Hi all, I was wondering whose care you're all under medically as since my diagnosis I've sort of been losing doctors as each one decides there's nothing to be done. I currently have a Gastroenterologist on yearly review for stomach symptoms, a hand therapist for my fingers which are all over the place and a physio.
I had a cardiologist for my POTs, but now I'm on meds for it I've been discharged. I had a rheumatologist who just sent me a letter saying as I have EDS there's nothing they can do, and discharged me. I had a geneticist, but they said they dealt only with diagnosis, not care. I had an ortho, but they said with EDS they can't help. I also had one appointment with pain management, and have been sent off into the world with their advice.
My issue is that I don't have any supports or splints, just crutches. My GP keeps telling me to ask my physio, but physio have said no no no, just the exercise to strengthen. When I tried to push for them for days when I need to get to work but am having a bad flare up, she said 'work will just have to understand you need time off' which is not a practical solution and won't help me maintain my work, especially when I flare so often, especially in the current heat. When I told her this, she suggested I see a counsellor to help me accept my reality.
While I understand that that can be useful for some, I feel like that's not what I'm asking for at all. Equally, pain management wanted me to try a cognitive behavioural pain management course, but I don't want to spent four weeks on an inpatient program just to discuss how pain is annoying and I should man up.
I was just wondering if I should be getting more support than I am, medically. So I wanted to know what everyone else is doing?