Recovery from ME/CFS

[afrikat]

Has anyone had ME/CFS for several years and made a full recovery? I have been ill since May 2017, diagnosed with ME/CFS in 2018 and developed chronic migraines in 2019. For several years I was moderate - could just about manage to work, spent most of my other time resting. Until mid 2023 I was then probably mild. Still working full time, but also managing to socialise and spend time with the family. Lots of resting and pacing and some 'crashes' but definitely able to do more.

Mid last year something seemed to just switch within my body. I no longer felt utterly exhausted all the time, my brain wasn't full of fog and I could do more and more activity. Since January I have slowly been upping my activity levels to the point where I am now doing 10,000 steps a day (a year ago it was barely 2000), I'm doing weights and cardio 3 times a week and my body just feels...normal.

After being ill for so long it feels absolutely amazing but I just don't know whether I can trust it - can people really recover from this illness after 7 years?

I consider myself recovered. I got it 20yrs ago. Practically dropped out of life for a year. Sometimes went out in a wheelchair, sometimes struggled to crawl from bed to the loo. Gradually built things up over about 8-10yrs to working full time with a bit of a social life, then was able to start to add in a bit of physical activity too. Always very mindful to watch for signs and take the foot off the pedal when needed though. Had kids. Never went back to work (not really ME/CFS related) and 10 years on from that I am now starting to push myself physically and really try and get my fitness back too. I don’t think anyone would look at what I do and think I had ME/CFS now, but equally I don’t hold down a job, so maybe if I tried to hold down a proper job I might struggle especially if I tried to do exercise/hobbies on top of kids/house stuff. I am still very cautious when I get ill, as that’s how I ended up ME/CFS in the first place.

Yes I feel that you're spot on here. I see that alot of people eventually receive a diagnosis of some rotten autoimmune condition, or Ehlers Danlos Syndrome, Cervical instability ( as with Jennifer Brae). I recall one woman who suffered so badly she died. At autopsy ( she donated her body) they found inflammation of dorsal root ganglion. I have an horrific autoimmune condition that causes the same attack.

This is possibly why people can be affected so differently. Multiple conditions are probably at play.

Embrace it OP. It sounds pretty positive to me that things are ' better'.

My mother has it for two years and then it very suddenly went away. It's been almost 20 years and she never had a single symptom again.

A few of my cousins had it but recovered fully during pregnancy, for most of them it slowly came back after giving birth but for one it stayed gone.

I've been one of the unlucky ones though, mine started in 2007 and has only gotten worse. I can now barely walk and need a wheelchair to get around outside the house.

Yes I agree with this. It's such a complicated illness that has a variety of symptoms that could be caused by so many things. I've often thought if someone could just do the 'right' test I'd know what was actually wrong with me and I wouldn't have a diagnosis that basically means 'we don't really know why but you will feel like absolute crap for most of the time'.

I'm so sorry that sounds awful. It's interesting that there seems to be a genetic component at times, there must be so much more going on that science has found

This is really positive thanks. I think I am lucky that I WFH 90% of the time and can flex my time and rest if I want to. My husband has also taken on most of the childcare and household tasks (which I will start doing more of if my health continues)
I don't think I'll ever take my health for granted again and will always be wary of getting ill and making sure I rest properly

Me too. I'm in the worst crash ever. Have been off work for quite some time and still
Can't do anything. It's a struggle to have a shower and get dressed in the mornings.

Does anyone monitor their oxygen levels? I am feeling awful after a virus. I had a cough for five weeks, tested negative for covid despite losing sense of taste and smell. About three weeks now since the cough went I still feel awful. I assumed CFS which I have had for 20 odd years, but my oxygen levels are dropping on exertion. With CFS exertion usually causes higher heart rate but oxygen stays good, but this is much worse. The oxygen reading goes back to normal once I sit and rest. It goes from 88 back to 99 within minutes.
I do have sore ribs from costochondritis and wonder if that is related.

I'm sorry it's just awful when you're stuck in a crash and there is no end in sight. Really hope you see some recovery soon 🙏

Quoting myself, got to see the GP at last. My chest is clear but oxygen levels going low with exertion. Off for a chest X-ray next.

CFS with a virus on top plus 2 months of family stress, I think my body had just had enough.

Really hope you see some improvements soon 🙏

Thank you @afrikat ! NHS inefficiency is delaying my xray but luckily I can cope if I do absolutely nothing. (Can't we all!) Had to attend DBro's funeral feeling like this...a surreal experience. Haven't even had enough energy for a good cry.

I am seeing such similarities with post covid syndrome but since I never tested positive it's filed under CFS I assume - which goodness knows is bad enough on its own.

There will be so many ill people in the next few years. Still hoping for a magic treatment!