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[Jules]

Ok.  I was diagnosed in 2002. I don't get it as severe as you described anymore. I rarely get the hideous leg pain I had for years but I always have a level of fatigue, usually i can function, i live alone so i have to, but sometimes I get a worse spell when I worry I'm going back to the dark days. Now that I don't work, it's made it easier to manage, I can reduce my activity and keep my head above water till it passes. It was very hard when I had to work.  During the lockdowns I was walking 3 miles a day and 5-8 miles once a week. I'm barely doing anything now, partly due to the weather but I need to get active again. Stress has the biggest effect on symptoms and takes longer to recover from.

[SarahT]

Hello Jules

I think I must be in the early stage,  so maybe that's why it seems more severe at the moment, mix it in with the fibromyalgia symptoms and it's a bit of a disaster. I don't go out to work as such, so like you, it's easier to be a bit active, then rest etc, or take those odd days where it's more rest than anything.
So far, it just hasn't got to a more manageable stage yet for months, the fatigue,pain and stiffness stays at a bad to worse level. But I'm hanging on in tnere!

Hoping to get some real advice soon from the chronic pain clinic as to managing the symptoms.

Like you stress has played a bit factor. As well as a bad time with peri, my mum died, and I dealt with all the legal stuff, my husband got skin cancer and the cfs\fibro symptoms had a field day. I think my head is pretty much coping now after some counselling so need the physical side supported now.

Still, taking each day as best I can. I hope you manage a slow gentle approach to fitness soon. Like me, the 5 mile hikes may be out,but we can do gentle walks on the good days, and benefit from being outdoors. Also a little light exercise indoors too. It makes me feel better and too to stretch those aching limbs.
X

[Jules]

I had a good walk today. Probably pay for it tomorrow. I was referred to a ME clinic but id had it 10 years by then and back at work soldiering on. I'd waited 3 years for an appointment.  It was utterly pointless.