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ASD and CFS /ME - private rheumatologist

Exhausted!
over 3 years ago

Hi Everyone,

 

I am new to the forum and really appreciating everyone’s advice and suggestions, as I read through the information here.

I am looking for some advice if anyone can help me. I was diagnosed with ASD the end of last year. After a horrible time seeking a diagnosis through NHS, I ended up paying for a private diagnosis, following several years of on and off severe autistic burnout and exhaustion. It was expensive but was money well spent as I had suspicions for a long time.

I was diagnosed with Chronic Fatigue Syndrome / ME around the same time and query fibromyalgia. My GP referred me to rheumatology however, they (rheumatology) did not take the referral. I have considered seeing a rheumatologist privately however, I am struggling to find one who has experience of ASD. A lot of my symptoms eg pain, exhaustion, lack of function, brain fog, swollen glands I feel could be attributed to both ASD burnout and CFS/ME.

If anyone has any experience of seeing a private rheumatologist or CFS /ME service where they had experience of ASD, I would be really grateful to hear your experiences of the service and treatment options etc.

I am based in Scotland however, due to COVID 19 outbreak most services seem to offer an online option so any information about a UK service would be beneficial.

 

Thank you in advance.

Parents
  • over 3 years ago

    They don't offer much for ME/CFS. 

    I've been diagnosed with ME/CFS since the early 2000s. They pretty much just leave it; there is 'nothing they can do.' I've had way too much CBT for both apparently helping with severe depression and ME; CBT didn't work too well for me. I suppose maybe I learnt one or two things from it that I use today, but mostly it didn't work for mental stuff or coping with M.E. Although I'm fairly certain (it could be paranoia) that my doctors see my ME as a mental problem and maybe now see it as autism burn out? except it's been a long burnout that I never fully recovered from?

    but on top of that, because of my heart condition, it's hard to know what's what, I guess. So maybe that has made it harder for me to get any 'help', but then again, I'm not sure what help can be offered, if any, so I just live with it. 

    Many doctors don't seem to take ME/CFS serious until it eventually gets diagnosed as Fibro which seems fairly common, so either people are being misdiagnosed or ME after a long time can lead to Fibro? I don't know. 

    I had physio in the past for M.E treatments too. I've been told all sorts of theories as to why I am this way from, 'maybe it's your heart condition has made you more susceptible to being exhausted all the time'  to 'I think you had the flu once, got used to the time off school and then didn't want to go back and got used to the attention.' 

    Sometimes when I go for regular checkups with the GP they ask me if I'm doing anything with my life yet, 'do you have a job?' which seems very dismissive of the ME. Not to mention the Depression that is pretty severe and the autism and the fact I live in supported accommodation. The ME label seems to have stained me with the brush of, 'let's not take anything he says too seriously.' 

    It's odd, though because the same doctors who ask those questions also tell driving licence people I'm not medically able to drive. So it seems they're confused themselves with what to think and do with ME/CFS patients.  


Reply
  • over 3 years ago

    They don't offer much for ME/CFS. 

    I've been diagnosed with ME/CFS since the early 2000s. They pretty much just leave it; there is 'nothing they can do.' I've had way too much CBT for both apparently helping with severe depression and ME; CBT didn't work too well for me. I suppose maybe I learnt one or two things from it that I use today, but mostly it didn't work for mental stuff or coping with M.E. Although I'm fairly certain (it could be paranoia) that my doctors see my ME as a mental problem and maybe now see it as autism burn out? except it's been a long burnout that I never fully recovered from?

    but on top of that, because of my heart condition, it's hard to know what's what, I guess. So maybe that has made it harder for me to get any 'help', but then again, I'm not sure what help can be offered, if any, so I just live with it. 

    Many doctors don't seem to take ME/CFS serious until it eventually gets diagnosed as Fibro which seems fairly common, so either people are being misdiagnosed or ME after a long time can lead to Fibro? I don't know. 

    I had physio in the past for M.E treatments too. I've been told all sorts of theories as to why I am this way from, 'maybe it's your heart condition has made you more susceptible to being exhausted all the time'  to 'I think you had the flu once, got used to the time off school and then didn't want to go back and got used to the attention.' 

    Sometimes when I go for regular checkups with the GP they ask me if I'm doing anything with my life yet, 'do you have a job?' which seems very dismissive of the ME. Not to mention the Depression that is pretty severe and the autism and the fact I live in supported accommodation. The ME label seems to have stained me with the brush of, 'let's not take anything he says too seriously.' 

    It's odd, though because the same doctors who ask those questions also tell driving licence people I'm not medically able to drive. So it seems they're confused themselves with what to think and do with ME/CFS patients.  


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