@Coolfool 

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Coolfool

MS Fatigue

Fatigue research So I got to thinking. Given that MS fatigue is the most complained about symptom, why are more bespoke treatments for MS fatigue not a huge priority? Most MS fatigue treatments are usually originally made for other diseases, ie: Modafinil was originally used to help narcolepsy. I think we deserve a fatigue treatment totally dedicated to MS, (or a defined combination of the best suitable treatments available), It makes sense. My life is ruined by fatigue and according to statistics, it will become progressively worse. I don't feel that MS fatigue is taken seriously enough. "i''m utterly exhausted" Oh that's a very common symptom of MS, nearly everyone gets it.... Why isn't there more urgent research and/ or solutions to such a massive life limiting symptom? Where is my quality of life/ Also, on American forums, (using just one example), huge success treating fatigue has been attributed to the combination of Adderall with Modafinil, Adderal is of course is not prescribed in this country for fatigue. I have spoken to lots of people who say their life has been transformed by the combination, and they get up before 9 am and stay awake all day with no sleeping, they feel normal! To my mind, the MS Societies should use their might to collate and evaluate all the different methods for treating fatigue globally, and pass the vital results on to us and our doctors. After all, is knowledge not power? My fatigue is destroying my life and I think the MS Websites should address this crippling affliction more. It's 2020, why on earth with all the research, donations and medical advancements available in the world am I not awake? It’s a basic but essential right of life to be awake, yet we are left to suffer and just get on with it? Can we all please rise up and demand bespoke treatment / research for the treatment of MS fatigue specifically? This is no way being taken seriously enough, and it beggars belief that MS related fatigue has no new drugs or any form of possible bespoke treatment soon to be available, even on the horizon. WHY?
@Will_Berard

You have a point, but I think you mean "medication" where you used "treatment". Modern Pharmacopoeia has got us in the slightly illusory habit to assume that a treatment is a pill one can take, but a lot of symptoms do not work like that. The best way to treat fatigue is by a treatment consisting of lifestyle intervention, fatigue journalling and energy management. Stimulants obviously work, but they can be a bit of a false economy or a double edged sword. Making the engine work more efficiently doesn't increase the size of the gas tank, so to speak. There is a reason Modafinil or Amantadine are not officially indicated for MS fatigue, and have a much narrower range of indication, at least in Europe. Off label prescription is still just that: off-label.

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@ItsMewithMS

Agree with above. I don't really suffer from the fatigue that others seem to describe but try to follow good sleep hygiene and usually manage 7 hours a night. Not great but livable for me. I also am pretty good about diet and exercise. Most of my "exercise" is really more active stretching but I have been trying to get up to 20 minutes a day of elevated heart rate and find my sleep is improving as I work on that. I was prescribed Modafinil for "fatigue" which really is better called stamina issues as I fade quickly after about 15 minutes. Insurance didn't like that prescription but will fill Amantadine so I got that instead and it helped with afternoon and evening spasms so I will take it for that! going to bed and flopping around was not good! As far as treatment- I am on Ocrevus. The other stuff is for symptom management

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