CFS/ME and mobility (New member)

Hi there, I'm new here, I was diagnosed with CFS about a week ago, after being diagnosed with Post-Viral Fatigue Syndrome for about 6 months following a debilitating viral infection.

I've been wondering; but hesitant to ask anyone, if a wheelchair can be used to help me with my mobility? I struggle to walk a few paces without fatigue kicking in; sometimes I can even be sitting doing nothing and it will kick in. Is it worth going to my GP about this? Because I struggle a lot.

I also feel like I'd be embarrassed in a wheelchair, is there a stigma in the general public about wheelchair users?

Thanks in advance, hope to hear back soon.

- Ronan J.

10 Replies

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  • Welcome. You don't need to see gp for a wheelchair. Just go to a mobility shop and purchase from there. You can even get them from Amazon!

    However I query how you would use it? Certainly I couldn't push myself in mine. Is only occasionally useful when I have a friend push me.

    What is far more useful to me is my mobility scooter. I can go where I want, when I want. Even have a hoist for it in my car so comes out with me.

    They are not cheap but I get PIP and this is what the money is for.

    Hope you find what would be helpful to you.

  • Hi, my husband who is disabled has obtained a manual wheelchair via our medical centre physio and the Council's occupational health department, they do an assessment by phone and may send someone out to see you but shouldn't have any problems. As far as stigma goes I don't think so, though as previous reply you will not be able to manoeuvre yourself, certainly at my worst CFS/ME that would have been impossible. I would also say that in my experience you should do as much physically as you possibly can within reason and taking great care, but keep yourself mobile as much as possible.

  • i am sorry for all your problems, however do not rely on the dwp for help,they employ cretins whose sole job is to deprive you of benefits that should help you with your mobility problems.ask your doctor for a referall to a physiotherapist,they should be able to help you,they normally know all the relevant people that you should contact! good luck,good health and god bless!

  • Thank you so much! I know what you mean about the DWP, I'm on benefits and they are so tough to work with; I've been lucky so far to not have been cut. I hope you get well soon, best wishes! x

  • Hi Ronan,

    I have a manual wheelchair which is light weight and folds to go in the boot of my car. It was around £200 though it's built for 'occasional use' and can't be customised to body shape.

    I used it to get back to work as my legs were very weak and my balance nearly non existent, I had a hill to tackle to get to front door of where I work. I have an unexplained disparity between the effect of exercise on my legs and the effect on my arms which are stronger and recover better.

    The wheelchair is useful for day trips where I can be pushed if the distance is further than I can walk or where the payback would be unmanageable.

    However, be warned that you can be swapping one problem for another as after a year of use I had a problem with my shoulder which took a long time to resolve and recovery​ from any injury with CFS is difficult.

    I also have a walking frame with 4 wheels and mainly use that to get around and take the view that if I'm too weak to use the frame, I shouldn't be soldiering-on self propelling in the chair. I now have a people carrier and​ take both pieces of equipment out and make the decision on which to use when I get where I'm going.

    Being seen as physically disabled is eye-opening; I've been laughed at, huffed and tutted at, ignored, regarded with disgust and had people be overly familiar or act as if I have learning difficulties. Some people are genuinely nice and helpful but you need to be thick skinned for those who are not.

    Adaptations to my working pattern and location have had the biggest impact on my walking ability and I use the chair less and less, though I can still go further and faster in the chair than I can on foot.

  • Thanks! Very insightful! <3

  • I hope I can help, any other questions, just feel free to ask.

    I first used a manual wheelchair on holiday when we hired one, it was really touch and go as to whether I'd be able to go.

  • Thank you sir :) x

  • I hated using a wheelchair,it was my pride,I wasnt ready,now I think of all the things I can do with it....no contest,never mind what others think.

  • Hi Ronan. I have also only this year been diagnosed after the gradual decline into the ME symptoms over several years. My problems with mobility sound exactly like yours. Sometimes my 'loss of strength' as I call it, happens very suddenly at which point it is hard to move my body, especially my feet. I purchased a mobility scooter having tried one out just before Christmas. Most people I have found; are really pleased with my decision and are glad to see the boost it is giving me. The ability to take myself off out on my scooter is such a positive thing amongst the misery. I highly recommend it. I can go out for the day with a friend, take my God-daughter out with my family. This would otherwise not be possible. It opens up a whole new world. My only caution is that I find I cannot do this too many times in a week. sometimes I get payback from it. Despite this; the positives far outweigh the negatives. Please do consider this route! All the best :)

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