that I hopefully won't get again but I could, she seems to be more functional than I’ve been so far, etc). The Spoons thing also mentions symptoms that I don’t believe happen in fibromyalgia. For example, I haven't seen anything about fibro causing hair loss (I mean, I definitely shed a lot, but that's different (normal), and also just being sick (in this case, like in a relapse or flare-up) can make you shed more than usual).

Generally, though, it does nicely explain me and my fibro, which is probably why it made me cry a little. I hope you enjoy it, and sorry if it makes you cry too.

[In another email on February 16, 2009 (exactly a year ago, how funny), after telling the friends I was emailing about some improvements I had experienced, I made good use of the spoons-talk, nicely demonstrating the usefulness of the "Spoons" concept in talking about fibro (and other chronic pain diseases or syndromes). I think what I wrote could also provide some useful advice for fellow fibro sufferers.]

Unfortunately, along with all this improving came a reminder of how I really need to be aware of my fibro and not over-exert even if I'm feeling well enough and almost like a normal. Last week at physical therapy, I was feeling quite good and energetic, so when I was on the stationary bike, I went pretty fast, much faster than usual, for a good portion of the 10 minutes. This was all fine until the next 2-3 days, when I was really, really sore, like unacceptably sore (it's normal to be sore for 1-2 days after a new or increased exercise, but this was just ridiculous). So clearly that was a reminder that I must remain aware of my spoons, and just because I’m having a really good day, I shouldn’t throw my spoons in the air and see what I catch, because even now (and probably forever), that could (and did) result in missing spoons for the next few days, and that's just not good.

UPDATE: April 29, 2011

I was fibro-googling, and found this explanation of the difference between a chronic pain sufferer and a normal person.  Like the spoon thing, it is also coming from a Lupus sufferer, and it also applies to Fibromyalgia and probably other chronic pain disorders.  It’s not as catchy as the Spoons, but it does explain that chronic pain sufferers experience pain and fatigue differently than normals do.

Groan...that link doesn't work anymore (as of March 2, 2013).  I tried to find something similar, and the best I could find was this open letter to the family and friends of Fibromyalgia sufferers.  I don't really remember the thing I initially linked to too well, but I think it might have been even better than the open letter.

UPDATE July 8, 2013

I came across this thing with lots of helpful tips for friends, family, and caregivers of people with Chronic Fatigue Syndrome, and I think these things could also apply to Fibromyalgia and other normal-looking but debilitating illnesses.  For Fibro application, simply replace "Chronic Fatigue" with "Fibromyalgia," and add "and owie" wherever it says "tired" or "fatigue."