Is there a benefit to a formal diagnosis?

[Stalkermagnet]

I have been dealing with hypermobility issues since I was 8 years old. I have had countless knee dislocations and have my first knee surgery in November (TTT, MPFL reconstruction, LR, microfracture). I also have a bad pelvis as a result of hypermobility + 3 pregnancies and am currently dealing with generalized pelvic paint that wakes me up 5-8 times per night and will not go away unless I physically get up and walk around, it is miserable. I have seen a rheumatologist who was not concerned about RA, gave me some NSAIDs and sent me on my way. I have seen a pelvic pain specialist who didn't have much of an answer for me. I've resigned to the fact that my other knee will need to be done and an just living with the horrific pelvic pain. I think that if I really seek a diagnosis, some type of hypermobility disorder would be diagnosed (EDS or otherwise), but is there an advantage to being diagnosed? Is there a disadvantage- ie" not being accepted into another insurance plan if I were to need to switch?

[Natalie.D]

Hi Stalkermagnet

In my own personal experience I haven't found any benefit of having a proper diagnosis of hypermobility, it hasn't changed any outcomes for me and I'm still having knee problems, I also have very painful hips when lying in bed, I can lie on one side for about 10 minutes then I have to turn over, I seem to be turning over and over all night and I can't sleep on my back as I snore too badly, lol, my husband always nudges me to turn over! I've been to see the doc re my hip pain and all I got was "its probably OA since you have it so badly in your knees"! Yeah, great help! Not sure about the insurance angle, you could maybe make some anonymous calls to an insurance company and ask a few questions just to test the gound.

Natalie.

[Silkncardcrafts]

Hi there,

I do think there is benefit in getting a definite diagnosis.

There is a number of tests they can do to work if you are suffering from hypermobility syndrome.

I was diagnosed in my early 20's. My doctors and physios have been able to come up with a suitable exercise program to help minimise the pain and increase my strengthening.

It has made such a difference to me. I regularly go to the gym, go to a hydro pool and do clinical pilates. I have found clinical pilates to be of particular benefit.

The key with hypermobility is to keep active. Eating well and keeping stress under check are also really important.

Not sure where you are based, but seeing a really good sports physician may help. Whereabouts are you based ?

[Stalkermagnet]

I live in Arizona in the United States. I think that getting a diagnosis may make doctor more willing to prescribe something that will help me or take me more seriously, but I really don't want to run into insurance issues with it. I am sure that my charts mention hypermobility, but I've never has specific tests for EDS or hypermobility syndrome

[Silkncardcrafts]

Hi there,

Such tests as checking your flexibility can help determine if you are hypermobile. So, you don't necessarily need expensive tests to determine you are hypermobile.

I would strongly suggest going to see a sports physician/doctor or physiatrist as they are often called in the U.S. They have a much better idea of knowing how to manage this condition than a GP. I stopped seeing a GP years ago as they would often recommend inappropriate treatments.

Hope this helps.