Yesterday was the long awaited appointment for the possibility of a diagnosis related to my daughter’s joint hyper mobility and the other symptoms that “seem” to come along with it. It took us 8 hours to drive there because of bad weather. By the time we settled in at the hotel, she was so exhausted and sore from the drive that I had to fill her with Advil and Tylenol. Plus she had some sort of virus and has a lymph node the size of a golf ball on the right side of her neck.
I thought for sure the appointment would get us somewhere – at least I was hoping it would. I know I’m not crazy and I’m not making all of this up. She is hyper mobile – and according to the NCBI diagnosis criteria, it looks like she has EDS type III. Reading an expert’s content for physicians, Typical features of the Ehlers-Danlos Syndrome Hypermobile type (EDS – III), the condition is also most likely.
I have to admit I had a certain amount of doubt regarding the appointment as I know EDS is not well understood among doctors – unfortunately, I was right.
We were told this: 1) She doesn’t have EDS (for sure) because she has no heart defect and her skin is not stretchy on her chest area; 2) She needs to go back to school; 3) She doesn’t need physiotherapy; 4) Some people are just like that (about pain); 5) It’s a very good thing – she can go right ahead and exercise without risk of hurting her joints as there is no danger, full blown exercise but she won’t be able to run – ever; 6) She needs to do yoga.
Are you kidding me? No, more like “Are you f***g kidding me!?”
1) People with EDS type III or JHS don’t necessarily (probably rarely) have heart defects nor do they necessarily have stretchy skin;
2) She is brilliant and is not in school because she can’t walk or sit for any f***g amount of time (is that clear???). Plus she can’t hold a pencil anymore because her fingers hurt too much.
3) Physiotherapy is changing her life – it is giving her confidence and helping her reinforce her back muscles and ligaments which she doesn’t know how to handle on her own (Is this is bad for her?);
4) Pain? Except for people coming out of the OR or with severe orthopedic injury, I have never seen anyone with that kind of chronic persistent pain. What are you saying???
5) She can exercise without hurting her joints? She can’t move or do anything without feeling excruciating pain afterwards.
6) We’ve tried yoga when she was hospitalized – that’s way back when she was able to walk yet she couldn’t put up with an adapted yoga session.
This doctor is suppose to send “recommendations” to our family doctor.
So then what? Is this fibromyalgia (she scores 18/18) with hyper mobility (I think it’s rather rare and most of these patients are thought to be EDS patients)?
So we are back to square one.