So I have CM1 and was recently diagnosed with fibromyalgia, I have had lower body pain (however it isn't constant) so sever I often wake during the night and during the day I can't even move, it is truly crippling, there is no comfortable position and it feels like a ripping and burning pain, like someone is shredding my joints and muscles in my lower back, hips thighs, knees, calf muscles, ankles, feet and even my toes, I will joke that it feels like my big toe may shoot across the room. Ive had this pain since at least 2 years old but they always told us it was just growing pain (this was before I was diagnosed with CM1). I feel like my rheumatologist and I are on totally different pages none of the treatment options he has tired have done anything at all to relieve my pain and I am still crippled by it. I am just so fed up and frustrated that he is so stuck on fibromyalgia, with out any testing or anything, I just want to explore all options so we can find a treatment that works for me. I am so fed up with trying new medications that my insurance won't cover and having them not work. I'm sick of side affects and sleepless nights, I just want to know whats wrong.
on a similar note,
I have a almost hiccup like berating 'spasm' for lack of a better name, I feel like I'm never getting enough air in and am constantly gasping for air and like pushing out exhales much stronger then necessary, I have been to multiple pulmonary specialists and ENT along with my PC. And yet no one has any idea, does any one else have this problem? I had this problem prior to my decompression but after it only seemed to get worse and it continues to worsen, I am a little worried about it, yet no one else seems to be… Please help.