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Old 03-18-2010, 11:03 PM   #1
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Unhappy Questions About Fibro Diagnosis

My name is Jenn. I am 24 years old. I was diagnosed with Fibro about 5 or 6 years ago. I'm just not convinced that this is the correct diagnosis because it's getting progressively worse and I've always read that Fibro is not progressive. I do have flare-ups too, though. I take a cocktail of meds that do help, but not enough. I just started at a pain clinic at my local hospital, but I am awaiting test results before I get more treatment.

I take Ryzolt, Celebrex, Wellbutrin, and I just started on Neurontin, which brings to the question of, "Has Neurontin helped anyone else on here?" I only just started it, so I'm slowly upping my dose per my doctor's instructions.

Finally, I am adopted. I was adopted by my paternal grandparents. I have not medical history on my biological mother's side. My biological father just got diagnosed with Rheumatoid Arthritis, and some other people on that side of the family have it too. Could this also be RA?

I'm sorry for such a long post. My mother and fiancee are very supportive and my dad's getting better, but nobody really understands because they are not going through it. I just need someone to talk to who understands, and hopefully, this will be a good place for that.
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Old 03-19-2010, 04:16 AM   #2
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Re: Questions About Fibro Diagnosis

Well I'm in my early 20s as well, and I was diagnosed like 2 years ago. Yea I read that too, but it seems nowadays it's really tough to survive a day without taking any pain killers. I'm more exhausted than ever and I speak a lot more slowly. Almost feels like my brain is shrinking. I don't have any family history of fibromyalgia or RA, so that kind of confuses me.. makes me wonder whether I actually have FM, but yea all the signs are there so I guess it's the right diagnosis. Hard to say what triggered this tough..

I send you a smile

 
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Old 03-19-2010, 04:25 PM   #3
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Re: Questions About Fibro Diagnosis

WOW! You girls seem so young to be going through this. Although when I think back I probably had it at your age as well. I am so sorry you have to live with this. I do not take Neurontin so I can't answer your question but I am sure there are people on here who can. I just wanted to welcome you and wish you luck.

 
Old 03-20-2010, 03:54 AM   #4
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Re: Questions About Fibro Diagnosis

Is it possible the Fibro diagnosis is just as incorrect as mine was? After investigating my elevated calcium level (anywhere in the ten range), low Vit D level, & high PTH level I found out my "Fibro" was a parathyroid tumor.

 
Old 03-22-2010, 10:24 AM   #5
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Re: Questions About Fibro Diagnosis

firebird, good for you to get the thyroid diagnosis and get help.

Thyroid problems are often misdiagnosed as fibromyalgia. That is why it is important to educate yourself about thyroid disorders and especially hypothyroid and then get a simple thyroid bloodtest. Then...and this is the IMPORTANT PART....get a copy of your bloodtest. Yes, get a copy and look at what the numbers are for yourself. Many docs will just look and see if everything is "within range" ( it gags me to even say that phrase) and tell you your thyroid is fine. However, your thyroid may not be fine for you. I now see an endocrinologist that wants to keep my TSH under 2.0 when the normal range is 0.4 to 5.0. The difference from 2.0 to 5.0 for me is total lack of energy, brain fog you wouldn't believe and yes even increased pain. Although I do have fibro, getting my thyroid in the right range for me helps my fibro tremendously. Just to be clear, TSH is not the only numbers to worry about, I also need my T3 in a proper range for me. Again that is having a doc that will work with you and again it plays a big role in helping me to keep my fibro under control with a minimum of medication. This has all taken a lot of time and work, but it is worth it. Just to give you a simple example, originally when I was diagnosed with fibro by my PCP at that time, I ask him to check my thyroid. He did and told me it was fine, I had not been educated by others at that time to ask for a copy of the blood work. As I continued to feel bad and a friend clued me in on some books to read about thyroid and I educated myself, I ask my doc for a copy of my blood work. My TSH was 4.9.....YES is was "within range" (gag), but the top of the range was 5.0. To finish the story I went to and ENT and did get some help but still had to find a better ENT who would listen and treat me according to my body not the 'standard' treatment. The thyroid board on the healthboards has a lot of good info and the people there are very helpful with reading your numbers.

