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Fibromyalgia - any help gratefully accepted

(59 Posts)
MissAdventure Wed 15-May-24 19:57:01

Thank you.
I'm still finding my way around the world autoimmune problems, which I find incredibly difficult.
I was sceptical, which doesn't help matters, I'm sure.
My life seems to be one long flare up, with no respite, and it's really frustrating.

I have undifferentiated connective tissue disease/disorder, so I'm told.
A mixture of most of the conditions, but not enough of any one of them to label it as that.

babsinthewood Wed 15-May-24 19:45:48

Yes, but quite carefully. I get very frustrated because there's so much I want to do! If I overdo it one day it can take several days or longer to recover. I'm not a gym bunny anyway. I try to have a walk most days, unless I'm having a 'crash' from overdoing it. And I enjoy gardening ( but I do have to pace myself). If I work up very gradually over weeks and months I can do quite a bit. It's very frustrating, because if I get any sort of 'bug' it can really throw the ME and pain off kilter again; it's the 'pacing' myself I find really hard. Thank heavens I'm retired, and fortunate enough to have an understanding husband. It's something that often doesn't get much sympathy from people who don't understand it.

MissAdventure Wed 15-May-24 19:12:20

Do you exercise, babsinthewood?

babsinthewood Wed 15-May-24 19:07:15

I have fibromyalgia/ ME, started about 5 years ago when I had a serious accident. It's improving gradually. I take cocodamol at times but the most helpful thing has been amitriptylene. I know people look at it and think, it's just an antidepressant, but that isn't how it's working; it seems to stop your brain registering it as pain.
Try the ME society website, meassociation.org.uk/

MissAdventure Wed 15-May-24 18:55:22

Just bumping this in the hope that someone more knowledgeable than me can help you.

Sago Wed 15-May-24 14:34:37

Someone I know suffers and uses cannabis, I don’t know if she eats or smokes it but she swears by it.

MissAdventure Wed 15-May-24 14:32:43

Also, I think you have to be careful with regard to exercise.
At one time it was advised, but new info is that it can do more harm than good.

They are going to update the 'nice' guidelines to ensure it is giving correct info.

MissAdventure Wed 15-May-24 14:25:39

Has she been given any medication or advice from a rheumatologist?
I take zapain for pain, and find it takes the edge off the pain, and that was prescribed by my gp.
I do have other issues with my back though, so I'm never sure what causes the pain.

Zapain takes the edge off it all though.

Gingster Wed 15-May-24 13:28:06

My Dd has been diagnosed with this. She can’t seem to get any relief from the pain.
Any excercises or meds you could recommend! Please ?