Just a quick question about fatigue and MS. What does it feel like for those of you that get it? I only ask as the last 3 weeks I’ve been feeling really exhausted by the time I hit 3pm at work. I find it really hard to focus and it’s a physical concious effort. If someone gave me a bed I could quite easily sleep. I manage to trundle through and then feel a bit better when I get home and relax a little. I just feel like everyday is this repeat pattern and even going to bed earlier doesn’t seem to be eliminating it. The only time I’ve felt somewhat less fatigued is over the weekend when I’ve had lie ins and not been doing too much. Though saying this I’ve got a busy few months with wedding venue viewings on weekends and without a car it’s going to be much more tiresome. In addition to this my numbness and pins and needles which had completely gone have now reappeared in hand and leg. My foot currently feels like it’s in an ice cold bucket. So not sure if this is a sign I’m ill or going to be ill or whether it’s going to be a full blown relapse.
It’s not unmanageable - but I guess I can see the contrast compared to a few months ago where I’d gone away to Blackpool travelled had lack of sleep and felt normal no fatigue. I just wondered what other people’s experiences were?
I too get that 3pm feeling!!! The total exhaustion where you just need to lie down and have wiff!My legs go heavier than normal at that time too and my arm and hand start playing up with the pain and numbness. Are you taking any mediaction? also are you dx yet?
I’m not on any meds at the moment. When I had my first two episodes pain and spasms was my major issue so was on painkillers. Most of my other symptoms (bladder/bowel/ numbness/ etc) I managed with as they were on the milder scale - though I had a few moments where I almost peed myself!
I’m not diagnosed - had 2 MRI’s with non-sepcific sub-cortical lesions and clear blood tests. I changed neuro’s in the middle as my first one was naff but by the time I was seeing the second one I was feeling better. She thought it was MS as all other things had been ruled out but couldn’t diagnose as MRI not conclusive. She offered an LP and EVP but said if would only give me a probable MS diagnosis if they picked up anything, and I wouldn’t be eligible for DMD’s as my symptoms are on the milder scale. So on that basis I opted not to have the tests and wait and see if I get any news symptoms. I have another review in March.
I’m also a limbolander!! Started with pins and needles in left arm around 3-4 yrs ago, since then:
1 bout of ON
tingling and numb lips, cheeks and tongue
weakness of arm and hand and pain in both along with tingling
heavy swollen feeling(not actually) numb legs and feet.
I’ve had 2(or 3 my memory is another thing that suffers!) mris, a lumbar puncture and blood tests ,now got another mri next week and the results at end of month- so hopefully will now more then!I was told in last apt, that whatever latest mri did or did not show up that I should also have another lp;something that I really need to give some more thought too as If it cannot give a defo dx why put myself through it.
I get it at 4pm! I start yawning like crazy and could very easily lie down and sleep if I wasn’t working in the shop between 5-10.30 on weekends.
I find if I go for a walk in the afternoon, it makes it come on faster so I’ve stopped leaving the house in the afternoons now (unless I’m going shopping for shiny things)
it’s possible your other symptoms like the cold foot might get better, my symptoms seem to swap around on a regular basis!
good luck with your diagnosis, fingers crossed it’s not serious for you
The feelings you have described are how I feel most of the time - tend to get my energy back on Sunday for a bit (due to resting) but that is how I feel. I usually have to come home and sleep for a couple of hours on a Tuesday then do same on Friday before my proper evening starts. This Tuesday was particularly bad as I couldn’t focus at work, got home and lay down - EVeRYTHING was buzzing and felt like I was gonna die (how dramatic!) then I went to sleep and woke up feeling more like myself after 2 hrs.
Feeling rubbish (weak and tired) today and crying at everything… what a mess?
Look after yourself, especially if wedding planning! Something to look forward to (yay!) but also a tad (grin) stressful! (boo)
I’m with Andy on the thought that it might get better - I get those random things but they don’t seem to last long.
