Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and hypermobility

Hi everyone

I am new to this forum and new to this disease. I was diagnosed one week ago. Apart from AS I have long had hypermobility syndrome, aka "loose joints", which has given me trouble (e.g. damage to vertebrae and discs). I just wondered if there's someone out there with the same combination. It would be interesting to know if this combination is associated with a specific prognosis. Furthermore, I'd be grateful for a tip concerning walking: I was told by my rheumy to move lots. Problem is, when I walk for longer than half an hour, my feet and knees hurt due to my hypermobility (this also according to my doctor). Any advice will be appreciated :-)
Nuki

I have AS and EDS (Ehlers Danlos Sydrome - Classic Type). I know that several others on this forum have the AS/hypermobility combo. There are four articles on pubmed if you search Ankylosing Spondylitis AND hypermobility. Good luck!

Hi Nuki

I just wanted to welcome you the Kickin AS Forum. I am glad you found us. Although I am somewhat new here also, I have found this place to be a great refuge. I hope you find it to be as gratifying as I have found it to be.

Hi Nuki, I'm new here too, welcome! I have found this the most positive support group of people! I am still trying to make sense of my diagnosis and the medication choices, etc. and the attitude around here is that you can do it and life is good! I'm sorry I don't have anything to add about hypermobility, but I'll be watching as my 13 yr old son has hypermobile joints...and hopefully will not be AS...
Good luck!
CC

I have hypermobility and the only thing I was ever told was if I need joint replacement I would have more problems recovering. So now I will look up the info on it. Thanks for a heads up.

Hi CC
Thank you for your warm welcome! I am very glad to have found this forum.
My brother and mother are also hypermobile, but absolutely fine otherwise. Their hypermobility does not give them any problems, and no one in my family apart from me has AS. I think the odds are in favour of your son being fine. I'll keep my fingers crossed for both of you!
Nuki

Hi,
As a long term AS sufferer with an element of hypermobility I've thankfully not suffered to much, unlike my daughter who has 'popped' her kneecap twice, putting paid to her sporting activities.

If your problem is confined to walking there are a number of knee braces used in sports whereby the brace prevents your leg from flexing back beyond it's natural angle. They are'nt too bulky, and could easily be worn under jeans.
Best of luck,
Gron

Hi Nuki and welcome!
I have a dx of AS and no hypermobility. My 14 yr old daughter though has juvenile rheuamtoid arthritis and hypermobility. She has had alot of grief from it..mainly her hips. Breaks my heart see her go through this. We were at the threadmill the other day when her 2nd toe crossed over her big toe and she had to pop it back into place. I thought she was lounging in the ladies room. She's getting ready for soccer tryouts starting tomorrow and she's worried about her ankle. For now we have a pull on support brace for her ankle that we hope and pray works for her right now.

Feel free to write me anytime!
Your pal bug

Hi Nuki..

welcome 2 KickAS..i m also a newbie..i was diagonosed with AS recently,around 4 months back..i also have hypermobility, though no disc problems..instead i had RSI(repetitive strain injury) some time back..and the doc attributed it to my hypermobile joints..
..hope things will get better soon..

BR,
Pundarik

Hello Nuki,

Welcome to KA--we're glad you found us. I hope that you are able to find all the support and aid that you need within these forum 'walls.'

I don't have a lot to add other than the fact that your doctor is right--moving as much as possible is good for AS. As one of our banners says, "move it or lose it." While your secondary condition makes moving more problematic, know that moving doesn't always have to mean doing a fair amount of walking. Even getting up from your chair at work and moving around your cubicle a bit will help--instead of going for a walk, just do some quick stretches right there at your cube. Or, go for a shorter walk and combine that with some stretches. Heck, there are even some exercises that are designed to be done while still sitting down! For those times when you do want to do a bit more, you should consider getting into the pool, either to do some actual swimming or to do aquatic exercises (including those designed by the Arthritis Foundation specifically for people with joint problems). Many folks with AS have found the water to be the best place to exercise, as the way the water eases gravity's pull on your joints and muscles makes it SO much easier to move and stretch. This is especially true if you can find a warm-water therapy pool, as the warmth makes things much easier on your muscles.

Anyhow, that's all I have to add--for now! Again, welcome to KA, look forward to hearing more from you.

Brad