I have been diagnosed 7 months ago, and I am still learning. Despite having suffered from fatigue before, not knowing the name of the beast meant that I never really dealt with it properly.
Now, I feel very isolated, as my surroundings do not understand what I can and cannot do. It has also gotten a lot worse recently. So I would really appreciate your help in speeding up my learning phase. I know it’s different for everyone, but understanding your golden rules/learnings for your fatigue may give me a few pointers for mine. So here we go: My burning questions! I understand fully that you cannot give actual facts as answers, and I am really just keen to know what’s it like for you.
Is there a tell-tale sign of fatigue being imminent? Something that will allow you to act quickly and avoid the worst?
How do you rest? I just lay or sit around and watch TV, but am starting to think that this may not rest my brain sufficiently. And I feel no better after it.
It is said that heat can cause a spell of fatigue. I am wondering: Is that immediate? And do I just need to cool down to feel better? I swam in a too-warm pool last week, which may or may not have set it off, but that was 8 days ago. What is the delay between a stimulant (stress, temperature, …) and the fatigue?
They say good diet is important. Now, I’m a vegan who eats fish anyway, which I think happens to be exactly what they are suggesting MSlers do (Haha!), but I eat sweets. Again, what is the delay between eating sugary stuff and feeling shit? Or is that more of a general eat-well-feel-good thing? I’ve heard the insulin drop after a sugar rush can cause fatigue, but that would only last a few hours, I think?
Experience with green tea vs. coffee? Is one better than the other? Stay clear of caffeine or does it work for you?
If you don’t rest, what happens? Does it get worse for you? Stays the same? I’ve been working half days and spending hours on end in bed every day for the last 7 days, and do not observe a change. What would have happened if I hadn’t rested? Hence my question. Not sure I would have had the energy not to rest, to be honest, but I thought one of you may have tried.
Any experience with drugs, alternative medicine? Hypnosis, acupuncture, foot reflexology?
I am on Tecfidera - have you perceived any change in the intensity of your fatigue, if you’re also on Tecfidera? I seem to be a lot worse, but I may imagine things, too. I’m taking Tecfidera for 8 weeks now.
Any of you into sports? I am exercising regularly (low intensity, swimming etc.), but never know if it helps or hinders the fatigue. If I catch it early, I seem to feel better, if I’m too far in (like right now), I think it’s indifferent. Or maybe worse? What is your experience?
Thanks so much! You can see how my head is spinning with all of this, and I really, really appreciate your help in coming to terms with some of the ins and out of my fatigue.
Hello Karin, Fatigue is my biggest bugbear as well ad like you knowing what the reason is has helped no end. A occupational therapist taught me a very important word……………… NO when people ask you to do things learn the word no and stick to it. Imagine a cup/mug/battery and try to keep them half full not empty. Rest after doing something, even if you only manage ten minutes of activity rest for 2 hours if need be. I was also told to rest on my bed rather than sit in a chair and this does make a difference for me anyway. Heat makes my fatigue worse as does stress and any exertion out of the norm, so all I can do is go to bed after lunch and surface again at about 5pm. Not ideal but that’s all I can do at the moment.
I don’t suffer from the debilitating fatigue any more; this change may have coincided with my early retirement from work on medical grounds about two years ago. Before then my afternoons were essentially wiped out by a morning’s work.
I agree with Horsemad that lying down to rest is the best answer. If you don’t wish to sleep then I would recommend listening to music or a downloaded radio programme. I usually find that 30 minutes is about enough, if I do require an afternoon rest.
You seem to be following the Swank/Jelinek model by combining a vegan diet with oily fish. I don’t eat sweets so I am not sure if the extra sugar would affect your alertness. Since moving on from a vegetarian diet to the vegan/fish model, my wakefulness, alertness and powers of concentration have most definitely increased.
Heat is a problem; being too long in the sun can knock me out the next day. Even a too warm shower can trigger the lethargy.
I do supplement with Vitamin D, amongst others, and I also find the Floradix range of tonics very helpful.
As I was diagnosed with PPMS, I was not offered any DMDs. However I do use CBD paste and this is very calming as well as essential in managing any neuropathic pain. I also take a high dose of Biotin to help regenerate nerve myelin sheath.
I do follow a series of exercises suggested by my physiotherapist and these have enabled me to retain a certain amount of mobility. I cannot walk the miles I used to and I must limit myself now to walking around the garden with a rollator. I am happy that I can still achieve this.
I still drink coffee in the mornings; I love the hit. I do however recommend redbush tea as it is caffeine free and high in antioxidants; it’s a good one to drink before bed as it can induce pleasant dreams. The Pukka range of teas is also brilliant.
Take a look at the OMS website, https://overcomingms.org, as it is full of useful information; they will send you a free book on request.
I hope you find your own way of dealing with this.
Fatigue. Everyones different. For me, 2 pm approaches…brain turns to mush, eyelids droop, time to go to bed, or at least lie down and sleep. Out cold for 1 or 2 hours. If I don’t, cognition and decision turns to MUSH. Cannot string a sentence together. Thoughts like, will they notice if I just lie on this park bench, sound perfectly rational to me.
So yes i learnt that I needed SLEEP in the afternoons. Wherever, whenever no exception.
I wonder why we call it fatigue when in reality it’s a period of feeling/being really ill. ‘Fatigue’ implies that after a short rest we may be-all singing all-dancing – I wish!!
Thanks for taking the time to sharing your experience with fatigue! That’s really helpful. Now that you mention it, the heat impact may have played a role in my 8 day-fatigue (first day where I can do normal stuff today, yay!). I wasn’t sure how long it would take to notice an impact, but hearing that for you it’s a day will help me identify when I may have been too hot doing something. I’ll have a look at the Floradix range. Vit D and Biotin are already part of my morning cocktail.
Thanks for the link, too, and I do hope you are keeping as well as possible!
Thank you for your reply and I am keeping very well, thank you, despite the best efforts of MS.
I have been taking 300 mgs daily of Biotin since April 2017. My mobility has not improved but it hasn’t declined either; even if it only slows the progression it will be a benefit. The CBD is a godsend, however, and I cannot sing its praises enough to do it justice.
A possible useful refinement of your OT’s excellent advice: ‘I’m afraid that won’t be possible.’ Can fit the bill even better than ‘no’, when one does not wish to appear brusque. It often does the trick right away, but can be repeated patiently and without elaboration in case of challenge - usually to good effect.
i know too well the lovely challenges of Fatigue and the feelings of frustration and isolation at times.
I find sometimes the fatigue can come on suddenly and is overwhelming other times if I have over done it the exhaustion comes a couple of days after pushing myself. I have to stop everything and have a duvet day.
As for rest I found mindful mediation classes helped a lot and progressed to learning to deep slow breaths calms my mind and body as the qi qong exercises help body and mind. Other times when it gets bad I go to bed and sleep in the afternoon so I can have the energy to prepare healthy meal.
Heat drains me so pace myself and not push too hard but the same when the really cold weather hits that seems to drain me to
I do not know of any magic answers oh how I wish I did.
I understand fully that you cannot give actual facts as answers, and I am really just keen to know what’s it like for you.