Doctors think I have fibromyalgia

Posted by bfaicco9 @bfaicco9, Feb 8, 2020

I’ve been having pain in my thighs and arms/wrist for over a year-the pain is either burning or stabbing. I also have weakness in my hands. I went to the doctor when I started not feeling so great she ran bloodwork and told me I had Lyme disease, I was on doxy for 30 days, after I was still not feeling good and having all these weird things going on -tiredness, not sleeping, nauseous all the time, getting a cold and chest infection every month, irregular menstrual cycle, bad back pain and the pain in my arms and legs gradually started getting worst. I was told to see an infectious disease doctor-he told me I never had Lyme disease due to the fact that the first part of a two part blood test was negative and the second test which came back positive never should have been done. He told me to see a rheumatologist. The rheumatologist did bloodwork for autoimmune disorders which all came back negative. She thought I had nerve pain and put me on gabapentin, I didn’t feel any better. I then saw a neurologist who first diagnosed me with vestibular migraines because I had also been dealing with serve dizziness, fainting spells and migraines since I’ve been a kid. She had me do an eng test to see if I had a muscle disorder and did bloodwork for ck levels and lupus both came back normal/negative. The eng came back abnormal, she made me do it again and it was still abnormal. She told me to see muscle doctor, he said he was 95% sure I didn’t have a muscle disorder and sent me back to the neurologist. During this time I had been on four different antidepressants to help with pain but they all were giving me bad side effects. The neurologist then says maybe you have fibromyalgia but its not something you can do a blood test for. Recently I saw the gynecologist, she thought I had Pcos did bloodwork instead my dhea sulfate was very low as well as my testosterone. I asked if that was bad and she said she didn’t know. She told me to see an endercronologiet which I’m still waiting to see. I just saw my primary care doctor and she said maybe something is off with my adrenals glands and gave me a script for a 24 hr cortisol urine test-which I’m still waiting for the results and I just got a call from her that my thyroid is very high. Maybe none of this is related or maybe it is but I feel like I’m going crazy. Does anyone have any advice or similar experiences?

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@bfaicco9 Welcome to connect we are a caring supportive group I'm so sorry you are going through all these symptoms. I've had fibromyalgia since the 90,s I was never nausested If your near by
a Mayo clinic I would suggest going there they are good at diagnosing. If not a big University hospital is a good suggestion.I hope you get some relief from someone Please keep us posted. Others will chime in here who may have some idea.Wishing you well
I,LL be praying for you


My experiences have similarities to yours.

I self referred to Mayo and ask the Internist to put me through a find tooth comb, find out everything that was wrong with me and teach me how to improve my quality of life.

After numerous tests and seeing many specialists at Mayo, I finally was diagnosed with Central Sensitization with Fibromyalgia and attended the three week Pain and Rehabilitation Program at Mayo.

I had to tenaciously self advocate for almost 3 decades to get the help I needed.

Have a great day!

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