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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-15-03 11:36 PM
Original message
Fibromyalgia
I've recently been diagnosed, although I've had the symptoms for about 20 years now.

I started taking a drug called Bextra lately - does anyone take this or know much about it? It kind of makes me sick to my stomach.

Also, I am curious about malic acid and magnesium - I hear that both of these substances can help with the pain.

I couldn't tell you what I would do or pay for one pain-free day. I can't even remember what it's like to have a pain-free day. Thanks for any help, and to any of you out there who keep this kicked.

xoxo
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Maddy McCall Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-15-03 11:41 PM
Response to Original message
1. I have a friend who just went through the...
worst kind of back surgery you can imagine...wont spell it all out, but let me say this.


she has in the past been on every kind of medication you can imagine. ONLY BEXTRA RELIEVED HER PAIN! I just got off the phone with her and she was singing its praises.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Wed Oct-15-03 11:44 PM
Response to Reply #1
2. Thanks
It's the only thing that's helped me too. Geez Louise, I need to get a lifetime 'script for it! And it's non-narcotic and doesn't make me tired. Hallelujah!

I hope your friend is doing better - back surgery is NO fun.
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StrongBad Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 12:03 AM
Response to Original message
3. Hi
Edited on Thu Oct-16-03 12:04 AM by StrongBad
My ex-girlfriend has fibromyalgia, which is fairly odd because she is young (22) and I believe that it generally is associated with older age groups.

She refused any kind of medication and just endures with the pain. Now, I don't know if the level of suffering is on as high a level as yours, but that was her course of action which I still don't fully understand.

If you are able to do so, basic exercise is supposed to help minimally, as is physical therapy (if you have the luxury of affording it of course).

Hope you are able to cope!
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kanrok Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 12:08 AM
Response to Original message
4. Sorry to hear about your diagnosis
Many doctors believe this is a diagnosis of exclusion.I.e., they really cannot get a handle on it. Rheumatologists are all over the board on this. There are pain treatment centers set up specifically for this and for myofacial pain syndrome. I whoheartedly suggest contacting one of these centers. They have been very helpful to many of my clients. Google "pain treatment center" and you'll probably get a decent start. Good luck.
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Speck Tater Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 12:08 AM
Response to Original message
5. I've had it fo about 40 years.
What has always worked best for me is more or less constant, but mild exercise. 2 or 3 miles of walking every day and lots of yoga stretching.
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pansypoo53219 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 12:40 AM
Response to Original message
6. you have my sympathy
my aunt has it .
as if migraines and bad allergies wasn't enough.
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NightTrain Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 12:43 AM
Response to Original message
7. A very close friend of mine has it

She was diagnosed about 10 years ago. Whenever the weather is cold and/or wet, she spends most of her time in bed, in great pain.

The truly sad thing is that my friend has shown me pictures of herself before she contracted the disease. In them, she looked youthful, happy, and the picture of health. I'm sorry to say, she doesn't look that way now.

That my friend manages to maintain a generally optimistic outlook despite her perpetually failing health is a testament to her spirit.
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nothingshocksmeanymore Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 01:53 AM
Response to Original message
8. Not certain about the acid and magnesium but if you can tolerate the
Edited on Thu Oct-16-03 01:57 AM by nothingshocksmeanymo
stomach symptoms from the Bextra, it is a cox-II inhibitor which means it works on the signals that your brain gets that communicate to your central nervous system and interrupts the message of PAIN (to put it in laymen's terms)

If it even MILDLY improves your symptoms then take it as long as the nausea or whatever is mild..that will abate.

Once it IS effective, then GO WALKING..it is the best thing in the world if you can tolerate it. Walking, getting outside, and the like INCREASE your endorphin level which is your body's own natural pain reliever.

If you live in a wooded area, then make sure you have been tested for Lyme's disease. IF a doctor has NOT specifically done a Lyme titer (and one can get false positives and negatives so it is good to get this more than once, it isn't expensive) then that should be ruled out since symptoms are similar.

