Help me navigate the NHS? Hi buddies, I'm going to share a bit of a grim story so skip if you don't have the spoons. Desperately trying to get some simple help for my symptoms and haven't even been able to have a conversation with a secondary/tertiary practitioner in a year... I had what I'm gathering is a pretty typical hEDS diagnosis story, diagnosed with chronic fatigue, anxiety and an underactive thyroid when i was a teenager and thought I just had to cope, 6 years ago my mobility started declining with knee and hip pain/stiffness that after a rigmarole of tests i was told I had fibromyalgia and sent back to psych. Then a bit over a year ago things went downhill really fast, amongst other things I had long episodes of uncontrollable violent muscle spasms that looked like fits, got very light sensitive, I vomit frequently and have (so far) unexplained frequent tachycardia, high blood pressure and afib episodes. I had to stop working. I understand that there are many medicines etc that could help with my guts and my heart symptoms and my GP won't give me anything because they (rigthfully) are concerned about all the medicines I already take and feel anything new should be introduced by a consultant. At this point my sister (who also has hEDS) said to me she was sure my symptoms looked like hEDS even though they were so different from hers, I brought this to my NHS rheumatologist and they told me "we don't call hypermobility EDS anymore" and referred me for more psych. So I paid to see an EDS specialist rheumatologist who referred me to a geneticist who diagnosed me with hEDS in March last year. Since I don't have a job I can't keep seeing docs privately so after being diagnosed I went back to my NHS GP and they made referrals to gastro, uro, cardio. Those referrals have finally all come through in the last couple of months and every single one of them said that they don't treat people with EDS and referred me onto the hypermobility unit. The hypermobility unit refused to accept any of these referrals saying that they only acknowledge diagnosis and referrals from NHS rheumatologists. I've asked my GP to refer me to rheumatology again, which seems insane since I'm not even asking for support with joint issues, but I feel like im missing something - I know things are hard but this is impossible? I'd really appreciate any word of support and advice about how and who I should be talking to.

Posted by Bobby at 2023-01-21 21:33:33 UTC