How badly is everyone else affected by fatigue? How does fatigue affect your symptoms? I’m particularly interested in the difference in altered sensations and muscle strength. I went to the Paralympics on Monday and coped very well although I took things very slowly and was exhausted at the end of the day, each step was like climbing a mountain and I wanted to cry with exhaustion at times. I found taking the maximum amount of meds I’m allowed, drinking and eating more regularly and pacing helped me get through. Since then the fatigue has been unmanageable and just walking from the bedroom to the loo seems like a marathon. I’m achy, tingly and can’t get rid of this heavy dragging feeling in my limbs. My concentration has gone to pot too. On top of that I seem to have lost all control over my bladder. This morning I was laying flat in bed and realised that my legs and core were weaker than ever as I couldn’t lift my legs up off of the mattress at all no matter how hard I tried, I’m also finding I’m unable to bend over with out holding on to something for balance and even sitting unaided is hard and exhausting. I realise I’ve brought this oneself for trying to have something that resembles a normal life but how long is this new low going to last?
Hi again, Tab, I think most of us are quite badly affected by fatigue. It is such a debilitating part of the condition.
The other day, I peeled some spuds…hadn`t done that for a long time…and my arm muscles ached so much.
It makes us appear wimpy sometimes, but is a genuine problem. After a few hours out, I go home to bed!
There aren`t many meds for this. I tried amantidine once, but it made my constipation much worse.
Some folk swear by LDN. That
s a drug many of us have to buy privately, which most GPs/Neuros wont prescribe.
So sorry Tab. Fatigue is a major symptom for me and makes everything else much worse. I push myself to the limit but then seem to hit a brick wall and need to rest NOW. If I’ve become especially tired it can take me days to recover and during that time it is an effort to get out of bed at all. It is incredibly frustrating and really worries me because it makes me realise I could not cope on my own. I fear loss of independence.
I think you did amazingly well to manage a whole day at the Paraolympics, be proud of yourself and rest up until you feel better.
Thanks both of you I feel so pathetic at the moment, an afternoon out leaves me f****d for days and I really thought my symptoms were starting to improve as well I find the idea of going out somewhere new really scary these days. I’m starting to panic that these symptoms might not improve and that I’m going to keep declining.
I see that you have another post re: continence.
I think its vital that you see your GP as it could be a water infection that is exaccerbating the fatige also.
Please try not to let your embarrassment get the better of you…you can see how many of us are out there responding and chatting about this sort of problem.
I was on the improve and I picked up an infection and though I was going right back to the beginning. Given that I’d been off work 6 months already I was feeling pretty black.
As soon as the GP treated the infection I started to pick up again straight away…and I hadn’t gone back to my illest/lowest point.
I have to say fatigue hadn’t been too much of an issue for me apart from when I was falling ill. The last two occasions I’ve fallen ill a week before I’ve felt seriously pooped and fighting to get enough sleep, a real battle.
I tend to not over do things and spend most of my weekends catching up on sleep and doing low key stuff. I’ve not been feeling too bad at the mo considering the stress with my personal situation and have been working fulltime too.
Today however I had a presenting with confidence training and then an IPL patch test. I guess maybe a lot of stuff all at once- I was up and down out of my seat on many occasions then walked extra for IPL. I came home severly pooped and in pain. I ate and then fell alseep for an hour and have now dragged myself out of bed as I have to do a presentation for the presentation skills training tomorrow but am feeling very lethargic.
So today - the fatigue is definitely with me. I just hope it’s because I’ve over done it and not because I’m falling ill yet again. Even more so I hope I’m alright tomorrow as if it has taken it out of me with just todays session what will I feel like tomorrow!
I think an early night once I push out this presentation. How crazy that a simple exercise of getting up and down and talking to people can ware me out so much.
So I have no advise as it’s not something I’ve had to battle with regularly but I can utterly sympathise. It makes you realise you’re not invincible and a sign that your bodies telling you to slow down, stop or get some help. Feel better soon Tabitha.
I too joined your club this week,but embarressingly it was during balance clinic at the day hosp that the legs said…no thats it i’m not playing anymore…I walked in fine and left in a wheelchair.
I think it scared the life out of a woman who had joined that day.
Anyway its now 3 days on and I’m back to being wary of my legs and balance,and the fatigue suddenly floors me.I had been loads better than I have been for months.
I totally understand your fears of going somewhere new,or places you usually go to because of not being sure if your body will behave.
I fear if I try I might end up stranded somewhere,or sectionned because I will be wandering totally unco-ordinated but if I dont try I will become a hermit and lose all the strength I currently have.
The hospital balance clinic with the physios was supposed to build up my core strength,help with fatigue through exercise and increase my confidence in myself…after 7 weeks of that this one week has sent all of that out of the window.
So any ideas Tabitha and we can get the better of this together??
Mind you you do def need to address the bladder issues first please get a sample tested. My gp referred me to a continence nurse who comes to the house and is lovely.No need to be embrassed as it is what she deals with everyday.
Hope today is a good one for you.