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Old 05-16-2006, 06:28 PM   #1
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tarnold HB User
Newly diagnosed with fibromyalgia

Hello my name is Tina and I have just been diagnosed with fibromyalgia. IT has been a long time coming. I have been having trouble for years with different aches, pains, cramps, tremors, fatigue and weakness. A friend of mine recommended this site to me. If you all have any words of wisdom they would be greatly appreciated. I just got out of a 6 day hospital stay and I am in a lot of pain at this moment. I see a doc on Thursday who is supposed to put me in contact with a specialist. I hope you all are having a great evening and I wish you all good health. Thank you for your time. Tina

 
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Old 05-16-2006, 06:59 PM   #2
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Location: St. Louis, MO, USA
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GodsGirl4ever06 HB User
Re: Newly diagnosed with fibromyalgia

Hi, I'm Julie and I'm 18 years old (one of the youngest round here). Welcome to the boards. Everyone here is so wonderful and nice and is FULL of words of wisdom. You have come to an AWESOME place! Anytime you have any questions, just want to rant, or anything, this is your place.

Just take it day by day. That's all any of us can do.

Again, welcome. I'll probably write more later . . . back is killin me, need to lie down . . .

God bless.
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Diagnosed with:

Fibromyalgia
Mitral Valve Prolapse
Tachycardia
High Blood Pressure
Nummular Eczema
Depression
Esophagitis
Solar Urticaria (but not officially yet)

 
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Old 05-19-2006, 08:45 AM   #3
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Tara W. Cohn HB User
Unhappy Re: Newly diagnosed with fibromyalgia

I was just diagnosed a few months ago and the pain in the AM is especially hard. Going downstairs and up the stairs before I take my pain meds is horrible. I am currently using Cymbalta, Tramodal and Soma for the pain. I'll be seeing my Neuro Dr. this next week.

I am so glad I found this website and look forward to meeting you all! The more support the better.
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Old 05-19-2006, 12:37 PM   #4
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elmhar HB Userelmhar HB User
Re: Newly diagnosed with fibromyalgia

Hi Tina,

Were you dxd with Type 1 or Type 2 diabetes? The autoimmune types of diabetes are sometimes correlated with gluten intolerance, which can be tested for. In some cases, gluten intolerance -- which is highly treatable -- also contributes to fibromyalgia.

Certainly keeping your blood sugars at an optimal level will help your healing.

It's impt to have a thorough evaluation of your thyroid gland function. Some fibro specialists feel that thyroid malfunction is a major contributor to fibro pain & symptoms. The majority of docs go by TSH test only, which does you a great disservice. There are other thyroid tests that are much more helpful.

Autoimmune thyroid disorder and autoimmune diabetes can occur together.

IME, there is one approach to fibro that simply treats symptoms -- pain pills & psych meds. IMO, the better approaches will not only help with pain management, but also look for causes contributing to the fibromyalgia. Many of us have made improvements in our lives by finding & dealing with those root causes.

The book From Fatigued to Fantastic, by Jacob Teitelbaum, MD, a fibro specialist, is a great place to start learning about this disease. I got my first copy at the public library, but now own the most recent edition, over 400 pages of thoughtful commentary on the best medical & alternative med diagnostics & treatments for fibro. I highly recommend you read this book. It will give you a lot of hope in an otherwise dismal landscape.

Best wishes.

 
Old 05-19-2006, 08:20 PM   #5
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jeepbabe HB User
Re: Newly diagnosed with fibromyalgia

Hi my name is Sunnie and I was just diagnosed yesterday after years of unexplained pain and a very bad last year and a half. Between 2 surgeries and countless tests I was finally diagnosed. I am on Cymbalta right now and my Nuero Dr. is actually the one taking responsibility for treating me. He has the aproach that you have to work on the brain in order to control the problem. He is a nationall renouned Dr. and I trust him 100%. In eight weeks I go back for an evaluation of my progress.

Now away from the dr. stuff. Does anyone else have problems with their work? I mean like being advised that if you miss any more work you will be fired? I have been very sick the last 4 months and have missed a fair amount of work this year. I can understand letting me know that it is becoming a problem, but I can not help that I am very sick. Even after I told them that I have Fibromyalgia they put me on a 90 day probation wherein if I miss any work I can be dismissed immediately. I am very upset. I put over 100% into my work and I offer my help before anyone else. Anyways I just needed to vent. I feel like nobody understands. Does anyone else go through that?

Thanks,
Sunnie
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Last edited by jeepbabe; 05-19-2006 at 08:21 PM.

 
Old 05-20-2006, 07:49 AM   #6
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tarnold HB User
Re: Newly diagnosed with fibromyalgia

THanks Elmhar for the wonderful info, I will look into the book you told me about. I am really frustrated right now, because my doc is playing a wait and see game. She did some more blood tests...is checking my TSH, my amylase, lipase, liver enzymes, electrolyes, to see if it is anything else. What is the test that is better for the thyroid? I have a lot of the symptoms of thyroid disease, tachycardia, losing weight, night sweats, cold intolerance, but these can also be symptoms of fibromyalgia from what I am told. My doc says she does not want to jump on the bandwagon and wants to check everything before even starting on the fibromyalgia. I agree with that to a point, but I am in severe pain right now and would like some relief soon. Thanks again. Have a great weekend. Tina

 
Old 05-20-2006, 07:54 AM   #7
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tarnold HB User
Re: Newly diagnosed with fibromyalgia

Sorry I forgot to answer your questions elmhar. I am type II diabetic and I also have another autoimmune disorder, ulcerative colitis. I had to have an ileostomy surgery for the UC but they tell me my body still has the autoimmune disease part of UC and always will. My doc right now is thinking I have lupus, RH or another auto disorder instead of the fibromylagia. My fibro DX was done two weeks ago on a six day stay at the hospital, but when I went to my family doc, she seems to think it is not that and something else. So I guess we will see. Thanks again for the info, have a great day. Tina

 
Old 05-20-2006, 10:09 AM   #8
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elmhar HB Userelmhar HB User
Re: Newly diagnosed with fibromyalgia

Hi Tina,

The blood tests your doc ordered are reasonable screening/starting points. It's good to get the tests done for the autoimmune diseases. If they can pinpoint one or the other, you may have a shot at a more specific & effective medical treatment to help with your pain.

Most MDs in the USA were trained to worship TSH as the gold standard of thyroid function. But if you have autoimmune diseases & symptoms as you described, you will be better served by getting your thyroid autoantibodies tested (there are 3 different ones), and getting your free thyroid hormone levels (free T3 & free T4) checked. If your doc balks at doing this, you can order the tests yourself through Lab One/Health Check USA. Check your phone book.

You can get more info on thyroid tests & test result interpretation on the thyroid HealthBoard. The majority of docs & labs in the US are using "old" standards even to interpret TSH, thus many people who could be helped are not getting diagnosed.

Even if one has other autoimmune disease and/or fibromyalgia, optimizing thyroid function/suppressing thyroid antibodies, can have a positive effect on so many things. Thyroid hormone treatment is generally quite well tolerated.

Many autoimmune diseases follow a pattern of flares & remissions (or less ill times) -- don't give up!

 
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