I know this is a long post, but I am passionate about the thyroid issue. I did want to comment on the statement that we have all read or heard. Fibromyalgia is not progressive. That is BUNK pure and simple. Fibro is progressive and I think you could survey everyone with fibro and you would get 99.9% who would tell you their fibro has been progressive. The trick to it is learning what other health issues may be causing some of your problems and to find what meds and what exercise and what foods help you and which ones hurt you and keep a positive attitude.

Hang in there everyone!
Glojer

 
Old 03-22-2010, 11:16 AM   #6
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Re: Questions About Fibro Diagnosis

I wish there was a simple answer to the question "what causes fibromyalgia". Should we like figure it out by ourselves and be smart enough to guide our doctors to discover the cause?

 
Old 03-23-2010, 12:43 AM   #7
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Re: Questions About Fibro Diagnosis

Thanks for all your replies. I have had my thyroid tested before, but I haven't seen any recent blood work. I'm not even sure how to go about getting copies. I'm sorry for the brief reply, but it's been a bad few days. At 9:40a, I have to go have an outpatient surgery to check for endometriosis. I'm so nervous. I'm nervous that they will find something bad that will affect my fertility. I'm nervous that they won't find anything, and I will be stuck feeling nauseous, having pelvic and low back pain, and many unpleasant digestive symptoms. The fibro is enough to deal with. Sorry to be down, just a bad day. I have this pounding headache because my back is out of whack. I need to go to the chiropractor. Thanks again for all your informative replies. I'll let you know what happens with the surgery.
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Old 03-23-2010, 01:56 PM   #8
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Re: Questions About Fibro Diagnosis

IrishChica, Please reread Firebird's post. It was not a THYROID problem but a PARATHYROID problem. I'm afraid Glojer may have read the post wrong. The parathyroids are four little glands USUALLY located posterior to (at the back of) the thyroid gland. They are responsible for calcium regulation and you have them checked by testing calcium concurrently with PTH (parathyroid hormone). A problem with the parathyroid which is caused by an adenoma will cause high calcium, high or abnormally normal PTH and low Vitamin D. Parathyroid adenomas will also cause joint aches/pain and bone pain. So sorry, I didn't want this to be long and drawn out but wished to point out that thyroid testing is not the same thing.

Last edited by hopalong_too; 03-23-2010 at 01:57 PM.

 
Old 03-24-2010, 09:08 PM   #9
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Re: Questions About Fibro Diagnosis

hopalong, thanks for the info. I did know they were not the same, but was not sure of all the facts about the parathyroid. Anytime anything is mentioned with the word thyroid in it I do get on my soapbox....giggle! I think it is so important for we fibro sufferers to have all other health issues treated optimally. Thanks again.

Glojer

 
Old 04-26-2011, 12:20 AM   #10
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Re: Questions About Fibro Diagnosis

Hey all, I'm new here, but this post is so me I felt compelled to respond. I absolutely agree that it's progressive. I was diagnosed with fibro a year ago, at 30yrs old. Although I'd been trying to figure out what was wrong with me for about 5 years. My family, friends, and step kids all tease me about the fibro fog these days, becuase I feel so much slower than I used to be. I don't think as quickly, I forget things, and when I speak, I don't always make sense. I think that's been the hardest on me. The pain doesn't even bother me as much as that part. Although the pain is horrendous some days. I went from being a perfectly 'healthy' young woman, to being diagnosed with a lot all at once. Hypo-thyroid, CFS, fibro, and PCOS. all in a years time. Blah. Also in the last few months my insomnia has gotten worse. (although I didn't think that was possible) and I have had a constant numb ache in my left leg, right above the knee, on the outer portion of the leg. As for meds, I take sooooooooooo many. I've tried weining myself off of some of them, but I end up feeling worse. I take pills to counter act side effects of other pills. How is this normal? I have taken Neurotin though, and had terrible results with it personally, horrific nightmares, and constant dry mouth. However that could have been as a result of other meds or just me. Every pill affects every person differently. Okay enough rambling from me tonight.

 
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