Has anyone got CFS and could share some tips to help me as I am really struggling.
Thank you in advance
Thank you in advance
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My mums got this, I can only share from her experience but you just have to take it one day at a time! She’s had it for a while now so she knows her limits. Only do as much as you can and if you feel like something is too much just don’t do it! She wears a Fitbit and has noticed if she does more than 3000 steps she will be bad the next few days so she watches what she does. She sets a timer a lot so if she’s doing a bit of admin for work for example, after 15/20 mins she will stop for a bit, have a cup of tea and a bit of a rest before she carries on. Do you have any support groups near you? She found one through her GP and it helped her a lot speaking to others with it x
It makes me so sad I have no life
I really feel for you, I was diagnosed about 8 years ago and it was really tough in the beginning, I don’t think I helped myself as I fought against it and ultimately made it worse.
I think one of the biggest challenges is the headspace it puts you in and feeling helpless.
I did a course of cognitive behavioural therapy with some counselling, it wasn’t an overnight fix but it helped me accept it and stop pushing myself and over the course of time I’ve started to feel better.
Despite being told to gradually exercise that was absolutely the worst thing for me, even the shortest of walks left me bedbound.
Have you been offered any support from your doctor?
I think one of the biggest challenges is the headspace it puts you in and feeling helpless.
I did a course of cognitive behavioural therapy with some counselling, it wasn’t an overnight fix but it helped me accept it and stop pushing myself and over the course of time I’ve started to feel better.
Despite being told to gradually exercise that was absolutely the worst thing for me, even the shortest of walks left me bedbound.
Have you been offered any support from your doctor?
It’s such an awful thing! I did read that people are getting it after having Covid so hopefully more research will be doneIt makes me so sad I have no life
How long have had it for? I think my mums coming up to 4 years now and she has good and bad days but she’s definitely managing it a lot better nowI was speaking to a OT once every month ( since March was diagnosed in Feb) but that has stopped due to staff shortage. I have asked for a work place OT but that has caused me so much upset as worded in the report was ‘feels unsupported’ which this may have come across this way but I didn’t want that to be written on my report. Who knows what issues it’s now going to cause me
I personally think this was very unprofessional of the OT and I don’t understand how wording like that would ever help anyone.Yes definitely lots more people getting (sadly) so therefore maybe more money for research. There is a massive research project that is weeks away from happening that I have signed up for. May not get picked to be a part of it but either way a massive step forward! I am currently a prisoner in my own body.It’s such an awful thing! I did read that people are getting it after having Covid so hopefully more research will be done
Although I got diagnosed this year I have definitely had this since 2015 ( at very least) but it’s taken a long time to get diagnosed as drs are easy to dismiss ( I look healthy and my blood come back healthy so some what understandable)
I feel the last two years have been worse ( more work load may be a reason or even older or maybe I’m just giving up)
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I had/have CFS/me and fibromyalgia.
I was diagnosed when I was 18 after a nasty chest infection. I was bed bound for the majority of the time. By the time I was 21 I was better, back to working full time and had a social life. The only thing I was strict with was pacing myself, having a set bedtime and taking a multivitamin. I was and am very lucky I got better.
When I was 30 caught glandular fever and was really worried it could return. It look me over a year to fully recover. I do still have periods where I am not 100% but no where near as bad as I was at the start.
My gp was supportive and realistic with me. I was almost sucked into all the alternate therapy’s what promise a miracle cure for a high price. In the end I didn’t pay as I felt it was too good to be true and a load of bs.
I was diagnosed when I was 18 after a nasty chest infection. I was bed bound for the majority of the time. By the time I was 21 I was better, back to working full time and had a social life. The only thing I was strict with was pacing myself, having a set bedtime and taking a multivitamin. I was and am very lucky I got better.
When I was 30 caught glandular fever and was really worried it could return. It look me over a year to fully recover. I do still have periods where I am not 100% but no where near as bad as I was at the start.
My gp was supportive and realistic with me. I was almost sucked into all the alternate therapy’s what promise a miracle cure for a high price. In the end I didn’t pay as I felt it was too good to be true and a load of bs.
Fingers crossed you get on to the trial, it’s great that there could be other treatments on the horizon, it’s desperately needed and I really hope it helps you.
I know it’s very hard to stay positive and also so frustrating when those around you don’t understand how horrendous you feel 24/7, I always felt like I had to constantly explain myself because people would just think I was lazy! That in itself was exhausting but like the other poster, I also got better and lead a pretty normal life now.
I can’t even pinpoint how it happened, it was just very very gradual.
I know it’s very hard to stay positive and also so frustrating when those around you don’t understand how horrendous you feel 24/7, I always felt like I had to constantly explain myself because people would just think I was lazy! That in itself was exhausting but like the other poster, I also got better and lead a pretty normal life now.
I can’t even pinpoint how it happened, it was just very very gradual.
Honestly reading your post and the last persons post has shocked me. I have been told I will not get better! Information I’ve read states no cure! I 100% believe you both but can’t process at the same time! I have been like this for 5 years ( probably even longer)
I honestly had to stop reading up on it or going on to any CFS forums as I found it so draining and counterproductive, I was the same after researching and thought my life was going to be spent trapped by it.
I also had it for a number of years before it progressed and I was bedbound and I was then diagnosed.
The one piece of advice I would give is I think it’s really important to speak to a therapist of some sort, it helped me so much to accept it, I wasted so much energy swinging between feeling angry about it and guilty that I was failing everyone around me.
It is absolutely possible to get better, physically I have no more pain and I can also exercise most days. The only thing that hasn’t gone is the brain fog, I’m hoping that’ll come in time!!
