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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

    Hi - I have CFS since a brain injury in 2013 - I eventually got referred to a specialist CFS team after being tested for everything beforehand (it took about 2 years of discounting things)

    They seemed to be of the opinion that there are 2 types of CFS - one is just a mental problem  - overload / depression-type thing which can be treated with CBT etc.   and the other is a 'real' problem - that they don't understand and hadn't actually got any special treatment for.        What will a rheumatologist do?

Reply
  • over 3 years ago

    Hi - I have CFS since a brain injury in 2013 - I eventually got referred to a specialist CFS team after being tested for everything beforehand (it took about 2 years of discounting things)

    They seemed to be of the opinion that there are 2 types of CFS - one is just a mental problem  - overload / depression-type thing which can be treated with CBT etc.   and the other is a 'real' problem - that they don't understand and hadn't actually got any special treatment for.        What will a rheumatologist do?

Children
  • over 3 years ago in reply to Plastic

     

    Hi Plastic

    Thanks so much for your response. I am glad to hear that you were referred to a specialist service. Two years does sound like a long time to wait and I hope your experience with the service was positive.

    From my online research with specialised CFS / ME rheumatologist (or other CFS /ME clinics) services they can offer the following:

    • Clear definitive diagnosis. I would find it very beneficial to have a fibromyalgia diagnosis or have it ruled out.
    • Support to develop management plans balancing work, home life, social life and exercise goals.
    • Guides to self-help and support to have cognitive behavioural therapy to help people cope better with the condition.
    • Support for for graded activities.
    • Advice for clients, GPs and occupational health consultants about how to balance work, life and treatment schedules.
    • Advice on continuing with work or looking at reduced hours or alternative employment etc.

    If you are happy to share I would love to hear what kind of support was on offer from the specialist service and if you found it beneficial. Unfortunately, there is no specialist CFS / ME NHS facility in my NHS area and they are unwilling to consider referring me outwith the area. I have been advised to rest which I know I have to do but I am just desperate to get any additional support that might be available and am therefore, researching all potential options.