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What is wrong and how do I find a Dr to diagnose it?
My daughter is 19. She has so many issues with her body and nobody will diagnose/help. She shows signs of fibromyalgia, ehlers-danlos syndrome, or some other auto-immune disease. She hurts all the time. She’s always tired, has stomach issues, doesn’t sleep well and on and on and on….adult rheumatologists won’t see her, pediatric rheumatologists won’t see her, her regular dr is at a loss, she’s done PT, seen a physistrist—all to no avail. She’s becoming mentally exhausted and depressed as a result of the continuous issues and lack of help. Any suggestions?
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herder42, I would take her to an Integrative Medicine doctor (out of pocket0 and get his/her take on this. He/she can diagnose if it's fibromyalgia or ehlers-danlos syndrome. A lot of times, Fibromyalgia gets missed to be honest.
Is there another primary pediatric doctor she could see for a 2nd opinion?
Praying for answers and peace for you & her.
Hello @herder42, I would like to add my welcome to Connect along with @covidstinks2023 and others. I know it must be awful for both you and your daughter not being able to find a diagnosis and treatment that provides relief for her symptoms. There is a TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis that might be helpful.
-- What happens when you have a disease doctors can’t diagnose: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
There are also quite a few other discussions on the ME/CFS condition if it sounds similar to the symptoms your daughter is experiencing - https://connect.mayoclinic.org/search/discussions/?search=ME/CFS.
It sounds like she has seen a lot of specialists without much help. Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic?
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1 ReactionHave they considered Polymyalgia Rheumatica? I had many physical symptoms and was misdiagnosed to finally find a doctor that correctly diagnosed me as having Pmr. The treatment is steroids and it makes a huge improvement in life with pmr.
Blood tests should show high protein and sed rates which is indicative of inflammation in the body.
What??
No rheumatologist will see her??
Have her see an Endocrinologist.
I would not get off the phone until I found out.
A CBC should give you a hint about something.
Look at the group Long COVID on this site as well as other sites on the internet. She may have long COVID. It presents with a multitude of symptoms of many other autoimmune diseases. Chronic fatigue is probably the most reported but there are many others.