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~Hypermobility EDS~ For everyone with HEDS. Come here to talk about your daily lives, medications, doctor appointments etc. relating to this type of EDS.

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EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.

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Old 09-11-2010   #11
ReineDeLaSeine14
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I just wanted the info in that post to be preserved which I see it has. Thanks
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Old 10-20-2010   #12
xxBrittany
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Since I've seen Dr. Francamano, she put me on Lidoderm (Lidocaine) patches which = MIRACLE WORKERS.

And she has prescribed Percacet..
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Old 10-22-2010   #13
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Wow I'm on both of those. Lidoderm is COLD when you put it on though...this tip is from my mom...sit on the patch and warm it with your butt before you put it on your skin
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Old 12-27-2010   #14
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Goooooooooooood idea!
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Old 07-22-2011   #15
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Has anyone tried "alternative methods" for joint pain? I am going to the doctors today, and they are planning on looking into other methods of treatment, like a tens unit, aquatic therapy, acupuncture, or things like that. They are also planning on putting me on Omega-3. Has anyone used these methods and found them helpful?
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Old 07-22-2011   #16
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I do a lot of water therapy and it's REALLY helped me. In fact, it's made me a TON stronger. I have also done a lot of massage therapy and that helped me more than anything, in the short term. I've used the TENS unit, but in all honesty it didn't help me much at all. Omega-3 made absolutely no difference in me.
In my non-professional opinion, the best thing one can do for themselves when they have EDS is to slowly strengthen their muscles so they can hold themselves together easier.

What I'm currently on for pain, medication wise, is Suboxone and Neurontin. =]
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Old 07-27-2011   #17
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I've done a little massage therapy, and it helped some with pain, but made my SPD (sensory processing disorder) really confused (it freaks out my brain when people touch my back). I've done aquatic therapy once, and I'm looking to get back into it if there's a not-so-hot therapy pool in my town. TENS units also mess with my SPD. I'm currently weaning off of Lyrica and on to Gabapentin, I'll post later how it works for me. No reactions yet (knock on wood). I'm also on tramadol for breakthrough pain, which helps tremendously.
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Old 08-15-2011   #18
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I have a pool at my house, so I always try to do some aquatic therapy each week, but during the colder months I visit our local YMCA which has a heated pool, which I do laps and things that seem to help. I also take a lot of warm baths, not hot, because it seems to make me want to pass out if I do that due to my dysautonomia. Anyways, right now for pain, I am not on anything but muscle relaxers which seems to be slowly killing me because I do not think they are helping at all and Dr. Francomono seems to not want to help with pain at the current moment but I see her September 23rd so hopefully I can get her to change our plan a little. I do take a lot of supplements, and try to eat healthy and I find that helpful sometimes too. I notice if I eat something really sugary it makes my body feel ALL sorts of bogged out. So eating healthier, makes me feel healthier, literally.

Also, I have a TENS unit I am borrowing from my cousin, and it helps a little, but then I think it doesn't work at all, and I have had massage therapy and a couple more sessions that my Dad bought me for Christmas to use, and I HIGHLY recommend them!

As of Lidocaine patches, I think they work to some extent, and always use ice & heat, I find that helpful sometimes too!
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EDS Kids is a support group and community dedicated to helping young adults and children who suffer from chronic pain caused by illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS) is a debilitating genetic connective tissue disorder which causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
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