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DR SAYS I'M TOO OLD FOR EDS TESTING ??

M5646
  • By M5646 · New reply 1:14 am
  • Discussion in General discussion · 13 replies
  • I HAD A DAUGHTER THAT HAD EDS III. SHE DIED FROM SUICIDE FROM EVERYTHING THAT WAS GOING ON. GINNER WAS 25. YEARS LATER I'M AT PT FOR MY ACHILLES WHICH HAS BECOME STIFF. THE LADY TOOK ALL MY HISTORY, WOW ...

EDS and the autism spectrum

xrRainbow
  • By xrRainbow · New reply 12:00 am
  • Discussion in General discussion · 1 reply
  • I'm beginning to realize that what I've been thinking since I was about 18 might be true. I do have some mild signs of autism. And I'm more ready to accept that. I'm not very comfortable socially, and ...

Running with hypermobility type EDS

Lifeisasong
  • By Lifeisasong · New reply yesterday at 11:34 pm
  • Discussion in Exercise · 40 replies
  • I have the hypermobility type of EDS but I love running and my friends do, too. I've found, though, that when I run long distances, my joints hurt for days afterwards, so I've resigned myself to the elliptical ...

Menopause

Loosy
  • By Loosy · New reply yesterday at 9:14 pm
  • Discussion in Hypermobile EDS (Type III) · 1 reply
  • Has anyone made it thru menopause yet? I'm looking for information how the changing hormones can affect collagen ...

Rosacea and EDS

MightyMarse
  • By MightyMarse · New reply yesterday at 8:52 pm
  • Discussion in Hypermobile EDS (Type III) · 12 replies
  • Hi! Just wondering if Rosacea is associated with EDS? My brother and I both have Rosacea. I was officially diagnosed in January with EDS, by a Medical Geneticist from Penn. My brother has yet to be diagnosed ...

Skin problems

agreen06
  • By agreen06 · New reply yesterday at 8:14 pm
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • I was just wondering if anyone has a problem with thin facial skin. The skin on my face is so thin that the capillaries can be seen. I have very red cheeks that I have to cover with makeup everyday. Is ...

Pain Medication

agreen06
  • By agreen06 · New reply yesterday at 7:52 pm
  • Discussion in Pain management · 1 reply
  • Hi, I am 29 years old and have been suffering from hypermobility for about 10 years now. Over the years my pain has gotten worse. I am starting to have problems with more joints. I have snapping scapula ...

15 and dealing with JRA HEDS and POTS... Help?

Nina_Storm
  • By Nina_Storm · New reply yesterday at 7:40 pm
  • Journal · 1 reply
  • So Last December I was diagnosed with JRA and the swelling in my body got so bad I gained about ten pounds. During Christmas I could barely walk or sit down. I even had to change the way I did things ...

C1/C2 instability diagnosis

Toraline
  • By Toraline · New reply yesterday at 7:28 pm
  • Discussion in Bones, joints and muscles · 40 replies
  • Hi, I'm just wondering if anyone knows what the proper diagnostic test is for a C1/C2 instability. Is it always an MRI or are there other tests? I had an upright MRI, but the results said no signs of ...

Chiari malformations

ChunkeyMonkey
  • By ChunkeyMonkey · New reply yesterday at 6:28 pm
  • Discussion in Neurologic issues · 6 replies
  • My DD is having an upright MRI. to try and diagnose this or indeed exclude it. We have a lying down MRI that is seen as being normal. Should I bring that along to be compared. It will be conducted by ...

Breast implants surgery and eds

Shakiracarolan
  • By Shakiracarolan · New reply yesterday at 6:20 pm
  • Discussion in Dermatology / wound healing · 10 replies
  • Hi everyone! I'm interested to know if any one has had breast implants and if they have had any issues. I have wanted them for a while but thought I'd do a lot of research first. I have EDS 3, I have ...

New here and some advice needed please

Kwstar1
  • By Kwstar1 · New reply yesterday at 4:59 pm
  • Discussion in Hypermobile EDS (Type III) · 3 replies
  • Hi everyone, I'll start off by telling you a little about me as I'm new to this group. My name is Kristin and I'm a 21 year old female. Just recently I was officially diagnosed with eds types 1 and 3 ...

acupuncture

tania66
  • By tania66 · New reply yesterday at 4:09 pm
  • Discussion in Pain management · 2 replies
  • Hello All- I am new to the group. My 13 year old daughter has POTS, Chiari Malformation and EDS. I also have Chiari and suspect EDS as well given what I learned from the doctor we met with this week ...

Social Security Disability, SSI & Child's SSI Book by lawyer w/ eds- advice

butterfly822
  • By butterfly822 · New reply yesterday at 2:27 pm
  • Discussion in General discussion · 38 replies
  • Hi, everyone! I have HEDS and told possibly vascular EDS. I'm also a lawyer who primarily practices SSD, SSI and Child's SSI. I am on a sabbatical right now while I heal broken bones from an accident ...

New rules for Vicodin scripts

sarahsnana
  • By sarahsnana · Posted yesterday at 2:22 pm
  • Discussion in General discussion · 0 replies
  • Yesterday my sister, a cancer patient, talked to three of her docs trying to get a refill on her pain meds. Two docs flat-out refused her, saying she had to go to Pain Management. She has seen a PM Doc ...

Physical Therapy

Delaware1980
  • By Delaware1980 · New reply yesterday at 12:13 pm
  • Discussion in Newly diagnosed · 8 replies
  • Hello, I was just diagnosed with EDS type 3/hypermobility and am searching for an experienced physical therapist that can help me with full body PT for my joints. I live in Northern Delaware and am having ...

Bunionectomy helpful?

janegood4all
  • By janegood4all · New reply yesterday at 10:27 am
  • Discussion in Hypermobile EDS (Type III) · 4 replies
  • I am scheduled to have a bunionectomy in a few week. Has anybody had a positive expetience after a bunionectomy? I saw a long string recently about the down sides of foot surgery for hypermobile types ...

Those Animals at Work

CentaurInaChinashop
  • By CentaurInaChinashop · New reply yesterday at 10:10 am
  • Discussion in General discussion · 5 replies · Photos
  • Came to work the other day to find these guys starting to take over! photo IMG_0873_zpsbff76423.jpg photo IMG_0874_zpse58cc4cd.jpg Then yesterday night, just before supper, this group showed up. photo ...

Need advice please

karinabutterfly
  • By karinabutterfly · New reply yesterday at 9:59 am
  • Discussion in Hypermobile EDS (Type III) · 2 replies
  • Just a couple of things about how everything started: Here is a brief summary of what has happened to me in the recent years. I was 24 and I just finished my study as a laboratory technician. I got a ...

Hands

CMRLR
  • By CMRLR · New reply yesterday at 3:03 am
  • Discussion in Pain management · 2 replies
  • Hi Everyone Over the past month i have had increasing pain in my hands. Way back in Feb of this year, my dotor said i have de quervain's tenosynovitisin my wrists - this was diagnosed purely on what i ...

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The Ehlers-Danlos National Foundation Support Community connects patients, families, friends and caregivers for knowledge, support and inspiration. This community is sponsored by the Ehlers-Danlos National Foundation, an Inspire trusted partner.