Last reply 6 years ago
Fatigue

Im really struggling with fatigue again and feel like I do nothing but sleep. What I’m wondering is how you all cope with it if you struggle too. I went for VEP’s this morning and then went in to work to have a catch up with everyone must have been out maybe 3 or 4 hours, I’ve ended up coming home and couldn’t fight the sleepiness. I’ve woken up on the sofa AGAIN after sleeping for 3 hours. What medications are you on and/or what can you recommend to fight the fatigue? It’s really starting to get me down.

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ophelia
6 years ago

And also did you ask for the meds or were they recommended by your neuro?


DJDsouza
6 years ago

I take Calcium and Magnesium EAP salts after they were recommended to me by an osteopath that read through trials in the Lancet medical journal. Without creating a genetic clone of myself and not allowing them to have these salts, I can’t say for 100% that they made a difference, though this link may help http://www.health-science-spirit.com/EAP.html (I don’t suffer from fatigue)


DJDsouza
6 years ago

…and diet is very important. Organic veg, good. Pasta, very bad.


stumbler
6 years ago

@ophelia, don’t fight what your body is telling you. You have to live with MS, not fight it tooth and nail.
So, go easy on yourself and see if you can allow yourself to catch up and recuperate.


jenko1972
6 years ago

Hi

I found taking vit d helped my energy levels made me feel less tired.

Best wishes
Neil


chueykooh
6 years ago

When i was first diagnosed I was offered a narcolepsy medication. I never took it and I’m not sure if that’s what they still prescribe but it may be worth looking in to?


Anonymous
6 years ago

The neuros do have new meds they use for fatigue, but the side effects are a little scary. I opted to not try them because they would be worse than the fatigue. The fatigue is hard, but you need to listen to your body right now. I fought that for too long for various reasons. The more I didn’t listen to what my body needed, the more fatigued I became. On days when I have more energy, I do more. Re-prioritizing is huge. If it doesn’t need to be done right now, don’t do it. It will wait. MS fatigue is very real. I try and fight it with supplements and exercise.


lottie
6 years ago

Fatique is my main sym. Only a long time after my diagnoses I have accepted it. Before I was (accidently)diagnosed I felt useless and guilty for being listless and after diagnoses it made me sad and was always going against it which offcourse only made it worse. I now take it easy have regular sleeps during the day. Don’t do evening outings on “school nights” always have a 9+hr sleep at night. don’t fill my weekend chocker block with outings, chores. ( to great delight of my hubby) and have pj days on sundays somtimes (been the perfect summer for it 🙂 if i do have an allnighter I make sure I have got norhing important to do the next day and know i’ll “pay” for it in the week. My hubbie now understand when I say i’m tired i really am so tired. He now often sends me for a nap himself 🙂


Anonymous
6 years ago

I suffer from fatigue too. Both the “I can’t keep my eyes open” type and the muscular fatigue where my body gets exhausted after movement. Both are frustrating and hard.
Doesn’t help that pain and spasms keep me from sleeping as well…which only compounds the fatigue (which I had before and experience without the insomnia as well).

Not on any meds (yet) due to lack of a dx (for the moment) but the only thing I have found is rest. Lots of rest. Sleep or just a chill day reading or whatever. I’ve noticed that pushing myself not only makes the fatigue worse….but the worse the fatigue the worse my other symptoms become as well. I’m guessing due to the physical stress it induces.


lloyd
6 years ago

Fatigue is the worst for me some days I can get by with 8 hours of sleep but most days I need 10, and then I wear downs quickly. If I go out to a store by the time I reach the back isle I’m worn out and need to sit for five minutes or more.
I have heard people say B viamins are good for energy but I have never tried that yet.


boodle06
6 years ago

Being undiagnosed I think I can say I have had this once a couple of weeks ago and it lasted 10 days or so. One minute I would be fine, but then all of a sudden it was as if someone had drugged me. It felt very different from usual tiredness, my eyes weren’t tired by my head & body felt completely useless, felt dizzy when walking around. My mum said when it happened my speech was alot lower. I haven’t had it for a couple of weeks now touch wood. For me I’m scared to go to sleep encase something happens to me so I try & stay awake, probably the wrong this but I’m too anxious.


kraheera
6 years ago

The med I’m on for fatigue is Amantadine. My neuro prescribed it for me last month since Fatigue seems to be one of my big time issues. It has certainly helped a lot… though I still get a day here or there where I crash. Still, I’m mobile and functional more often than not these days, so that is a BIG improvement for me.

