An end in sight: diagnosed with hypermobility syndrome

Hi tara: I've never heard of the condition, but how exciting to have such a diagnosis with much HOPE in sight! Congratulations and keep us posted! :)

That sounds like good news.

I have hypermobile joints, and my feet are also somewhat flat (which I believe is due to the hypermobile joint issue). From what my physical therapist explained, there are two types of flat feet. One type is anatomical problem that one is born with. This type cannot arch their feet even if they try when pointing their feet. The other type (the type I have) does have the ability to arch their feet when they point their feet, but because of the ultra-flexibility of the foot as a whole, the foot shifts out of a healthy position and posture when weight is put on it, causing it to flatten.

Also, from what I understand, (in some cases) when one leg is longer than the other, its not actually that one leg is permanently longer than the other, but rather that the sacroiliac joint (in the low back) is slightly pivoted upward on one side causing one leg to be longer. In this case, its correctable. The chiropractor and physical therapist I visit sometimes looks at leg length discrepancies to know how to put the low back back into better posture and position. Fixing this issue can relieve a lot of pain.

Where is the pain the worst for you?

When my low back and sacroilliac joint is out of whack, it throws off my whole body's posture and I even walk different and can feel that I'm walking "off". Starts in the low back, then causes pain up the spine, in the knees, thy, and feet. Walking in the right shoes that keep my feet in a healthier position also helps to keep my back in a healthier posture which helps to keep me in less pain or even pain free (in terms of my back and joints).

All of that may or may not really relate to your issue but I figured I'd share just in case. :)

I have hypermobility. They thought it was Ehlers-Danlos at first (the hypermobility type), but decided later that it was just plain hypermobility. I am still tying to learn about it too, so I am afraid I do not have much to offer atm. (((hugs)))

Post Edited (SoSt9) : 10/16/2012 12:08:56 AM (GMT-6)

Tara,

If you continue to have troublesome low back pain (near your tail bone or right above your butt) and it continues to bother you and you have known hypermobile joint issues, you may want to consider looking into the researching about the joints in the low back. I found a book and physical therapist specializing in this dysfunction that really helped to teach me how to keep my sacroilliac joint alligned which is what caused the pain for me. After lots of research, she found that people that deal with hypermobile joints often deal with this issue that is due to the ligaments in the low back being too lax (kind of like rubberbands that stretch out) throwing off the posture of where the pelvis sits in relation to the spine. This dysfunction in the sacro-illiac can thus cause minor curvature of the spine, because if the "blocks" at the foundation of the spine are out of sort, so will the blocks above to compensate, if that makes sense??? (this is how it makes sense in my head at least)

Once again I'm not a doctor and realize every person's issue is different, but the only reason I mention all this is because, in my case, it was causing me major pain and I had to do lots of research before I found out what was causing it. I even had trouble standing for long or walking any sort of distance or sitting too long.. I was desperate for relief, my back always felt inflamed, and visiting this particular physical therapist and correcting my posture and knowing how to rehabilitate myself helped me to feel better.

Hi tara, i just checked in and luckily saw this post.

Hi deepwell.

I was recently diagnosed with joint hypermobility syndrome, along with fibro and many other problems. I was dx'd with fibro first and jhs later. I have hypermobility in most of my joints. Thankfully i got to see a very knowledgeable rheumatologist who was able to dx it straight away. She has assured me that with exercise and physio i should improve. The physio she has recommended is called nst. I've had 2 sessions so far and it has definitely helped with fibro but I'm not so sure about the jhs. I still can't exercise yet because its too sore on my back, knees, hips, feet... I could go on forever. I started taking a new anti inflammatory, to try to help with the exercise, thats supposed to be easy on the stomach but as usual it was great for a few days and now i have stomach problems again. I have hiatus hernia, gerd, ibs, ulcers etc., its apparently common with jhs.

Im reading (still slowly reading) a great book called Hypermobility, Fibromyalgia and Chronic Pain. Its a tough read as its very medical but very informative. There are lots of secondary conditions to jhs that are covered, such as fibro, Migraines, anxiety, POTS, IBS. Since reading it a lot of things that have happened to me over my life has made sense. I also signed up to the hypermobility.org forum that has lots of great info there. I should have a new book in the post in the next few days called A Guide to Living With Hypermobility Syndrome: Bending without Breaking, great name. I can let you know if its any good if you want?

Make sure that the physio you are going to knows about jhs or will look it up first. I went to physio before i knew i had jhs and i felt way worse after it. It was too hard on my bendy body.

I too have big problems with lower back pain. Walking is a major problem, especially on concrete floors. Then when i sit after walking i have to slowly adjust my spine because of the pain, its like it needs to slowly stretch first. Hopefully my physio will help with it.

I'm still learning about this, there is soo much to read as there's loads of secondary problems. I have two very active young boys, one who is just as bendy as me, so i am determined to get back to being active and prevent my son from having the same problems as me. The Hypermobility i have is genetic (I have lack of collagen in my body) and theres a 50% chance of passing it on if only one parent has it and even if it is passed on it doesnt mean that it will definitley cause pain (thankfully). If you have any questions let me know, i'll try to help if i can. sorry for the long winded post, its 3am again and im wired. Its so hard to get something as simple as a good nights sleep, as we all probably know here. Its over rated anyway

Sean
37yo male.