Published on 12, July, 2020
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.
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?
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:
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.
To be honest, they were pretty useless - like they'd never had a 'real' one before - there was no plan - just a 6-monthly review - like they expected it to magically go away.. I'm guessing they just forced everyone else down the CBT route.
I'm really impressed with Beer Theory
I was able to get work to agree to give me flexible timings - I have ulcerative colitis so that's what gets me up in the morning - say 5am - so after sorting my body out I could be at work at 6am which set the meter running.
I did my 7.5 hours straight through and was out at 13:30.
This had the bonus effect of limiting my stress of dealing with the a-holes from 8am onwards - luckily, they were so lazy that 8am = 8:30 onwards then extended tea break 10am until 11am and long lunch from 1230 to 2-ish. I barely saw them.
I overdid things a few times - got into my car and drove home (10 mins) but was so fatigued I couldn't get out of the car - had to wait 20 mins before I could roll out and crawl to the front door.
That's an excellent analogy. I feel like printing it out to show to people when I am asked to do additional work/social/anything!
Thanks so much for all your help Plastic. It is so much appreciated.
To date I have been hopeless with spoon theory and always do too much on better days because I get so excited about feeling even slightly better and want to do my endless list of things and then I crash out for days on end. I will continue to work on it.