Ehlers-Danlos, could i have it ?

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!!

Answer 1

The treatments for EDS are primarily symptomatic, so seeing the rheumatologist a month sooner is not likely to significantly change the course of treatment.  In the meantime, guard against skin damage, and follow up at your next appointment.  Discuss this as a possible alternative diagnosis with the rheumatologist at that time.  SIgnificant issues which would then be considered would be to evaluate whether the symptomology and physical findings are consistent with EDS.

Answer 2

Ehlers-Danlos is a rare genetic problem.  Hyper-mobile joints are just one symptom.  A friend of mine that has similar symptoms has to see a chiropractor at least once a month to help with pain in every joint.  She is so loose that her ligaments do not seem to keep her joints in the proper alignment.  Although this is not the answer for everyone it would be worth looking into.

I agree get another GP.   You need someone that will work with you.

Answer 3

First of all, get a new GP

Answer 4

I don't know about your syndrome, but I suggest strongly you find another GP!!!  The only way to control your health is to be able to TALK to your doctor....DON'T let them shuffle you in and out and home with a prescription.  Gain as much knowledge as you can about your symptoms and your problems.  YOU can really help your doctors by keeping notes about your symptoms and day to day feelings.  If you wait till you get to his office to talk things over, you can forget a lot!  A daily diary really helps with this and a lot of other things!  Write your dreams down,too, as soon as you wake up....You'll be surprised what you learn about yourself!  Good Luck!

Answer 5

try and see some one else in the practise, i never see my proper GP.

hopefully then you can explain your symptoms and get a good diagnosis...... i think if you are worried you have ehlers-danlos you should tell them as it is not common they may dissmiss it.

good luck