Ways to manage tiredness
Posted , 8 users are following.
Ive been suffering with CFS symptoms for the last nine months, mainly extreme tiredness/flu like symptoms after moderate exercise and general sheer tiredness. This is is coupled with a sleep disorder, although my specialist cannot identify any key issues I've had numerous EEGs and nothing comes of it.
I wake up tired every day without restorative sleep it's become a living nightmare.
My GP believes a CFS diagnosis is appropriate having done tests and ruled out other options. I struggle with concentration and have cognition issues be it when driving, following directions or remembering things short term.
Exercise used to be my natural antidepressant as I had suffered from Cyclothymia.
I get very tired achey legs and arms as well as dizzyness, pins and needles in my feet and hands and feel the cold in these parts too.
How do people manage a healthy exercise routine, do you eat more of certain foods?
0 likes, 41 replies
russ151 lisa72660
Posted
HI Lisa i have had m e for about 6 years now so i am quite aware of what you are saying if i was you i would concentrate on resting more than exercise i fell into the trap of pushing against it only to make it a lot worse and was given graded exercise which is something i would avoid .
Your symptoms seem to fit with m e cfs i am assuming your blood tests are fin?e so if so you get a diagnosis it is crucial in early stages to rest listen to your body its frustrating i know there are medications which help with sleep amatryptyline is good i take which helps sleep and pain but like i say i would avoid exercise at all meditation can help some people be kind to yourself
lisa72660 russ151
Posted
Thanks Russ, blood tests were all fine, they are redoing the test to make sure.
I know my mental health will suffer without exercise so I guess I need to find something of a lower intesity and only consider moderate exercise at weekends. will
russ151 lisa72660
Posted
hi lisa im have been unable to work now for 5 years i have recovered then relapsed again from a virus recently , much as you want to get better people will tell you to take this try that all i am saying is listen to your body i was into exercise before this and kept pushing at first after the symptoms started it basically led to a massive crash which left me bed ridden .so what i would say is try not to stress about the situation and if your going to exercise watch what happens after if you get the delayed fatigue and other symptoms just back off a bit your body is telling you to slow down .I am about 6 month in to my relapse and what i have learned from the first time is so valuable which was to stop and then do more everyone who has m e has reasons for having it some maybe just bad luck but mine was due to extreme stress and just pushing at every angle of life and then the virus ,i have learned alot from m e it can make you a better person im not sure how bad your symptoms are are you still working?
lisa72660 russ151
Posted
Thanks Russ, yes still working and lucky its remote and a desk job!
I just walked to the shop and then got the bus back, I think its a mild case but until I get the confirmed diagnosis rather than the GP saying it might be CFS I don't want to assume anything.
russ151 lisa72660
Posted
Hi lisa sounds very much like m e cfs to be honest but yes just wait and see what the gp says i had sleep studies and so many other tests when my sleep was affected just showed mild sleep apnea which is quite normal it was the m e that was causing the unrefreshing sleep after time and the virus run its course it returned to normal but again now its affected just have to be patient now i know i will recover again and it will be quicker than the first time as i am more informed i think correcting sleep is crucial and for me eventually low dose antidepressants like amatryptyline and melatonin worked for me
lisa72660 russ151
Posted
Thanks Russ, I came of citilipram and the sleep clinic tried all sorts of combinations of things but nothing worked.
At one point the combination of drugs sent me into a manic state and thats when I was diagnosed with Cyclothymia.
I dont have apnea but non rem parasomnia, its essentially like watching telly all night as dreams are so vivid. The night terrors are less frequent but sleep walking/talking and I hypoventilate/panic shreak quite often.
Unfortunately even when I have a night without a lot of dreaming I still wake up tired, I don't wake during the night.
russ151 lisa72660
Posted
hi lisa just reading up on the condition you suffer with sorry to hear that medications not worked and it doest sound very nice i think people with m e cfs have no tolerence for stress at all the nervous system seems to be wired all wrong i noticed when i calmed the nervous system down by meditation and actually went to a physio for a while who treated people with m e my body was in a better state to recover that was when i noticed recovering more
lori93950 russ151
Posted
how long did you have it for ? and how did you manage appts ? i can barely make it to the kitchen.
russ151 lori93950
Posted
hi i would say 7 years but 2 them it was gradual at the start until it floored me as your probably aware people have it a different levels my was severe for first 2 years hardly left the house only for appointments .relapsed just recently but im more informed this time the first time i made it much worse by not knowing what it was then trying graded exercise which pushed me back further .
sorry if yours hasnt improved i seem to be lucky in the fact i seem to improve well fingers crossed seems to mild compared to the last time how long have you had m e was yours started from a virus ?
