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Some experiences please

Hi I’m fairly new to the forum and am 4 years In to this disease and would like views and tips of how you all deal with this fatigue.

does anyone start to feel their fatigue creeping up on them and then stop what your doing and rest until it has lessened again or do you all just try to push on through it. Does that make you feel worse and take you longer to recover?

i know no ones the same but feel that any experiences given may help. I’ve only just realised mine come every 3 months or so and its gradual,so gradual it’s not noticed until I start feeling ill and exhausted then stays around for 2-3 weeks then gradually gets better again until it’s hard to believe I had it in the first place.

I Do also have a generalised fatigue all the time, especially in the morning, can’t usually get going until late morning on good days and drying my hair is a nightmare using a brush and hairdryer my arms ache so much I usually give up half way through.does anyone have this problem ladies that is!

Hi Smokey,

I haven’t been on here for a while and I am no expert on M.S but I have and do get experiences of feeling tired and I originally pushed through it. I ignored the tiredness. However, now in my second major relapse I now realise this was not the best thing to do. This maybe my own ignorance in fighting this disease or me not accepting the disease. Still struggling with coming to terms with it. The consultant i’m now under has advised i take a good over the counter multi vitamin tablet that has vitamin D in it and to try and rest up as and when you can.

Hope this helps and perhaps mention your symptoms to your GP/MS nurse.

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hi smokey,

fatigue is, in my opinion, more disabling than anything else.

i will myself to get out but then regret it soon after.

there are meds that can help but you may have trouble getting them prescribed.

chat to your gp anyway.

as for your bladder, have you tried self catheterising? this, along with tena extra night, sees me through most occasions.

there are some brilliant films on at the moment if you can manage the cinema.​

the imitation game was so very fabulous.

this week i want to see the theory of everything.

sorry if you have already tried everything,

your local authority might run a ring and ride service that you could use to get to ms society meet ups.

take care and find out what is on offer in your area.

carole xxxxxxx

Thanks for replying Arti73

i have been in contact with my Ms nurse about this fatigue once about Six months ago when I was prescribed Amentadeen to try, I didn’t find it made any difference but thinking back by the time I actually got appointment and then prescription the fatigue was getting less so maybe that’s why.

As I also have an under active thyroid this time my Ms nurse referred me to a consultant for my levels to be re-checked as she thought some of my fatigue could related to this. So my thyroxin has been increased and he has booked me in for a test at hospital to check my cortisol level that’s what controls your energy. However after joining this site I think it may be a waste of time as clearly most people with Ms has this fatigue. If this test does come back and indicate something is not right then I will probably have the answer, if not my nurse has another drug lined up for me to try modifinal . I really want to book a holiday abroad this year, but previous two have been spoilt by fatigue.

Thanks for your reply Carol

i do actually go to the cinema quite a lot except over the Christmas period, the last one I saw with a friend was the Mocking Jay, (hunger games).

i think you must have mixed me up with someone else as I don’t have bladder problems (not yet anyway). I am due to start Modifinal end of February I think if my fatigue isn’t caused by something else.

i do try to get out as much as possible in fact we got a puppy last April a golden lab called Toby, so I have to go out to walk him,

i do do get my exercise that way as he has three walks a day although my Hubby does the early one at 7.30am.

I think this Ms will be cured in the not so distant future, my son has diabetes and I’ve heard that’s close on being resolved.

im keeping all my fingers crossed xx

ann

hi smokey

who on earth have i muddled you with?

as if fatigue isn’t enough, i also have bad brain farts

yes some diseases do seem much closer to being resolved.

what a party that will be!!

carole x

Hi Smokey,

I suffer with fatigue quite badly. At first I tried pushing myself through it but felt worse for wear, so now I sit down and nine times out of ten I will sleep and wake up feeling better for it. I am now finding I sleep more and more as the disease progresses. As already been said fatigue is one of the worst symptoms.

Hope you get good advice from your MS nurse. Sometimes it’s the drugs we take that make us more tired.

Good luck.

Janet

x

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Hi Smokey, I find it hard to slow down. When I have energy, I just want to use it and it blow the consequences! My MS nurse, Physio, OT and husband all keep telling me to pace myself. I am trying but I think, like you, my fatigue sort of creeps up on me.I also have underactive thyroid and MS nurse got me to have my levels checked. My thyroxine has been upped and I feel better for it. Maybe your increased dose will help too if you give it time.

I also have trouble with hairdrying. Any activity involving my right arm being above shoulder level is really difficult. My arm feels as though its made of lead. I keep my hair short so that it doesn’t take too much work.

Ceinwen

hi carole

sorry- totally off the point of your question, but what is a ‘brain fart’?

cheers fluffs x

Hi Smokey I really suffer with fatigue sometimes bed bound for days or in a few cases week’s. It really is debilitating and I find heat makes it worse. Try and minimise your exertion sit to do stuff. I used to sit on a perching stool in kitchen to wash up peel spuds etc. I am now in wheelchair and wife has to do it all. Its taken twent yars to get ike this so dont worry as you syay a cure will come. Jus try and arrang you day to make life easier and how about hair cut ad a trip to the hardressers today oop that was yesteda i am writing this at 06:20 and my chosen hair cut is a number two all over but t des show my bald patc to its bes advantage so if y do fly way on holiday look out for reflections dazzling the pilot if your flight path gos over Margate.

XDon

Hi Smokey

Don’t know were you live but the MS society run courses in Self Management which addresses fatigue as one of its subjects, i have been train by the society to deliver it. It basically means you have to listen to your body, if you feel you are getting fatigued stopped and rest for a little while, this should help, saying that you need the buy in from others and that can be the hardest part, the course is full of good ideas and you use the ones that are most helpful to yourself.It might be worth trying to find out if there is a course near you.

Trish

Hi everyone

thanks for your replys and helpful suggestions in managing the fatigue, I have had my hair cut shorter in last three months from a shoulder length Bob to graduated shorter style like Victoria Beckham used to have, and due to get it thinned and layed and a bit shorter again and shorter at the back I have such thick hair! Maybe with a bit of blonde too as long as it covers my grey bits.ive found a great product on the market for hair it’s the Tresemea 7 day straight cream you spread in on and dry then you can just straighten it and it stays straight and flat and also protects it from frizz and heat.

i am at the moment pacing myself when I feel the fatigue creeping back in I am just stopping and resting and having a read for 20mins then I’m ready to go again,just like im doing now,but on here after visiting the vet for cat booster and filing the washing machine.

my Hubby does the vacuuming and floor washing and a lot of cooking too so I am lucky there.

But it I do find I sometimes crave doing them if that makes sense.

i did wonder about the sleeping when your fatigued,as I find it hard to during the day, but lots of people do,maybe I’ve just not reached that stage yet or maybe it’s age, I’m 48.

Thanks Trish, I’ll ask about the self help courses when I see my Ms nurse next.

Thanks again everyone I expect I shall be posting lots more soon about certain symptoms,it’s great to know I can.x

London girl - forgot to say your so right about the arm feeling like lead and how hard it is when held over shoulder height.x

to fluffy ollie

a brain fart is when your brain feels like it has stalled like a car engine.

often happens in the middle of me saying something or typing,

ha ha!!

carole x

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