Real Life Living with Ehlers-Danlos Syndrome episode 1

This is about me living with a connective tissue disorder, Ehlers-Danlos Syndrome! Day to day living is very difficult, but with the support of friends, loved ones and my awesome doctors I can make my life meaningful!!

Category:

People & Blogs

Tags:

• Ehlers-Danlos Syndrome
• EDS
• chronic illness
• connective tissue disorder
• rare syndromes
• genetic disorders

[Wtfgames]

i have type 3 :(

Is this my future?

[angelEDSer]

@Wtfgames this is not necessarily your future. I am actually way stronger now. I was in physical therapy for several years, and it has made a huge difference. I have hypermobility (type 3) also, but it's different for everyone. 

[Wtfgames]

@angelEDSer

WHat about medication}

Does it get much worse with time?

I am 23 and its already starting to hurt like hell

[angelEDSer]

@Wtfgames Well, as far as meds, it takes a lot of trial and error at least it did for me. Definitely keep your muscles toned (especially your core). Have you talked with doctors about meds at all? I don't bleed a lot from minor cuts. I'm sure other EDSers do though. Sorry you have so much pain. Neurontin has really helped me. But like I said, it's different for everyone. Plus, I have a great physical therapist who understands hypermobility. She has helped me emensely.

[NJSMKMMS]

Also what sort of injuries do you have in your back and neck. My injuries are mainly because of worn out discs and the resulting athritis and nerve compression issues. I also have issues with my feet, ankles,knees,right hip, right wrist, elbows, right shoulder neck and lower spine. I have chronic pain and see a pain managment DR but there is almost no medication I can take because of allergy, GI issues and side effects. What methods, non medical do you use to relieve some of your pain?

[NJSMKMMS]

So sorry to hear of your condition. I have been reading up and think my 8 year old son and I may have EDS Hypermobility. I was wondering if you know is there any variation in the testing for a young child. Also I am 43 and have had many injuries in joints and in my sacral Lumbar region and my cervical region. so apparently I am fairly arthritic. How do the tests take into account injuries that may have been caused by EDS but are now stiff because of Arthritis and scar tissue in the same areas?

[Wtfgames]

@angelEDSer

Im already suffering from massive joint damages, chronic pain and also begin to develop arthrosis :(

DO you bleed alot from minor cuts like i do?

[katti359]

@musiclover2392 I'm so sorry for you! I also have EDS, i think it's Type 6..

[angelEDSer]

@musiclover2392

Sorry it took so long to get back to you! My shoulder was like that too. I went to physical therapy to help strengthen my muscles. I also had several cortizone shots. As far as the sling, it seemed to help too. It gave the shoulder a rest a times. Maybe you can use the sling at home? Plus, you can ice and/or heat the shoulder. I mainly used ice, but heat helps too. I hope that helps a bit! :)

[musiclover2392]

@angelEDSer .. hey thanks.. its takes FOREVER to get into my doctors here so i was wondering if you could answer me this.. i hurt my should and in dislocated it like 3 years ago and ever since then it has subluxed once in a while, and now it constantly subluxs.. as in ever time i put my arm down by my side it pops.. what should i do. cause sometimes i put it in a slig, but then people are always asking questions..would a brace help?