What do you do if you think you have chronic fatigue syndrome ?

[NotEnoughh]

Does the gp diagnose? If not who does ?
Are there specific tests ? I need someone to help me as I can’t function due to being so, so exhausted. I thought it was a prolonged burnout (I have autism) but it’s feeling more like it’s physical now ?
I can’t manage anything past 10 am and I even wake up tired . I don’t know what to do??
Had loads of bloods etc done already

Your GP needs to do certain blood tests first and if they can't find anything then they need to refer you to a Rheumatologist. They are the ones who diagnose auto immune conditions amongst other things.

We have a specific clinic here that diagnose. GPs have to rule everything else out first though then after so many months they can refer onto the ME/CFS clinic.

They’ve done loads my thyroid is checked regularly as I’m in thyroxine but it’s been fine each time . I’m anaemic but on iron and also had low urea nitrogen (not sure the significance of that) ill make another appt and see if they can help or refer me on as I can’t function

I had, what I believe to be, Autistic burnout in Aug 2019 from running my own business. I had a complete mental and physical breakdown. My GP finally diagnosed ME/CFS and I was referred to the ME/CFS clinic. They spoke to me online only, a few times, to provide help with managing my condition. I would say I have recovered about 50% of my previous energy levels. I was like you for a long time could only get up, have a shower and then wiped out for the rest of the day. It took a long time to come to terms with what had happened to my mind and body. I was depressed for 3 years but that has now lifted. I have a small job working 6 hours a week. That's all I can manage now. You just get used to things being different, with time.

Rheumatologist consultant

Often 250 gbp privately

Or sometimes a 6 month nhs wait

GP referred me to the chronic fatigue team to confirm diagnosis of ME/CFS and rheumatology to confirm the Fibro.

Absolutely nothing after diagnosis. No help, support or advice. 8 years on I’m worse than ever.

Go refers you to a clinic.
The nearest clinic to me is about 20 miles and a train ride away and they're so busy they have no appointments for at least 3 months.

Good luck.

My dd has been in burnout from ASD for 5 months. It can take a long time. I’m doubtful you have chronic fatigue.

Also ask for a social services assessment.

I've got bad news.

ME-CFS is a diagnosis of exclusion, there are no tests yet that can positively identify or explain it. There's no cure or specific treatment.

All the things that could directly explain your symptoms have to be ruled out first, then you go to see a specialist (if they can find one - it's not a popular specialism) who issues the diagnosis.

Like over half of sufferers, my symptoms were all ascribed to depression for ten years and the diagnostic process was initiated by a psychiatrist.

Treatment is 'management', which means learning to live with a life-limiting disease. A few people do get spontaneous remission: this is more likely if you're young and have a full-time support system.

I'm sorry you feel crap and that I can't offer an optimistic outlook.

Access to work grant
Available to people with cfs

I always thought it was diagnosed if they couldn't find anything else wrong and there are no tests for it. That's why a lot of people think it's not an actual condition.

Also those with cfs - get a blue badge to help
And can maybe try for pip
Or / and ESa

I had flu and then was diagnosed with post viral fatigue and was tested for anything the gp could think of. As PP has stated there are no tests for it. After I hadn't improved for 6 months I then was given the CFS diagnosis. I had support from a CFS clinic with CBT, symptom management, pacing and counselling.

I can say that 10 years on,although it still affects me hugely, I manage a demanding job albeit part time, play sport and run the family home so I can offer more of an optimistic outlook than some posters. I've obviously been fortunate.

How long have you been ill @NotEnoughh ?

It’s nearly 2 years now I’m just exhausted, I was sure it was burnout for the first year then as it’s gone on I feel like it’s my body as well ?

I feel like tasks that were manageable 2-3 years ago are now needing 300% more effort and they exhaust me and not even anything taxing eg doing some paperwork or a phone call ?

Autism Prof who posts on here had a son in burnout for 3 or 4 years.How old are you?

I had this for over a decade and reversed it through managing my blood sugar levels perfectly. I’m fine now although any deviation from my eating regime into some junk food will cause me a blood sugar spike that will make me sleep like I’m drugged. This has been backed up by a blood sugar monitor.

I was diagnosed with CFS at 26. It was the wrong diagnosis but they didn't know what was wrong with me at the time, and fairly dismissive. Three decades later, I have arterial thoracic outlet syndrome, Ehlers Danlos syndrome, a rare form of brittle bone disease, neurofibromatosis (high correlation to autism), polycystic ovaries, underactive thyroid and anaemia. If I had been diagnosed correctly in my youth, I would have had better care, less damage (hands and feet clawed up, and lots of neurofibromas), less surgery and less patronising from inexperienced doctors who do not have a clue about rare conditions.

My advice to you is to arrange all blood tests to exclude other possible causes. If the GP refuses, go private if you can afford to.

Burnout and chronic stress absolutely can have physical effects. Our bodies are not designed to cope with long-lasting high levels of cortisol - it can lead to (or contribute to) high blood pressure, immunity suppression, diabetes, chronic fatigue, headaches, digestion problems, all sorts.

I was diagnosed with ME/CFS myself, I know how it can feel. And it is only a diganosis of exclusion.

My best bit of advice is eat a healthy balanced diet so you don't pile on a load of weight from not exercising. Weightgain will only add further to your health problems and medical professional will pinpoint your weight as the cause of your fatigue!

Cold water therapy is something that gets my blood flowing and the only thing I've found to improve my symptoms temporarily.

Do you know TSH level? I am on thyroxine and TSH needs to be close to 1.0 to feel good. A gluten free diet can help with hypothyroidism too, particularly if auto immune/Hashimoto's - I am actually coeliac too. Any other autoimmune illness in the family?

I would look at burnout recovery and trauma healing, it can't hurt to treat as burnout or trauma (and there probably is an element of that if if you have autism and have suffered previous burn outs)

There is a very strong relationship between ehlers-danlos syndrome and autism so I would definitely look into that, as well as the related conditions like fibromyalgia and POTS.

CFS as others have said is a diagnosis of exclusion so takes a long time to diagnose and they want to rule out everything else first, especially because a lot of the differential diagnosis's have more treatment and management options.

Good luck I hope you get the right diagnosis and treatment plan soon, whether that does end up being CFS or not.

Gp wasn’t very helpful I think I’ll have to look into going private. Today is yet another day where I’ve woken up exhausted and today im dizzy as well . I slept for 9 hours I shouldn’t feel this bad

If it is CFS/ME then private doctors can't offer you anything either as there is no proven cure. There are plenty of snake oil pushers. I wouldn't waste your money.

Go to the ME Association website and take a look at all the useful resources. You could even call them and ask for advice.