Hi I am 3 months out of auto SCT at the age of 65. In the last couple of months my whole body has become very painful and sore and I am very stiff when I get up from sitting or laying.
I am taking cocodamol as I can’t take ibuprofen or similar and without these my life would be a misery. I have told my consultant but he seemed to just accept that this is part and parcel of recovery. I have been diagnosed with tendonitis in my neck and upper arms by my chiropractor and am having treatment for that.
Has anyone else experienced this and if so, did it go away or is this my new normal? I don’t expect to not have after effects but this is so painful 
Hi Janeh21 and I see it's your first post so welcome to this corner of the Community.
First well done in getting through the SCT rollercoaster. Most people just done understand the journey.
It's incredible how much your body goes through during the SCT process. I have had two Allo (donor) SCTs so understand this very well.
My head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training....... no wonder we have 'body pain, soreness and stiffness'
My story is long (hit my Community name to see it) but I was in a wheelchair following my second Allo SCT...... so it took a good 4 months just to get back on my feet....... I was getting Physiotherapy over that first 4 months and that helped get me up walking with a stick. Then a good year to overcome the aches and pain.
The speed of your physical recovery will be down to how active you were during yours well as post SCT. If you are not doing much exercise then your recovery will take longer.
This sign is everywhere in our Heamatology and SCT units.
My recovery following my first SCT was no problem as I was walking the ward, had an exercise bike etc in the room...... but my first SCT did not work. I must have been 89 ;) when I got out from my second SCT as I was 3 weeks bed bound.
I was left with server pain in my neck where my mass was along with bad back and leg pains but general all body aches and pains..... I also have Osteoarthritis so this just made things much harder.
My consultant was the same "part and parcel of recovery" my Specialist Cancer Nurse was more proactive and once I was back on my feet she marched me across to our local Maggie's Centre where she enrolled me into a men's circuits class run by a cancer trained fitness instructor.
Believe me when I say that often called her names (I get on very well with her)......... but she would just say "No pain - No gain.....how much do you want to recover?"
A year of weekly exercise along with set exercises at home (even bought some of the kit) and I was a changed man. I was on regular Dihydrocodine but after about a year and a half I removed this from my reset prescription.
We walk 5k regularly now and the most amazing thing is the pain I had with my Osteoarthritis is all but gone.
My SCT consultant also gave me a basic scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
Where would you put yourself on the list above?
Happy to talk more.
Thank you so much for all the information.
I was literally in bed for the whole 3 weeks in hospital and not allowed out of my room so I can see that’s made an impact.
I do do a little walking and I can see I probably need to increase that. I will look and see if there are any suitable exercises too but have been told not to socialise till end of next March which I understand.
Thanks once again for the reply. It’s nice to know I have someone I can ‘run things by’.
I’d put myself at about 75% on the scale btw 
Best wishes
jane
Hi Jane, Three weeks in bed will most likely be the source of your aches and pains. My Physiotherapist said that we lose muscles mass very quickly and it needs to be re-trained and built back up.
Yes keeping a low profile post SCT is very important and I was shielding before it became a thing due to Covid.
There are a lot of online exercise resources so check them out. Our local Maggie's Centre run lots of different online support and activity groups including our Heamatology Support Group and at the moment it’s made up of folks post SCT.
We actually have folks log in from 100s of miles away. It’s a great way to not feel alone.
You don’t say what type of blood cancers you have, if it’s Lymphoma do check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service, you would most likely bump into me in there as well 
Setting simple and achievable daily tasks is a good way forward, if you don’t achieve then then there is always tomorrow. Winter is harder for recovery as we are less likely to go for walks in case we get a chill but wrap up well and do some walking, If I did it in a Highland winter anyone can 
Always around to chat.
