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Old 05-23-2006, 03:14 AM   #1
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elphers HB User
How is one diagnosed?

Hi All,
I was reading a lot of the posts here and was wondering-- how were you diagnosed with fibromyalgia? I know that I have degenerative arthritis in my knee, and now in my foot. My back ALWAYS hurts! My Orthopedist doesn't seem too concerned, just gave me samples of Celebrex.
I also have celiac disease, and was reading that some of you say that fibromyalgia has something to do with gluten intolerance. Can someone please explain this to me?
I am always tired and take Xanax every night to help me sleep.(which doesn't always work!)
I am now getting B-12 shots at my hemo's office,(monthly), so I hope that they help me with some energy!
I have constant angina, which all of my heart tests came back ok.
My hands are numb at night, but years ago, I passed the carpal tunnel tests.
Also wondering if you suspect fibro, what kind of a Dr. do you need to see?
Thanks for all of the help in advance!

 
Old 05-23-2006, 06:15 AM   #2
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Re: How is one diagnosed?

I also have osteoarthritis in my knees, back pain, and hip pain. I am very tired all the time. My GP just kind of brushed me off, so I went to a rheumatologist. It took several months to get to see him, but they got me into see the physician's assistant pretty quickly. They did all kinds of blood tests to rule out autoimmune diseases such as rhematoid arthritis, and lupus. He started me on Mobic for the arthritis, Flexeril for back pain and spasms at night, and Ultram for pain during the day. He told me I had a mild case of Fibromyalgia. He tested me for the trigger points, and based on that, the fatigue, and absense of anything on the blood tests, i was diagnosed.

 
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Old 05-23-2006, 08:46 AM   #3
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Talking Re: How is one diagnosed?

Elphers, seeking out a qualified Rheum Dr. could be helpful in your case. Make sure though that the doctor has other patients with Fibromyalgia. Just ask when you call in to the person on the phone. It will crucial you find someone that does & again is a doctor that listens.

Just as a note - numbness in your hands might be a symptom of multiple things. Do you get tinglying & pain as well? Can you discern hot/cold with them?

Keep us posted on how you do & hope you are feeling better soon!

 
Old 05-23-2006, 09:36 AM   #4
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Re: How is one diagnosed?

Hi Elphers,

I ran across a study a while back that suggested that fibro is little more common in celiacs than in the general population.

In some cases (perhaps a minority of cases), food allergies/intolerances contribute to fibro or to fibro pain. So little is known about fibro at all, I'm not sure that the whys & wherefores are understood. However, there are a few testimonials out there, where people reduced or eliminated fibro pain w/dietary changes. If it works, I say go for it! But obviously it does not work for everyone.

Fibro is often dxd by a rheumatologist. It is a diagnosis of exclusion, without a definitive blood test or biopsy (as yet). Symmetric soft tissue (not just the joint itself) tender points in all 4 quadrants of the body, plus fatigue, unaccounted for by some other disease, usually gets you admission into the 'fibro club.' You can find pictures of where to ck. for tender points in many library books on the subject of fibro.

I have fibro plus osteoarthritis plus an autoimmune/collagen vascular disease, plus Hashi's autoimmune thyroiditis, plus gluten intolerance. I do not have any blood markers for celiac disease, however, both of my kids are gluten intolerant (one is celiac, the other has severe IgE "gluten allergy"), and I just discovered by accident when I decided to prepare all of our food GF, that removing gluten cured my life-long severe IBS. One problem down, anyway!

There are a few fibro specialists (and not all rheumies are fibro specialists) who believe that endocrine issues are central in fibromyalgia. Esp. thyroid & adrenal issues. I have found that when my thyroid is adequately treated, all of my pain is greatly lessened. But it is not easy to find a doc who will go the distance. The vast majority worship/ck only TSH, and this does not serve one w/fibro or chronic pain well, at ALL. There's much more info on the thyroid healthboard, but free thyroid hormone levels (free T3 & free T4) in addition to the TSH, plus antibody levels, are the tests that are needed for thorough consideration of thyroid contributions. As you probably know, autoimmune thyroid & adrenal issues are much more common in celiac disease than in the general pop.