Also, if you absolutely cannot handle the bextra, you can try Vioxx but the Bextra is said to be a bit more effective.

Also, if you have JOINT pain, ask your doctor about Ketoprophen cream which is a topical cream that has a pain reliever in it and is absorbed through the skin.

Hope this helps.

Wish you the best.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-17-03 05:11 PM
Response to Reply #8
16. My dad tried Vioxx for arthritis
And couldn't tolerate it at all.

For now, I'm basically okay with the Bextra, but I have to have a very full stomach to take it (which is complicated by this crappy cold I have now). UGH

I hadn't considered Lyme disease and I don't think my doctors have either. I live downtown and I wouldn't even know what a tick looks like, to be honest... Hmmm...
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nothingshocksmeanymore Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-17-03 05:50 PM
Response to Reply #16
17. If you have visited a wooded area or even certain beaches, it is possible
to contact it...since you have had the symptoms so long, it would have occurred any time in your past..best to get the blood test and rule it out.
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geniph Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 04:01 PM
Response to Original message
9. I was diagnosed with it almost 20 years ago
what helps me most is to try to walk fairly regularly (a treadmill's helpful, but it's better for me to walk outside in the daylight if at all possible, since I have SAD symptoms as well) and getting deep, restful sleep. Half an antihistamine or a small dose of melatonin can help me sleep, as does keeping the bedroom cool, dark, and quiet.
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Chuckup Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 04:03 PM
Response to Original message
10. I read about it here
http://www.healthtalk.ca

They have a forum about it...I like to talk about health, it is an area of interest to me. Sorry to hear about your condition.
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speckledgator Donating Member (232 posts) Send PM | Profile | Ignore Thu Oct-16-03 04:09 PM
Response to Original message
11. My partner has been
taking bextra for a few months...for arthritis though, not fibromyalgia. But she has to make sure to take it with food or it makes her sick as well. No other ill effects for her! good luck!
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catpower2000 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 04:15 PM
Response to Original message
12. Physical therapy...
I work in a PT office and one of our therapists specializes in treating fibromyalgia and chronic pain. When you are looking for the right PT, be sure to ask about manual therapy, soft tissue, muscle energy, and ESPECIALLY trigger point techniques.

We had a patient named Mary. She had had fibro for over 10 years (although not diagnosed til much more recently). When she came to us, she used a cane on good days and crutches on bad days. She is 35. She came to us for 5 months, twice a week. At the end, she was completely pain-free 85% or so of the time. When she did have pain, the PT had taught her techniques that she could relieve it herself. She said it was the most empowering experience of her entire life, and it's all done without drugs or surgery. She no longer used any assistive device to walk at all.

I am a convert, I've seen so many fibro patients get better so quickly and painlessly with PT. But you HAVE to find the right therapist. See if there's a local fibro group that you can check with and see if they've had PT somewhere and how it went.

Good luck,

Cat
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Snow Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 04:30 PM
Response to Original message
13. Curiosity......
anyone have any luck with acupuncture on this?
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geniph Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Oct-16-03 06:29 PM
Response to Reply #13
14. I didn't
but I can't sit still for that long, so I started fidgeting, and whacked a couple of the needles, driving them in far enough to hit bone. It didn't HURT, precisely, but it felt very wrong. Chiropractic has also been of no use to me, nor has TENS (again, I can't stay still, and end up shocking the hell out of myself with the TENS unit). Hot packs, stretching, mild exercise, and sleep - those are the things that help me most.
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Oct-17-03 05:08 PM
Response to Original message
15. Thank you to everyone who posted on this thread
I didn't bookmark it and had to search to find it again.

I did try acupuncture but didn't get any real relief, although the treatment itself was very relaxing, so in a way, I guess it helped.

Massage helps me quite a bit, but I have to argue with my insurance for coverage for it (long, annoying story).

Thanks again, you are all great!
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