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minnesotagirl's Post
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minnesotagirl
Updated 1y ago
Need help getting diagnosed with fibromyalgia or chronic fatigue syndrome
So I've not actually been diagnosed with fibromyagia or chronic fatigue syndrome but when looking into both conditions I have all the symptoms. does anyone know who I need to see to a tally be diagnosed therefore opening options for treatments
I've been told by too many Dr's that they don't know what to do to help me anymore. I feel like I have to live my life day by day. So I want to know who I have to ask for a referral to Soni can have progress on my journey to a somewhat normal life.
I've been sent to a sleep specialist, neurologist, counselor, psychiatrist amd primary. I evhad my levels run too many times to even keep track of.
Can you help? Connect today
picklepuddles
2y
I've been seeing rheumatologists and getting tested for autoimmune stuff since I was in highschool. I'm now 35, and I finally had a rheumatologist officially diagnose me this past December. It basically can't be diagnosed, by what he told me, until everything else is ruled out. However, I really think I could have gotten this diagnosis years ago lol. I see it said that you should continue to see your rheumatologist, but this one told me there wasn't much else he could do for me. So I feel you.
beingnotseeming
2y
rheumatology might be your best bet at this point then. the doctors that deal with fibro and cfs vary but rheumatologist or often where people are referred to. my primary initially diagnosed my fibro but my rheumatologist is the one actively treating it at this point because my primary retired. unfortunately you really just have to get lucky with finding the right doctor to work with you.
minnesotagirl
2y
Thank you guys. My next appointment with my Dr I will request that then
Zebrapotato37659
2y
Rheumatologist. Prayers!
Kuro
2y
I was diagnosed by my primary care doctor, but I underwent a LOT of testing and seeing specialists first. If your doctor doesn't know how to help I recommend switching doctors if you can. I went through a lot of doctors before finding someone who knew what was wrong with me and was willing to help especially since I am so young and a lot of them brushed off my symptoms.
minnesotagirl
2y
when I asked a couple different primaries about fibromyalgia or chronic fatigue syndrome they said they didn't know much about those and then sent me back to my neurologist
frausto86
2y
Same here many test ran and re-ran. I seen at least 5-6 primary Drs having them bounce me back in forth because they didnt know what to do till one sent me to a nuerologist who had diagnosed me but didnt explain nothing to me other then here is a medicine try this. No follow ups or anykind of direction was given. That was 7 years ago. Unfortunately you have to be your own advocate. Now my new primary is helping me.
nosyhobbit
2y
Like others, I saw many doctors and I baffled them to be honest. I eventually found a neurologist at UCLA who was apparently very good, and I waited months to see them. They had me fill out a big packet with all my medical history, where the pain is, etc. And she diagnosed me on the spot. I think docs need to see that you've ruled out everything else. Neurologists have been the most knowledgeable in my experience, so I recommend seeing one if you haven't yet!
minnesotagirl
2y
I have daily chronic migraines. I've seen multiple neurologist for nearly 4 years now. I'm currently seeing one that I love as she listens to me and doesn't just shove meds at me
WhistleStopper
2y
I had severL test and retest and even had a bone marrow biopsy as I ha e several issues that feed off each other. I was finally sent to MU to see an infectious disease doctor. I am now being treated by the rheumatologist, orthopedic doctor, chiropractor, dermatologist, and a primary doctor or his nurse practitioner. I would start at rheumatology if I were you. I tried that forest but I didn't have all the normal pressure points, however the infectious disease doctor called it focused fibro, it has gotten worse over the years.
BrieMarie
2y
I've had the most luck with a rheumatologist. I tried internal medicine and she was terrible. I hope you get some answers soon
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