Posted by BarbaraCat on October 9, 2003, at 13:06:30
In reply to Re: re Fibro/ Barbara Cat, posted by kara lynne on October 9, 2003, at 1:12:48
Hi Kara,
Fibro symptoms: Hopefully this very long post will help you compare your symptoms to mine and open up a dialog between us. We fibro folks (and I'm assuming you have a mood disorder as well) are rare on this board and supporting each other will help us all. First of all, fibro vs. lupus. I wondered about lupus for myself since the symptoms are somewhat similar. I've been tested for lupus antibodies which were negative. You might want to do some web researching about this, the possibility of other conditions skewing your results and the many treatments possible. But Fibro is not lupus and the pathology is not the same, at least from what we know at this point. Fibro does not seem to be an autoimmune condition as is lupus, however, there is some talk of a possible inflammatory cytokine disorder. I'm not sure about this, but I believe that the flares of fibro are more intense and painful than lupus but are cyclical, whereas lupus is more of a constant chronic condition. I sure hope your tests are 'false positive' in this.The worst of the flares are cyclical with relatively good days between. I can't get out of bed during a flare, the longest was 3 weeks. I'm rather compulsive about daily showers so going 3-4 days without was torture in itself. My pain is like a dull gnawing deep pain in the muscles, mainly in the ligaments and only rarely in a joint. It moves around but stays in the same general area although I can get random pains in a brand new spot. I get alot of pain in my upper back and the outside of my lower leg and foot, mostly on the right side. This mainly right side pain is contrary to the standard criteria for fibro where those famous 18 trigger points HAVE to be bilateral. Not for me, although I will get an occasional left side pain. Also, I've had the standard back pains, sometimes severe, but fibro pain has a very different quality. Nothing helps the pain although I take alot of oxycodone and vicodin during these spells which don't really take away the pain as much as causing me not to care so much about it.
I've tried the usual pain meds, small doses of tricyclics at night (I was on nortriptyline for an exacerbation in depression for 3 months. It helped with the depression but not fibro). Sometimes Neurontin helps but not as consistently as it's been touted. Sometimes ibuprofen helps. It all depends on the flavor of the pain which changes from day to day. But nothing really helps. When I'm in for a bad flare I just have to live with it and take to bed. Oh, massage helps and so does heat - my heating pad is my good friend. We're getting a jacuzzi spa installed this week and I think it will help alot. I'll be able to do stretches in it which I can't will myself to do otherwise. The more out of condition I get the harder and more painful it is to get back in.
I also have alot of stiffness and periodic clumsiness because my hands can't hold things as well. This has taken it's toll on my piano playing and caused me to put away my flute for good. The stiffness is the worst in the morning. It takes me about 1 hour to loosen up and I shuffle about like I'm 90 years old. I really hope this improves otherwise I can't imagine what 90 years old will really be like.
I was quite active before this hit about 5 years ago, and then I was down. Had to stop working in the high tech field which was murder on me 2 years ago and finally finally two months ago was awarded disability benefits.
Even though I'm always in pain and stiffness to some degree, I try to take advantage of the good times and get as much exercise as possible without 'trying to make too much hay while the sun is shining' and overdoing it. I'm a belly dancer and love it love it love it, so that's what I do when I can. Also, I have a very good rebounder mini-trampoline which helps move the lymph and is something I can easily do, even if for a few minutes.
Along with the pain, I get extremely fatigued, like a toxic waste kind of exhaustion. Sometimes I can sleep with large doses of benzos, ambien, anything that will knock me out. But more likely I have insomnia along with the fatigue. And lack of Stage IV sleep is the single biggest contributor to fibro. When I say large doses of meds, I mean large doses. The usual doses when I'm relatively well don't do a thing for me during these times, like all my circuits are blown.
I used to also get horrendous bleak and despairing depressions, as if things weren't bad enough. Part of it was lying there thinking I'd never get better, what about money, what about survival, what about a life? I'm lucky to have a compassionate husband who is patient and supportive, but he's been out of work as well. The economy in my neck of the woods is abysmal and we're living off of rapidly dwindling savings and my disability. So money has contributed to major stress, and as we know, unrelenting stress can kill even if you don't have a chronic illness. In fact, unrelenting stress for much of my life is probably the reason I've come down with this. It's been a good circuit breaker and strict teacher, that's for sure.
Thank God, these hellish agitated depressions have ended since my unipolar major depression has been re-evaluated as bipolar disorder. Since being on lithium and lamictal I still get depressed but they're short lived and nothing, nothing, nothing like the nightmares of the past which were becoming a constant in my life and not just during a flare. I'm in wonder that I survived them. So I can lay there in pain during a flare, but have hope that this too shall pass. I don't obsess quite as much on the certainty that I'll be a bag lady and won't be able to take those daily showers either!
I also get irritable bowel syndrome. For a while it was alternating with blow outs and then constipation. Now it's just constipation, for which I'm grateful I guess. I take a product called Fiberzon from Amazon Herb Company. It's mainly a psyllium product, but has other rainforest herbs. It helps better than any other for me.
Last, I'm seeing a wonderful naturopath after going to about 10 health practitioners of one sort or another. My PCP doctor is a nice guy but all he can do is say 'well, there's nothing that can be done'. He's probably right - exercise and pain meds are about all anyone can offer, but jeez, a little more investigation into my body chemistry would be nice.
In contrast, using saliva and blood tests through my naturopath have shown major hormonal imbalances of the sex hormones and thyroid (which I was aware of before). I was also practically zero on Human Growth Hormone, which is produced in Stage IV sleep and contributes to muscle repair, strength, anti-aging, mood. A pivotal study at OHSU in Portland, OR found that low HGH is a major player in fibro. So, I'm injecting myself with Human Growth Hormone. So far I haven't noticed much of anything, but I'm on a very conservative dose and it takes at least 6-9 months before the benefits kick in, which are considerable. Getting my hormones working right is probably the most crucial element in my recovery right now and I'm hopeful that, if not cured, my quality of life will improve significantly.
The other implicator is 3 to 6 times the normal amount of Substance P in the spinal fluid. This enzyme is responsible to transmitting pain signals to the brain and too much of it makes the brain ultra sensitive to pain. Basically, this means that the pain is not really in the muscles or anything place, but resides in the brain misinterpreting pain. There are substances being developed for blocking Substance P but who knows how safe they'll be. You've most certainly heard of this theory and I'm probably preaching to the choir. I haven't been tested on Substance P and don't know of anyone personally who has.
Thanks for your condolences about my Mom. I miss her alot. Like any Moms, sometimes there was butting of heads and other annoyances, but all these things seem so inconsequential now. I take consolation in the fact that it was her choice. She was hit by a car and one mishap after another contributed to her death, but she had been saying forever that she didn't want to live past 85 even though she was healthy as a horse. And of course, she was 85! I find that amazing and validating that most of us go when we're good and ready. Some don't but I trust that I will so not to worry about it before then.
One lovely thing is that I've had many visits from her, very powerful and unmistakably real. I know she's doing great and she's with me and loves me, perhaps stronger and more pure now. I feel her much of the time (I didn't at all for a few months after she passed but she was most likely a very busy gal). But it's still sad that I can't physically hug her or call her on the phone and hang out with her and there's just no getting around it. So keep in touch Kara and blessings to you. - BarbaraCat
poster:BarbaraCat
thread:262093
URL: http://www.dr-bob.org/babble/social/20031002/msgs/267320.html