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About Me
edssucks
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About Me
i'm 35, was just diagnosed with ehlers danlos syndrome, the hyperflexibility type, a year and half ago. i have had multiple sublixations of multiple joints, i've torn ligaments, have osteo arthritis in wrists, hips, foot, shoulders. just had my fourth surgery on my wrist and had a full fusion. i hurt all the time which is exhausting. i always had injuries, but for the most part they healed. now it seems that the more joints affected strain the joints compensating and my health continues to deteriorate. i'm looking at bilateral hip replacements next. it has so hard to accept this new identity, to be disabled so young is beyond comprehension sometimes. i have not had a pain free day in three years. i never appreciated good health (minus the breaks, sprains, etc) until i lost it. it seems every time i go to the dr for something i walk out diagnosed with something additional, last time was glaucoma. i go to my drs like its a part time job. i feel like i'm 90 internally and the worse i get the harder it is to enjoy life. the real kick in the ass is that my husband was diagnosed with marfans syndrome right after we got married, had an aortic aneurysm, the works. he's ok now. ironically, his dr said i should get tested for marfans before we started a family, just to be safe. he didn't even know my medical history. i looked at him like he was crazy. then three years and multiple car accidents later, i finally found a dr who recommended genetic testing for eds. what are the odds that someone with marfans and eds would marry.
i'm 35, was just diagnosed with ehlers danlos syndrome, the hyperflexibility type, a year and half ago. i have had multiple sublixations of multiple joints, i've torn ligaments, have osteo arthritis in wrists, hips, foot, shoulders. just had my fourth surgery on my wrist and had a full fusion. i hurt all the time which is exhausting. i always had injuries, but for the most part they healed. now it seems that the more joints affected strain the joints compensating and my health continues to deteriorate.
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Support Groups
Close Ehlers-Danlos Syndrome
i would like to get pregnant but am scared for my health and the high risk drs think that any pregnancy would end up in a miscarriage or me possibly bleeding to death. my case is extremely hyperflexible. i know drs give the worst case scenario, but i was wondering if anyone with eds hyperflexibility had successful pregnancies. if so what complications? also, not taking pain, antidepressants, or antianxiety meds for nine months is overwhelming. i'm in therapy for pain and anxiety management, but i do need meds too. i just don't know what to do. i want a baby, but don't want to die for it. and i don't think that i can emotionally handle miscarriages.
Treatments
- Psychotherapy Working / Worked
- constant hard work. worth it. a place to cry be mad hate the world but come out grounded and feeling better.
- Writing Working / Worked
- Positive Thinking Working / Worked
- Support from Friends & Family Working / Worked
- my mum and husband are great. but i always feel like all i do is complain.
- Wellbutrin Working / Worked
- Meditation Working / Worked
- brings calmness relieves tension which can reduce some pain.
Close Hypermobile Syndrome
i'm 36 and just diagnosed 2 yrs ago. i've had countless breaks, fractures, sprains, subluxations, and surgeries. one wrist is fused and the other on its way. now i'm pregnant, not planned. decided to adopt so wouldn't stress out my body. didn't work out that way. plus my husband has marfans syndrome. so what should be the happiest time of my life is unbearable with pain and fear for my baby and me.
