Ehlers-Danlos, could this be my problem??? Please Help?

Question

Hello, I am suffering from very stiff and painful joints and it seems to be all my joints, ie my shoulders, hands, wrists, fingers, neck, elbows hips, knees, ankles, toes. Its not just my joints though. My back hurts all the time especially when i breath. I went and saw a rhumatologist back in march and they said i had hypermobile joint syndrome.

The pain has definitely got a lot worse since march. I also bruise very very easy, ie i only have to scratch myself and i get a bruise appear.

I definitely think there is something more to it than just hypermobile joints and wondered if if could be Ehlers-Danlos.

I have a follow up appointment with the rhumatologist in October but i just wondered if anyone thinks i should go back to my doctors before then. I really hurt al the time and I'm fed up with it now. Some please help me. THANK YOU!!

Also when i go to my gp, what should i say. She is very hard to talk to and approach, ie she makes me feel like im making it up.

Answer 1

Yes, Ehlers-Danlos Syndrome could be a possibility but because of the stiffness you are noticing fibromyalgia could also be a possibility (another example only).

I think that you should definitely get in to the rheumatologist before Oct.  Call the office to find out if there's a chance you can get in before Oct because of how much you are hurting.

As for your GP if you have kept a log of your pain as to how much it hurts during the day and other symptoms you may have noticed take it with you and show it to her.  Let her know that you are hurting a lot and you brought a log of the pain that you would like to show her.

If that still doesn't help I would recommend finding another doctor to help you take care of all general issues.