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Living With Disabilities/EDS- my symptoms and what type of doctor to see


Hi. My name is Sara. I am 21 years old and have always been sik to my stomach, having body aches and pains and even had to go to the chiropractor around ages 12-15 for slight scoliosis in my neck and for stiffness and pain in my neck and back. My knees and elbows bend back farther than I think they should, and I can turn my arm around, hand flat on a table, a full 360 degrees. My thumbs can pop out of joint on their own or I can do it willingly and my hips pop out quite frequently but especially during sex to the point that we need to stop so that I can straighten my leg and it eventually stops hurting. There is a long history or autoimmune disease in my family one being rhumitoid arthritis but I test negative and my mom has many endocrine disorders that I don't seem to have.
On a normal day I get by doing normal activities and work just fine but much of the time I am just tired and physically exhausted. Normally if I tell someone that they just shrug it off by saying that I should have more energy for my age but don't help me any.
What I am asking of you is if you think this is worth looking in to for myself and I think it answers some of my mother and grandmothers health issues too. And what kind of doctor do I go to? Also how do I present it to them?
Thank you for your time.

Sounds like it could be a connective tissue disorder of some sort.  Before you seek a diagnosis for a genetic condition, consider the risks and benefits of getting the information confirmed.  The benefits will be a greater understanding of what is going on and possibly some overall better management of the symptoms.  The risk is that once it is on your medical records, you will have that diagnosis impact your costs for insurance - medical, life and disability. You may be denied coverage for pre-existing conditions or be unable to get affordable life/disability policies.  

If you decide to seek diagnosis, you will want to work with a rheumatologist and a geneticist.  You can talk to your primary care physician and get a referral.

Living With Disabilities

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Barbara Uggen-Davis


I can answer questions related to coping with Ehlers Danlos Syndrome including: bracing, symptoms, alternative therapies, support groups, etc. If your question does not relate to Ehlers-Danlos Syndrome, I am not able to answer you.


Although I am not a doctor, I have extensive experience in dealing with EDS from personal experience and from being actively involved in EDS Support and Education groups since 1994.

EDS Today, Canadian Ehlers-Danlos Association, UK EDS Support Group.

I was both a writer and editor for EDS Today for 10 years.

I have a BA in Business Administration/Accounting and an MBA in Business Management/Information Systems. I work in the medical field with 12 years experience in over-the-counter bracing and support products. In 2007, I joined a medical technology company.

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