Have any of you begun to recover or recovered significantly from CFS?
I want to get a feel for if recovery is age related (do younger folk recover more quickly?) Or if it's related to how badly you suffered from CFS in the first place.
I've that broadly, younger folk get better quicker. I've also heard that if somebody has had sudden onset, maybe caused by a virus, then they are more likely to recover in about three years.
What do you know?
I'm 44, was diagnosed after a virus, came into it pretty fit and have noticed overall improvements in stamina and symptoms over the last 6 months (I'm about 16 months in).
I was bed bound at my worst last year and still have poor periods, but things are slowly getting better. I was able to quit work and dedicate my time to it though. I think this is one of the key things.
What can you do now bob?
I can operate around the house ok as long as I pace myself. I can't really go out alone but do go out walking and shopping with my wife on good days. It's still very limited though and sometimes when we get where we were going we have to come right back again.
Hi I am 51. I was diagnosed 7 years ago. I was no exercise fan, but a pretty busy mum with a part-time job that kept me out and about. Part-time however, never really is part-time. In the beginning I was quite ill and was off work for a couple of months. But being careful and listening to my body I went back to work and remained there until 2013. I then had one major relapse ( I fully believe this was due to work pressure and lack of support) and unfortunately I too came out of the workforce. My mobility was affected, I too became bedbound, housebound, and had to use a wheelchair at times. My home had to be adapted in places. Today, I still suffer with mobility issues and walk with a crutch and can not walk very far. I rarely go out and if so have someone with me. I am doing much better than I was back in 2013 but still have a very long way to go. I cant stand a cook a meal, I can't walk all the way around the supermarket, and yes I too find once we got there we have to go straight back.
I think it really depends on the individual on how quick recovery comes if at all. I have just read "from ME to you with Love", by Louise Harding. I would thoroughly recommend any M.E. Sufferer to read this. It gives you an insight to how other people are suffering, on family and friends, employers, and professionals who do not understand the condition.
I agree the key thing is to dedicate your time to it and listen, listen, to what your body is telling you.
All the very best.
Tx
I've heard of older people recovering, though some still have to pace themselves. It seems to often be related to how much rest and help people can get.
It can be harder for those who live alone as I do. I'm inbetween carers and trying to get another one (my previous one got cancer and had to quit).
Some symptoms have improved but the worst ones i.e. brain fog, exhaustion etc haven't and I've suffered from ME for over 10 years. I haven't given up hope though because George, a member of this group, recovered after 10 years of it and puts it down to a nutritious diet and cutting a lot out.
So as one of the previous posters said, I think it's posible for people of any age to recover.
I know the feeling! Apart from the fatigue / loss of stamina, do you get the post Exhertion malaise the next few days? How quick has your recovery been? Just trying to compare things! 24 months in I saw zero improvement myself, probably slight decline.
So sorry to hear that Tina. Thanks for replying. I think I have CFS but not ME. I don't get sore throat or anything, just mainly the fatigue and PEM, until a couple of weeks ago.
Thanks so much for your detailed reply Georgia. I'm lucky to have a fantastic wife who looks after me. Without her, I don't know what would have happened.
I was 32 when I got sick after a 6 week bout of mono. For a few years I was close to my pre-sickness level. I think the problem was that I kept pushing my body hard because I refused to believe I was sick. Over time I kept getting sicker. Now at 43 years old, I am mostly house bound. I work from home and only go out a couple of times a week for little jaunts. Even grocery shopping can be too much if I am not careful. This disease kicked my butt over time. I hope you have better luck. Take care.
PEM yes. Thats another improvement I've noticed. Before it could take weeks for the PEM to improve, now its mostly days.
I would say its taken 6 months of pretty much doing nothing but waking each morning and dedicating myself to getting better that has gotten me to this point. Plus a good diet and supplements.
Ouch! We are quite different then. I went from very fit to unable to walk 50metres overnight! Because of a virus. When that cleared, I was left fatigued. After 24 months I still couldn't do more than walk half a mile slowly. I have found an electric bike really good. It's easier than walking and gets me around for several miles.
After 24 months of gradual decline I just felt different one day. That's 16 days ago. During those 16 days I've increased from hardly ever walking, but maybe 3 miles on my e-bike, to 12 miles on e-bike and 2.5miles walking in 50minutes - with no PEM,
I'm trying to judge if I'm totally OK again, but needing to get fit like normal. I think I could do more, but my consultant advises caution.
All I'm left with now is frequent headaches, which I rarely had before CFS, and a bit of a fuzzy head - which doesn't limit me at all.
Feeling hopeful!
Sounds hopeful and good luck. Be cautious though as your Dr advised.
My improvements have come suddenly as well, then there is a plateau for a bit, then another small one.
Mine was sudden onset from a virus, measles, that was 3 years ago next month. I'm still suffering badly. I'm 42 now and feel about 82! Last few months have been the worst. So if I'm going to get better in the next month then that will be a bloody miracle 😊
Dear Gayle, so sorry to hear that. It was Hep E (rare mostly foreign virus)that dumped me in hospital for a month when I was 52. Initially we all thought I'd be better in a few months, but we ended up having to cancel a holiday. Now I'm 54
I wonder if it was a miracle for me actually. I got our vicar to come and pray for me one Friday. The next Monday I felt different and, I've kept on getting better. Yesterday I walked 3 miles, then cycled 4 on an electric bike set to minimum assistance, then went out to a restaurant with the family and then walked another 2 miles, though the last quarter was hard.
20 months ago, prayer didn't work.
I don't get it, but I'm delighted to be improving so rapidly.
It is a horrid thing, I felt less able than our neighbour who is 90!
I really think my problem is that I have a hard time slowing down. I still work 8 hours a day; although, I work from home. I wonder if I didn't work (although I'd lose my house, car, etc) if I would start to feel better. Maybe the 8 hours of work a day is too much and is sapping my energy. I wish I knew. I feel so bad that sometimes I just can't go on and lie on my bed in tears of exhaustion and pain. I just wish I had my old life back. I didn't know back than how good I had it.
I tried working two hours a day and couldn't - I doubt any clued up medic would abide it.
Weve found we can live on far less money than we used to. Fortunately, we didn't have to lose our house. We did consider downsizing, but it didn't come to that.
Hi seidman,
Miracles do happen! I'm really glad to hear you are doing so well. I would really really caution you to take things just a little slower though. It sounds like you are doing way too much physical exercise all at once. Even if you are better, too much too fast will set you back. If someone who didn't have CFS suddenly started doing what you are, when they were not used to walking and biking, the body would rebel. So take it easy for awhile, just work up to where you want to be gradually. I know it is hard not to take advantage of any time that you feel really good, but remind yourself to take it slow so you can keep having those days for a long time to come. I am so excited for you, I really hope you keep us informed how you do over time. What a great thing to hear!
I hear what you are saying!
I thought I'd overdone it a few days back. As I got close to the end of a walk, my legs basically stopped and trembled, but there was no other way back to the car, except to rest up and shuffle on.....
But the next day, no fatigue.
The day after that I did about 6 miles, no problem and the next day too. Only the expected muscle stiffness. But now I am sleeping well too.
I'm finding now things are the opposite of just three weeks ago. Now, if I'm droopy in the day, a good walk invigorates. Previously, if I tried that, I could not go far (sometimes only a couple of minutes) and felt much worse six or seven hours later and more fatigued for several days.
But yes, I'll watch it!
Thanks for your good advice.