Forum

Fatigue

I have been back at work full time a month this week. Up until I had my Lumbar Puncture I had taken no time off sick I took nearly a month off because I needed head time but I was also feeling really poorly and fatigued.

I have had a common cold for 1 1/2 weeks which I did think was easing up. My Asthma has been playing up but that’s normal when I have a cold.

I woke up this morning with a bad muscular neck and shoulder pain which has been affecting my right arm. I felt so tired but after hitting snooze a few times I dragged myself out of bed and into work. I did a short shift of 6hrs it was in the office so I was sat down. By the time I left work I was exhausted. I came home and chilled on the sofa. At 17.00 I gave in and I had a sleep, I woke up at 19.00 and now feel even worse added to which I now feel wobbly emotionally.

I am in work tomorrow for a normal length day and I am worried. I am going to give in and go to bed for the night in a minute. I am trying not to stress or be negative but I need to work I wish I could manage this fatigue but I’m struggling to work it out. Scared what to do if I wake up still feeling like this.

Sorry for being negative. Feel silly.

Snowqueen

hi snowqueen

if you are not fit for work you need to take time off sick.

awful when you’re not the type to throw a sickie but you have ms y’know, not a hangover!!

good luck

carole x

1 Like

Hi snow

you have no need to feel silly, everyone with MS suffers with fatigue and the trick is to pace yourself. As you have been ill and still are you should take time off work until you feel able to return. I’m sure your doctor would give you a sick note. Hope you feel better soon.

Janet

x

Sorry should have been, Hi snowqueen

​Janet

x

Hi Snowqueen

Fatigue is the pits. It’s taken me 4 years to work out a plan to manage mine,mostly by trial and error.

Carol is right it’s not a hanger your suffering from but Ms. Take some sick leave and just work out how much you can do without getting completely exhausted, ie get showered etc and then have a break, then after 10mins or so do something else for May be 15 mins if that feels ok stop have another rest etc and etc, otherwise do everything in bit size chunks. If you find your feeling exhausted again stop and rest for longer maybe have a read or watch tv. Try not to push yourself if you feel exhausted as I find that makes you worse, you should start to see a pattern over time.

it is tough I know but be kind to your self,and remember when you have Ms you only have half the energy you used to have.

Dont feel guilty. Have you a Ms nurse you could ask about a drug to help with the fatigue, it may help.

Hope your ok

Annx

Snowqueen

Forgot to say don’t miss meals and don’t go to long between them either.

Annx

Talking of meals, I always cook big portions, then have leftovers for the next couple of days (I’m a good cook so more than happy to have the same meal a few times!). Not having to cook & wash up everyday saves me loads of energy. I’ve also noticed certain foods affect my energy levels. Things that are high in sugar, white bread & pasta, or fatty meat, leave me feeling lethargic.

And you have no need to apologise for feeling negative. When I’m feeling fatigued there’s a very good chance I’ll feel low. It’s so much harder to feel positive, so don’t be down on yourself.

Sleep well

Dan

When we experience something which is so totally overwhelming that we can’t function properly it should have a ‘proper’ medical terminology.

To call it ‘fatigue’ gives the impression that it’s a sort of tiredness which everyone experiences form time to time. As long as we call it ‘fatigue’ it wont be taken too seriously by our family etc.

And there is always the suggestion by well-meaning? friends that all we need is a short rest before we feel o.k.

What we experience is a very serious and debilitating symptom of m.s. which, in my case, can bring me to a standstill!

Hi All,

Thank you, I went to bed early but couldn’t switch my brain off so took my sleepease tablets. I still felt worn out today but dragged myself in and did my 6hrs had brain fog but got through it. Back to exhausted tonight but plan on doing nothing except a short walk for my four legged friend this evening then bed. Have tried to get a GP appointment but the receptionists were not helpful I have to phone in the morning.

Krakowian I agree Fatigue is a rubbish word, problem is what else do you call it? I had to listen to a student today saying she was so tired and in my head I was screaming you have NO IDEA. Obviously just nodded and showed sympathy after all what do I know about how she was feeling.

Ann and Dan thank you for the suggestions I do normally cook for 4 and freeze 3 portions so I have food for work so maybe just need to start using them days off too. I am following weight watchers to get back to my goal weight just over 1/2 a stone to go. Figured if I’m going to have mobility issues I will make it as easy on my body as I can.

I have been referred by my MS Nurse for a fatigue management course, just waiting to hear when. I welcome any suggestions of how to manage the fatigue caused by this pesky condition.

Snowqueen x

Hi All,

i have seen the GP this morning. She was nice told me I need to talk to my MS Nurse about the fatigue management course and see if I can find out when it will be.

We discussed the spasms I’ve been getting, she doesn’t want to give me a muscle relaxant as she said it will stop me working. She suggested Paracetamol and Ibuprofen and I told her they don’t touch it so I now have a prescription for Naproxen to try.

I talked to her about my fatigue and how c**p I feel, I did cry. She has told me I am depressed and has prescribed Citalopram. Was a bit upset as I know my Consultant said we would discuss antidepressants when I see him in June but I have had 2 episodes of proper clinical depression related to grief before all this which I managed without drugs so feel disappointed. Will try it though as I am emotional all over the place at times. Has anyone else taken this?