Sockpim lisa72660
Posted
Hi lisa72660,
I've had CFS for about 11 years so far. Contrary to what people have said on here, I've found that small amounts of exercise (by small I mean a 20-30 minute walk) beneficial. It can be a moderate speed or a very slow speed; humans are built to walk long distances without burning much energy, so I found doing this helped get me outside, limber up my joints, help me clear my mind and found that after doing this 2-3 times a week, I had a little increase in my overall energy.
As much as people will either disagree or not want to make the following commitment to their gut/diet, I've found that since going vegan (about 7-8 months ago), my lifelong constipation/IBS has stopped, my joints feel less achey throughout the day, I have a little bit more energy than I did before and I am able to concentrate better.
lisa72660 Sockpim
Posted
Thanks very much Sockpim, its good to know.
I plan to try and implement a regular weekly swim, I guess its a case of listening to my body!
I'm not sure I can go vegan but definitely looking at a more Mediterranean diet.
I'm lucky to work from home so atleast there's no commute to deal with!
Beverley_01 lisa72660
Posted
Hi Lisa,
Most folks I have talked to with cfs/me were really active beforehand. I got mine from a car crash and after 3 months in a back brace, I carried on, gym, Pilates, yoga and swimming because I didn't have a diagnosis and felt s**t all the time anyway. believe me, if someone had said to me you need to rest now so you have a chance at recovery later, my oh my would I have wanted to listen. As it is, I have stopped everything a couple of years back because, I really believe that for my mind to be less of a mess, I have to be less active. to be in less pain-I have to be less active and to be able to manage the basics -you got it, less active. I didn't choose cfs/me. I haven't chosen less activity It is neccessity not choice. my diet is also near vegan and I take an iron suppliment called Feroglobin. I rest as much as I can. if you feel you really have to exercise right now even though it is exhausting you, then cut something else out of your life that you enjoy doing because, I find, in my 7th year of this, you cannot have everything as it was. If I watch a couple of dvds then, I have to retreat as I feel awful. if I wash up I have to retreat because I feel awful. If I power through then , well last time I tried swimming and I mean real gentle swimming with rests inbetween, I had 10 days recovering. The physio told me I am already doing too much which is the issue for most people with the condition -our systems are now easily overloaded. My own situation is I am a single mum with four children who are older but you're still mum!
if you're in the UK, ask your gp for a referral to the nearest cfs/me specialist clinic for advice for yourself and family/friends.
People do recover so don't give up hope of that but, like Russ says, listen to your body and be gentle with yourself.
Beverley
lori93950 Beverley_01
Posted
you cant do anything ! i had a manicure pedicure and relapsed the next day . i was doing well jan feb with long walks and some light weights but then had one evening out home by 8pm and relapsed again .
so basically you just have to lie on the bed all day do the minimum around the house and spread things out over the week just doing a bit everyday .its no life whatsoever !!!
lisa72660 lori93950
Posted
Thankfully I'm not that bad, I had to get into bed the other afternoon as my legs felt really weak but its not stopping me from working. Luckily I have a full time 100% work from home job which is a god send.
For me its constant tiredness day in day out and the effect it has on a trip to the shops say...Ive not been bed bound as such so I think its more a mild CFS than some of the other stories here.
lisa72660 Beverley_01
Posted
Thanks for your advice Beverley, my GP will arrange a referral I believe she's looking at clinics for me and I am due to see my sleep specialist as well.
I'm sorry to hear how its affecting people on here and I feel lucky that I am not suffering with an extreme case.
Beverley_01 lori93950
Posted
Hi Lori,
Yep! I have the hairdressers tomorrow and I am just hoping I don't pay for it too badly over the weekend.
Beverley
Beverley_01 lisa72660
Posted
Hi Lisa,
I'm Glad you have a pro active GP and I hope the sleep specialist is helpful.
People have varying degrees of cfs/me and it could be you have a l milder form. The Feroglobin might help you with the tiredness-That's it's selling point anyway. I go for the iron with vit d and guaranga too -to touch all basis as it were.
Beverley
Sockpim Beverley_01
Posted
Taking an oral (liquid, not pill or tablet) form of B12 and iron at the same time complement each other too 😃
Beverley_01 Sockpim
Posted
Feroglobin has b12 in there in liquid form too 😃
lisa72660 Beverley_01
Posted
amazing, although of all these levels show as fine on a blood test is there a need to boost?
Sockpim Beverley_01
Posted
Ah I see, that's good then 😃
Beverley_01 lisa72660
Posted
I did even though tests appeared normal. I think it helped me but cannot explain how? Just didn't feel as "zombie "