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Redpoppy

Fatigue

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Redpoppy

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 Most MS fatigue treatments are usually originally made for other diseases, ie: Modafinil was originally used to help narcolepsy.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, Adderall 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. It seems RIDICULOUS! 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 by any of the MS website organisers 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? Do we not count?

 

I beg you, let’s revolt and end the suffering.

 


Edited by Marina
Reformatted to join up sentences :-)

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Procrastinating
Stumbler

@Redpoppy , I share your frustration, having just had a needed nap.

But, as you know, Fatigue is just one of a myriad of symptoms which frustrate and annoy us. I think it's unfair to suggest that nothing is being done to resolve Fatigue. There is some 2000+ studies that are, or have been, looking at various aspects of MS. Some of these studies are looking at lifestyle changes, which may have a positive impact on MS Fatigue.

Various new drugs are being researched, to avoid the overall functional deterioration associated with MS. This has to take priority over resolving one symptom, although positive improvements in Fatigue may result.

 

Adderall does seem to get used in the US. Personally, the profile of this drug scares me, as the worst potential side-effect is death, with a possibility of addiction. It is unlicensed in the UK and unlikely to be prescribed. There was one study of the use of Adderal in MS, to measure improvements in cognition speed. This study completed in 2015 but no results have been posted.

 

I think I'll stop there before I start waffling. These are just my views, which may or may not placate you. But. like I say, I do share your frustration.

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Redpoppy

@Stumbler

 

Hello, I stand suitably corrected,

but I still believe a bespoke  MS fatigue  solution Should be available .

Yes Adderal is “speed’ like,  and believe me, I’m at the stage to not give a hoot

about side effects
(death being one of them)

Just wake me up!!

That’s how bad weary I am of my fatigue,

(every pun intended)

my quality of life is so poor.

I can’t remember the last time I got up at 9am

and stayed awake until bedtime.

I excelled myself two weeks ago

and slept 18 hours.

I’m perma exhausted and I’ve had enough

Got to go sleep
 

 

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Procrastinating
Stumbler

@Redpoppy , I do feel for you. I needed a nap at lunchtime, but I am blighted by incontinence, so never get a good night's sleep.

 

We just can't allow ourselves to get stressed by these issues as that's counter-productive as it can cause progression.

 

Just go with the flow. We didn't ask for any of this!

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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