Suspect FIBRO? Visit a rheumatologist

Fibromale

Member
Joined
May 4, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
TX
New member here. I’m reposting under this topic because I think it’s more appropriate.

I’ve had Fibromyalgia for over seven years but was finally diagnosed in January of this year. It was caused by extreme job related physiological stress. My life literally changed overnight in 2014. I went to my doctor and explained what happened and told him I had widespread pain, fatigue, headache, and cognitive problems. I left his office with a prescription for the headache only.

I visited the same doctor over the next seven years with the same complaints and was treated for various symptoms but no diagnosis. During that time I referred myself to two neurologists and an endocrinologist hoping to get an answer for my numerous issues. Again, no diagnosis. Finally, earlier this year I referred myself to a rheumatologist and received the official diagnosis.

My point to all this is if you think you may have fibromyalgia, you must take the initiative and be responsible for your own health. Visit a rheumatologist sooner rather than later. Unfortunately, many doctors are unfamiliar with the syndrome and are not able to “put it all together” and make the diagnosis.

My symptoms really haven’t improved much since receiving the diagnosis but I would have saved myself many years of frustration and confusion. I’m hoping by writing this, I can help at least one person not make the same mistake I made. Thanks for reading and I look forward to receiving helpful tips from this forum.
 

JayCS

Very helpful member
Joined
Sep 5, 2020
Messages
625
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi "also-fibromale" ;-), then I'll reply under this "more appropriate" heading... :):
I agree in as far as if you are not satisfied and have the insurance / money to change docs, go to (further) specialists and get 2nd or even 3rd opinions. After 45 docs in a year & 30 diagnoses, & loads more thankfully rejected, I am now satisfied. But my 1st rheum. did not see "me" as a fibromite, the 2nd one 3 months later did, but she only prescribed a pain killer I didn't tolerate, so the magic formula is not the rheum., but taking the initiative and perseverance.
All docs helped a tiny bit checking diagnoses & support, but none with their treatment ideas, which mostly harmed me considerably (meds & more). The fairly good & lasting treatment ideas came from myself & friends & forums....
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,466
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi "also-fibromale" ;-), then I'll reply under this "more appropriate" heading... :):
I agree in as far as if you are not satisfied and have the insurance / money to change docs, go to (further) specialists and get 2nd or even 3rd opinions. After 45 docs in a year & 30 diagnoses, & loads more thankfully rejected, I am now satisfied. But my 1st rheum. did not see "me" as a fibromite, the 2nd one 3 months later did, but she only prescribed a pain killer I didn't tolerate, so the magic formula is not the rheum., but taking the initiative and perseverance.
All docs helped a tiny bit checking diagnoses & support, but none with their treatment ideas, which mostly harmed me considerably (meds & more). The fairly good & lasting treatment ideas came from myself & friends & forums....
So true.
Unfortunately, rheumatologists are no less likely than any other doctor to dismiss, misdiagnose, or fail to believe fibro patients.

It's a good idea to go to one early in the process, but the one I went to was zero help and it was a bad experience for me. The bottom line, as JayCS says, is to take responsibility for yourself and do your own research and experimentation while seeking a doctor of whatever kind who understands and treats fibro.
I have found that most of the time you can find out if a doctor will listen to you if you call the receptionist in the doctor's office and ask if they have fibromyalgia patients. If they do, that's a good sign, and if not don't go there. You may or may not like a certain doctor even if they treat fibro patients, but at least you can be more likely to start out with someone who won't just tell you it's all in your head.
 

Fibromale

Member
Joined
May 4, 2021
Messages
13
Reason
DX FIBRO
Diagnosis
01/2021
Country
US
State
TX
Thank you both for your reply. I was lucky to be seen by a rheumatologist who not only believed in FM but was also very familiar with it as well. He made it clear he was handing me over to my GP for future treatment after the diagnosis. I suppose we’re considered to be difficult patients who are always searching for treatment options and he would rather not be bothered with it.

I’m going to continue with light exercise, stress reduction(easier said than done), and information on this forum to try to improve my quality of life. I’ve tried many medications without much success but I’ll always be open to trying new ones after researching them thoroughly before I start.
 
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