Hypermobility type problems

General
, ,
1

So I’m a little bit new here. A bit about me, my name is Magnus. My doctor’s are currently debating EDS-HT or JHS because my skin doesn’t stretch (but has the velvety softness) and we have no official family history to look at. I’m 19 years old. I’ve had symptoms since I was about 9.

In about February I was also diagnosed with fibromyalgia, and at the recommendation of my rheumatologist and pain specialist I went to physical therapy for about 6 months. I worked very hard and I saw little improvement.

Now I’m really at the end of my rope. I often feel extremely weak and fatigued, which combines with my joint pain and makes it very difficult to walk or do anything. I’ve seen several specialists (including a man who I cannot name because we are only supposed to leave positive reviews for doctors) who is a hypermobility specialist who just said that I should do more physical therapy.

I’m not really sure what to do now. Doctors aren’t helping me. Physical therapy exercises have done little to improve my condition, and there are no other treatment options for me. I’m at university and I struggle to attend classes because I have such trouble walking even with knee sleeves and/or a cane.

I was really hoping maybe some of you would have some suggestions for me.

2

Hi - I’m new to this site but certainly not new to EDS

If you can hardly walk to class I would see an orthopedic surgeon, 1st to figure out if the main problem is in you hips, or your knees and then to consider joint replacement .

I have had to replace both my hip joints and both my knee joints. I felt like I had polio to which I would jokingly refer to this condition as.

Luckily I live in Los Angeles where after massive research found the world renowned surgeon, Dr Andrew Yun.. unlike most doctors , he does not cut through any muscles,ligaments, or tendons- just moves them out of the way - and he uses the best components, ball-sockets-etc.

So you recover faster and hurt less, although knee replacements aren’t for the uncommitted but once you are healed you will have almost perfect movement and much more strength

I hope I helped you. Don’t be a prisoner to EDS Suzanne