Don't know what to do

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jac355

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Joined
Oct 19, 2014
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1
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Other
Diagnosis
00/0000
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US
State
Oregon
First- have not been diagnosed, and will try not to make this long and boring. Started having problems right after turning 37. Am 59 now. Many years of silent suffering. Widespread aching. Feels like flu. Pain everywhere and anywhere. Many other problems. Have seen 3 doctors over the years. Best I can say is it was humiliating and degrading. First one told me to see a psychiatrist. Second one told me to stop wasting his time. Current doctor seems interested and concerned, but I don't know how to explain what or how I feel and how it affects every aspect of life.

I never really considered fibro until the past year or so. It isn't that I feel any worse or better now but it has just reached the point where I NEED to know what this is or if I have in fact, gone around the bend. I HAVE to know.

I honestly don't know what else to write here. The mental haze is really bad right now and it is hard to focus on anything except feeling horrible.

I guess what I am looking for is direction. Guidance. Suggestions. Anything that will help me get through to the doctor and hopefully find answers. Many thanks in advance for anything you can offer.
 

daisysmom13

New member
Joined
Oct 18, 2014
Messages
5
Reason
DX FIBRO
Diagnosis
06/2013
Country
US
State
Missouri
Hello. I'm so sorry about what you're going through. I didn't get diagnosed until I saw a Rheumatologist. You might see if you can get an appointment with one. My allergist is the one who referred me to a rheumatologist.
 

momfirst2012

Member
Joined
Oct 11, 2014
Messages
12
Reason
DX FIBRO
Diagnosis
10/2014
Country
CA
State
ON
So sorry to hear you have been suffering so long and have had to deal with such ignorant doctors! My heart goes out to you! I was diagnosed just recently and what I did was write down every single symptom I had (look at a fibro symptom site to help you reference, it helps), all of them could be related to fibro, and gave the paper to my doctor. He had put me through many blood tests as well as other tests such as CT scan which included the bowels, barium xray upper GI series and ultrasounds of everything! When everything was coming back completely normal and he read the list of symptoms I gave him he agreed that I indeed do have fibro and then also did the trigger point test on me where they say you need 11 out of 18 to confirm it, I had 14 out of the 18. So make yourself a list and stress to your dr that feeling this way isn't normal. Demand they do any tests they want to rule out any other diseases or conditions that could cause these symptoms, whisch is really what they need to do to prove if it is fibro or not. I wish you lots of luck and hope you get the answers you need! Take care and stay strong, you are not alone! :)
 

Lana

Senior member
Joined
Apr 6, 2014
Messages
223
Reason
DX FIBRO
Diagnosis
05/2012
Country
CA
State
ON
The only one who diagnosed me was my Rheumatologist, see if your Doc will refer you to one.
 

tombraun

Member
Joined
Sep 29, 2014
Messages
15
Reason
DX FIBRO
Diagnosis
01/2012
Country
US
State
FL
That sure sounds like either fibro or CFS. Agree that you should see a good rheumatologist. They can do the trigger point test on you. They may also do some other tests to rule out other things.

That's the hard part about fibro - it is basically diagnosed by ruling out other things. It often takes a long time between someone feeling symptoms and a medical professional correctly diagnosing them. But hang in there.
 

PythonPlay3

Active member
Joined
Sep 16, 2014
Messages
59
Reason
DX FIBRO
Diagnosis
06/2005
Country
CA
State
AB
Hello- yes sorry to hear that you have been suffering for so long and that you have sadly found doctors that are not up to date with medical information. I had a couple of those along the way. It wasn't until I was in hospital with severe pain that not even morphine relieved that I finally got an answer. And sadly yes, that they have to pretty much rule out other illnesses and when they are all normal - your a pretty much left with Fibro. Now one of the test's they did on me was a sleep study. I guess there is a very common type of insomnia that runs in Fibro people. It is Alpha Interrupted Insomnia. They don't know if that starts and causes Fibro OR if it is a symptom of it. That was the one tangible thing that they could put their fingers on. It was especially hard with me because I had already had a history of severe depression and severe arthritis. I kept telling them this was different that is was not my depression. My regular doctor kept telling me it was my depression "just getting worse over time". I had never had the symptom I was having before. So he never took me seriously till I woke one day and couldn't walk or support my own weight I was in so much pain. So don't let them make you feel like your are a nut case because you are NOT. I got really lucky I met a specialist that works only with Depression/Fibro patients. She had really been great.
 
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