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Fatigue in PPMS; your thoughts please;

Hi. To date I've been quite fortunate with fatigue, and have only really felt knackered if I've drunk too much wine the night before, have a cold, overdone it at the gym etc. But now, I often have long stretches where I just feel totally exhausted for no apparent reason, the sort of tiredness you get when you're desperate to go to bed.  Am just curious as to whether any of you guys suddenly developed fatigue like this, or whether it's been a more constant/steady symptom? Would appreciate any advice, as am not used to this. Cheers, Pigeon.

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Hi CP,

Until recently I wasn't suffering too badly with fatigue but in the last year it has got very much worse. I do a 15 minute task and find that I have to stop and sleep immediately. I can't do anything else at all - it is an overwhelming need. I usually have several naps during the day, i'n order to get through. In the very near future I am starting Amantadine to see if it helps - got to get used to another drug first though!

Hth,

Teresa xx

Hi Pigeon, I think for me fatigue was really my first symptom... actually struggled with it a few years before I realised anything was seriously wrong... although then it would come and go.

Now it's pretty much with me all the time. I get an occasional day when I feel energetic... but it never lasts long, not even for the whole day. 

According to the statistics, fatigue is the number one symptom for most people with MS (all types of MS) and it's the reason why most people with MS eventually give up working. It is very difficult to cope with, esp at first. 

As Teresa says, there are some drugs that help some people, so might be worth you seeing your neuro or MS nurse to see about taking something. 

I tried something when first dx (can't even remember what) but I felt very anxious and panicky on it and stopped taking it.

It really is a case of learning how to handle your own fatigue. I take lots of rests throughout the day and quite often spend the day in bed. If I've got something coming up (like I've got a friend coming on Saturday), I'll take it easy for a few days in the hope of 'saving' some energy.

Other times I just make hay when the sun shines... in other words... I'll have an energetic day and just have fun and go shopping etc etc, knowing that I'll pay for it for a few days. 

Anyway hon, hope this helps. There's LOADS of info on the internet about fatigue and MS, so it's worth having a google and see other ways that people cope with it... and read about 'pacing' which can help.

Pat x 

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Hi cp

My fatigue is my biggest and worse symptom. Technically I can walk but can't even walk 10 feet due to fatigue so I go out in a power chair. My fatigue is so bad that it stopes me doing most things. I have carers everyday to shower me as showers are totally exhausting!! My specialist said there was nothing I can take so your very lucky to have been offered something and I really really hope it works for you.

Emma x

It's when I go for a little kip....and wake up 5 hours later that irritates me! It wouldn't seem so weird but I can still sleep at night too.

I'm taking Baclofen at the moment and that's a killer for me, I only take half a tablet at a time and know I should raise the dosage (looking at my nega shakey legs) but not sure how I will cope at work like that. I purposefully wait til I get to work before I take it so look a right mess on the way into the office but I leave it as late as possible to try to eke it out for as long as possible. If I take a whole tablet then I could out my head on the desk and sleep.... not good :(

Sonia x

 

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I stopped taking baclofen for that reason. It really made my walking worse due to me feeling so dopey! I can't get through the day without a couple of sleeps. I wish there was even just a miracle pill for fatigue!!

I had to stop work last year as I just simply couldn't cope with the fatigue.

Emma xx

Thanks for your comments. I now take 20mg baclofen at night, which certainly helps me sleep and slightly improves my nightime spasms/twitchings.  I daren't take it during the day as I think it would just knock me out. I'm getting by on serious amounts of caffiene at the moment, which isn't ideal, but lives to lead and all that..

Clucker Pigeon wrote:

Thanks for your comments. I now take 20mg baclofen at night, which certainly helps me sleep and slightly improves my nightime spasms/twitchings.  I daren't take it during the day as I think it would just knock me out. I'm getting by on serious amounts of caffiene at the moment, which isn't ideal, but lives to lead and all that..

I know they say coffee is bad for MS... but honestly without my caffiene fix in the morning I wouldn't ever do anything. I'm a complete zombie before I've had my ration of 2 cups. 

We do what we can... even if the health professionals might not agree!

Pat x 

Min

Fatigue seems to have crept up on me and I nod off as soon as I sit still, and yet I sleep well at night. Don't know if it was coincidence but I had to cut out all caffeine as it plays havoc with bladder.  Oh well, there's worse things I could suffer with.

 

I agree with Pat, without my coffee I dont know how I would cope. Although most days I feel tired, its as though I hit a brick wall early afternoon, so try to do things in the mornings.

 

I would love to be spontaneous again.

 

Pam x

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I drink so much coffee that I think I'm imuned to it!! I resort to diet tablets now just to get enough energy to dust my lounge etc.

Emma xx

Does anyone also get nausea with fatigue ?

Moyna xxx

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Yes Moyna - when I'm really fatigued I also feel very nauseous - that's one of the reasons I need to sleep immediately!

Teresa xx

Hi Moyna,

I get awful problems with nausea.....MS related, although not fatigue related,apparently, I have a lesion on the area of my brain that controls vomiting.

The medication that I was given for it is fantastic, couple of minutes and it's gone.

It's called Domperidone, obviously I couldn't say if it would help you, or Teresa, but maybe it's worth looking into ?

Nina x

Thanks Nina and Teresa,

I am no dx yet just had another MRI yesterday. problems with right leg spasticity, LP clear and MRI so far inconclusive. I seem to present like PPMS and I am 49.

 

Moyna xxx

Sorry to hear you're still in limbo Moyna. Are you taking baclofen for your spasticity? I find it helps me at night, both to get to sleep and stop me from repeatedly kicking my wife through the night! However, I've had to up the dosage this past month, which does worry me somewhat. Re nausea, yes sometimes I do feel slighly quesy but not sure if this is diet related or not. Hope you get some sort of definitive answers soon; I spent 5-6 years wondering what the hell was wrong with me.

