New to the forum but would love some advice. I was diagnosed with MS five years ago and have been lucky with only one or two episodes a year, mainly sore legs. However, over the last two weeks I have become increasingly tired. Its not just normal tiredness that after a good nights sleep goes away, this is bone weary and mentally tired and I just cant seem to get on top of this. Can anyone tell me if this is part of the MS and is it classed as an episode and eventually go away.
Hi, I find the fatigue gets worse when I turn the heating up. Woke up this morning and was really struggling. Just wanted to go to sleep. Then I remembered the heating was set to 21C because of the cold weather we’ve had, but it’s now milder outside. Turned the heating down to 18C, opened a window for 5 minutes and now I’m a lot better. Also suffer with heat fatigue in the summer. Great, eh?! Also have a think about what you’ve been eating. I always suffer after eating meat. I think it’s something to do with the amount of energy the body needs to digest it. Heather
Are you actually sleeping more or just tired? If you’re sleeping more hours at night or in the day, you might try Modafinil (think that’s the right name, could be Modanifil), Someone I know has been on it for years and it has changed her life.
Both tiredness and needing lots of extra sleep can be symptoms of MS and like other symptoms they can come and go or just stick around for ever.
Sewingchic - is it still possible to obtain Modifinil?
I mentioned it to the medics n they said it wasn’t being prescribed for ppl with MS no more. I was really gutted as I wanted to try it as lots of ppl say that their fatigue was dramatically reduced.
It is getting more difficult to get a script for Modofinil Anna but it’s worth contacting your neuro and asking. The other med prescribed for fatigue is Amantadine so if you can’t get one you may be able to get the other.
I was lucky enough to to get Modofinil and whilst it really does help with my ‘brain fog’ and perks me up a bit, I don’t find that is terribly effective against the physical effects of fatigue.
It may be worth getting your bloods checked (vitamind B, D and iron levels) as fatigue can be a sign of a deficiency and this can be corrected with supplements.
If your bloods are fine and it doesn’t go away then I’m afraid that the only thing I can suggest is learning to pace yourself, by which I mean using the energy you do have in the most effective way by rationing the amount of activity that you do. Your MS nurse should be able to refer you to someone who can help with this.
Yes I tried the Amantadine but i may as well have taken smarties, the good they did lol!
I asked MS nurse about Modifinil but she was the one that said I couldn’t get it as like I said; they weren’t giving it to MS ppl no more.
However, Im a little peeved off as I can clearly see that ppl on here seem to get it no problem. Think I will be definately ringing her tomorrow after reading on here. I don’t even know if Modifinil will work for me and the fatigue but I think that I should at least be able to try it. Especially as the MS community seems to have access to it
Are their any side effects that I should know about as to why she won’t let me have it, do you think?
Hate this fatigue n poxy brain fog!
Its really grinding my life to a halt as I want to go back to work ASAP and just feel like im living my life and not a sightseer, watching it all go by.
I saw my neuro in October - he’s a really good guy, recommended by the doctors that run the neurology department at Edinburgh University and he is at the National Hospital for Neurology and Neurosurgery. What I’m trying to say is, he really knows what he’s talking about when it comes to MS.
When I talked to him about my problems with tiredness and excessive sleeping, he was really clear. He would not prescribe Modafinil for tiredness, but he would prescribe it for excessive sleeping (it’s actually a drug for narcolepsy). I was sleeping for a couple of hours in the day some days and still getting eight hours at night. So for cars1808, if your experience is really different to that, sorry if I’ve started you on a wild goose chase.
I’m a new to the forum and WOW what a relief to be able to hear of others who are going through the same thing. I live in a small town in NZ where other MS sufferers are not very accessible.
I’m 2-days into a pretty intense bought of fatigue, and I guess like a lot of symptoms, it can be equally a psychological as a physical battle. 2-days isn’t long in the scheme of things, but when you work full-time, live alone, and pre-DX was a must-move-all-the-time person, it’s the symptom that I find the hardest.
I’ve found that giving myself permission to rest, and push back on other people’s demands is the best way to get my head around it. Otherwise it’s just seriously seriously frustrating.
How do other people with children, and patners even do it? My total respect to those who do so much more than I do