Carpal-tunnel like pain & numb hands, esp. at night, are very common in thyroid disorder. The main shot of thyroid hormone released by the body is in the early a.m. ...

Any degree of anemia, even low-normal ferritin (the iron storage #), can interfere with utilization of thyroid hormone in the body. And celiacs are very prone to iron malabsorption issues.

Osteoporosis is another painful celiac bugaboo, due to calcium & vitamin D malabsorption issues.

Unfortunately, medications typically Rxd to treat osteoarthritis & other orthopedic conditions are typically NSAIDs (Aleve, Motrin, Aspirin, etc), and stronger stuff like Celebrex. I have read research demonstrating that longtime NSAID users have a relatively high rate (10% in the study) of developing at least some degree of intestinal villi destruction. To me this says ... be careful if you are a celiac, this stuff could set you back.

Most docs are not aware, but Rx pharmaceutically compounded topical NSAIDs are available. These are creams/gels applied in tiny amts directly to the skin over the painful joint. The NSAID is in a carrier base that allows it to penetrate & reduce inflam & pain. I find pain reduction occurs within minutes. Because a much smaller dose is needed (a few mg. per application) and because the med is utilized locally, there is much less potential for gut issues. (Though I have not seen research to that effect).

The Rx topical NSAID (compounded -- needs a compounding pharmacy) I use is called ketoprofen (also available as an oral NSAID). I highly recommend it to you as an alternative to the more gut-destructive meds. It makes me feel valuable to know that it was first used on million-dollar race horses!

Best wishes
.

Last edited by elmhar; 05-23-2006 at 09:42 AM.

 
Old 05-23-2006, 03:57 PM   #5
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elphers HB User
Re: How is one diagnosed?

Suni321,
Thanks to you and all for the replies. In answer to your question, I can tell hot/cold with my hands, but they are tingly, especially my right hand. They both go numb at night, but my right hand more often. My hands are always cold, too.
I also have osteoporosis. Is that part of having fibromyalgia?
I might make an appointment with a rheumie sometime.
Do you think that this fibro might be causing my chest pain?
Thanks!

 
Old 05-27-2006, 01:42 PM   #6
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Re: How is one diagnosed?

Quote:
Originally Posted by elphers
Suni321,
Thanks to you and all for the replies. In answer to your question, I can tell hot/cold with my hands, but they are tingly, especially my right hand. They both go numb at night, but my right hand more often. My hands are always cold, too.
I also have osteoporosis. Is that part of having fibromyalgia?
I might make an appointment with a rheumie sometime.
Do you think that this fibro might be causing my chest pain?
Thanks!
Elphers,

I also have osteoporosis and am on Forteo by injeciton daily (Subcut) but that is another story as I am sure you well know. No, that and FM do not nedcessarily go together but I think quite often many women who have osteoporosis may also have FM. if that makes any sense.

Let me say that It tool me over 20 yers to get dxed with FM and CMP and I did what someone else siad here that I think is very important. Go to an endo and have your thyroid and all checked. It is also true that all docs do not want to go the diistance and think you are normal with a TSH of 5 plus as I had. Luckily my endo did what she had to do and got me down to a 1 something. I probably felt a little better after that but I still had plenty of symptoms of FM/CMP. The endo did however get more aggressive with my osteoporosis and I go back for checkups with her on my thyroid function.

GET COPIES OF ALL YOUR LABS SO YOU WILL BE ABLE TO TAKE THEM TO YOUR NEW RHEUMY.!!! That way you will not have to have all these tests done AGAIN !! Do also as suggested and when you talk to the rheumatologists office please ask them if she dxes and treats patients with FM/CFS, etc. You will save yourself alot of time and money that way.. I did this and found out that one rheumy that was treating one of my friends ( who was excellent) did not treat FM patients but the office did give me the numbers of others, one of which I already had from my PCP.

