Ehlers-Danlos syndrome: Take Your Time

Don't let time pass by just because you're not feeling well. Rest, and try again.

Category:

Nonprofits & Activism

Tags:

• braces
• collagen
• danlos
• discover
• double
• double-jointed
• EDNF
• EDS
• ehlers
• flexible
• hypermobile
• hypermobility
• jointed
• splints

[vivisonga1111]

apply the take your time now!!!! :)

[ufo8mykat]

@vivisonga1111 I can't, I'm busy! ;)

[mercuryneedle]

Migosh, sama, this was 2 and a half years ago, but you look so different! ^_^ Trying to keep up my spoons, to stay positive and not give up. Things are pretty hard right now but you're an inspiritation. As you might say "I will not let this thing beat me" xXx

[AnatomyofaDiary]

I not sure I agree so much with this video. It seems a little extreme, but I have rejected everything any doctor ever told me about my body and I am one of the most physically active people I know. At first when I found out, I felt the same way; the doctors told me my body should hurt so my body hurt, when they said I could die I thought I was dying. When I woke up and told myself I was done with that and meditated on every positive thought I could have about my body, it responded.

[AnatomyofaDiary]

I have one of the most extreme cases of ehlers danlos I have ever seen, and it doesnt inhibit me from doing anything anymore. I kickbox, rock climb, mountain bike, dance and would do none of these things if following doctors orders. Ironical, if I go in for a check up and dont mention my ehlers danlos I am told to be in immaculate shape, but if I tell them all the sudden I am a train wreck waiting to happen.

[AnatomyofaDiary]

Your mind controls your body, not a doctor, but if they tell you something long enough, you might just start to believe it. Also, I would suggest looking into vegan diets. When I went vegan what little bit of pain I had left. On a vegan diet you intake a lot of calcium and potassium, which is great for your muscles and bones. Furthermore, you take out many stagnant substances. It would make a huge difference in the way you feel. I wish you the best of luck!

Aaron Hicks

[oliphant76]

Well the Land therapy was the worse for me. I tried to give my pt information on eds but she still had me lifting weights and doing squats. My pelvis is really bad and it pops out everyday and it will stay out for a week or more even when I get adjusted. My pt pushed me to do my therapy anyway after that I was in the hospital for three days. Water therapy didn't work either the rotations made it worse too. I already use a wheelchair when my pelvis is out . my body have spasms causing numbness.

[angelEDSer]

Great video! Thanks for the uplifting message. I love your attitude!

[ufo8mykat]

Yep, and if they don't know EDS, and you're not sure how to explain it to them, if I were you I'd move on. Until you know enough to advocate for yourself AND you feel strong enough, find a provider that will teach you and help you grow. I got extremely lucky, it all fell into place at the same time. I wish you the best, and challenge you to be fiercely selective on your journey. Stay in touch, ok? :)

[ufo8mykat]

Well, sometimes you don't need a dx to treat the symptoms. Though arthritis and EDS treatments are polar opposites, a good PT/OT will know the mid-range to help you gain control until you have more definitive answers. Thank you so much for sharing your story. Good luck!