Anyone with ME/CFS?

[MsBombastic555]

Went the hospital today for my follow up appointment. I've been having parasthesia for the past 2 years and only partially rested sleep (not waking up feeling refreshed). Probably 2 or 3 days a week I have to have a nap to get me through the day which can be anything from 1-3 hours. I've never really suspected CFS as I always thought CFS was severe fatigue like getting tired taking a shower kind of thing but my doctor says if my head and neck MRI scan doesn't show anything he's thinking of going down the ME/CFS route. The parasthesia is in both hands and feet intermittently and sometimes complete numbness. I don't have any pain. Just wondering if there is anyone here with CFS as my appointment today was a bit rushed and no-one has ever suggested CFS before..

Yeah think it have it. I've got an appointment with a specialist CFS clinic tomorrow.

Have you;had your B12 checked?

I have it. The main symptom is post-exertional malaise. Look it up and see if that fits?

I've had a blood test and I think they checked for deficiencies in that.

I have cfs and bad pem
Always happy to chat with others

I would want to rule out hypothyroidism and Vitamin B12 deficiency first, OP. CFS is what you are left with when nothing else explains your symptoms. It's not a diagnosis to want to have.

My daughter who is early 20s has had it pretty badly since she was 11. She was originally seen by the CFS unit at Kings but having attempted all their therapies including graded exercise which nearly killed her we now just plod on having a variety of good / bad days /weeks . It’s an awful illness and varies so widely that I really don’t think most people realise just how bad it can be .

It could be MECFS. Has MS been ruled out?

Symptoms in MECFS vary from person to person but post exertional malaise and non restorative sleep are common to all as far as I know.

I'm 2 years into my MECFS 'journey'. It was triggered by a virus for me and many other people with MECFS. As others say, you don't want this diagnosis unless you have eliminated all other possibilities, as it is a very difficult thing to deal with and there is no treatment. It relies on self management (which is hard).