Muscle pain following SCT

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Hi all,

I am 6 months post SCT (auto) and have been experiencing severe muscle pain in the tops of my arms and shoulders. I have had. CT scan which was ok. Nobody seems overly concerned but it stopping me doing everyday tasks. Has anybody else experienced this and if so was there anything that relieved it?

Thankyou xx

  • Hi again  and it's good to hear from you but sorry you are experiencing the post treatment muscle pain. Unfortunately muscle pain post the SCT process can be the norm for many folks.

    At 6 months post my second Allo SCT I had just finished physiotherapy to get me walking again as my lower body muscle wastage was excessive. This was down to me being bed bound for a lot of the time due to a heart reaction to the final Melphalan that put me in the CCU Unit..... so there was significan 'no pain no gain' during that rehabilitation.

    But my upper body muscle wastage was just as bad, and combine this with the nerve damage where my mass was in my neck..... the pain was considerable the more I became active.

    My great SCN nurse described it as the day after the first day you blitz the garden following winter....... the body aches all over. But in the case of post SCT it takes on a different dimension due to what the body has been through.

    My Head SCT Consultant told me that going through treatments like SCT was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.

    Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality - it took me a good 2 years and I was 60 at the start of my second SCT recuperation.

    You have to ask yourself what exercise are you doing?........ or what are you capable of doing?

    Are you into swimming.... this is a great way of developing the muscle mass. 

    Do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as they provide exercise groups. 

    My SCN took me across to our local Maggie's Centre and enrolled me in a weekly exercise class. The class was taken by a cancer trained fitness instructor who tailored exercises to each individual. He also set exercises to do at home, I bought some resistance bands to do the upper body stretching exercises....... the aim was to build up the muscle mass, yes it came with some pain but this was a sign that the muscles were building. As I said it took a few years to get back to normal but more importantly to take the various pains meds I was having off my repeat prescription.

    Your team will not be concerned but should have told you what to do and reason behind it.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike

    Thanks so much for your reply, it was really helpful. Although I am sorry that you had to go through so much, it it a relief to know that this is ‘normal’ and will improve. I will definitely take on board your suggestions. Wishing you continued good health, thanks again xx

  • The post SCT journey can be challenging and clinical teams are not great at this and basically don't have the money to invest in this very important part of the process.

    The Fitness Instructor who ran our Maggie's Exercise Group was from our main Local Authority Leisure Centre and all cancer patients in our area can go and get a free introduction to the fitness area as well as some guidance as to the best exercises to do.

    Overcoming the muscle wastage and resulting pain does take some determination and perseverance but honestly it can be done...... I now have an exercise bike in the house and try and do 15 mins each day as well as 15 minutes stretching using the resistance bands...... I turned 67 last November and I am as active as any other 67 year old who has not navigated the same journey Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi hoppo13

    I will be 6 months on Monday I have the same in my arms and shoulders with muscle pain . My proffesor doesn't seem bothered either . I do have to take pain killers when I first wake up on the morning.  It seems to be getting a little better as I'm doing alot more round the house . Currently I'm taking amytrypoline just before bed . I really need to excercise more and then I think it will get better . I'm glad I'm not on my own with this xx

  • Hi  it looks like your first post so welcome.

    The corridor walls of the SCT unit where I had both my Allo SCTs have these signs everywhere.

    I have to say that the information is spot on. I had a lot of time being bed bound and inactive (ended up in the CCU Unit a few times)......and when I left my SCT unit after my second Allo SCT I was a month from my 60th birthday and honestly I had the body of a 90 year old.

    It can be a long way back but it can be done.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Nickymal9,

    Thanks so much for replying. It’s a comfort to know that it isn’t just me. Both yours and Mikes reply have really reassured me. I started trying using resistance bands yesterday (painful but hope it will get easier) and I’m walking 3km every other day. I hope that your pain improves soon. I will let you know if I find anything else that helps. Take care of yourself Xx