Newly diagnosed with Ehlers-Danlos Syndrome...

[Seeinghope]

16. I am glad that you finally got a diagnosis. For me it connected all of the dots.

Even dots that I didn't know we're going to get connected. It is something that can affect just about all aspects of your life. My EDS is mainly the hypermobility type. It isn't as severe as what I have heard of others. You need to research because that will be your best friend. The doctors just don't have the time or they don't realize how many ways that you can and are affected. For instance. For myself.

My skin is stretch, I sunburn easily, sunstroke, sun poisoning..heatstroke. I don't tolerate heat very well in general. My eyes are sensitive to the light. I scar easily. I can form scar tissue easily from surgery. I bruise easily, I am harder to sedate for surgery. I need more sedation than average. I need higher doses of pain medication for it too be of any good.....(of course doctors are always suspicious). I tire more easily. I am hypermobile in my feet, ankles, knees, hips spine, wrists, fingers. That is about all that I think.

I've had carpal tunnel on both wrists for years and ended up with the 2 surgeries. I've had 2 hip replacements after putting up with years of osteo arthritis. I just had my knee replaced. I have a great surgeon but having EDS can cause complications with surgeries when you heal. So I either have scar tissue or a band in the side of my knee causing me problems and I will have to have another surgery. I wear orthotics for my feet.

It is important that you find a really really good rheumatologist/pain management doctor. My doctor is both which works out great. Hopefully you can find one like that but if now that is O.K. Just make sure that they are both really good and that they know about and respect EDS. Like I said about the pain meds. People with EDS generally need higher doses since our bodies don't seem to synthesise it the right way.

Check out your vision, hearing.......it can literally affect anything. I also had my heart test for the "mitral valve prolapse" which I was fine and the vas majority of people are but there is the chance that there can be a valve issue.

Also as far as your activity goes it is best not to do high impact type activity...weight bearing things either. You don't want to stress your joints. Exercise is good but easy exercise. Exercise that doesn't require excessive stretching or lifting. Swimming and Pilates are really good. Some kinds of yoga are good too. Just normal movement type activity. Work in strengthening your muscles to compensate for your tendons and ligaments. Gently though and with balance. You want your muscles strengthened equally strengthened to keep you in balance. Don't over stretch.

This is why I say research is your best thing because you will know more than most doctors by doing it. Most doctors don't know and/or recognize EDS as anything of significance because they really have never seen it or they have seen it but they just don't bother to try to identify it.

EDS has changed my life. I cannot say for the better either. I know of people who have it worse though so I am lucky. I hope that I have helped you. Just be your own advocate. Don't let doctors intimidate you either. Good luck!