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Ehlers-Danlos Resources

After my diagnosis with Ehlers-Danlos Syndrome, I was so overwhelmed by the life-long chronic issue of all of my diseases that I couldn’t start reading or researching or really doing anything for it until the following year. I was doing everything I could to somehow get my body back into functional order that I just didn’t have to space to take in anything else. If you are recently Diagnosed and you are reading this then you are light years ahead of where I was! 

                      What not-to-say to someone who has a chronic disease that is incurable. 

                      What not-to-say to someone who has a chronic disease that is incurable. 

 

I don’t know how your brain works, but I AM AWFUL with scienc-y things. I have a friend who is a few years younger than I am whose WHOLE FAMILY has EDS, and shes is SO GOOD about keeping up on research, finding doctors that help her and understanding the science behind it all. ME? Not so much hehe. I guess I say that to say I have no idea how your brain works, so I am going to send over the resources I have that have helped me, and other resources I know about that I don’t understand.

ehlers-danlos-syndrome-hypermobility-silver-ring-splints-silver-ring-splint-company

First off, I will say that the first thing you should do is see a Physical Therapist. They will equip you with certain (easy) exercises you should do DAILY to help build your core muscle strength. That really is the only way you can help your joints stay in place since our connective tissue is so loose! When you get a prescription from your doctor for a PT, you also need to get a prescription to see a O.T, specifically one who specializes in hands. Silver Ring Splints (www.silverringsplint.com) have changed my life. But you have to be fitted by an OT for these. Insurance will help pay for them and they will stabilize your hand joints.. which means no more pain in your fingers and radiating pain down your arm!! Do this ASAP. My doctor here doesn’t “believe I Have EDS, he just thinks I need to see a counselor” so he won’t write me a script to see an OT. But hopefully your doctor will be on board! 

On the same lines as a PT, I recommend you start swimming (even water aerobics), maybe riding a stationary bike, and NOT EVER DOING YOGA!. I am going to start doing pilates soon (I hope!) and I’ll let you know how that goes. Even if it seems impossible, get in the water for 5 minutes a day. You’ll slowly work yourself up to being able to do a little more. BUT DON”T PUSH YOURSELF!!! If your legs start to go numb (like mine always do) STOP. With EDS you can definitely over-do it, so slowly (so slowly!!) build up your strength. It’s imperative to your health!

There’s a few good reads I recommend:

The Hypermobility Handbook (http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1431790275&sr=8-1&keywords=hypermobility+handbook )

Happiness In A Storm: http://www.amazon.com/Happiness-Storm-Illness-Embracing-Survivor/dp/0393329054/ref=sr_1_1?s=books&ie=UTF8&qid=1431790324&sr=1-1&keywords=happiness+in+a+storm

Our Stories Of Strength:: (recognize the person on the front?!) http://www.amazon.com/Our-Stories-Strength-Ehlers-Danlos-Syndrome-ebook/dp/B00X8TG60I/ref=sr_1_1?s=books&ie=UTF8&qid=1431790360&sr=1-1&keywords=our+stories+of+strength

also, EDNF. org has some great articles and also does podcasts with doctors! (that I don’t understand! haha) :: http://www.ednf.org

For Pain. I HIGHLY recommend you seeing the fine people at ANY community acupuncture clinic. Community Acupuncture is affordable and can be found in almost any major city. Just google "Your City Community Acupuncture Clinic". Go as often as you can. Acupuncture has literally saved my life and I can’t recommend it enough for pain management. 

I honestly try not to dive too much into all of it because I can’t allow myself to go down the rabbit hole (I’m sure you understand that feeling!). I only choose to read things that are helpful and only choose to fight my battles that I NEED to fight. If I went to the doctor for every little ache and pain my life would be filled with doctors appointments, and I just can’t allow that to happen! 

Lastly, I have a EDS/Fibro/Chronic Pain pinterest board that I pin helpful articles, devices, and funny things to that help me cope, help me learn and keep me researching. If you want to dive deeper, I recommend you visiting! :: https://www.pinterest.com/mnewsomphoto/edsfibromyalgiaendochronic-pain/