Hello.
I hope someone can help because I am so desperately worried.
I had Stem cell transplant two years ago and have a very good remission. However I have been struggling with fatigue for about a year and it is getting worse. I have reached the point today where I can’t get out of bed. I have a constant sense of tiredness which makes doing anything feel impossible: a total lack of energy. It comes and goes but the last week or so it has been gradually getting worse.
I do some “normal” things but it’s like doing them in a fog, I just get through it. Then the day afterwards I am beyond tired.
I know it’s more than just bad sleep - it can’t be right at 56 that I just can’t move very far. People say go for a walk or whatever but I don’t even have energy for that,
I’be been back at work but have had to be off sick for two weeks now because I can’t focus or concentrate, full of anxiety and depression.
It’s horrendous and it feels like this is it for my life now. Can anyone relate to this at the very least? Two years on and in remission and I feel guilty that it’s so bad.
Hi @md67.
I can tell from reading your post how worried and how low this is making you feel.
Fatigue can be debilitating can’t it and although it can be for many reasons I would suggest either checking it out with you GP or medical team. Have they been able to offer any advice so far? Do you have anybody you can contact?
It may be worth giving the support line a call to talk things through. I’ll include the link below. They are open Until 7pm tonight and will be able to talk through how you are feeling and next steps.
Please take good care of yourself. I’ll check in tomorrow to see how you are doing X
Thank you for this. I am seeing GP on Thursday and have a consultant call next week. I’m just worried though because I kind of know they will say it’s the tablets and Stem cell transplant is a big thing etc etc… all my bloods are fine on the whole but I just know this isn’t right and that there is something. It’s been coming and going for a year now. The only thing that works is to rest and rest and rest - then I will have a bit of a break but then normal life makes it come back.
Link as promised x
I’m glad you have an appointment next week. Make sure you write down all of your questions and concerns. Have you got somebody who can be on the call with you, especially if you are anxious and tired x
Hi @md67 I cannot better @Nichola75 brilliant responses to you.
You describe the severity of your symptoms and the impact on your life so clearly.
So glad to hear that the appointments with your GP and your consultant are so imminent.
Perhaps be pleasantly assertive and ask them what they are going to do to help you.
Please do let us know how you get on and look after and be kind to yourself
Hi @md67
I’m really sorry to hear this - it sounds like you’re really suffering, and where do you turn in these situations? What’s the answer?
It’s not something I’ve confessed to yet on this forum, but actually in the last 6 months, I totally relate to how you feel and all that you say. I’ve been trying to brush it under rhe carpet/put a brave face on it, but I have recently come to the end of my tether with fatigue.
I’m 53, 2.5 years post transplant for Acute myeloid leukaemia (AML), and I got over the initial fatigue within a few months, and was able to exercise intensively etc. I had a bit of a dip again whilst being treated for the proliferation of Epstein Barr virus in my system, but then eventually went back to work, feeling pretty good. I had to drop from a full time trial to part time though.
Unfortunately, I then caught covid in February, and since then the fatigue has been creeping up on me, to the point where I’ve broken down at work in tears from the exhaustion. I’m not able to do half of what I normally do - I have to save my energy for essential tasks like work and household stuff. I have zero energy for friends or fun. I’ve lost the life I was given back.
I’ve just been on a busy holiday with my family, with the reluctant acceptance that this time I would only be able to enjoy a few hours a day of doing things. I spent 21 hours a day in the hotel room! Now that I write this, it sounds crazy that any of us accepted this. I also got a virus in transit (I tested negative for covid though) which wiped me out further and tainted my precious few hours of activity with fever and aches. Actually, it turned out to be a miserable holiday all in all, despite a reference to ‘fun’ in another of my posts, where I was still putting on a brave face of denial.
I got back and immediately contacted my GP on Monday, and burst into tears telling her all this. I had previously told my haematologist, but he didn’t seem to absorb the extent of the fatigue - and my bloods were ok, so it wasn’t really his issue, I think he thought. Fatigue didn’t even get written into my notes. However, my GP was hugely sympathetic and was shocked at how far my energy had deteriorated and what I have been putting up with. She’s referring me to the Long Covid people; has offered me antidepressants which I may accept because I feel so low right now, and she’s checking my bloods for issues my haematologist may not have looked for, like hypothyroidism (which chemo can cause) hormone issues, deficiencies etc. She’s also referred me for some counselling, which I never got mid-cancer trauma, because it was lockdown.
