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Hello I’m new

Cazxxx profile image

Hello I’m new here. M.E sufferer for almost 4 years. Looking to connect with people from Edinburgh in the same position

8 Replies

Hi Cazxxx

I've just been diagnosed a few weeks back. Some days I feel pretty optimistic but my tiredness seems to be so up and down. I'll be feeling well and like I can only sustain it, then suddenly get fatigued again. I'm trying to pace myself but not managing to sustain better days for more than a few days at a time. How are you doing?

Cazxxx profile image
Cazxxx in reply to AnniFrid

Hi 😊

I’m the same as you can only feel better for 2/3 days then get a virus or have a huge crash. Mine is more that I get constant viral infections and infections which lay me out for weeks or months and I don’t have fatigue all the time just when unwell. I haven’t found pacing helpful at all and I did it very strictly.

It’s a frightening illness when first diagnosed. How are you coping with it? The only advice I have is to rest and sleep when needed I’ve not found anything else so far which makes me get better. I also try to have a positive attitude as it’s the thing that keeps me going every day.

AnniFrid profile image
AnniFrid in reply to Cazxxx

Well, I'm trying to get to a 'baseline' that I can maintain. Thankfully I've not had constant repeat infections, that sounds really tough. I'm signed off work for three months so at least I can rest. It's when I feel like my kids are missing out that I feel worst mood wise. That said, I have been on a bit more of an even keel emotionally as I I come to terms with it. It's not like I can't ever do anything and it isn't terminal cancer after all. I feel like in time as I come to fully accept it that I will not have my mood affected. I am on the waiting list for the ME Clinic, but it sounds like it's not that great?

Hi Cazxxx

I was diagnosed with cfs last summer. Unfortunately i also have chronic pain due to arthritis and a joyful tremor thrown in too. I also live in Edinburgh and am one of the lucky ones who has access to the ME/CFS service at astley ainslie hospital. Just wondering if you have had access too?

Cazxxx profile image
Cazxxx in reply to Suzlj

Hi😊

Yes I have been twice to the clinic unfortunately it hasn’t helped me one bit. They mainly told me about pacing which I already knew and was doing. Even very strict pacing hasn’t helped at all. I mainly suffer constant infections. I also have terrible migraine. I have tremors also when I’m unwell and awful dizziness. Have you seen any improvement with going to the clinic?

Suzlj profile image
Suzlj in reply to Cazxxx

To be honest, no but i think that is partly my fault i work in the nhs and have no breaks. We have spoken a lot about work and how i should cut down and pace but I'm finding hard to do it in practice. I too am struck by infection on infection. Dont know if there is much i can do about that.

Hope things get better for you soon. I'm definitely a work in process!

Hi, I'm new here and just read your post. How are you getting on? Xx

Hi, I’m m hardly ever on here but saw your discussion and thought I’d ask how y’all are doin.I’m from Linlithgow and would quite like to say that I’m a sh*tshow most days, but found hydrotherapy to be quite good. Not as hot as people make out. It’s braw though. X

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