Hello I’m new

[Cazxxx]

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

[AnniFrid]

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 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 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?

[Suzlj]

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 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 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!

[Neec66]

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

[PagingDrbumbrain]

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