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Cat_Lady

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Does anyone have any suggestions on how to get a diagnosis from a doctor? The reason I ask is because I've seen two rheumatologists. Neither one gave me a diagnosis, even though it is pretty obvious to anyone who observes me that I DO have fibromyalgia.

I've read that many doctors are very reluctant to give a fibromyalgia diagnosis. So I'm trying to figure out what tests I can take that will actually PROVE it. On another fibro blog I was reading, a woman said she took a sleep apnea test. It proved that her brain waves at night were more active than during the day. This is one of the symptoms of fibro. What else can be done?

I've also heard that it can take years to get a diagnosis. I'm not sure why this is. But for someone like me, who knows for sure that I have fibro - I don't see why it should take years to get a diagnosis.

I know there are still many people in the medical community who don't even recognize fibromyalgia as a valid disorder. This blows my mind. If only they could walk in my shoes, for one day.

I wish there was a way to draw more attention to this disorder, even on the national level. It shouldn't be this hard to get a diagnosis, nor should it be hard to get accepted for disability. Sorry, just had to vent some frustration.

I have another doctor's appointment coming up. I'm not sure what to tell her, except to give her a list of all of my symptoms, as well as the cause of my fibro. This is what I have already done, in the past with other doctors.

Is there anything else I should tell her?
 

1sweed

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Feb 4, 2013
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1,956
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DX FIBRO
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01/1995
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PA
I would suggest that with this new doctor that you stick with the symptoms that bother you the most and not hand out your total list of complaints. Also never tell a doctor what you think you have, as many doctors don't like the patient to tell them the diagnosis, thus they won't believe you or they think your just looking for drugs.
It took me a longtime because back then more doctor's did not believe in Fibro. But also you need to know that lots of other illnesses start with these same symptoms. So sometimes it is necessary to wait it out for that diagnosis, instead of jumping the gun and getting a wrong diagnosis. Another reason doctor's might shy away from a Fibro diagnosis is because there is no cure and having put a name to such an illness often causes more hardship in a person's life then not knowing. You go from family thinking your lazy to family and friend's thinking it's all in your head and you just have to get over it. Many people who don't have it have no idea how painful it is or someone has it in the form of a mild case and thinks everyone is the same and can not understand why you have trouble working.
I am not sure if this makes sense to you other than do not self diagnosis. If you have Fibro, you will get the diagnosis. But telling the medical field what you think you have will only drag things out for a longer period of time and serve no good purpose. Good Luck with your new doctor. :)
 

SierraTrout

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Jun 28, 2016
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39
Reason
DX FIBRO
Diagnosis
06/2016
Country
US
State
CA
I'm so sorry it's taking you so long to get a diagnosis. It can be an agonizing process as our suffering is real and relentless, but I also understand why our doctors have to rule out other diseases because, as 1sweed mentioned, there are many other illnesses which mimic our symptoms. I don't know of any definitive test for FM and all the doctors I've seen have said it is a diagnosis that's made only after all other reasonable conditions are ruled out. I think that's why it takes a long time for some of us to get a fibro diagnosis. Looking back, I’m kind of glad the doctors did all the testing they did as now I don’t fret (as much) about having an undetected fatal disease. It took a year for me to get a fibro diagnosis. By the time the diagnosis was made by a rheumatologist, both my regular doctor and I were pretty sure it was fibro but wanted to get a rheumatologist's opinion just in case we were missing a possible autoimmune condition.

During that long, long year my doctor tried a variety of ways to diagnose and/or treat the symptoms. She initially thought that hypothyroidism was causing the fatigue and achy joints but the thyroxine did not improve my symptoms. Then, suspecting fibro, she tested me for tender points and found only two so she dismissed that and thought it might be chronic fatigue syndrome. Over the next few months my pain and stiffness worsened so I was sent for x-rays of the hips as that’s where my pain was the worst at the time, and then to physical therapy. The PT did help my hip pain a little, but by the end of this treatment I was still feeling really lousy, tired and hurting all over, the "I've been hit by a truck" feeling. I also had a two-hour episode of double-vision so was sent for an MRI of the brain to rule out a brain tumor and MS; then sent to a neurologist who said the scan was normal.

At this point I had done a lot of internet research on various conditions and fibro seemed the best fit, so at my next doctor's visit I gently asked if we could re-visit a fibro diagnosis. She agreed, so her final step was to test my blood to rule out autoimmune disease. The tests came back negative for everything except for ANA which was mildly elevated, but she said that was enough to get me in to see a rheumatologist. Twenty percent of normal healthy people test positive for an elevated ANA; and this test is the number one reason why patients are referred to a rheumatologist. On the referral form my doctor wrote as the reason for the referral: “Anti-nuclear factor positive; chronic myalgias, joint pain and fatigue. Possible fibromyalgia vs. polymyalgia; rheumatic vs. connective tissue disease.” It took six long weeks to get in to see one. He went over all my previous testing; asked about my current complaints/concerns (which I kept to the bare minimum for simplicity and because I didn’t want him to order a barrage of other tests to chase down every last symptom); and did a thorough exam where he manipulated joints from my fingers to my toes and pressed on many spots throughout my body. He also tested the range of motion in most of my joints. He spent over an hour with me and in the end diagnosed fibromyalgia. He based the diagnosis on my current complaints; the negative testing I had completed; and the presence of most of the 18 classic tender points (the tender points aren’t necessary for a diagnosis).

Cat Lady, did your PCP run a lot of tests which came back negative? Did the rheumatologists provide any explanation for your symptoms? I’m curious as to why no one has diagnosed you with FM yet. I guess I’m lucky in that none of the doctors I’ve seen have had a bias against FM; they all acknowledge it’s a valid condition.

If you were to tell your new doctor your top four symptoms, what would you say?

Hang in there. I hope you get the answers you need soon.
 
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