I’ve just ordered a tonne of vitamin d3 and cod liver oil off Holland and Barratt (enough to last me till I am old!). Maybe that will help me feel better? (just ordering has given me a bit more feeling of control. ;0)
Take it as easy as you can and good luck with yr wedding planning.
Andy I’m with you on the yawning - I wake up and I’m yawning at the mo and it gets worse as the day goes on!
Still not sure whether this is just aa blip or whether I’m having something new. Fatigue is still there, pins and needles/numbness spread to right toe now as well as my L leg up to mid thigh and my L arm up to about elbow (which is what I had before) and tongue. Bladder seems to be starting to play up at night again. I feel like I need to keep going though I’m no where near the scale of what I was like before where I woke up to 6 times a night to go. So essnetially no new things but just all the old stuff creaping back - trying to get lots of rest. Taking the weekend off venue viewing (as you said TF - it’s exciting but tiring planning a wedding). Crazy week at work as have students and teaching them on anatomy - digesting anything I’m reading seems to be taking me ages at the mo so I don’t know how I’m going to teach them! On a positive I’m no worse than I was a year ago and got through it so just hoping it all blows over.
TF - I hope you’re feeling better this week. It’s alright to let it out once in awhile. I think we all feel better fter a good cry when things get too much.
Beth - good luck with the MRI let us know how it goes.
The fatigue that I have experienced (still do at times) is both mental and physical. When I experience mental fatigue it’s a struggle to keep my eyes open no matter how hard I try to keep them open I end up falling asleep waking up and still fatigued.
As time progressed I also started getting fatigue in my muscles basically when doing an activity for example walking my leg muscles would become exhausted. I’ve also had the fatigue in my arms as well at times I’ve had to be fed due to the fatigue I was not able to feed myself.
Somedays I would describe myself as a zombie due to the fatigue. Having a bath for me is the worst trigger for bringing on a attack of fatigue which can last several days. I use cooler water now.
I am undiagnosed and on medication (Modafinil) for fatigue which has been very helpful.
I hope you get some answers if you are still under the care of a neurologist.
I’m also in limbo land and your 3 o clock slump sounds so familiar. It’s so bad I’ve had to ask my folks to have my daughter for a while so that my body can catch up. I feel like the world’s worst mother but as a single parent it’s better than her coming home from school to a comatose parent., and burnt offerings for tea as I’ve dozed off again. No matter how many hours I sleep, 3 pm is deadly. Any advice would be welcome.
Sorry you also experience the 3.00pm slump. For me it feels like you have to make a real effort to keep your eyes opened and focused. I find the only way I can keep going is to take frequent breaks and try and finish work on time and go straight home. Anything social after work even if I get to bed on time seems to just drain me - there’s been a few times I’ve felt like I could almost fall alseep at the dinner table.
Trying to make sure I’m in bed on time and then extra lie-ins over the weekends as the 7-8 hour sleep i get monday to friday is just enough to keep me going. And when I’m feeling at my worst staying home over the weekend. Last week was quite bad I think over did cleaning but I made a point of not doing anything this weekend and just relaxing (I guess it’s easier as i don’t have children at the mo). I’m feeling abit better but lets see how today goes.
I think getting your folks to have your daughter for a few hours is a good idea and no way are you a bad mother. The attention you give her once you’ve had that bit of time time to recharge will be so much better than struggling and having a tired stressed out mummy. The advice most people tend give on here is to try and pace yourself and take a break before you hit that slump. bit difficult when you’re at work but I’m trying. Maybe that’s what you need to do and try and have a power nap. I know there are meds for fatigue but there are times where I do feel fine so I’m not anything.
Crazy to think that last year july-sept I was flying away almost every weekend and did not feel tired in the slightest and 3 years before that had a full time job travelled 4 hours a day, studied for my masters and survived on just 5 hours sleep.
Hope you find some way to combat your fatigue but maybe if you are struggling even with taking breaks etc it’s worth speaking to your GP.
