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Hypermobile Joint Syndrome


kbtoyssni

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kbtoyssni Contributor

I've been having joint pain lately that seems to affect most of my joints. One day it will be the knee, the next the elbows, etc. I went to a rheumatologist who diagnosed hypermobile joint syndrome. Which is just a fancy way of saying I'm flexible. He's very right - my joints are loose and I do tend to get injured easily because of it. His suggestions: lift weights and maintain a healthy body weight, both of which I am already doing. When I told him that his next suggestion was to get a second opinion... But honestly, I was impressed that he even came up with a syndrome for me.

So, I feel like this is one of those diagnoses like IBS or FMS that is describing the symptom not the cause. Any ideas on cause or what I can do? I was thinking about eliminating nightshades for a bit, but that's my only idea.

Rundown of the bloodwork: Lyme, rhumetoid arthritus, muscle enzymes, thyroid all fine. The only strange thing was my blood calcium level was 10.2 (normal is less than 10.1). Doc didn't seem too worried about this (although I don't really trust him 100%). I know this could be a sign of hyperparathyroidism, anyone know how to know for sure? I will definitely be getting this test redone in a few months to recheck, but my symptoms do seem to match that of hyperparathyroidism.

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ravenwoodglass Mentor

I also have hypermobile joints but it is from something called Ehlers Danlos. You may want to get evaluated to see if that is the root cause of the hypermobility. The main reason to check is because while being hypermobile is not usually a problem for much other than sprains and strains, Ehlers Danlos has other features in the skin and internal organs that could cause problems. One type is more prone to organ rupture so it is a good thing to rule out. I believe testing is a skin biopsy and or genetic testing. MOST hypermobile folks are simply hypermobile and the best thing you can do for that is to strengthen your muscles to help support the joints.

For me when I injest even small amounts of gluten I retain water throughout my whole body including the fluids in my joints. For me this causes my joints to dislocate with little effort. I have to brace and wrap my ankles and feet when this happens because they dislocate in my sleep.

When I get pain and inflammation in my joints from anything I take baby asprin, for some reason good old pink St. Josephs work better than anything.

I also found that nightshades were a problem for quite a while, but I had been really loading up on them post diagnosis without thinking about. I cut them out for a few months and now can have them on occasion with no problem. There are others who also have a problem with them so this may be something you want to check out.

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mftnchn Explorer

Sorry, I don't know what else it might be. That very type of migrating joint pain was what tipped my LLMD that I had lyme. Is a blood test adequate to rule that out? I always thought lyme was a clinical diagnosis. I had a different test and don't have the copies here in China with me. I believe it was the test done by Bowen Labs, still in an experimental stage. It was not covered by insurance and cost a $200 "research contribution." From the description, I believe this was the Q-RiBb referred to on the internet. I never had the Igenex test that I know of.

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tarnalberry Community Regular

All of my PTs have also noted that I have hypermobile joints. I would encourage you *not* to "just lift weights" but to work with a PT or someone else who's trained in dealing with this sort of thing. There are particular muscle groups you need to have strong enough to not hurt yourself - and balance in the muscle groups will be more important than strength in and of itself.

Additionally, hormonal changes can affect this. It's far more common for women to be injured during the first week of their cycle, for instance, because the hormone changes allow tendons to stretch even further than they should.

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kbtoyssni Contributor

Thanks everyone! I don't think it's Ehlers Danlos, none of the other symptoms seem to match.

I have taken a weight training class so I've got the basics like don't just work the biceps, work the triceps, too, but seeing a PT would probably be a good idea. I talked to someone who goes to my gymnastics open gym who used to be a PT and she was giving me some advice on what to do for my hip tendons that are loose and snap over the bone so some good exercises aimed at specific joints is a great idea.

I just looked up the Q-RiBb Lyme test and it looks like this one will eventually become the "gold standard" of Lyme testing since it tests for the bacteria rather than the antibodies to it. From what I've read the blood test can have false negatives. Although I've had several blood tests over the past few years and these symptoms are a more recent thing since I started to become super active again. I've also had several injuries that I feel are related to the extreme flexibility so I don't know, it could be Lyme, but I don't feel all that strongly that's what it is.

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tarnalberry Community Regular

I should add that I'm sure my chiropractor would say that you should make sure that you're checked for proper structure as well. Strong muscles can only help so much if your architecture (and posture) isn't set properly. :)

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