I had a great history and with all my labs that I gave her I almost dxed myself. About 20 + yrs ago I was dxed wirth Ebstein Barr Virus ( that was thought to have been one of the causes of CFS/FM, etc. At least she agreed with me after talking about the pressurepoints. She did not however push my points very much and most of my pain is in the head and neck area (the Chronic Myofascial Pain). However, I do have plenty of other pain but head and neck is usually predominant. I am not in the process of trying out different drugs to see what might help !!

Before this I almost gave up and had previous gone to a neurologist who also thought I was normal, but this was quite a few years ago. They have learned alot about these DD lately although alot still needs to be learned.

Good luck to you and please let us know what happens.

Lots of soft hugs and blessings !

Granniluvs8

 
Old 05-27-2006, 04:54 PM   #7
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Re: How is one diagnosed?/P.S.

Elphers,

BTW, I forgot to tell you that also almost always have cold hands and feet. That is also after I have gotten my thyroid straidghtened out by medication. Cold extremeties can mean many things including FM, thyroid problems among others including poor circulation.. I will never get away from that I am sure. It is also inherited as I can atell you mymother told me tht even when she was a child she had cold hads and had to sit on them in school to keep them warm.

It depends on what kind of chest pain you are having. I believe that there are some pressure points in that area although they do not bother me that much most of the time. Everyone and every case is a little bit different. There are many symptoms but not every one has all of them necessarily.

Blessings.

Granniluvs8

 
Old 05-29-2006, 08:49 AM   #8
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Re: How is one diagnosed?

I was diagnosed after MS was ruled out with MRI and i had some blood tests. I had 11 tenderpoints. I was diagnosed by my PCP, a neuro, and a rheumy.

 
Old 05-31-2006, 10:22 PM   #9
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Re: How is one diagnosed?

Mine started as mono but after 6 months of feeling the same my doctor knew that something else was up. I went to all kinds of specialists and had just about every test they can run and finally I got in to see a rheumatologist and she was the first to say that she thought I had FM. Then I was sent to Vanderbilt Universit Hospital in Nashville, TN to see a pediatric rheumatologist who confirmed the diagnoses. He said that he gets over 300 children in there a year that potentially have FM but about 3 out of those 300 end up actually having it. I happen to be one of those lucky 3...lol

 
Old 06-01-2006, 07:02 AM   #10
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Re: How is one diagnosed?

Quote:
Originally Posted by Granniluvs8
Elphers,

Let me say that It tool me over 20 yers to get dxed with FM and CMP and I did what someone else siad here that I think is very important. Go to an endo and have your thyroid and all checked.

It is also true that all docs do not want to go the diistance and think you are normal with a TSH of 5 plus as I had. Luckily my endo did what she had to do and got me down to a 1 something. I probably felt a little better after that but I still had plenty of symptoms of FM/CMP. The endo did however get more aggressive with my osteoporosis and I go back for checkups with her on my thyroid function.

GET COPIES OF ALL YOUR LABS SO YOU WILL BE ABLE TO TAKE THEM TO YOUR NEW RHEUMY.!!! That way you will not have to have all these tests done AGAIN !! Do also as suggested and when you talk to the rheumatologists office please ask them if she dxes and treats patients with FM/CFS, etc. You will save yourself alot of time and money that way.. I did this and found out that one rheumy that was treating one of my friends ( who was excellent) did not treat FM patients but the office did give me the numbers of others, one of which I already had from my PCP.
Thyroid TSH normal changed in late 2002 to .03-up to maybe the 5 you mentioned. Since then, it's even lower, with some, but I guess controversial. I get fibromyalgia, muscle pain, especially in arms, anywhere above .01. In 2001 or 2 the gov't "standardized" potencies of the different brands of T4 I think, must not have told doctors, possibly one reason the range changed. After a few months I started getting fm and no doctor seemed to know what caused it but a new one switched me to a different brand, which helped, as if they're not really standardized (?) after all. You're supposed to be careful about changing brands. Many people can't take the one that starts with an "s", I've read at a thyroid forum. That's not my brand either.

 
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