My neuro said I should take something( I can’t remember the name) to help with fatigue. She said she’d write to my dr and to pick up the prescription in a day or two. Today I asked about it at my drs and was told they couldn’t prescribe it. It isn’t part of their primary health care and she’s written to my neuro about it. I’m confused. And tired too. Can anyone explain it to me please? Thanks Lynn
Was it modifinil? It’s considered the best drug for fatigue, however it is very difficult to get, and is one of those post code lottery things. My neuro isn’t allowed to prescribe it as MS fatigue doedn’t meet the criteria, so it may be that in your area it’s not allowed either.
Thanks Dan, Do you take or do anything else to try and combat the fatigue? Its hard to understand why in some areas you have access to better care than others and when I try to explain fatigue to friends and family, they think I mean I’m just a bit tired. Lynn
Hi Lynn, Sorry to hear about your fatigue troubles - it’s doubly frustrating when you know that nobody really understands how soul-destroying and debilitating ‘fatigue’ can be. I always thought ‘fatigue’ sounded like a benign bull-shitty sort of symptom - I wish they’d come up with a term that captured how devestating it can be! I suffered badly from it for the first 8 months of this year, after a relapse in December last year. I tried amantadine (also used to treat MS fatigue) and modafinil (I went up to 800mg a day with very little benefit) but they didn’t seem to help. Modafinil is a tricksy med to get a hold of - my fatigue comprised mainly narcolepsy type symptoms and excessive daytime sleepiness (EDS) which NICE guidelines DO allow modafinil to be prescribed for. Like everyone and everything associated with MS, the underlying reasons for fatigue are poorly understood and are likely to vary greatly between individuals. So there’s no guarantee modafinil would help, it didn’t for me. OTC things to try are fizzy vitamin energy drinks such as Berocca Boost, or other ginseng/vit B type combos. I also found the days I took aspirin (600mg twice a day) to be slightly more bearable. The Mayo Clinic in the states has done a lot of research with regards to Aspirin and MS - worth checking out. Nothing seemed to work very well for me. A couple of months after I started Copaxone the fatigue lifted. The ONLY thing different was my daily Copaxone shots - there’s been some studies on Copaxone and fatigue and people often report improvement in fatigue who’re taking it. It’s been a life-saver for me. Good luck anyway, I hope you find something that helps x
Amantadine is another drug that’s used for fatigue. It didn’t help me, but others on here find it helpful. Things I do to manage it include pacing myself, giving myself time to rest. For example, if I was cooking tea I wouldn’t chop & cook all in one go, but start some chopping early. I also cook double of everything so there’s leftovers for the next day. And sometimes it’s good to cook a massive batch of something and then freeze portions for another easy meal.
Talking of food,I’ve noticed certain foods will leave me feeling lethargic - white bread or pasta (I always use wholemeal), or red meat (the more fatty it is the worse I feel). Caffeine often leads to quick crash afterwards, as does sweet things.
Another thing I did for a while was to keep a journal where I reviewed each day & asked myself what were the activities that energised me or felt like they nourished my soul, and then ask the opposite question - what things drained me or left me feeling empty or dissatisfied. Over time I noticed patterns - watching too much telly never did me any favours, or going on the computer straight away when getting home from work. But things that were good for me included engaging with nature, writing, simply taking the time to enjoy some music, or meditation (mindfulness meditation is becoming increasingly common & can be good for both the emotional & physical stuff that comes with MS. So now, knowing those things means I can make better choices about howi to spend my time.
Hope that all helps.
I take modafinil which my neuro wrote to my GP about it is difficult to get prescribed though as it’s primarily used for sufferers of Narcolepsy, I really do feel the difference if I’m very busy. It does screw up my sleep patterns mind.
we should come up with a new word for fatigue.