Hi, I’m new to this so unsure if this is the right place to ask.
I had an autologous stem cell transplant back in February and for the past 3-4 weeks I’ve been experiencing some joint/muscle/bone pain. It’s hard to pinpoint exactly what it is that hurts but I have it in my jaw, shoulders, hips, pelvis and knees. It’s not a constant pain but a pain that happens whenever I adjust or stand up, almost like everything tightens up when I sit or rest. I’ve tried small stretches to see if that helps but the pain comes back pretty soon after.
I was just wondering if anyone else experienced this and knows of ways to help? And is this something that will go away soon or will I just have to get used to it?
Sorry if this is too long.
Hi Meg27 and a warm welcome to the Macmillan Community but I am sorry to hear about your post autologous stem cell transplant.
I am Mike and I help out around our various blood cancer groups.
I don’t have Hodgkin's Lymphoma but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well…….. having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
Your body has been through a lot and most likely you have not had a lot of exercise during your SCT process….. but once you are a few months out the other side you will start to become more active…… but in turn your body will start to complain especially you muscles….. you would most likely lost some or a good part of your muscle mass so it will take time to recover….. unfortunately this can be painful.
My Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months to this point in time….. and this was done without any training.
Think about doing the London Marathon and boxing Mike Tyson 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.
Not giving yourself enough time could be a backward step……. be a patient patient 
Some folks are lucky and bounce back quickly post treatment but more than often folks take a considerable amount of time to recover.….. at 3 months post my second SCT I was just out of my wheelchair and able to do a few steps with my walking sticks….. so I had to have physiotherapy for a few months to get me active…… it was painful but worth it.……
Doing some simple regular exercise will help, slowly building up as time goes by. Keeping some activity going is important……. There are sign everywhere in my local Heamatology ward, clinic and SCT unit saying a week in bed is like ageing physically by 10 years……. I went into my sr o d Allo SCT as a fit 60 year old but left 4 weeks later as an unfit 90 year old
……… but I am now over 10 years out from SCT and living a great life…… there is light at the end of this tunnel. Keeping some activity going is important……. There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years.