You could always talk to yours about getting it. Mine has me on 100mg pills twice a day.


lulu
6 years ago

My neuro just put me onto Amantadine as well, as the fatigue has got sooo bad!! I didnt want to go on any medication but it got to the point where i was like aaahhhhhhh i cant do this anymore!! Im also doing yoga a few mornings a week and find this gives me more energy throughout the day! Good luck


Becks
6 years ago

hi i was on amantadine on and off for years (tried to use diet and exercise in the early years to help fatigue) and in last few months am on modafanil – its like rocket fuel for the brain!!! my cognition has returned to a level of about 8 years ago (as fatigue was affecting me mentally and physically) – i still have physical fatigue but a different problem that my body cannot keep up with my head now so learning to re-adjust all over again. I now feel i deserve my fatigue as i do lots of things – working 3 days, and a busy social life, whereas before modafanil i could lie for 8 hours on the sofa and feel as knackered as i do now when i’m busy doing lots of things so i put up with fatigue as i feel its slightly more justfied again now in a weird sort of way – i’ve suffered fatigue now for 19 years now so kinda forgotten what its like not to function without fatigue?!?!?!?!


ophelia
6 years ago

Thank you all for your suggestions, I see my MS nurse next week and possibly the neuro soon after so I’ll talk to them about what they think is the best option! In the meantime i’ll kick back and chill!x


cameron
6 years ago

Remember that MS symptoms come and go. I had fatigue during my first (and only) major relapse. Just as you describe it. It was like the moments after you’ve been given the general anaesthetic and are told to count to ten! But after I was dxd and started on the DMDs it has never returned. I get tired and sleepy but that’s not the same at all. So, as Stumbler says, don’t try and go against what your body is telling you. With any luck, the fatigue will diminish once you’re properly sorted and in treatment.


Gingus
6 years ago

Hi all, I take amitriptyline and baclofen to try to keep the itchy & twitchy feet at bay but usually by the afternoon my cognition is deffinately impared and when I get home from work I struggle a lot and fall asleep on the sofa. Just last week had to take a couple of days off and just slept through. I’ll be trying the (no pasta) &(vit D) to see if it helps but I think I’ve been lying to myself for quite some time now about how badly fatigue does affect me, mostly because at the moment I’m the bread winner in the house! Physically I can push myself but what I want more than anything is to stop being mentally tired and grumpy with it!


richi1990
6 years ago

hey! at first i was using amantadine, then i changed to modafinil and it really works, it helped me a lot!


richi1990
6 years ago

i started to use modafinil some months ago because the drug didnt come to my country until 3 months ago, but it is way better than the one i was using before


Anonymous
6 years ago

I have fatigue daily and have had for the last few years, gradually increasing in amount of time I am fatigued and intensity until about six months ago when it got to the point that it was taking over. I fought it all the way, feeling guilty for needing to rest, not having enough energy to do the things I was use to doing, until I finally came to terms with fatigue being a part of MS and one I needed to learn how to manage, not fight against. Now, I, like others have mentioned, recognise that I only have a certain amount of energy (physically and mentally) each day and I have to choose what things I will and can’t do and allow my body to rest when it needs to. A lot of times I can stretch out my energies by not allowing myself to become over stimulated in all my sensory areas at once. So, if I am typing on the computer, am not trying to sit up at a desk, listen to music or watch television or carry on a conversation along with my primary task of typing. If I do get over stimulated, I “turn off” everything and just lie down in quiet allowing my senses to recharge. If I decide to go out to the shopping centre for a coffee with my husband then I know that between the lights, the noise, the stimulation of all the people, conversation with my husband, physically lifting up the coffee cup and drinking or eating, etc etc is going to wear me out in a matter of hours, but it’s worth it to me so I just plan that the rest of the day is going to be one of “down time”. Anyway, that’s what I have learned and it is working for me at the moment. 🙂


Anonymous
6 years ago

@maggie – your experience sounds amazingly familiar. Its only been a year and a half but my fatigue has just been growing worse and worse. This past week alone I can’t get more then a few hours of activity without being extremely exhausted and something simple like a quick grocery run makes me need to sit down and rest. I haven’t gotten to the understanding and accepting part…although I know I’ll have to at some point.
I work part time right now…and after the next two weeks I’ll be working full time….so my activity load is only going to get more demanding. Quite worried about it but don’t have much of a choice.

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