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Hi,
My experience (having been diagnosed almost 20 yrs ago) is yes, there are definitely better days VS more severe days. The crashes of pain and exhaustion are very real.
For me, however, I didn't respond well to the 'typical' recommendations, and after years of getting worse, I have recently been diagnosed with ME/CFS which may be the reason I had such ups and downs and didn't respond well to what dr's recommended. I did not start on medication for the first 6 years, then the med's I had tried had side effects that were just as bad as the disease.
I have found some relief in gluten-free and a basic AIP diet. Definitely not a cure but any little help is a God Send.
Also, recently I started on LDN, on my 5th week and I am noticing a difference to the point where I am asking why NONE of my doctors over ALL the years ever spoke about this. I came upon it on this forum and after looking into it, was able to start it. It may not be a cure, my pain still fluctuates but I am noticing a significant amount more energy, less pain during the day and a bit of hope.
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@lisakaypowers
I have been undergoing MRI's, DaT scan, 4 days hooked up to an EEG monitor and electrodes literally glued to my head. I've had issues with memory, brain fog, cognition, and full body tremors while sleeping. My former therapist became concerned because I was telling her stories without realizing I had already told her. So when I saw my primary care doctor in November, she allowed my therapist to be in the appointment via phone. One of the things she said to my primary was "Can all of her doctors, you, the Cardiologist, both of her Orthopedists (I see one for my knees and one for my shoulder) and her breast specialist sit down and have either an in person conference or do one by zoom, so that all of you can try to figure out what's going on?" My primary care doctor said "We used to do "rounds" with patients for that reason. Now we don't have the time because of insurance companies won't let us take up that much time for a meeting." And that sent me down a rabbit hole of tests trying to find a Neurological Answer.