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March 16, 2015 at 9:28 pm in reply to: Hypermobility but not EDS, other fishy things and referral merri-go-round #5394
Well, appointment felt a little useless because it was rush-rush tone, so I tend to shutdown a bit. But I did ask about meds and also got referred to better PT for my pain. Still nothing more descriptive than “back pain” diagnosis, headaches, and hypermobility at multiple sites. This doc wants me to focus on scapular and cervical stability…the neck stuff would be great because I have absolutely no idea how to strengthen my neck without giving myself a headache.
MRI bit attached. Radiologists called out Chiari (approx. 5mm) but there is some spinal fluid room there…not all jammed in there. But I was really unhappy with my neck curve (non curve or a bit backwards curve). I’m in my 30s. Is this normal? How do I un-do or stop this from moving in the wrong direction? My head has always felt too heavy for my body…bobble head feeling (doc thinks headache and upper back pain is all connected to how I support my head and arms…noted that my neck is long, thin, and I’m just at a disadvantage in some ways because of how I’m built). I’ve had to ask a hair stylist to help me lift my head out of the sink. I mean, I really am a wimp. But do wimpy muscles cause your spine to curve the wrong direction or am I constantly compensating for a weird shape here? I take pretty good care of myself but it seems like really hard work to do normal things like sit still in a chair or be upright for more than a few hours.
Sorry if nobody can really answer here, I understand. No more referrals for me…just PT. And that’s sort of fine because I’m tired. Adding gabapentin and I hope that helps.
p.s. that appointment sounds like a riot, MTD! I have never dislocated a joint, which makes me understandably less hypermobile-like (one of the questions genetics doc had), though they pop all the time.March 15, 2015 at 9:38 pm in reply to: Hypermobility but not EDS, other fishy things and referral merri-go-round #5392
Thanks everyone. I am hoping for a good doctor…bringing my notes and questions.
Thank you Brenda, I have not been here for a while. A genetics doctor said no connective tissue disease because my knees are normal and arm span is normal and no major heart problems in my family. But she said I definitely have hypermobility issues but should see physical therapist. So I don’t know what this is. This week has been pretty bad and my medications aren’t working well anymore, but I see a new physical medicine doctor soon.