Thanks Clucker,

I do take baclofen but I dont have spasms were I move suddenly. My quad is  so tight that I cant bend my knee. My calf is so tight that my foot permantly now  points down. I have a splint, botox has failed and I even tried fampridine and that didnt work. The last few weeks I have had really bad nausea which is why another MRI - the last one was only in June.

Some guy called Tony reckons it is wrong for me to post if I have not got a DX!

Moyna xxx

Min

Moyna it took years for me to get my dx too.  I'm 44 and have another neurological issue to contend with so kept getting written off and really beating myself up for being a wimp and hypochondriac.  It was awful and though it was a shock diagnosis I get some relief from just knowing it wasn't all in my head and that I'm really very strong to be doing as well as I am.  Be patient.

Cath x

 

Inactive user

Hi Moyna  I take Modafinal for fatigue it seems to help during the day, but I still nod off after my evening meal. Might be my age of course. I also take Baclofen I found taking half a tablet in morn and lunch time a whole one early evening and then another when I go to bed works for me. You do need to experiment with the doses to suit your needs tho.

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Monya - in fact I said you're welcome to post but because you have not been diagnosed with ms mention that fact when discussing your problems. Unfair to misquote me. Wish you well.

Tony.

Inactive user

Monya - in fact I said you're welcome to post but because you have not been diagnosed with ms mention that fact when discussing your problems. Unfair to misquote me. Wish you well.

Tony.

I have MS

I don't normally do this but feel the need, Anyone is welcome here whether they have a diagnosis (or want to mention it) or not. God knows, some of us still don't have a 'diagnosis'. This is a place to feel encouraged, warm, understood, safe, not alone and so many other things that have, for me, helped with this scary unknown. It took me a long time to post as I read through alllllllll the threads. When I did, all I had was the amazing support from everyone on this forum. In not one post has anyone ever told me what, or how I should post. If they had I would have ran/run away.

As I said, I don't normally do this but I have. I am not out to offend but needed to say this.

Oonagh

Xxx

 

 

Min

Tony I don't want to offend you but it takes a lot of courage to post, giving out personal information to an audience.  I know I feel as if this illness has taken so much of my dignity away but getting questions answered and letting people know they aren't alone with their problems, also knowing you aren't on your own is such a massive help.

If I'd received your remarks I think I'd have left the forum which would have had a huge detrimental effect.  I come here because people are kind, sympathetic and knowledgeable.  I have a spinal cord injury at neck level, do I have to mention this with every post as my symptoms will be different to many of yours?  

Please Moyna don't be dissuaded from posting.  We all have different situations and degrees of dis/abilities and don't mention each problem in every post.  Chin up.

Cath xx

 

Inactive user

My neuro's not sure if I'm PP or RR Moyna (luckily, he's trying me on DMDs anyway) but for me my fatigue gradually started creeping in, and after 5 years I had to stop working.  

Have you had your vitamin B, D and iron levels tested lately?

I take Modafinil (Modafinil and Amantadine are what's usually prescribed for MS fatigue) and while it wakes my brain up a bit, it doesn't really give me any more energy, just helps be use it better.  

However, for the past week I've been taking a taurine supplement (1000mg) and wow, what a difference.  My brain is awake (without the Modafinil, which makes me a bit jittery), my mood has lifted (was starting to worry I was getting depressed and it was terrible during 'that time') and I have a little more energy now (although that may be down to my mood lifting).

Best of luck hun,

Mags xx

Min

Hi Mags, please could you tell me what this taurine supplement is, what it does and where to get it.  I've never heard of it.

Thanks, Cath x

 

Inactive user

Hi Cath,

I can't find the original link that the person who recommended it posted but this should help...

http://www.poliquingroup.com/ArticlesMultimedia/Articles/Article/782/Ten_Benefits_of_Taurine.aspx

This is the one I bought but there are a lot of others out there.  

http://www.amazon.co.uk/Taurine-Double-Strength-1000-Capsules/dp/B0019LRYD0/ref=sr_1_1?ie=UTF8&qid=1383053372&sr=8-1&keywords=taurine+supplement

If you do try it can you let me know how you get on? 

Mags xx

Inactive user

Hi Cath,

I can't find the links the friend that recommended posted, but this might help..

http://www.poliquingroup.com/ArticlesMultimedia/Articles/Article/782/Ten_Benefits_of_Taurine.aspx

I got mine from Amazon but there are loads of places that do it.

http://www.amazon.co.uk/Taurine-Double-Strength-1000-Capsules/dp/B0019LRYD0/ref=sr_1_1?ie=UTF8&qid=1383053372&sr=8-1&keywords=taurine+supplement

If you try it can you let me know what you think?

Mags :-) x

Min

Thanks Mags.  I've had a look but will have to speak to my Neuro as I'm taking a lot of meds and don't know how they'll interact.  I can see why it might be beneficial.

Thanks again.  Cath xx

 

Inactive user

Hi everyone! I wasn`t sure if fatigue was part of PPMS - but having read all the comments, I reckon that might be why I just want to nod off all the time. I sleep like the dead every night, and wake with the weirdest dreams. Sometimes I just feel ill with fatigue, and the more I fight it, the worse it gets. I guess that might also be partly to blame for extreme stupidity, instant forgetfulness and inability to find simple words. Friends now look at me with horror when I lose a word and have to use a description instead. Or could this be early dementia - I`ll be 64 next month! Snore on, anyway! Faith WB. XX