Anybody else here dealing with fibromyalgia or CFS/CFIDS? Want to talk about it, share ideas for ways to deal with it, or just vent and complain about how miserable it can be?
I was diagnosed with fibromyalgia about three years ago; I've actually been sick much longer than that. It comes and goes for me -- some days I'm just fine, other days I'm in a wheelchair. I've had little success with conventional medicine, but a reasonable degree of luck with alternative treatments.
In a day or two, I'll see if I can dig up any information and other resources on FMS/CFS/MCS/etc. I've got a whole mess of 'em bookmarked somewhere around here...
My mom has Multiple Chemical Sensitivity and Environmental Illness. Fortunately, as she's gotten her allergies under control it has done wonders for her Chronic Fatigue, but she says she still remembers having to psych herself up just to get out of a chair and walk across a room. I find that very scary, and feel very lucky to have started my allergy treatments much earlier than she did.
I'm also incredibly impressed, because I never felt like there was anything seriously missing in the way she raised me and I know it must have taken a lot of energy that she really didn't have.
One of my close friends has CFS, i've read a little on it, but don't know that much about it, my friend unfortunately lives a fair distance away, so i rarely see him, and he dosn't talk about it much.
If anyones got any good likks can u ell me please, as i'd be very greatfull, as i would like to at least understand what hes going through.
I've been under evaluation for CFS for the past 5 years. I have not yet been diagnosed as I have been told it takes a long time.
I have days where I can't do anyhting but sleep. My freshman year of college I slept 18 hours a day and only woke up to go to class. Some days winter quarter of this year I was LUCKY if I MADE it to class.
Unfortunately, I have also been diagnosed with moderate-severe chronic depression which can also cause the fatigue similiar to CFS...and I have to run the whole gamit of antidepressants to see if they are what is causing me the hideous fatigue, joint pain,muscle numbness, etc.. I've been experiencing since I was a junior in HS.
I have fibro. I was diagnosed in the eighth grade. I find that, for me, it is better when I do nothing--when I don't think about it, I notice it less.
It affects my sleep quite a bit. I have been on lots of sleep medications, and am on an anti-depressant right now. I have found that above all, exercise IS key. It sounds trite but it helps so much when I am exercising regularly.
I don't have it as bad as some people--I hope it won't get too much worse.
For several years I was getting suckered by this woman who was a "homeopathic doctor" who sold me this overpriced stuff and my family practically went broke over it. Turns out one of the pills had ephedrine in it...They were made by Manatech, and that one was called MVP (shocking, I know). I forget the name of the powder, though.
I am wondering if anyone has had any luck with acupuncture? Medical massage helped me when I wasn't on an HMO and I was eligible for it.
My mom was diagnosed with fibro about a year ago, and after helping her to research the disease I believe I may have it also. My childhood seems characteristic of pediatric fibromyalgia-- everybody blamed me for being weak and lazy and "faking sick" when I was little. They couldn't believe that a "tall and skinny" kid like me wasn't able to complete the mile run in gym class without sitting down in the middle from pain and exhaustion. I was always complaining of terrible headaches, and even though I'm only 16 I have "lumps" in my back muscles. For as long as I can remember, I've slept for 12-14 hours a day if I can.
Seeing my mother suffer has been the worst, though. She was put on guaifenesin in the beginning of this year, and is now a lot more active and in a lot less pain. I realize that this is a slightly controversial treatment, but it seems to work for her as far as the physical aspects are concerned. She recently confided in me that she's very worried about the mental effects of the disease. She's only forty, but she claims that her judgement is impaired to the extent that she is worried that she shouldn't be driving for much longer. I haven't gotten a license yet, but she says that she'd feel better if she knew I could drive if it comes to that. The whole prospect (of my mother being that ill) scares me a lot.
I really admire people who have been diagnosed for some time. My English teacher has fibro too, diagnosed early in the nineties, and she is one of the most remarkable people I know. She's really been a great help to me in dealing with my mom's attempted recovery. Thanks for bringing FMS/CFS up here on the boards!
------------------ "Writing is not necessarily something to be ashamed of -- but do it in private and wash your hands afterwards." --Robert A. Heinlein
Do any of you have problems with keeping your grades up, and passing even though you're sick? I don't think I have what your talking about, but I do have ADD type 5 and minor depression, which I've been told can mess up my sleep schedule and everything.
-=No one can make you feel inferior without your consent=-Eleanor Roosevelt
My best friend, Patricia, was diagnosed with Fibro about three years ago. She went to so many docters and they had no clue what was going on. She had to quit her job and is now filing for early retirment. She has also gained 80+ pounds. I guess the only thing good is that she has it later in life, she is 49. I couldn't imagine haveing as a teenager or 20's. She has been really open with me about her fibro so I thought I would share some of her information. Good Sites: www.FMNetNews.com (Fibro News) www.4-Life.com (Alternate Herbal Medicines)
Posts: 3 | From: Seattle, WA, USA | Registered: May 2003
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