Posted by barbaracat on June 25, 2005, at 23:45:44
In reply to Not to Change The Topic, posted by Phillipa on June 25, 2005, at 18:18:31
Sure, be glad to help if I can with the fibro info. There doesn't seem to be any consensus as to what 'causes' fibro, as it's a collection of symptoms that can be triggered by many causes. Some say it's an overall inflammatory condition, others say pathogens, but one thing most seem to agree upon is that it's not a condition that's located in the body, but the brain. That is, although the pain and symptoms are felt in the muscles and organs, the origin of the symptoms occurs neurologically.
For me, I'd have to say that it was inherent genetic tendencies that were exacerbated by the extreme stress I subjected myself to for so long, and eventually something had to give. I'd say some of it is the healing power of time, but mainly it has to do with how my brain was misdirecting my system to assimilate hormones. I'd been building up to fibro for years because a long-standing mood disorder made coping with a high-stress job and lifestyle very difficult. I was able to limp by until I hit menopause.
First of all, conventional medicine was able to do nothing, diddly-squat, nada for me except prescribe pain medications. I went to many doctors and eventually many naturopaths, some better than others, but ultimately it was working with the naturopaths that uncovered the root dysfunctions instead of just handling symptoms.
My first step was to have a hormone panel done and everything was very low. Not surprising since I was going through menopause (interesting the majority of fibro folks are women). I was taking the usual sex hormones but the levels weren't holding. Finally, I had an IGF-1 test which measures pituitary growth hormone and it was very low. Low growth hormone has been implicated in fibro because, among its many important functions, it affects the signalling and feedback loop between the hypothalamus, pituitary and the adrenals - the HPA. These regulate hormonal processes which signal how much of what hormone to produce and how much of it gets into the cells. Childhood stress can impact the HPA as well, and it's also not surprising that an estimated 90% fibro sufferers are women who have had abusive childhoods.
I still have to take supplemental hormones (bioidentical sex hormones and thyroid) but I think the HGH allows my body to use them better. I began to notice real improvement after about 4 months of daily injections (it's no big deal to inject them at all).
Although all hormones are equally important, getting my thyroid levels to a good level was probably the most significant as far as pure fibro symptoms are concerned. Low thyroid symtpoms are almost identical to fibro and there are schools of thought that the inability to adequately uptake thryoid at the cellular level is a key player in fibro. Thyroid test levels are misleading because they don't accurately reflect what's going on cellularly and shouldn't be taken as Gospel. If I were going solely by test results, I'm taking too much thyroid and I'm hyperthyroid, but I show no signs of hyperthryroid at all and feel much better at a higher dose. Apparently, I need more and luckily I have a mainstream doctor who agrees. Realizing how crucial my thryoid health is to all of this is one of the main reasons I'm trying to stop lithium.
Injecting myself with human growth hormone was the turnaround for me but I still have to watch my health habits and stress levels - can't get away with much anymore. I really, really, really have to watch the stress because that will bring me down. I manage it however I can, with lifestyle and with meds. When I'm tired, by God, I now make myself rest.
I still have flares especially with stress or overexertion, but considering that for over 3 years I spent half my life in bed in utter misery, a week every few months is a big improvement.
I also try to do the usual good dietary things, drink alot of water and get as much exercise as I can - sometimes it takes a cattle prod, alas.
Another big step came with getting some intestinal stuff cleared up. Part of fibro is irritable bowel syndrome and the bouts of one way or the other messed up the good bacteria and let in some bad ones. A stool sample confirmed intestinal dysbiosis and when you think about, that in itself can get you feeling pretty, uh, crappy. I took a course of antibiotics to get at the bad guys and then some potent probiotics to replenish the good ones. Staying regular has become a religion for me, it's so important. So, lots of water and psyllium and flax.
Getting out of my high stress job was mixed because of the extreme financial stress it caused, and my husband after 4 years is STILL out of work. But having the time to rest as much as I could has been important in reevaluating my life, as has learning to trust that my needs are being met by God, the Universe, or whatever. Trust is a life lesson I'm constantly working on, but it's getting easier. Baby steps.
I'd say finding a way to manage and relieve stress and trust that I was safe no matter what was the most important, but it wasn't possible with all the physical malfunctions I had going on.
If your friend comes to a point of wanting to try human growth hormone, it can be extremely expensive if ordered through the regular pharmacy route. However, I found the least expensive source online at www.clubhgh.com, a reputable Canadian company with high quality HGH. Once the levels and dosage is determined by a medical exam I highly recommend ordering it through them.
Hope this helps and I wish your friend the best. Fibro has been a blessing in disguise. It made me stop and slow down when nothing else could and, you know, whatever it takes to get our attentions. - Barbara
You say you have fibromyalgia. And now you feel good and do a lot. What helped the fibro? I know someone who has it. Thanks Phillipa
poster:barbaracat
thread:509665
URL: http://www.dr-bob.org/babble/20050622/msgs/518998.html