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Original poster

Cfs and improvement

7 replies

AnnieEdison · 06/01/2015 21:30

I was diagnosed last year with cfs but had symptoms for longer. Over the last few days I have realised that I am improving dramatically. I don't ache, or need a nap, or have that general fatigue feeling all over.

Has anyone any experience of cfs and starting to improve? I don't want to get my hopes up but feel really different. Obviously I am still much weaker than me 2 years ago but it feels like a start

OP posts:

magiandco · 07/01/2015 08:38

That's great! Probably best to take life gently and not try to rush around too much doing all the things you cannot normally do so you don't trigger a relapse. Yes I had a dramatic improvement after staying in a mountainous part of France for two days- where we accidently booked full board! I don't know whether it was the salty local food (I have POTS with my CFS- but only recognised this after the improvement) or the altitude or the clean air or what. It was astonishing and wonderful to feel a little bit normal, and think clearly. I even managed to walk (downhill - DH went back for the car) in the hills. I slowly regressed a little after the first week but am lots better than I was before the improvement. I rest less and faint more rarely, although I still have to pace carefully. Recognising that some of my symptoms are related to postural low blood pressure and tachycardia helped enormously.
I hope your improvement is maintained. Wonderful isn't it?

GeorgeTheGiraffe · 07/01/2015 18:33

Have you recently had a baby? I ask because I've suffered with varying degrees of cfs since 2001 when I got glandular fever. I had a baby in march 2014 and after the first week I felt amazingly well for about 6/7 weeks but by 10 weeks pp I hit a brick wall and haven't felt that well again. Sleep deprivation definitely has not helped. Breastfeeding didn't help me to regain that well feeling again but nor did stopping breastfeeding!

Original poster

AnnieEdison · 08/01/2015 22:09

Thanks so much for your replies. It is wonderful

Magi, I wonder whether my break over xmas (DH off work and very relaxed) has had a similar effect to your holiday. I have managed some small walks and feel like each one lifts me more.

George, my youngest is 3 so don't think pregnancy is a cause. I do always feel dramatically worse during my period so I wonder if hormones affect it in different ways?

Still feeling better here. My brain fog is clearing a little too. Baby steps but giving me hope. Thanks again!

OP posts:

maggiso · 08/01/2015 22:48

Long may it last! (Magi here without the Christmas NC). For me, being able to get out in the hills and walk is so uplifting!

BigPawsBrown · 08/01/2015 23:53

I am completely recovered from CFS and it began in this way. Do try not to overthink it. Being healthy is the norm and ill the exception, so try not to be surprised by and suspicious of progress

Original poster

AnnieEdison · 09/01/2015 20:23

Magi, I am convinced that getting out and about is helping the recovery. I seem to have become passionate about fresh air and exercise

Big Paws, thank you. How does it feel to be completely recovered? I almost don't remember what it was like before. I do love your statement about being healthy is the norm. You are totally right in that I was suspicious of this progress. I went out to the park today with my DD and didn't worry about pushing it too far. I can walk so much further than just a month ago and now I am starting to embrace that and not worry too much.

OP posts:

BigPawsBrown · 09/01/2015 22:51

It felt great for ages and now I just feel normal. Learning to stop identifying as sick but also stop identifying as recovered really helped. I'm just a normal person now! Do acknowledge now (maybe write it down somewhere?) that, much as we wish otherwise, progress isn't linear and you will have a period in the future where you seem to be a bit worse. Best to view it as a blip because I don't think the panic and surprise (and then paying unusual amount of attention to symptoms etc) really helps. It's anxiety linked (not that it IS anxiety but that sufferers often react WITH anxiety, eg doing X made me ill so I'll avoid it) so try to get out of that loop. I'd be happy to PM about it. If it helps to inspire you I'm a lawyer and have had five hours' sleep the past two nights. I'm also a novelist and just finished working on my novel to have a bath

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