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A MyFibroTeam Member asked a question 💭
Rensselaer, IN

I went to rhuemo md today and swear everything I mention aches and pains, he ignores and says "fibro". when I ask him what should I do or change to lessen the severity. He justs says "not much". Ugh! I am fustrasted and depressed cause of all of this. Has anyone else found themselves in this situation?

January 6, 2016
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Answer Summary

Members expressed deep frustration with rheumatologists who dismiss fibromyalgia symptoms with unhelpful responses, sharing that many have... Read more

Members expressed deep frustration with rheumatologists who dismiss fibromyalgia symptoms with unhelpful responses, sharing that many have cycled through multiple doctors before finding compassionate care that actually addresses their pain and quality of life. Several members recommended practical self-care strategies including Epsom salt baths, essential oil muscle rubs, supplements like magnesium and turmeric, prioritizing deep restorative sleep with 5-HTP or melatonin, and seeking pain management specialists who take medication needs seriously rather than dismissing them. A recurring theme was the critical importance of self-advocacy, researching conditions independently, considering alternative diagnoses like Lyme disease that mimic fibromyalgia, and remembering that patients have the right to fire doctors who don't listen and find new ones who will treat them with respect and genuine care.

A MyFibroTeam Member

I've pretty much given up on doctors here. They're pretty misinformed and to put it bluntly useless. When I was having a heart attack the doctor on call was diagnosing it as stress and was going to send me home. That would have had me driving myself home 30 minutes away. I had already driven myself there praying with every breath that I'd make it. It was a nurse doing blood tests that spoke up and told the good doctor I indeed had a heart attack. It was later discovered I had SCAD Spontaneous Cardiac Artery Dissection. We're it not for a nurse who knew her job I wouldn't be here to tell the story. So if you've got a good doctor hang on to him/her for dear life. God bless. Happy hunting.

January 22, 2016 (edited)
A MyFibroTeam Member

Lambtender...sounds like we need to depend on the NURSES who know what they are doing ! : . I was an RN and have a few similar stories where I had to go against the "doctors are in charge and know best" hierarchy, working in the ER, for the benefit of the patient.
On another note... I'm trying to spread the word about the possibility that you may have Lyme disease. I was misdiagnosed with fibromyalgia for 20 years when I actually have Lyme disease. I had the classic rash in 1995, in which Lyme disease was never brought up because I'm in AZ. But Lyme is in all states and only about half have the rash or remember a tick bite.
But that is when my fibromyalgia symptoms began, slowly getting worse. The symptoms for fibromyalgia and late stage Lyme are almost identical. So I'm encouraging anyone with fibro to get tested for Lyme. My tests were positive in Oct 2015 and I had to find a Lyme Literate doctor (LLMD) to begin treatment.
If you decide to get tested, only use iGeneX labs in Palo Alto, Calif. They are the most accurate lab. You don't need the ELISA test, it is notoriously inaccurate, you need the "Basic Lyme Panel" which is the Western Blot IgG and IgM, and the IFA, and costs $275. You can Google the lab and call and request the kit (blood tubes) and pay a local lab to draw your blood and spin one of the tubes for 15 min (my local lab charged only $32 for this service) you do need a doctor to sign their order sheet, then mail it back to iGeneX (follow their instructions on when to mail).
Seriously, I think there is a subset of folks diagnosed with fibromyalgia who actually have Lyme infection. Lyme is called the "great imatator" as it mimics FM, MS, ALS, Parkinson's, etc. Do some research about Lyme online or feel free to contact me if you have questions.
Trisha

January 22, 2016
A MyFibroTeam Member

I have been there so so many time's going from one dr to another and even braking down in tears while i tell them how my life is, i have even told them i would like them to have a day in my shoes to really no what i am going through, then i asked to see another dr and woww i found one that new what she was doing and understand my life, she has been my rock since then i see her every 3 months and no time limit to my visit's she has done so much for me over the past 7 years, i would advise you to see another dr it is your right, i wish you good luck xxx

January 22, 2016
A MyFibroTeam Member

I have a doc good on fibro,pain clinic and a very lovely local fibro support groupxxx

January 22, 2016
A MyFibroTeam Member

He obviously doesnt know much about fm and rather than embarras himself give you a throwaway comment. Sorry for the term but shop around till you find proffessionals that work for you. Im just about there. Good luck. Sympathetic hugs for youxx

January 22, 2016

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