“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

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  1. I’m reading through your post and so much of it is “déjà vu” – makes it harder for me to understand how people are so perplexed. Midrodine is making such a huge different in Gen’s lifestyle – she is now talking about walking to the corner store which is about a block away. 🙂 It really isn’t helping her gut though, which is getting more and more difficult. She can barely eat anything anymore. I have no clue what to do as the dietitian we saw was totally incompetent and not open to discuss or even consider Gen’s condition.

    Glad to hear that your neuro sounds smart and that your cousin will be treated in some way. 🙂

    • Thanks! I realize now that I was really bracing for impact this week with the two “high stakes” doc appointments. I think they went pretty well.

      😦 that stinks that the midodrine isn’t helping Gen’s gut and that the dietician wasn’t helpful. I eat a very, very modified diet, drink a lot more water, and when I stick to it, it helps. Is Gen having gastroparesis symptoms?

  2. I actually see a PM&R for the EDS too, not that he knows loads about it, but he went to a good med school at least. I started seeing him a few mos before my diagnosis and he agreed to continue with me. I have to do the range of motion tests for PT and I’m OK with it, but probably due to having CEDS. I would be really careful with chiropractors as that’s contraindicated in EDS, but maybe if they are really gentle it would be OK.

    The thing with PT is that if you find a place that knows about hypermobility, they have you do little exercises that strengthen the muscles around the joints to stabilize them. Without those muscles, everything will stay subluxated so I do think it makes sense–even with HEDS (and especially if you subluxate like I do). From there, you can move on to general strength training (the machines) if you can handle it, but anyone that has you start there has no clue. That’s what I do and it has helped, but my pain hasn’t budged and we’re not sure why. I would really suggest it though, because I think the right PT (stressing “right”) can get your hip back in place and it should stay with continued work. As you know, when our tendons/ligaments are worthless, all we have are the muscles to hold things together.

    I have mast cell tests heading off to Mayo next week–been waiting 3 yrs on that, so if your labs end up there, maybe our samples can hang out in the same room! Lol. Well, maybe one of us will get somewhere. I hope you can get something solved at the very least. Has this been a really crappy year, or is it just me? In many ways, I feel worse since getting my diagnosis this time last year. With the GP, you probably feel the same.

    Hang in there… And interesting that your PCP I want to steal thinks you really are related to your cousin too. 🙂


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