@LizP

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LizP

MS fatigue - What's it like for you?

What does MS fatigue feel like for you? I’m still new to the MS dance and still getting used to the dance steps, so I’m still trying to figure out what is or isn’t related to MS. For the past few days I’ve been feeling tired and seem to wake up tired, even after having (seemingly) slept all night. Today has been especially difficult and I’m having a hard time getting through the day. I feel sluggish and my head is really heavy. I feel sleepy without really being sleepy (if that makes sense). Normally, I’d think I’m just coming down with something, but I don’t seem to have anything else indicating a cold or a flu. I’m now wondering if it could be just general MS fatigue. I’ve also noticed that my Lhermitte’s sign (buzzing and tingling in my tailbone area when I bend my neck forward) has been coming back now and then, after having completely disappeared for about a month. Any thoughts?

Stumbler

@Stumbler

@lizp , that does sound like MS Fatigue. There's some information on it here, https://www.mstrust.org.uk/a-z/fatigue . Is it getting hotter where you are? Heat could be a factor as well, as fatigue can be adversely affected when your body temperature increases. See Uhthoff's phenomenon , https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon . I wish I could suggest a magic pill to tackle this fatigue. You could try talking to your Doctor about Amantadine or Modafinil , which may help.

potter

@potter

You have describe how I feel when I have fatigue, fortunately I usually only have it for a day or two. I usually don't try to accomplish anything that day, I am lucky if I get my clothes changed and something set out for dinner before my husband gets off work. Potter

cherish

@cherish

Lol @the dance steps! Hi there @lizp Hope you are wellish today? Fatigue. My explanation is fairly simple..... My head says 'yeah, no probs' but my body tells me to 'piss off'. Le hermetts, I've had it since diagnoses, or even b4 but I suppose I quickly learned not to have my chin near my chest (apart from sneezing, that seems unavoidable). Or when I had an endoscope I had to ask if they could do it with my neck straight (they did). Uhtoffhs I get in the shower most days but I have a seat in bathroom so I just sit till it passes. No good weather here normally to increase my temp so shower gets the blame. And as the Oracle sez 'modafinil or amantadine'..... I've not tried amantadine but I was on modafinil for a number of years. Dick called it my 'legal speed' so yeah, if you can get one of the two I'd like to think one of them will help with fatigue. I hope you have a good weekend. Take care. Lisa xxx

holly12345

@holly12345

Hi @lizp I suffer badly with fatigue and get very little done because of it. It feels like I'm carrying around lead weights or walking through treacle!! I get the utoff syndrome also from as little as a bit of movement ? Hey @cherish I was prescribed Modifinal for my fatigue and so excited to get it and for it to help me but I just couldn't tolerate it. I persisted with it for 2 weeks in the end but that entire time, it made me feel sick, bad headaches and still same level of fatigue. I was gutted ? I see my neuro in sep so will ask for the other one you mentioned ? Rebecca x

isaacson72

@isaacson72

I never know if I have MS fatigue either, or if I'm just tired/stressed from being busy at work & having a teenager. I always seem to be tired, even though I sleep well. I take medication for headaches at night that has a small sedative in it, so I sleep very well. There are some days when I am tired, others when I'm really dragging. Could be stress, could be MS, could be my headache medicine (which works, so I'll deal with the sleepiness if that's it). No clue. Only a handful of times has it ever been debilitating. And it's so hard to explain to people, even my husband, just HOW tired I am. So rather than try, I just don't, and that usually bites me in the butt the next day.

Rosscoe

@Rosscoe

Fatigue is at least an occasional issue for all MS sufferers. I have had RRMS for 5 years - Copaxone for first 3 and 1/2, Tecfidera since. Meditation is part of my regime, and fatigued is a good time to meditate (what else can you do anyway?). In Australia lots of us follow overcomingms.org by Dr George Jelinek (who has had MS himself since 1999). Vit-D3 seems to be all important and I supplement with 1000IU tabs to try and keep my 3 monthly bloods above 140nmol. Otherwise whenever you can: exercise by at least walking as much as possible(it's good for you anyway). Hope that helps ?

cameron

@cameron

I am blessed (well, all things being relative!) in not having MS fatigue as one of my symptoms. But I did get it during my major relapse 12 years ago. I can only describe it as feeling as though I'd just been given a general anaesthetic - you know, the moments after the anaesthetist has given you the shot in the arm and tells you to count down from ten.... When I was going through the relapse, I only had to lie on the settee and close my eyes and I was asleep in seconds - literally.

dreamcatcher

@dreamcatcher

Hi You describe exactly the way that I feel when I have fatigue. I will go to bed at a reasonable time and wake up like I haven't slept all night it is horrible. I am going to talk to my neurologist when I see him in August. Maybe there is something he can prescribe something that can help with it.

LizP

@LizP

Thanks everyone for all your input. It's really helpful to hear from others who have been here before. I'm still learning to listen to my body and figure out what it needs. I'm feeling so much better today. Yesterday really felt like I was drugged or something. Maybe it was the heat, maybe it was just the end of a long week or maybe it was the MS peeking out to say hello. Whatever it was, I'll now start to pay more attention to it. Looking back to before the dx, I now realize I've had fuzzy days like this in the past year. Days when finding he right word, even though it was right under my tounge, was hard. I'm seeing my neuro this week and starting treatment, so I'll be asking her about all of this as well. I love how everyone is so helpful and supportive on this site. It's really nice to know there are others out there ready to listen and help when there are so many questions in our minds. Thank you everyone! Hope you all have a great day! ?

simone2

@simone2

Hi, since I started taking Blackseed Oil my fatigue isn't so bad after a few minutes rest with fatigue I feel better.

vasy

@vasy

Hi @lizp Ask your neuro if he could prescribe you alfacalcidol (this is synthetic vitamin D which is considered more safe than D3 due to a lesser effect on calcium) There is some evidence that it is effective in MS related fatigue http://www.ncbi.nlm.nih.gov/pubmed/25344375

hollylb10

@hollylb10

When I am suffering with fatigue I say I am a monged out! I literally just have to sit or lie down, not talk, not move and just stare at the TV (this is usually in the evening) The thought of putting any effort into making dinner or sorting the kids out just makes me want to cry. What I do find though is that if I HAVE to do something, like go and pick the kids up from school, I get some energy back on the walk. I have been told that if you can try to do something even though you feel you cant it can help. But never over do it! That may not even make sense as I have just been away all weekend on a hen party and can feel the fatigue kicking in.....I get cognitive issues too....a conversation would exhaust me completely.

jcunni20

@jcunni20

Hi lizp, as I'm learning how to explain my daily feelings to my family...fatigue for me on the worst is my body feeling as several blocks of concrete are attached to all of my limbs. Having kids has made me find ways of letting people form pictures of my days at its worst. Good luck, one day at a time!

Stumbler

@Stumbler

@jcunni20 , Use this list of analogies to use with the family:- https://shift.ms/forums/topic/describing-your-ms-symptoms

julsie

@julsie

Hi all this is the first time I've sent a message here. It's a hot sunny day here in Edinburgh and the park I live close to is full of people enjoying themselves in the sun. I just came home after meeting friends for picnic because the heat made fatigue and tingly feelings were making me crap company! Does anyone else hate the way summer makes them feel antisocial?

RedSuzuki

@RedSuzuki

oh boy..what your describing.....its like a mirror image...spaced out,,, but slept well, buzz down spine when move head forward, legs like solid rubber, head is really heavy....mind you still real felt the nettle sting on top of foot... move to go ouch....leg fatigue & most bits between, damn reality hits home.....obviously I was imagining the sting....truely hope day is good for you @lizp