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 Most MS fatigue treatments are usually originally made for other diseases, ie: Modafinil was originally used to help narcolepsy.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.
I’ve had fatigue for years. For at least the past year, if not longer, I’ve been feeling more and more tired, and lethargic and apathetic.
Last week, my heating broke down. I was extremely lucky to find an excellent plumber, the best I’ve ever had, and he fixed it. The problem wasn't with the boiler but he was a bit dubious about the boiler, as he has a 6th sense when things might go wrong and he advised me to get a carbon monoxide monitor (which, in itself, got me a bit worried). I got one, with a digital display so that I could see the pp levels, and set it up the night before last.
Yesterday, the monitor’s alarm went off... To test it, to make sure it wasn’t a one-off false alarm with a new monitor, I turned the boiler off for the night (to be on the safe side whilst sleeping) and then turned it on again this morning. Within an hour or two, the monitor’s alarm went off again. So I’ve now had to turn the boiler off permanently till the plumber returns and I'll most likely need a new boiler - wrong time of year for this sort of thing, though!
The CO level wasn’t super high when it triggered the alarm, at 99pp and 102pp, but was higher than the “safe enough” levels of 35-50pp, hence the alarm being triggered. Edit: in-between alarms, the readings tended to be between 20 and 49pp.
Symptoms of CO poisoning include those we can get with MS, such as fatigue, tiredness, dizziness, headaches, even neuropathic pain, and non-MS symptoms like nausea. (I should maybe find a suitable link to add to “Conditions that are similar to, linked to, or mimic MS” in our Resources)
I now don’t know how long the CO levels from my boiler have been too high, and I don’t know if my worsening fatigue and lethargy are due to MS or to CO!
So, if you don’t have a CO monitor, I’d advise to get one! (The one I got was a FireAngel CO-9D)
This is a handy link showing CO levels and at what levels symptoms can occur:
Carbon monoxide Levels that Sound the Alarm | Kidde
WWW.KIDDE.COM
What are the carbon monoxide levels that will sound the alarm?
Hey guys I wrote a new blog post about how to battle fatigue. I hope it is helpful to you all.
http://multiplesclerosis-life.blogspot.co.uk/2015_12_01_archive.html
Thanks,
Sarah.
Hi, I am new to this forum so I do apologise if I have not done this correctly.
I was diagnosed with RRMS last August after first getting Optic Neuritis and then bad legs.
I am a website designer so thankfully I am able to work from home most days and venturing in the office when I am feeling well.
I would say my fatigue is the worst thing, I am sure many of you will agree. I take Amantadine, eat healthy and get lots of sleep but still feel bad. I recently got married in Vegas and it was the first time I felt a lot better, the dry heat I think really helped me.
The recent hot/humid weather in the UK has done the opposite, it has made me spend days in bed and being unable to work.
My wife and I have been thinking whether it maybe a good idea to go abroad for 4/6 months to see how I am. I can still get a works visa for NZ and I am seriously thinking of going to work there and also travel to see how I am.
Has anyone been to Oz/Nz and found that the symptoms have not been as bad?
I know heat is a bad thing, but for some reason I felt great the other month in Vegas, It maybe a holiday/wedding high but clinging on to the thought that dry heat may actually help me.
Any advice/help would be appreciated.
Chris
I haven't been diagnosed with MS, recently diagnosed with ME but I like all of you here so I've stayed :-)
Anyway, I have a dreaded work night out tonight. I say dreaded because it's Friday and by now I can just about function. However, having pulled out of various nights out using different excuses, I decided if I went on this one I could get out of a few more to come!
I am so tired and I know I have been out when feeling like this once before and spent the next few weeks going through a really bad patch of tiredness and pain and I got very down.
Anyway, I know I will need to really take it easy after tonight and I am already prepared to maybe take Monday off work so I can recover quicker but does anyone have any tips on how to get through the evening without feeling like talking takes too much effort and you just want to curl up in a ball and sleep?
I am going to try and grab a 20 minute nap when I get home but any tips for feeling a bit brighter?
(I haven't told work about my ME)
Thanks,
Katie
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