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melmel12

156d

hi all, I've struggled all my life with pain, joint problems and many othet symptoms. i was told I have hypermobility and also fibromyalgia. however, recently i asked for further testing as I feel my chronic issues could indicate something else. a doctor agreed with me and said it would be worth testing for EDS reffered me to rheumatology but they denied my refferal and said that they dont have funding to test or assess for any EDS types and sent me links to some websites for advice. i feel like i am getting nowhere with this after years and years and years of trying to get some support with this! does anyone have any advice? i've spoken to a few different gps and doctors about this and most of them just seem to brush it off and say it is fibromyalgia, never listen to me or help me with anything that I request! just feel like i am at a total loss.... any advice?

    • Javen

      50d

      Well, for now, if they can't do genetic testing, they can see if you fit the hypermobile eds criteria. The criteria should be easy to run through in 15 or so minutes. It's not complicated, and it's available to see online. If you fit into that criteria, you could be diagnosed with something for now and get genetic testing later on. That's what the doctor I saw said to me. I fit into the criteria, and he said he would take a while to read some more and call me back about it. You'll have to really really push for it if they don't listen and maybe prepare where you fit into the criteria before seeing your doctor. I hope all goes well for you.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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"Ehlers-Danlos society's webpage has a great resource for finding EDS aware doctors in your area. You could also try seeing a geneticist or a chronic pain doctor who specializes in these conditions. It's important not to stop until someone listens to you. Also, consider looking up the diagnostic sheet for EDS and filling it out yourself to bring in to your appointments."

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