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#10374 - 05/08/04 10:39 PM Fibromyalgia
DonnaJ Offline
Member

Registered: 11/01/03
Posts: 1076
Loc: Ohio, USA
A few years ago, I began having pain all over. I call it 'Travelling Arthritis." Or at least, that's how I described it to the doctor. He laughed and said that was indeed a good description for Fibromyalgia. He made a tentative diagnosis, and offered to send me to a specialist, but I declined. After doing a bunch of research and visiting the health food store, I have managed to get a handle on it.

Every evening before bed, I take three ibuprofens. I take a good multi-vitamin, glucosamine, flaxseed oil, and magnesium malate.

For the last three months, I've been walking on my treadmill. I keep waiting to feel better, but so far, I'm just tired. [Big Grin] This week, pain in my right hip has flared up. I think I'm going to try taking an ibuprofen before I work out to see if that helps.

I understand there are several others struggling with this malady. What have you done that's helped?

Thanks!

Donna

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#10375 - 05/09/04 07:31 AM Re: Fibromyalgia
Dian Offline
Member

Registered: 04/30/04
Posts: 401
Loc: Moundsville, WV
Hi Donna: I have had fibromyalgia for 10 years now. It took 5 years to get a diagnosis, and another 5 to find a doctor who knows what they are doing. The best I ever felt was taking amitriptiline at bedtime, and a flexeril during the day as well as attending Curves. I have a heating pad by Tempurpedic that I use everyday. Gentle stretching, keeping my weight down, quitting smoking and gentle massage are also good. Getting restful sleep is imperative to treating fibromyalgia. Make that an important goal. The doctor I have now has me only on Flexeril, as the chemical makeup of it and amitriptiline are almost identical. He has also added Klonopin to reduce my jerking. I am sleeping a whole lot better.

My symptoms were many: Restless legs (jerking), blurred and changing vision, widespread pain, multiple knotted areas of pain, TMJ, sleeplessness, migraines, numbness, tingling and on and on. I then developed cervical disk disease and have had surgery at C6-7 to remove the damaged disk and fuse that part of my cervical spine.

That was going well until last November. Unfortunately, fibromyalgia is the least of my problems right now. Overlying the FMS and causing more pain is the set in of rheumatoid arthritis and adult human growth hormone deficiency. The deficiency, interestingly enough, has recently been discovered in many who have fibromyalgia. In my particular case, I now have to have daily injections (like some diabetics) to bring my body back to my age of 41. My levels of growth hormone are that of an 82 year old.

I see you are from Ohio. If you are close to Thomas J. Romano in Martins Ferry, OH - he is one of the top doctors in the US and travels the world speaking and teaching. He also conducts research.

I would also suggest looking at these sites:


[ May 09, 2004, 12:40 AM: Message edited by: Dian ]

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#10376 - 05/09/04 07:40 AM Re: Fibromyalgia
DonnaJ Offline
Member

Registered: 11/01/03
Posts: 1076
Loc: Ohio, USA
Wow, Dian. Thanks for all the information. I do jerk at night, but didn't realize that may be part of it. I've woke myself up doing that - and then couldn't get back to sleep. Grrrr....

I'm working on getting my weight down. Boy, is that harder the older I get!

I've never heard anything about the growth hormone. I'll have to check that out. I'm sorry to hear that you have arthritis on top of everything else.

If I come across good sites, I'll check back in and post the links. Thanks again!

Donna

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#10377 - 05/11/04 07:12 AM Re: Fibromyalgia
Dotsie Offline
Founder

Registered: 07/09/08
Posts: 23647
Loc: Maryland
I've heard swimming is great for fibromyalgia. Anyone else heard that?

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#10378 - 05/11/04 06:12 AM Re: Fibromyalgia
Dian Offline
Member

Registered: 04/30/04
Posts: 401
Loc: Moundsville, WV
Swimming is good for fibromyalgia, and if you can't swim, even walking about in the water is good. Stretching (gently) and trying to keep flexible is very important. Massage is highly recommonded as long as you are not in a flare. If you are in a flare, even your bra strap is unbearable.

You should also make sure that there are not any underlying causes for your symptoms. One of the problems I've run across over the past 10 years is once you are diagnosed with FMS, then everything is blamed on it. This can cause serious health issues to be missed.

For instance, if my rheumatoid arthritis had not been detected, and left unchecked, there is always the possibility of death.

There are many diseases that need to be ruled out: Multiple Sclerosis (which is hard to rule out unless you've had it for years); Lupus, Chronic Fatigue Syndrome (which is linked to FMS); Hormone deficiencies and others.

Avoiding stress as much as possible is the best way I've found to relieve my fibromyalgia symptoms. I've learned to manage my time, turn down projects, and to remove some toxic people in my life.

Weather can also affect how you are feeling.

And a word to those who aren't sure what fibromyalgia is - there are many ways it manifests itself:
Flu-like symptoms, lethargy, foggy thinking, vision changes, widespread pain, numbness, tingling, TMJ, knots (trigger points), referred pain, etc.

From my personal experience, I know that long car rides (or motorcycle rides) can cause an extreme flare-up. As well as stress within the home and without, and from changes in the barometer. So, make adjustments and frequent rest breaks.

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