I was diagnosed with m.e in 2012, I really struggled for a couple of years but now I don't really notice it, I have 2 children and wouldn't say I'm any more tired than any other parent, but when I get ill I get really ill, and when I'm tired I get dizzy, faint sick etc.
My brother was bed bound from the age of 14 with m.e, he is now 39 and works as a builder!
I think the best advice is just listen to your body, I'd you need to rest, rest. If you can do something do it. You learn to balance it eventually. Good luck x
My brother was bed bound from the age of 14 with m.e, he is now 39 and works as a builder!
I think the best advice is just listen to your body, I'd you need to rest, rest. If you can do something do it. You learn to balance it eventually. Good luck x
I was diagnosed with CFS/ ME when I was around 14 and struggled with it severely for about 6 years. At one point it was so bad I couldn’t even get out of bed and had to crawl downstairs as my energy was so low.
Most were generally a bit crap in understanding it until I went to a different GP who was amazing and she helped me get into remission (as I’d call it, not sure it ever goes away completely).
The good GP made me track hour by hour how I felt and basically start a detailed journal of day to day. Noticing what drained me quicker etc. I had to cut out a lot of ‘normal’ things and was part time at school. It is all about pacing and it’s a gradual journey. Some days you think you’ll never get better but other days are much brighter! The best piece of advice is REST. If you are pacing yourself doing 1 thing every 2 days (as an example) you need to rest as soon as you come home. I would rest even if I went out into the garden. Its all about the ebbs and flows and finding a good balance.
Now I am 27 and *touch wood* haven’t had any problems with it in years. I would say I have a lower energy capacity than most people and do tend to get tired quicker than others around me. But I now live a normal life and don’t really ever think about it! Don’t give up hope!
Most were generally a bit crap in understanding it until I went to a different GP who was amazing and she helped me get into remission (as I’d call it, not sure it ever goes away completely).
The good GP made me track hour by hour how I felt and basically start a detailed journal of day to day. Noticing what drained me quicker etc. I had to cut out a lot of ‘normal’ things and was part time at school. It is all about pacing and it’s a gradual journey. Some days you think you’ll never get better but other days are much brighter! The best piece of advice is REST. If you are pacing yourself doing 1 thing every 2 days (as an example) you need to rest as soon as you come home. I would rest even if I went out into the garden. Its all about the ebbs and flows and finding a good balance.
Now I am 27 and *touch wood* haven’t had any problems with it in years. I would say I have a lower energy capacity than most people and do tend to get tired quicker than others around me. But I now live a normal life and don’t really ever think about it! Don’t give up hope!
I work full time but struggle as stressful job so I come home from work go straight to bed then to get up a couple of hours later to eat then bed. I stay in bed nearly all of my weekends and time off work. I have a cleaner and a garden ( not rich Just can not physically do either). I am in pain everyday especially in the morning somewhere between the pain from being the gym and my bones feeling like there on fire ( mainly joints from lower back down). My brain fog is awful and I come across ‘slow and maybe confused sometimes’ because I am now.
Even tasks like showering and especially washing my hair are horrible because my arms feel like there 20 stone and it’s such hard work.
I am so shocked ( I know I’ve said it) by people saying life gets better. It gives me so much hope but I feel still in the back of my mind I won’t be a lucky one. As it’s beginning to feel like I’ve always felt this way even though I know I haven’t!!!
The consultant said statically if diagnosed in the first 5 years lots of improvements can be made, with learning how to pace ( so hard being a workaholic). I feel my CFS started maybe 5 years back perhaps longer! But only got officially diagnosed this year! so maybe I might be lucky.
I have become overweight as well due to being to tired to exercise ( ex gym and class instructor). Also due to eating fast food as I’m to tired to cook so stopping off a McDonald’s etc is easier. I have been eating better for 8 weeks and lost weight but obviously without exercise is slow.
I do know I’ve got it so much better than others as I am not bed bound even though in a way I feel I am. I am just so scared of losing my job I’d rather burn out completely trying to be normal. And because my job is so stressful I know that takes a massive toll day to day so I set myself back without any other external force.
Even tasks like showering and especially washing my hair are horrible because my arms feel like there 20 stone and it’s such hard work.
I am so shocked ( I know I’ve said it) by people saying life gets better. It gives me so much hope but I feel still in the back of my mind I won’t be a lucky one. As it’s beginning to feel like I’ve always felt this way even though I know I haven’t!!!
The consultant said statically if diagnosed in the first 5 years lots of improvements can be made, with learning how to pace ( so hard being a workaholic). I feel my CFS started maybe 5 years back perhaps longer! But only got officially diagnosed this year! so maybe I might be lucky.
I have become overweight as well due to being to tired to exercise ( ex gym and class instructor). Also due to eating fast food as I’m to tired to cook so stopping off a McDonald’s etc is easier. I have been eating better for 8 weeks and lost weight but obviously without exercise is slow.
I do know I’ve got it so much better than others as I am not bed bound even though in a way I feel I am. I am just so scared of losing my job I’d rather burn out completely trying to be normal. And because my job is so stressful I know that takes a massive toll day to day so I set myself back without any other external force.
I still notice little bits like the pains in my arms, I can't plait my own hair and have to take breaks in washing my hair.
I used to plan my week so that say I was doing something Monday, Tuesday and Wednesday would be resting days. I was lucky that lived at home so could cut my work hours.
Completely get what your saying about the weight gain, its a vicous circle!
I used to plan my week so that say I was doing something Monday, Tuesday and Wednesday would be resting days. I was lucky that lived at home so could cut my work hours.
Completely get what your saying about the weight gain, its a vicous circle!