Snowqueen x

Hi Snowqueen

I’m glad you’ve managed to see your doctor,I’ve not taken Citalopram myself but I do know someone who has I do remember her saying she felt it was making her feel tired, she persevered and after about 3 weeks the side effects wore off as her body was getting used to it.

Dont get hung up about taking a antidepressant Hell how are we meant to cope otherwise!! I an taking one it’s called Nortriptylin my Nuro prescribed me them for tension heads caused by the menopause believe it or not, although I didn’t know they were a antidepressant at the time.

Another energy saving tip, if you have hair that needs blow drying to look anywhere decent, shower and wash it at night , I do and then put Tresemea 7 day straight lotion rough dry it then go to bed and you can just straighten in the morning, that gives you time to recover during the night.

Ann

Snowqueen

forgot to say I normally cry too!

what other symptoms do you have? if you don’t mind me asking

Ann

Hi Ann,

Thankfully I have really long hair which has to be tied up for work so I stick it up in a bun wet.

Of course I don’t mind you asking what symptoms I have.

I have Fatiguable foot drop which is unpredictable and happens everyday. I also get clonus of my left foot. Sometimes when I walk I get a kick from my knees with each step. I do also get random muscle twitches and sensations. When I have been very physically active or am tired I get the shakes with my arms and legs. I get tingling and pins and needles in my left hand which occasionally also occurs in my right hand and both feet too normally towards the end of the day. My balance is not what is was, especially if I am climbing the stairs at home or have to make sudden changes of direction. Twice I have developed blurred vision when warm. I also have hesitancy issues with my bladder and bowel. Emotionally I am quite wobbly especially when tired I wouldn’t have said I’m depressed but welcome anything that helps balance my moods. I was getting bad neck and shoulder pain which sometimes went up into my head but I think that was stress and tension because my Aromatherapy massages that I have had weekly since diagnosis have sorted that. Recently I have started getting spasms in my left foot and tightness in my hamstring.

What type of MS do you have and what symptoms if you don’t mind me asking?

Snowqueen x

Doctors and time off that’s an order don’t soldier on it won’t help only get worse. Have you asked at work about changes to help ease your conditions etc? Go sick and get better.

Don

Hi Snowqueen

Gosh you have got a lot to put up with! Maybe they will offer you a Disease Modifying Drug to start, to reduce relapses.

I have only had one Clinical Isolated Sindrom (basically means one attack) I mostly am effected by fatigue, but recently have been having light headed feelings which happens if I forget to have an afternoon snack,but that could just be caused by the menopause I’m going through at the moment I say a moment but it’s actually been 5 years so far and have had about 30 symptoms so far so bad that I’m now on Hrt.

Other symptoms I feel more awkward in doing things, people probably wouldn’t notice but I do,for instance if my cat is sat on the stairs I have trouble stepping round him, sounds silly now small things like that, and I went on holiday to Crete for a couple of weeks for our holiday, I think stress must effect me as once I got there my balance went weired and I had a job walking round people in crowds well in my case in hotel restaurant,in the end my hubby waited on me, but it did take the shine off holiday, I did know if I was having a relapse, I have had a swaying feeling when tired I’ve left a message with my Ms nurse,and ordered some urine sticks so I can test if I think I have an infection, I tested today and it was ok. We got home last week and the first night in my own bed was lovely and following morning it had gone, I have been keeping a diary and have noticed a pattern every time I have hospital app or nurse app, I have either jelly legs or tingling in fingers.

i no longer work as the fatigue was too bad,also with meno operation on my parathyroid just after dx, then my thyroid start playing up so I’m on thyroxine as I’m under active now. Take care Annx

Are you taking Vit d supplement? I started on 1000ius now increased to 3000ius.

Hi Ann,

I am on 2200 iunits of Vit D3 on prescription. I have had my bloods done today to check my electrolytes because of the spasms . I asked them to check my Vit D level too as they have never been checked I was just started on supplements.

Unfortunately my Consultant who is a specialist MS Neurologist thinks I have progressive MS so I don’t qualify for any drugs except symptom control ones. Hoping for more information in June at my next appointment.

Things are c**p but I do keep thinking they could be worse and the only things that really bother me at the moment is my fatigue and foot spasms.

Are you sure it wasn’t the heat in Crete lots of people get worse with heat. Also do you think the balance thing could have been that you were out of your usual environment? Maybe you have unknowingly compensated in your own environment.

Glad you feel better now your home maybe have a chat about it with your MS Nurse?

Take Care

Snowqueen x

Hi Don,

Thank You.

I am trying not to go sick as I’ve not long gone back. I’m not sure either if I am confirmed to have progressive MS how much better can I get? Have some days off after tomorrow so will see how I am tomorrow.

Work have been fab. They have sorted my car parking to make things easier and are letting me experiment with my shift patterns to try and find one that works. As a single homeowner I have claimed on my Critical Illness cover and am hoping that will give me options in future if I don’t cope full time, just waiting for their decision.

Snowqueen

Take a look at the unapproved ldn and see if you think it might help.

http://www.ms-uk.org/choicesldn

Hi Snowqueen

What your Dr said isn’t true. I’m on baclofen 20mg x a day and I work. Different people have different re-actions to different meds, but there are several drugs like baclofen that you could try.

Best of luck J.