August 2, 2015 at 9:22 pm #879gwynfshaeParticipant
I’ve finally sought help for my chronic pain, after learning about EDS and ticking so many of the boxes I feel a lot more validated. I’ve always been terrified of being labelled as having a conversion disorder, since I’ve been accused of “overreacting” and “faking it” when I’m in pain. So I should be getting a call from whoever my GP has decided is the proper rheumatologist for me. (Not a geneticist? She insisted. No idea why.)
Ehh. Back on topic:
I feel everything. Like, literally every part of my body all the time. My kidneys, my lungs, my GI tract… When I drink cold water it feels like there’s a waterfall going from my mouth through my heart to my stomach. If I’ve been drinking, I can feel my liver and kidneys filtering. I am hyperaware of my skin at all times, and numbing agents do not work on me (they cause me pain). My teeth hurt.
Certain actions that ought to be pleasurable or at least not-painful, like tickling, are excruciating- especially because my ribs always hurt. I only recently became able to wear a bra, and I think that may be because I’ve become overweight and have more fat protecting my bones.
My hair is too heavy, and my migraines are often made worse by taking my hair down or putting it up. When my hair is greasy, I have a constant headache. I’m going to be getting a haircut soon because I figure getting bangs will lighten the load significantly. I used to wear pixie cuts, but I look better with long hair (especially after the weight gain) so I’m seeking better solutions.
All of this typing has my body buzzing, and my wrists are aching from the tendonitis.
So my question is, would an EDS/POTS diagnosis be the potential cause of this pain/hypersensitivity, if that is what I have? Or do I suffer from some sort of comorbid pair of pain problems?
Also, I’m going to lose my job because I have to choose between working and having insurance that covers my medications for my other everpresent issues.
Will my quality of life ever improve, or do I just have to keep forcing myself to do fun and interesting things just to balance it out, even though I can’t enjoy them when they hurt?
Damn, this is a bit grim for a first post… I’ll be sure to tell y’all my story when I get the chance.September 3, 2015 at 12:36 am #5652BendyH2OheadParticipant
Sorry for all your pain, sounds alot like multiple chemical sensitivity disorder, but in just the we bit I have read am. thinking this could be related to mast cells, just don’t kniw enough about that. Just watched an interesting youtube video called my “mystery symptoms and mast cells” One woman in this video has many similar symptoms as you.
Hang in there!
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