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Any other people out there with severe Joint Hypermobility Syndrome?

Answered on August 19, 2014
Created July 19, 2012 at 8:17 PM

Hey everyone,

After being treated for may years for a combination of arthritis, Chronic Fatigue and/or fibromyalgia and none of those treatment helping even a little (all sorts of SSRIs and pain killers that did nothing) and trying yoga and whatever other stretching work I could find I come to finally discover that I have JHS. I discovered it a couple of years ago and had it confirmed by my doctors (several since I was going to a bunch of specialists).

Basically it is a collagen deficiency that causes little to no stability in the joints. The ligaments become quite stretchy and dislocations are very common. My shoulders are so mobile that I can move them in and out of their sockets using just my shoulder muscles with no pain whatsoever. The problem is that the muscles have to take over the work of the ligaments and so you are basically doing an isometric exercise every waking moment in almost every joint, and this causes rather severe fatigue as you may imagine.

Paleo has helped me a ton as I am, through increase fat and reduce simple carbs, increasing my day to day energy. The lack of inflammatory response reduced the joint pain a ton too.

My question, after such a long winded intro, would be: Is anyone else working through JHS? What are you doing to deal with it? I have been doing power lifting and Pilates, both have helped a ton. Are there any supplements or foods that you would recommend?

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 24, 2012
at 02:45 PM

No sorry I meant that I haven't seen sites where people claim the incorrect things she is clarifying on the site. I didn't see anything there that I didn't agree with. She seems to know her stuff as far as I can tell.

C4134ed417dbc0a6b79ab2cee32632d3

(1811)

on July 22, 2012
at 07:35 AM

Her site isn't anecdotal. She's a Biomechanic - it's her business to know how the body works! Better site than most medical sites I'd say :-)

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 20, 2012
at 05:06 PM

Interesting read... I don't think I have ever seen any of the misconceptions she is talking about but I was researching this on medical sites and ignoring most of the personal/anecdotal ones so I may not have seen them.

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 20, 2012
at 02:20 AM

Yea I am an 8, and the only reason I am not a 9 is because my hamstrings shortened to support my extra mobile back and hips. The heavy lifting is a warning for people that have not built in muscular stability before hand. If you are careful with your lifts and -generally- stay at your 5-8 rep max you are OK. Don't go to 3 or 2 rep max without a coach that understands your condition. It adds stability to your joints and decreases the energy it takes to hold them together. Just remember form form form.

A2e73b869061fc20067e4ef8f26f83f0

(140)

on July 19, 2012
at 11:36 PM

Hmmm.... this guide says to avoid heavy lifting.... But I don't WANNA!

A2e73b869061fc20067e4ef8f26f83f0

(140)

on July 19, 2012
at 11:31 PM

Thanks for sharing that! I score a 3 on the scale (though I think I would have scored higher as a child) and I do have some of the symptoms mentioned like dry mouth (I've been tested for diabetes a lot because of how thirsty I am) and difficulties sleeping.

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 19, 2012
at 09:03 PM

Yea bone broth was one of the things I was considering. I have to whip up another batch soon. JHD is a spectrum disorder, so you could have it to a certain extent or only in certain joints, but the cause is generally the same I think. I did find this write up that explains a bunch and gives some good info. http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

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3 Answers

1
C4134ed417dbc0a6b79ab2cee32632d3

(1811)

on July 19, 2012
at 11:21 PM

Ive been told that I have some hypermobile joints. Seems that stretching doesn't really work at the end of exercises. I can never feel them...

Anyway, one of my favourite bloggers: http://www.alignedandwell.com/katysays/hypermobility/

She's a Biomechanic and looks at the body holistically :-)

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 20, 2012
at 05:06 PM

Interesting read... I don't think I have ever seen any of the misconceptions she is talking about but I was researching this on medical sites and ignoring most of the personal/anecdotal ones so I may not have seen them.

C4134ed417dbc0a6b79ab2cee32632d3

(1811)

on July 22, 2012
at 07:35 AM

Her site isn't anecdotal. She's a Biomechanic - it's her business to know how the body works! Better site than most medical sites I'd say :-)

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 24, 2012
at 02:45 PM

No sorry I meant that I haven't seen sites where people claim the incorrect things she is clarifying on the site. I didn't see anything there that I didn't agree with. She seems to know her stuff as far as I can tell.

1
A2e73b869061fc20067e4ef8f26f83f0

(140)

on July 19, 2012
at 08:55 PM

I don't believe I have this to quite the same extent, but I have been told that I have hypermobility (or that I am "loosey-goosey" as my surgeon so eloquently put it). I have had numerous subluxation and dislocations of one of my kneecaps and I have also subluxed my shoulder once. I have had surgery on my knee to replace the worn out/damaged/too loose ligament and have undergone a lot of physical therapy.

I have always liked lifting so this is my main form of exercise. I have not considered that it could be helped through diet (don't know why this has never dawned on me), but I imagine that bone broth couldn't hurt.

A2e73b869061fc20067e4ef8f26f83f0

(140)

on July 19, 2012
at 11:31 PM

Thanks for sharing that! I score a 3 on the scale (though I think I would have scored higher as a child) and I do have some of the symptoms mentioned like dry mouth (I've been tested for diabetes a lot because of how thirsty I am) and difficulties sleeping.

A2e73b869061fc20067e4ef8f26f83f0

(140)

on July 19, 2012
at 11:36 PM

Hmmm.... this guide says to avoid heavy lifting.... But I don't WANNA!

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 20, 2012
at 02:20 AM

Yea I am an 8, and the only reason I am not a 9 is because my hamstrings shortened to support my extra mobile back and hips. The heavy lifting is a warning for people that have not built in muscular stability before hand. If you are careful with your lifts and -generally- stay at your 5-8 rep max you are OK. Don't go to 3 or 2 rep max without a coach that understands your condition. It adds stability to your joints and decreases the energy it takes to hold them together. Just remember form form form.

5457372e78a910c00cd1dd579ecbdce3

(1230)

on July 19, 2012
at 09:03 PM

Yea bone broth was one of the things I was considering. I have to whip up another batch soon. JHD is a spectrum disorder, so you could have it to a certain extent or only in certain joints, but the cause is generally the same I think. I did find this write up that explains a bunch and gives some good info. http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

0
F61f432b06e437a501b3ac7c148851c0

on October 28, 2013
at 01:32 AM

I also have been diagnosed with severe JHS that has lead to early onset osteo arthritis, after being misdiagnosed with Rheumatoid Arthritis. I have been trying a paleo diet to help and have seen some good results, and have found working with a physical therapist to be helpful also. I have noticed mainly a decrease in my fatigue levels after the diet change.

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