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I need fibro help

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Old 11-01-2008, 12:49 AM   #1
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Default I need fibro help

Hi,
I had a very traumatic time with my health and personal life about 5 yrs ago. I lost family members that were very close, including a miscarraige. Had a cancer scare myself, and had 8 surgeries (all abdominal) in just two years time. (4 were in 6 mo time) I also fractured my back in 2000. Course the weight has piled on and on and on too.

I have never felt like myself since. I had a dr tell me once he thought I had fibromyalgia but that it wasnt his "specialty". Ive never actually seen the dx on my pprwk but I sure do have all the symptoms.

How does one go about getting diagnosed, is it a rheumatologist? What types of tests do they do?
What sort of treatments are used mostly?

Anyways....Ive heard traumatic events can onset fibro and I think all the surgeries and emotional trauma may have brought this on me.

Any advice/suggestions?
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Old 11-01-2008, 11:12 AM   #2
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I'm sorry to hear about all your troubles. That's alot to deal with.
Fibro is usually dx'ed by a rhuematologist. Some of them don't deal much with
it though so it's helpful to find one that you have heard does. There are alot of different "triggers" for fibro and finding out what yours are usually takes time, and trial and error. There are many rx's out there that can help but again, finding the one that helps you is trial and error.
It's taken me 3 years to "figure mine out" and sometimes it just flares and I have no idea what is making it happen. But hang in there, although it is
hard to dx and has "no cure" there are methods and rx's that can help.
There are helpful websites that have forums you can get alot of info from.
Just google "fibromyalgia".
Good Luck!!
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Old 11-01-2008, 12:30 PM   #3
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I agree about finding the right rheumatologist. I was diagnosed in August of 2004. I was fine until March of 2004 when I fell on ice going into work. It was downhill after that. My family doctor ran so many tests, all coming back negative. He finally referred me to a rheumatologist. She went over all the test results, ran a few more, but her main diagnosis came from doing the pressure point test. I think there are 18? Anyway, on me there were 14 I think, so she started me on meds that day.

Right now I am on different meds, I do water aerobics at the YMCA, go in the hottub at the Y when ever I get the chance, walk when I can. I retired a couple years ago, and since then my flares have been few. My last year of work I was only there part-time, so that helped too.

Good luck, and keep us posted!! By the way, there is a Fibromyalgia thread where you can come and talk to several of us who have experienced it.
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Old 11-01-2008, 01:09 PM   #4
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Thank you ladies!
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Old 11-01-2008, 02:49 PM   #5
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My first rheumatologist actually griped to me that rheumatologists shouldn't have to deal with fibro. "It's a neurotransmitter condition - so neurologists should treat it," she said. I asked if I should be seeing a neurologist instead, and she said it wouldn't do me any good, because neurologists don't see it as much as rheumatologists (ok, so why the griping to me?) Her advice was good, but her personality left much to be desired.

After we moved to WI, I couldn't see a rheumatologist (the waiting list was over a year), but my doctor in WI asked me to see a neurologist. When I explained my symptoms, the neurologist was shocked that I hadn't been referred to a neurologist before diagnosis. Fatigue and brain fog were my worst symptoms. The pain was bad, but I could force myself to work through that, but the falling asleep and short term memory problems were making me a zombie at work. The neurologist ordered a sleep study, a brain scan, and a test for narcolepsy (and then agreed that I had fibromyalgia).

My neurologist is my best fibro doctor. He sees a lot of fibro though, because his subspecialty is sleep disorders (He had a brother with narcolepsy who died in a motorcycle accident, probably falling asleep while riding), and sleep disorders are very common with fibro (the neurologist suspects that fibro might be caused by the sleep disorder - because if you deprive people of sleep, especially REM sleep - they develop fibro-like symptoms).

The sleep anomolies most common with fibro tend to be a reduction in sleep in general or decreases or distortions in REM sleep.

It's hard to say what tests your doctor(s) would feel you need. It depends alot on your symptoms. And treatments vary humongously too. It is a trial and error, and the important part is not giving up (one woman in a fibro support group I was in, gave up after the third medication her doctor prescribed didn't work very well for her. She decided she just had to live with her symptoms. For many people it takes a lot more than three tries to get the medications right).

Be patient, and be active in your own treatment. If a doctor tells you there's nothing that can be done - you may need to try to find another doctor. Doctors in general are getting more familiar with fibromyalgia, but there are still a few dinosaur doctors out there who believe that fibro is a mental illness, not a physiological one (despite all of the research that proves it isn't so). It is in your head (your brain), but it's not in your head (imagination).
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Old 12-03-2008, 12:24 PM   #6
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Another group of doctors that take fibro seriously are the rehab doctors, who are usually connected to a rehab facility. I was diagnosed by a rheumatologist who specialized in fibro, and my 2nd opinion was by a rehab doctor.

Interestingly, the rheumatologist said that if you think you have fibro, you probably do.
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Old 12-03-2008, 01:39 PM   #7
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Quote:
Originally Posted by Watercolor View Post
Interestingly, the rheumatologist said that if you think you have fibro, you probably do.
__________

The path to a diagnosis of fibro, sure can be an interesting one. An emergency room doctor once made a passing remark, when I told him that I was distressed that guaifenesin was soon to be going OTC, and would no longer be available by prescription because it was much, much cheaper as a prescription drug because of my insurance (I paid like $2 for a month's supply). I was taking the guai daily for sinus issues, and the ER doctor said that my pain symptoms sounded a lot like fibro and that some doctor was doing research with guai helping fibro. I didn't really give it a lot of thought, especially since all I knew about fibro was that it was supposed to be psychosomatic (hey, I had no reason to know any better).

When the health issues got worse, I still didn't think fibro until a friend online (we met on a doll maker's website) with fibro and MS told me one day "you have fibro." I thought she was nuts, but she sent me a bunch of articles and books and web addresses, and after reading them was convinced she was right. And yet, I never mentioned the possibility of "fibro" to any of my doctors until I received my first "official" diagnosis, for fear they would suspect that I was a diagnosis-seaking hypochondriac.

I don't know if my WI doctors are much better informed than my IL doctors were or I just got lucky, but I've had a lot more luck with the doctors in Northcentral WI. One thing that I never had a doctor look for in IL was vitamin D deficiency. I didn't learn that vitamin D deficiency is common in folks with fibro until after an endocrinologist I'd been sent to checked and found it.

There are so many factors to this condition, and it no doubt has many different causes, as the symptoms may be more a health cascade than a single disease process. If it is related to sleep deprivation, thousands of factors can contribute to that. Doctors are still learning, and fibro patients are often learning faster. Whenever you're in a situation where the patients often know more than the doctors, it's quite frustrating. My aunt is in a similar position, because she has polycistic kidney disease and the even rarer polycistic liver disease. Doctors don't know whether polycistic liver is a seperate disorder, or whether polycistic liver is an inevitable part of the disease process that hasn't been seen before because polycistic kidney disease patients in the past, rarely lived long enough to develop polycistic liver. With modern advancements that are keeping pckd patients alive longer, more and more of the polycistic liver cases are being seen.

Whether you've got a terminal disease or something like fibro that is life-altering, but probably not life shortening, it's tough to hear your doctor say "your guess is as good as mine," but I'd much rather hear that than "there's nothing wrong with you," which some doctors seem to say when they really mean "I don't have a clue," but don't want to admit it.
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Last edited by kaplods : 12-03-2008 at 01:40 PM.
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