Diagnosis Advice/ Specialists?

[roseissick]

Hi all. My autonomic neuro team (POTS) suggested I have hEDS and referred me to Rheumatology. The NHS Rheumatologist said yep probably...but proceeded to write to me and my GP saying I have fibromyalgia (which can be caused by EDS right?). Just feel so disappointed and tired of advocating for myself for so many years! I

Has anyone been able to get their GP to refer them to a clinic/doc who can help diagnose EDS. Or would you recommend seeing a specialist in London instead- if so suggestions welcome!

Thanks!

[cyberbarn]

Have you looked at the RCGP EDS toolkit? Your GP can use it do diagnose EDS.

rcgp.org.uk/clinical-and-re...

EDS is often misdiagnosed as fibromyalgia. But Fibro has a very specific criteria. Despite this, many doctors just diagnose fibro in any women that has pain. Don't put up with this if you don't match the criteria!

nhs.uk/conditions/fibromyal...

A rheumatologist tried to dismiss me with fibro, but I pointed out I don't have difficulty sleeping, I don't have problems with mental processes, or headaches, or extreme tiredness. I did all this in a formal complaint against him. He no longer works for our local NHS trust!

So stick to your guns and discuss the EDS diagnosis with your GP, and don't accept the diagnosis of fibro if y ou don't think you have it.

[roseissick in reply to cyberbarn]

yes it's so difficult because I do have headaches and fatigue but of course that can be EDS related! It's the fact I have autonomic issues, subluxations and allergy issues too which are all connected to EDS! Thanks for the advice and sorry you were fobbed off too!

[Trickysite]

Dr Alan Hakim isthe best. He only works privately. London ba sed. Does zoom consultations.

[roseissick in reply to Trickysite]

thank you shall look into him!

[Winter_night in reply to roseissick]

hi   roseissick , I hope you don’t mind me jumping in here but I came across your post having searched for info on a London based EDS specialist. Did you see anyone in the end and were they any good? I have fibro & erythromelalgia & POTS. The autonomics team I saw (probably same as yours) noted hypermobility and mentioned EDS. I find my NHS rheumatologist is really difficult and dismissive. I’d rather see someone empathetic who I can take questions to. I know it I broach it with the rheum he’ll shoot me down 🙄 I’m happy to pay if it means I’ll get to have a proper conversation and not be barked at. Thanks in advance….