I totally understand. I used to be fit and active -ran, did weights, yoga so exercised 6 days a week-suddenly unable to get off the sofa and eventually diagnosed with CFS and then later also fibromyalgia. It’s been 5 years now & I was just over 40 when I was diagnosed. Sorry if this is long and rambling. My brain doesn’t have the clarity it used to!
Until I was prescribed gabapentin (which I resisted taking for several months as I was worried about side effects) I used to spend all night rolling from one side of the bed to the other, because even lying in one position would cause so much pain, & DH had moved into the spare room.
I now at least get some sleep and it does help with the pain but I do struggle to work my 20 hours a week, I get home and can’t move off the sofa. I have no life basically. In fact having everything closed is almost a relief because at least now I don’t have to worry that the neighbours are wondering why I never leave the house or do anything.
I did read that eating gluten free relieved symptoms, maybe it does as there are some days when I feel less awful and the pain is certainly less than it was when it first all started.
I also try to pace myself when not at work as I was forever, if I was having a good day, trying to cram all the things in that I couldn’t do on a bad day and end up using all my spoons and then not having enough to get through the next day.
www.practicalpainmanagement.com/patient/resources/pain-self-management/using-spoon-theory-explain-chronic-pain
It’s hard and the first few years were really bad. I was miserable and very much thinking that my life is over, why me? I think stressing about it caused constant flare ups... which meant more pain ...which caused more stress..... I think gaining a level of acceptance really helped, as did giving up alcohol, I do now even manage to do short yoga sessions on my days off and do feel better just being able to do this for me.
There are times I even manage a walk but not very often I must admit. I am lucky that DH mostly does the hoovering as that leaves me exhausted and in pain but I now have learnt just not to stress if the place does need hoovering because jumping up and doing it could leave me feeling so awful. It can just wait until DH is free.
I also ended up with low B12 and now have injections 12 weekly to keep my levels topped up and I’m on prescription vitamin D due to deficiencies. There are some small studies that suggest links between low B12 & fibromyalgia and also that Vitamin D can help fibro suffers but the ‘normal range’ for B12 in the U.K. is set very low. In Germany people can buy B12 for self injection in the chemists but we can only get a prescription (although you can seemingly ship it over to the U.K. and self inject if you are desperate. There were some links on a MN thread I’m sure you could search for if need be)
I also use this at night, 3 pumps of lotion after my shower. www.amazon.co.uk/BetterYou-Magnesium-Body-Lotion-180ml/dp/B00U6CG5QU?tag=mumsnetforu03-21
Low magnesium causes sleeplessness and muscle pain, I feel it helps. Some studies say magnesium helps people with fibromyalgia, others say it makes no difference but when you are desperate you try anything & if it works for me I don’t really care if it’s placebo tbh.
If I can think of anything else I will pop back on tomorrow. It’s pretty much bedtime as I’m exhausted as per usual towards the end of the week.