Suggest Treatment For Fibromyalgia

Posted on Thu, 9 Nov 2017

Question: What should someone do if they suspect they could have ehlers danlos? For as long as I can remember i have had joint and muscle pain. They told me it was "growing pains." Everyone thought I played sports because I was tall and thin, but I was never any good and I got hurt all the time. I never really thought much about it until recently. I was diagnosed with POTS and had to get knee surgery for an osteochondral defect. They said I had a lot of wear on my tibia. So now I have to get a bone graft and a tibial osteotomy. My other knee is messed up too. They said I had patellar instability and subluxation. I also have problems with the discs in my neck and back and I have pain a lot. When I was at physical therapy the therapist asked me if I was ever checked for ehlers danlos because she noticed my movements and complaints. After researching there are a lot of things I found that were common in ED that I have. I have abdominal hernias, preterm labor, autonomic dysfunction/ POTS and as a child I would bruise very easily (in fact my mom said they had questioned her about abuse because of all my bruises). I was diagnosed with fibromyalgia but my doctors all say I dont fit the typical patient profile. My mom has MVP and bad scoliosis and syncope issues. From my understanding this could be part of it. Now my daughter has a few things I worry about. I just feel that I should get checked but not really sure where to start. What do you think?

Answered by Dr. Diptanshu Das (2 hours later)

Brief Answer:
Genetic disease

Detailed Answer:
Thanks for asking on HealthcareMagic.

I have gone carefully through your query and understand your concerns. Ehlers–Danlos syndromes (EDS) are a group of genetic connective tissue disorders. The basic structure of our body is built on connective tissues. That includes the skin, and joint cartilages. Needless to say, the presentations include loose joints, joint instability, subluxation, stretchy skin, vertebral problems including neck discs and scoliosis, hernias, weak blood vessels, MVP etc. These can be associated with pain and fibromyalgia (means algia=pain of fibrous and myo=muscle tissue). Since this is genetic, it is possible that your daughter has it. Get her evaluated and if the presentations match, certain supportive measures will make her life easy.

This is not a curable condition and other than supportive management nothing can be done about it.

Let me know if I could help further.

Regards

Above answer was peer-reviewed by : Dr. Kampana

Follow up: Dr. Diptanshu Das (20 hours later)

So how do I go about getting tested for it? For both myself and her? I dont expect much from it.
i just have had so many issues all my life and it would be nice to know a cause.

Answered by Dr. Diptanshu Das (5 hours later)

Brief Answer:
Clinical evaluation needed

Detailed Answer:
No, the diagnosis is primarily clinical. The mentioned presentations are already enough to make a diagnosis. The same should be done for daughter. Genetic tests on a sample of your or your daughter's blood can confirm the diagnosis in some cases and help rule out other problems.

Regards

Note: For detailed guidance on genetic screening consult a genetics specialist

Above answer was peer-reviewed by : Dr. Kampana