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The whole process is frustrating and exhausting in so many ways. Financially, emotionally, etc.
Keep finding hope in the little moments of clarity, keep advocating for yourself (hardest thing to do after years of hitting walls) and if possible learn as much as you can.
Why insurance gets to dictate to drs how to treat patients is awful.
One thing that is interesting, I had an EMG due to continued pain and L shoulder, neck and rotator cuff not healing properly after 5 years and it showed Myotonic discharges which indicates and I know now after genetic testing that I have a muscle disorder that often mimics Fibromyalgia. The Dr wasn't 100% sure how it effects my myriad of problems but he did say that as Neuromuscular Dr he would like to see every Fibromyalgia patient have genetic testing because it explains why typical protocols for treating Fibromyalgia doesn't work for those with this genetic condition.
Truly hope you get or find something that works.
Replies to "The whole process is frustrating and exhausting in so many ways. Financially, emotionally, etc. Keep finding..."
@lisakaypowers Can I ask what genetic muscle disorder this is? Does it have a name? I was diagnosed with fibro 40+ years ago. Thanks!
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@lisakaypowers
The way insurance companies dictate treatment is disgusting. My breast specialist had to fight Aetna last year to get them to agree to cover an MRI. She fought for over a month, before finally getting them to say yes. Now it's getting worse because AI is making the decisions without a medical person even looking at things. I had an EMG done at Mayo Jacksonville, as part of seeing if I had carpal tunnel. I cried the entire time, cause it hurt so much. I told the techs doing the test "Look you guys are the best hospital on the planet. You can't tell me your researchers can't come up with anything better than this barbaric test."
I started Lyrica this past Wednesday so it's too early to know if it helps. I also have to go to my primary care doctor every month for a high dose injection of B12. And im on once a week of vitamin D