Getting diagnosed with ME

[tiredandautistic]

How do you go about this ? What sort of dr diagnoses, a neurologist?
Is it quicker to go private ?

I’m fed up of feeling so awful and I want it to be taken seriously fully prepared to maybe go private but I need a diagnosis to be taken seriously it seems

I was referred to a specialist in St Barts London. He was actually a professor of psychological medicine (which makes it sound like they’re saying it’s all in your head, but he really wasn’t - he did say though that my traumatic history had contributed to me developing it).

I was lucky that my GP knew to refer me there - nearby services aren’t so good and apparently some were using diagnostic criteria that said you couldn’t be diagnosed if you had a history of depression (which I very much do)?!

Before referral though you have to get all sorts of stuff ruled out, lots of blood tests like thyroid etc.

A few years later I was referred to a rheumatologist who diagnosed fibromyalgia

Incidentally I’m autistic too (assuming by your name you are) and things like ME and fibro are apparently more common for us.

Yes I am autistic

I’m so horrifically tired I thought it was my underactive thyroid worsening but it’s not as it’s all been checked. I just feel like I can’t function

My GP referred me to an NHS ME/CFS specialist at a nearby hospital who diagnosed me. I'd previously seen a neurologist and an occupational therapist and had blood tests to rule out other issues. Sadly any support or treatment since being diagnosed (7 years ago) has been minimal.

I was referred to an endocrinologist privately who specialised in ME CFS in the area but he needed everything else to be ruled out first (thyroid, cortisol etc). I was diagnosed by him and referred to local “services” but frankly they were useless. I was eventually diagnosed with POTS too via a private cardio neurologist (I think!) and treatment for POTS has massively improved my ME CFS symptoms.
Super good luck for your diagnosis journey xx

I’ve just had enough today. I wake up after broken sleep feeling exhausted
Despite loads of coffee by 1030 I was dizzy headache and eyes wanting to close and feels like the days over and I can’t get anything done 😞 same every day I’m tired every single bit of my whole body is exhausted

Coffee excess can cause those symptoms, and so can unbroken sleep.

Not saying you don't have CFS but perhaps try cutting out coffee for a few weeks first, particularly if you are drinking a lot of it.

How do you prepare for sleep at night?

Saw my GP with a list of symptoms, had full bloods done to exclude anything else and then referred to a CFS clinic. I’m aware though I’ve been lucky. Some people struggle massively to be taken seriously, it’s awful.

I try to have a bath and I don’t watch tv/use phone for 2.5 hours before bed I dont read either
I have a warm drink etc

I should be able to sleep but I keep waking plus I feel very achy and then I have odd dreams so I don’t sleep well

Coffee has just become a way to stay awake but I’ve noticed I was getting tired mid aft and then it was earlier at lunchtime now it’s earlier. I saw my gp and had bloods done it was all fine. I just feel like I’m exhausted

I tried doing some short walks for fresh air but it wipes me out for days afterwards. I thought it would help. If I give in and go for w nap in the day i would sleep for hours if had the chance but at night I don’t sleep well

I have ME. And coffee makes things worse. Unfortunately it is diagnosed by ruling out rather than a test for it. Look up the spoon theory and there is a guy on Facebook who is good. I will find a link. My council used to do a referral for the local leisure centre to do graduated exercise

I was referred to a rheumatologist when GP suspected I had fibromyalgia, who confirmed diagnosis. I really struggle with sleep - both falling asleep in the first place, and not sleeping deeply enough to ever feel "refreshed" - which they impacts the pain, and the pain makes the sleep worse! It's a vicious cycle, GP prescribed amitryptaline to take at night, and it greatly helped.

I've been diagnosed with fibro/chronic fatigue, and was also given a POTs diagnosis but have yet to do that tests.

Bad sleep is also a sign of fibro, as you don't achieve deep sleep.

For me chronic fatigue does not mean I feel tired all the time but it does affect people differently. I have to manage my energy and manage what I do. For example, I need a couple of days off after doing a lot. At other times it actually feels as though someone has pulled out my plug and I physically am incapable of getting up from a chair. I remember being late for an appointment once and just could not get my legs to go faster.

You might benefit from sleep supervision to see if there is something else contributing to your feeling unrefreshed. What happens is, once you get a fibro or chronic fatigue diagnosis, you are just kind of dumped as there's not much that can be done. At least, that's what happened to me.

@Toastandtea1 I'd be interested to know what treatment you have for POTS because I wasn't given any treatment, just told to wear compression socks and add more salt to my food.

Being diagnosed is all very well but as previous posters have said there is very little help afterwards. No one really has any answers. I’ve been seen by the ‘specialist’ at the hospital and then referred to my local me/cfs clinic. Really more effort than it was worth. Lots of questionnaires, hours of talk, no real difference. Mainly, you just have to become your own researcher. Check out Facebook groups to see what has helped others and don’t FFS get sucked into any CBT/GET nonsense.

My dd has it after a painfully long NHS pathway. No CFS clinics here. We did see a private Dr who was recommended as a specialist but I had zero faith in him.
Start keeping a diary of activity - physical or mental strains- so you can see what your limits seem to be, and it will be very useful when you see a Dr and if you apply for financial help like PIP.

Try googling your local NHS Trust and chronic fatigue services. Ours has the criteria for referral online. My gp/consultants are convinced I have it however because I have other issues not resolved I can't be assessed presently. Even if you don't get follow up care if you have a diagnosis you could seek out the support privately you need (if you have a diagnosis it might be slightly easier to access personal independence payments if you are severe enough which can fund care).

butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

This helped my understanding and a way to explain to others.

I had it in my teens and 20s after a virus. This was mid 90s. GP (family dr) did a battery of tests and diagnosed exclusion and it was confirmed by another GP some time after. This particular GP told me about a private clinic run by WestCare, a charity in Bristol and Bath area. Didn't get any help on NHS aside from that and being given some tablets for the muscular issues and restless legs going with it. I did join a postal support group called Assoc of Young People with ME (AYME) which was helpful.
It was difficult to push for much help, i was 14 when it started, didn't have much money and had one parent ruled the roost , was abusive and not supportive at all, branding me as a fake.

Diagnosed by exclusion I mean

I’d 100% recommend seeing a nutritionist.

I was recommended to cut out diary, have one cup of tea a day, switch to pink salt etc etc. I’ve lost the report now but I still stick to the generals.

A few days eating normally and I’m back to having to sit on the kitchen floor having to wait for the kettle to boil.

What area do you live in? Neurologists often diagnose people with functional neurological disorder if tests are clear (aka psychological but sold to you as the brain and body not communicating). There are ME clinics but they vary. Try and get as much stuff ruled out as possible before an ME diagnosis