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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Shaking and tiredness/muscle pain

Just wondering about the above symptoms and what people's experiences were and how long they lasted. I've been out of hospital 1 week, 3 since transplant but I'm really struggling. My legs feel like they don't belong to my body. Thank goodness I have a downstairs loo as the stairs are like climbing Everest! It takes me so long to even shower and dress in the morning half the time I don't want to bother. The nausea and taste is really upsetting me as I love my food. Maybe I'm just having a down day but I just feel so low at the moment as I can't even help my husband with my 2 children and I feel so useless around the house.

I think I keep forgetting what my body is trying to do right now! Could use some success stories at beating this right now and didn't know where else to turn.

Answers

  • Hi Josie.

    What you're describing sounds very familiar to me and probably to others. I also had difficulty climbing the stairs and resorted to crawling up in my hands and knees and pulling myself up along tha banisters. I used to crawl to the bedroom as I couldn't stand then rolled myself into bed.

    You're probably very weak following the transplant and if you spent a long time in bed whilst you were in hospital that will have contributed to your weak legs. One of my nurses told me that you lose 4% of your muscle from your legs each day you spend in bed.

    It will take time for your strength to come back, and your taste will also take some time to return to normal too. Keep eating what you can and find things that you enjoy the taste of, which might be different to the things you used to like.

    Try and keep your strength up if you can by eating what you can and do try and exercise even if it's just getting up from time to time and walking around the room.

    It does take time but you will get there. 9 months after my transplant I climbed Snowdon, which I'd never done before my transplant. Whilst I'm not suggesting you do the same, try and set yourself a goal in say 6 months to aim for.

    Try not to feel down or frustrated as your body has gone through a lot and you won't be able to feel normal for a while yet, but keep plugging away, try to stay positive and you will get there.

    We're here to help you along the way so call in our support when you need it.

    Stay strong!

    Steve
  • Josie

    The good news is that you are home. I think your present symptoms are normal following transplant. Tiredness/ fatigue are really common and there are many stories on this forum about how it affects us all. There is lots of information on Anthony Nolan's web site which you may find helpful on the subject of fatigue.
    My transplant was just over 3 years ago and I was 63 at the time. I remember clearly just what you describe, getting up and into the shower were huge challenges, then getting dressed and making the one journey downstairs for the day. I had the support of my wife who encouraged me all the time. Once settled downstairs I knew that she would be off to the local shops for fresh food and that she would return with goodies and always a cake! I learnt to eat little but often the usual routine of 3 set meal times a day went by the board.

    Like you I too had lots of sickness and loss of taste. Water and coffee tasted metallic. We got round this by drinking tea and fruit juices. Slowly for me things got better, fruity sweets and wine gums, and ice cream all helped.

    As regards the fatigue its normal, be patient, try a walk around the house to start and as you feel stronger venture out but take small steps and as you get stronger set little goals. I remember building up walking and my first visit to a local café, it was huge achievement, I went from strength to strength, visiting other cafes a little further away, they became for me the new pub, my local was a step too far away. We got there eventually and had a well deserved lunch.

    It's perfectly normal to feel down and useless, try and concentrate on getting stronger, let those around you help you and together you will get through it. I was really down and frustrated because I was working 2 weeks before transplant with no symptoms of a blood disorder, I had bone marrow failure identified in a routine blood test.

    Enjoy the good days, you will be fine.

    Peter
  • Oh – stairs! I never realised how much more effort it is to climb stairs than to walk on flat ground, until my transplant. I felt useless, too, but it's far more important to you and to your husband and children that you rest and recover at the speed you need to – however frustrating that may feel.

    I've now started making an effort to use the stairs at work; I'm on the 6th floor and it leaves me really out of breath, but I'm hoping it'll keep getting easier, the more I do it. Whenever I feel a bit pathetic at how much of a struggle it is, I remember the time when I could hardly get up the stairs at home, and feel more cheerful to see how far I've come! It can be a slow process, but it does get easier :-D

    All the best,
    George
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