Long term fatigue
This is my first time on here and I was wondering if any of you kind people could help me. I had a Auto SCT (along with R-Chop) in May 2018 for MCL. The whole experience of the transplant floored me, it was my lowest physically during my treatment. I have gradually recovered and now 4 years later I'm much better. My problem is that I continually suffer episodes of extreme fatigue that wipe me out for days. I try to manage my time, eat well, exercise, rest, keep a diary, all the usual stuff, but I feel that it's a situation out of my control, it seems to happen anyway. I try to go easy on myself mentally but when I'm layed up, it's super hard to keep positive. I suppose if any one has any, I'm after some top tips or ways to manage expectation. I don't know if to hope for further improvement (I'm not close to being back to where I was) or accept my situation, I struggle to hold both. Thanks in advance. Dave
I'm Steve, one of the online community champions here on the forum and had a transplant for ALL in 2013.
I can relate to what you're describing and I think most transplant patients will. The effect of a transplant is long lasting and takes an inordinate amount of time to recover from. My transplant floored me too and for months I couldn't even walk up the stairs and had to crawl up on all fours. I don't think any of us ever return to the stage of fitness we were at before we became ill. Even over 9 years after my transplant I still find myself getting fatigued physically and mentally at times.
I get breathless more easily than I did, take longer to recover from physical exertion and am probably not as strong as I used to be. I also find that hot weather and direct sunshine make the situation worse for me and it's as though the sun saps the energy from me.
Mentally, I find it difficult to concentrate at times and to be able to focus on tasks, particularly if there is a lot going on around me. I struggle to find words or remember names which can be extremely frustrating at time, but I've learned to live with it.
I would say that as time goes on it does get easier. I'm not sure whether I can put that down to a gradual improvment in my fitness or an acceptance that my situation has changed, I've been through so much, and that I am what I now am.
You will hear transplant patients talking about the 'new normal' and I think that's where I am at and hopefully you will get to that stage too. We have to remember what our bodies have been through which is a huge trauma. It does take time to recover and I don't thinkwe ever get fully back to where we were. But for me, I like to think of the alternative, which is that I might not be here at all and that every day is now a bonus, and that for me helps to put my limitations in perspective.
I hope this helps give you some comfort that the way you feel is not unique and that a transplant does have a major effect on you. I'm sure others will share their experiences and I know from being here on the forum for a few years now that what you are feeling is something we all have in common.
I'm Claire from the Patient Services team - I'm glad that you have found the supportive community of our Forum.
In case you haven't already come across our web page about fatigue, I just wanted to share the link with you: https://www.anthonynolan.org/patients-and-families/recovery-body/managing-fatigue
We are also aware that the stem cell transplant process and recovery can be very challenging for your mental and emotional wellbeing, and to support this offer a free Telephone & Emotional Support Service (TESS) - we want to make sure that if you need support, you have someone to talk to 💚. This service is specifically for stem cell transplant patients and family members, provided by 'Working to Wellbeing' – a team of wellbeing specialists including qualified psychologists, with years of experience providing support for stem cell transplant patients. You can find out more here: anthonynolan.org/tess. If you think this might be helpful, please email our team at firstname.lastname@example.org and we would be happy to refer you.
I hope this helps.
My name is Michelle, I am an online community champion and stem cell recipient. I had my SCT in 2019 and 3 years later I still have episodes of extreme fatigue.
My SCT was a journey of continuous challenges, Like yourself I was completely wiped off my feet from the transplant more than any other treatment. Rebuilding from that takes time and as Steve mentions there is definitely a 'new normal' we have to come to terms with post treatments.
Chronic fatigue can have a significant impact on mental health so I am pleased to hear you try to be kind to yourself. It sounds as though you have alot in place, I wonder if you have considered pacing.
Pacing is a method I have been using throughout treatment and even today. I break my tasks down much more than I would on days where I feel OK. When chronically fatigued, often we have done far more than what our body can actually handle. We think we are OK, then we have an episode of extreme fatigue impacting thought processing, mood, tolerance, sleep, pain. I overcome this by prioritising what really needs to be done on the days I have high levels of fatigue for example I won't study on these days as it just exacerbates my fatigue and my mental health rapidly declines. I focus on the self care tasks I.e. healthy eating and a short walk. Ofcourse it can be hard to implement pacing when or if you have a family and full time employment but it can be incredibly useful.
I hope at least that it helps to know it is very common to experience on going extreme fatigue or episodes of chronic fatigue after invasive treatments such as chemotherapy, radiotherapy and stem cell transplants.
i have all the problems you are talking about , I was diagnosed in 1996 with non Hodgkin I was left with chronic fatigue I was told then just to get on with it .
then in 2020 with aml and had a bone marrow transplant 2 years ago , and everything is so much worse , now I pace myself if I know I’m doing something one day I rest the day before and then I’m shattered the day after
I take each day as it come and be thankful but it is hard
Crocwells hi, I just got chatting to a fellow patient at a recent check up and he was there for an annual check 30 years after his sct. He obviously had leukaemia in early 20s but could tell me briefly his situation. He Only had mild gvhd all that time ago but can do everything now. I was in disbelief, but he assured me, everything. Maybe when we're older we need to take normal aging into account which would mean recovery to preleukaemia state isn't going to be able to happen. Mental cognition recovery etc and physical strength don't come without strict discipline workouts I guess.
So what does that mean for me...oh, hard Graft. Thanks for your post, I guess I need to take it positively even though I'm still very early on with chronic gvhd and only 16months after sct.
That’s good news gives me hope , I’ve gone 2 years , I’m 59 it’s very hard some days mentally and physically , my moods are very changeable and my memory is so poor , I just get on with how I feel that day , I’ve been like this on and off for 25 years since having Hodgkin’s disease now with leukaemia and my bmt
wonder if this is how every one feels
I for one can tell you I'm with you and from my little experience , we'renot alone. It's awful I agree, but your little bit of positivity helped me too. Thanks. Reading simple, compelling text/fiction/biography helped me cognitively recover, and watching films, but I couldn't do it early on. It a bit of time before I could watch a whole film. You tube is good for that.
i do read , and watch the television on a night , also knit easy patterns , I love peace and quiet and being outside , our grandchildren keep me going and look after me very well even though they are young , reading other peoples messages give you hope , as only people like us know what’s it’s like
Hi Dave, hi all, a general tip about dealing with fatigue, something that has helped me, or maybe it was a change of meds too... an app for cancer related fatigue... called untire. I downloaded it from google I think. It makes a difference.
Best wishes to you all,
thankyou for that tip I’ll have a look