Fibromyalgia Experiences

Update as of 11/98:

I debated not writing this because I thought, "Well, I want to give people with these illnesses hope, plain and simple. And maybe this would discourage them." However, I decided to include this because I also want to give PWFMS/PWCFIDS, and people that don't have them, an accurate depiction of what living with these illnesses is like. And, much as I sometimes wish it were otherwise, living with chronic illness is not solely sunshine and lightness. No one can appreciate good days and good things without their opposites existing.

I've been having a major flare-up this month. It really sucks. I've been in more pain than usual, I've been more fatigued than usual, and I've developed some new symptoms, in the mysterious way that these illnesses mutate. Most frustrating of the new symptoms is my right knee: There are days now when it is extremely weak and will give out completely very easily. I've nearly or actually fallen more often than ever. And along with that, my feet now have days of intense pain, something I hadn't experienced much in several months. I've also been more fatigued than ever, and often sleeping more than ever, but my sleep has still overall been of extremely low quality and I still often wake up feeling significantly worse than when I went to bed. I've been able to work even less than usual (which is normally only part-time). And I've been fighting off another respiratory and sinus infection for a month and a half, to no avail. My social life has also been even less than usual because I often feel too sick to do much ch outside the house. All in all, I've been really frustrated.

This doesn't keep me from enjoying the good things, however; if anything, it (as usual) makes me appreciate them all the more. The assortment of bright yellow flowers on my kitchen table seems especially cheering to someone stuck inside the house a lot. The sunset is no less gorgeous when viewed from my big window than it would be if I were outdoors. Tending to my plants makes me more glad I'm a container gardener instead of an outdoors one; I can garden without ever leaving my house! Spending most days eating pre-made meals or take-out makes me all the more appreciative when I have the energy to actually cook something. Being housebound more has given me more time to work on my website on days when I feel up to doing a lot of typing. And do I ever appreciate the friends that take the time to care and sympathize.

Update as of 1/99:

My flare-up is still going somewhat from back in November, but it has gotten somewhat more under control...or maybe I am just not letting it get to me as much. In any case, I am still on the waiting list for the fatigue clinic. I am considering starting with an acupressurist and/or having a couple sessions with a knowledgeable physical therapist that could help me work out a more effective exercise plan. If anyone has any yea or nay comments on either one, or any recommendations, please feel free to email me.

My chronic sinus problems have also kicked up again like they do every winter. I've already tried a lot of strategies to help lessen them, and my primary care doctor is helping me come up with more ideas. As I added in the fibro tips section, the one that has recently helped me the most is bromelain, a natural supplement derived from pineapple.

The symptoms that scared me so much back in November -- particularly my joints having days of giving out a lot -- have lessened again, in the usual way symptoms in FMS and CFIDS tend to ebb and flow, so I am grateful about that. They did get worse before they got better, though, so let this be encouragement to people suffering through a major flare-up right now; remember that it does get better. There were some days back in late November that I had major trouble walking, even just across my apartment, because so many of my joints hurt a lot and would randomly give out. But I can now walk as well as I could before that particular symptom flare-up.

I am continuing to find joy in the little things that mean so much but that too few people notice. And I am, as ever, truly grateful for all my friends that have offered support, encouragement, and ideas. I also continue to get lots of supportive email about these webpages, and it heartens me to know that they are reaching others. Thank you all.

Update as of 3/99:

Late last month I finally, finally got a call from the chronic fatigue specialty clinic whose waiting list I'd been on since last fall! I've got an appointment scheduled there for later this month now and I will let you all know how it goes. I'm so excited. I hope they are the people that can finally help actually manage these illnesses. (Not cure, mind you, because there's no known cure yet, but manage.)

Other than that, I've been the usual up and down. Secondary infections have been kind of bleah, but from what I understand, this winter the one I've had that has been hanging on and on has been hitting a lot of "normals" in that same "hanging on" way, so for once I feel "average" in my illness state. Heh.

Update again 3/99:

My experience at the chronic fatigue clinic is now up on its own page, over here. In short (if you don't want to read that whole rather lengthy, detailed page), I have a new med and another appointment scheduled at the clinic and am being encouraged to start acupuncture.

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