Meet the Other Phone. Flexible and made to last.

Meet the Other Phone.
Flexible and made to last.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

C.f.s/m.e

8 replies

TwitchyJerk · 30/09/2022 16:46

Hi,

Is there any one out there who may be able to give some reassurance or advice.

I got ill with flu some months back and never recovered from some of the symptoms. I was off work over a month initially and then tried to go back to my very active job with disabled teenagers twice.

Both times I went back to work my management and colleagues were amazingly supportive and I spent a few chilled shifts with lovely service users, but I was so ill I ended up having to lie down on floor while supervising these teens, and even vomiting (made it to toilet!).

Both times I saw my GP the day after a few shifts and got sent to a&e because of new symptoms I was displaying. A&e Dr told me its c.f.s/m.e.

The new symptoms didn't go away and I feel like pushing myself just made me worse, like before I went back to work the first time I was very tired, occasionally dizzy but felt I'd cope working. But now I hardly leave the house/bed/chair, can't drive, can't go for a walk.

Today, I finally had the appointment with rheumatology (g.p said that they diagnose c.f.s./m.e) and yes, that Dr thinks that is what I have (will run a few more tests to rule other things out) and there is a clinic that specialises in it in my county, but they are not taking any new referrals. So basically I have no guidance on the condition and what I should do and how to try and get better.

I've run out of full sick pay at work, so now having money worries. My husband works but also in a low paid job. A few people have told me to try and claim pip but I'm not sure how this works or if I'd be entitled.

Not knowing how long it'll take to/if ill get better is hard. Feeling pretty depressed as really hoped this appointment would help.

Symptoms are many and vary daily but include:
Pain in muscles and joints
Physical exhaustion
Twitching and jerks
Headache
Photosensitivity
Sensitivity to sound and smell
Dizziness
Weakness
Can't concentrate for long.
Etc etc etc

Thanks for any help!

OP posts:
stayathomegardener · 30/09/2022 16:50

Get hold of a copy of Dr Myhill's book for a self treatment plan whatever your diagnosis.
It's absolutely rubbish isn't it.

TwitchyJerk · 30/09/2022 17:04

@stayathomegardener thanks, I will order it. 🙂

OP posts:

Interested in this thread?

Then you might like threads about this subject:

TwitchyJerk · 30/09/2022 18:59

@CFSKate thanks, I had a quick look, it's quite a heavy document!

OP posts:
earlydoors42 · 30/09/2022 19:16

Definitely appt for PIP. Enclose copies of medical letters and letters saying you aren't working etc and whatever else you can find e.g. print off your doctors record if you are able. They rarely contact your doctors despite taking their details on the form. If they turn you down, don't give up, ask for Mandatory Reconsideration and then tribunal appeal if necessary. Good luck.

FlyingUnicornWings · 30/09/2022 19:26

Look into the possibility of chronic migraine too. Migraine doesn’t have to always mean headache - can just be neurological symptoms, exhaustion.

TedMullins · 30/09/2022 19:30

I’ve got it. I’m surprised/impressed you got referrals and a diagnosis that quickly as mine took over a decade. Is there any way you can work from home or look for a new job that’s mainly WFH? I work full time and only go into the office once a week or not at all if I can’t manage it. I used to be exhausted going in 5 days a week. Or could you drop to part time? I personally wouldn’t give up work completely

TwitchyJerk · 01/10/2022 08:54

@earlydoors42 @FlyingUnicornWings thank you!

@TedMullins thanks! I've not got a diagnosis, just Dr's saying they think! Yeah I don't want to leave work, so will look for something from home if I am unable to get back to my job.

OP posts:
New posts on this thread. Refresh page
Swipe left for the next trending thread