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Ehlers Danlos III/HT

Apr 15, 2016 10:15 AM

Hi all, I'm a 21yo female with EDS, constantly having bad flares up and wondering if other than pain meds what else I can try?

Apr 17, 2016 12:16 PM

Hi TDunk123, I also have hEDS. The only med I use for pain is Oxymorphone, it doesn't do anything for me other than make me nauseous.

What does seem to help me are:

heating pads (I currently have 3, 2 regular flat ones and 1 that is made for the neck and shoulders)
Braces (I have one for each knee, a couple different ones for each ankle 1 can even be put in the freezer as an ice pack, a couple different ones for each wrist, each thumb, and my back)
A TENS unit
Epson salt baths
Cane
Forearm crutches
Regular crutches
A reclining love seat
Custom orthotics for my shoes

I think that's my current arsenal :)
Good luck finding what works for you.

Apr 17, 2016 5:08 PM

Thanks! I take cocodamol and amitriptyline but absorption issues means it's not helping lately I use a tens machine but messed up shoulders and hips means no cane or stick it will just add to my pain I have custom insoles too which help but still on the list to see more docs for help October will be my 2nd yr diagnosed so still got a long way to go!

Apr 18, 2016 6:10 PM

Two year is how long I've been diagnosed too. I was 41 when my cousin's son was diagnosed, and 43 when I was. I'm 45 now.

Doctors in my area have never heard of it. Every time I have to go to a new doctor they even ask me how to spell it and what is it... I found a pamphlet from EDNF.org that I try to have with me that I can give them. Doctors in this area also do not believe in bracing, so all of my braces are over the counter, except the wrist ones and the custom insoles. I finally convinced the doctors at Pain Management that I needed the wrist braces when I was popping my wrists back in place 20+ times a day and my hands would go numb while I slept. They still go numb and pop out, even with the braces on, but not as often.

The foot doctor took one look at my feet when I stood up and was making the forms before I even left the office that day My Dad's feet have gotten so bad that by the time doctors agreed that he needed bracing it was too late. His feet are so deformed that he walks on his ankle bones now.

In warm weather I also us Max Freeze, it's a topical gel kind of like Icy Hot (but much cheaper)

ScaryAnn

Apr 24, 2016 3:52 AM

I got diagnosed back in January with EDS type 3 and I have found medical marijuana to help. I hate the psychoactive effects of high THC so I prefer high CBD based tinctures, sublinguals, and balms. I'm in california so it is legal here. Taking turmeric every day can help with inflammation and I take fish oil and glucosamine chondriontin with MSN to help with joint repair. Physical therapy has been very helpful in building my muscles to support my loose joints and meditation helps with the anxiety and fear that comes with chronic pain. I take Ibuprofin when all else fails and heat helps. Learning your limits and when to slow down and take breaks is vital and a continuous process. There are also a couple of braces I have for my fingers to support them every day and I bought economic pens on amazon. There are a lot of helpful things out there if you dig enough.

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