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Overwhelming fatigue

my wife has MS and suffers from fatigue on a regular basis and this is nothing like anybody would understand or recognise. Virtually all activity stops and bed is the only answer. Does anyone else experience this and doesn’t know what to do or say? 

 

Hi,

MS Fatigue is surprisingly common. I’ve read that about 90% of people with MS experience fatigue.

There really is nothing one can do about it except give in and go with the flow. As you said, it’s “nothing like anybody would understand or recognise” and one of the hidden aspects of the disease that is frequently misunderstood.

Regards,

Anthony

Seeing this affect my wife is most distressing when there is NOTHING to be done to relieve her symptoms. The restrictions that this imposes on her day to day existence, she doesn’t ‘live’, are many and extremely powerful for both mind and body.

Hello

Anthony is quite right, fatigue is a very common symptom in MS. But there are ways to manage fatigue, or at least to make the effects of it not quite so all encompassing.

Have a look at https://www.mstrust.org.uk/a-z/fatigue

There are methods described in the fact sheet that might help.

Sue

My wife has deteriorated since my last post. We’ve had equipment delivered via the OT which was emotionally draining for us both. Only one of the five bits of kit is of any use. The feeling of loss both for my wife and I is profound. I am now more angry than ever and the repetitive dialogue of how she was before the MS took a stranglehold on her life now makes everything worse. I feel the futility in the future.

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Hi Angryman, I just wanted to come on and tell you I’m feeling for you and your wife, and your feelings of futility talking about the past, and how much you both have lost. It must be hard to find the little pieces of joy. I don’t know if it helps. The grief is real, and draining…thinking about you guys today.

I’ve not been on for ages as ‘life’ is simply awful. Thank you thank you for your thoughts!!

Hello Angryman.

I`ve had PPMS for 22 years. The fatigue has always been with me and just recently become worse.

I did try a med called amantadine some years ago, for fatigue, but it worsened my constipation, so I stopped it.

Might ask about something else when I can.

Has your wife tried it?

Boudsx

Fatigue has taken over my life , since being diagonosed with MS . I spend majority of day in bed sleeping .

I am late coming to you. I am very sorry that your wife is having so many issues. It sounds like she is having exacerbations rather frequently. My wife had the same kinds of issues, extreme fatigue, frequent loss of leg strength, and her exacerbations would go away for a while and then return. Unlike some people, whenever, she had an exacerbation she did not regain her prior strength. Every time was a loss of a little more. Do you know what her specific diagnosis is?

I understand completely your anger. However, I would make a request that your wife probably shares, and that is to try and find someone else to find to vent your anger. The more she sees that in you the more guilty she feels for what she is putting you through. Obviously, you love your wife very much but let her vent her anger and then be sympathetic with her feelings.

My wife had three grown sons that blamed me for her illness, in addition, they did not want to hear about her illness and eventually stopped sending, cards, checking on her and this crushed her. She became totally heartbroken. Keep family and friends involved in her life. This is hard enough on the both of you.

I can try and help a little more if you are interested. I will always respond to any emails. Jim

I have MS and was managing the fatigue by resting more and doing less.

Unfortunately this meant that I wasn’t getting enough exercise which made everything worse.

I bought a nintendo console with wii-fit and balance board.

Unfortunately i can no longer use it because my son has all his guitar paraphernalia there, amps and leads and other stuff.

I will have to tell him to shift the bloody stuff!

Does your wife manage to do any exercise?

There are lots of seated exercises to try.

She needs something to focus on apart from her MS.

If you can think of anything that you think she would enjoy let us know because most of us have tried lots of strategies.

Also Mindfulness Mediation helps. The Breathworks course is very good. As the name suggests it is centred on breathing.

That would be good for you too as it calms down the stress.

I really hope that you can find something that works for you both.

xx

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I was told by M.S nurse when I told her about the fatigue , that’s it’s your body’s way of saying you need rest . It is common to feel like like this

I’ve been away for months and not seen all the supportive messages I have had. Thank you. Very much. The MS is worsening week by week and there is no light at the end of the long and dark tunnel. Thank you again. I intend to stay longer this time. D

Hi A,

My wife had MS for over 20 years and I was her leading carer throughout. Her days became predominantly governed by fatigue and the need to sleep a lot largely through the meds she needed to take (for epilepsy and ms). I hope your GP / Consultant/MS Nurse have been supportive towards you and your wife, have they ?

I found the worsening aspects of my wife’s situation incredibly hard to live with because like you I wanted to find a breakthrough / key meds that could reverse what is happening and it was very frustrating not being able to change things. I remember having moments away from my wife when I just had to count to 10 over what was going on, but then I’d put on my brave face again when I was with her. I can’t tell you how good it was when we began to enjoy a laugh and a giggle together in the face of anything we faced. It did help - it might be over something on TV, or a comment a carer or medic said to us or over something that happened on the way to or from a med appointment and deep down, that helped, just to know we had that deep bond and that the MS was never going to be able to take that away from us.

I hope you’re OK.

Matt

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