My work Occupatiinal Health dept has also been so supportive. They’ve advised me to have three weeks off; have contacted my GP for a sick note, and have written to my manager reminding him of Reasonable Adjustments in the Workplace for cancer patients, who are considered to have a disability. He previously turned down my request to shorten my work day slightly. They’ve also arranged for me to talk to an OH doctor.
My GP also said that although I tested negative for covid, I had all the symptoms (sore throat, cough, headache, shivers, aches, runny nose, diarrhoea, fever) and therefore it was most likely covid at this time of year - other similar viruses are winter seasonal. Interestingly, she said many people are testing negative despite having the symptoms in summer. She herself caught it and tested positive. Her husband developed it a few days later, but tested negative. So now I’ve likely had a double whammy of covid fatigue (and I worry I may have passed it on to other immunocompromised people unknowingly too.)
Have you had covid, @md67?
Another horrible aspect of fatigue is that it is invisible, yet so debilitating. I’ve felt that my family now think I’m a lazy, whinging, sour puss malingerer (!) because I can’t do or enjoy anything much. Perhaps that’s just me projecting onto them what I would possibly think… But they don’t understand what they can’t see, and until February, thought I had recovered from my illness. It really hurts to sense they are frustrated with me. That’s the worst aspect of it, to be honest. I feel it’s damaging not just me, but my family. It’s been terrible.
My GP also correctly pointed out that it is just so upsetting to come so far with my recovery, only to feel back to square one or three. It’s so frustrating, surprising, annoying- argghhh!
However, I have been so glad to get it off my chest by telling my GP, who couldn’t have been kinder and more helpful. I wish I had seen her months ago, instead of waiting for a mini-breakdown. I hope you have an equally sympathic chat with your GP. Just being listened to and believed is such a relief in itself. And it’s done me good revealing it here too.
I’m now looking forward to a few weeks recovering from an exhausting holiday that never was, and am hoping further practical help will be forthcoming after these medical tests. I’m also re-evaluating my work. I think I would prefer to do something else at my own pace from home. No idea what, because thinking is like wading through sticky toffee at the moment - but it seems necessary.
I hope it helps to hear that you are definitely not alone, and that we empathise with your situation completely, and there are a few things you can do. Do let us know how you get on. Very best wishes,
Notsofullofbeans X
Oh @Fullofbeans thank yo so, so much for your really honest post and I feel I know you so much better now Notsofullofbeans xx.
What a lovely understanding GP you have, I think there was a lot of people that contracted this ‘non Covid’. I think I got it at Christmas and I did not start to feel better till about May.
Probably the best things you did were to break down at work and to see your GP and be really honest.
Yes, the invisible symptoms. I hurt my arm a few months back and I was very bruised and everyone are falling over themselves with flowers and offers of help.
When I was diagnosed with Chronic lymphocytic leukaemia (CLL) people were shocked at the time but that was all as I was put on ‘watch and wait’
I had not had a day off work in the 15 yrs I had been there and suddenly they wanted a letter of proof of diagnosis and appointment cards to show appointments, it really, really hurt as my friend had the maximum days off sick with colds etc. every year and nobody questioned it.
My husband still does not understand my fatigue, it is not his fault, I do not think anyone that has not experienced it can.
Yes, you are never alone on here and I really love and want to send a hug to Notsofullofbeans.
I am now going out for my walk just one foot in front of the other sometimes.
You are such a brilliant support to others on here, thanks so much.
Please do let us know how you get on, be kind to yourself and we understand. xxxxx
I had a stunning walk, thanks @Fullofbeans and I thought about you and sent you loving vibes.
I hope writing your post helped you in some small way, a problem shared is a problem halved and all that, if only it were that easy.
I await a call back from the hospital about my arm and I will update you.
Please do keep posting, it is going to take a while to build yourself up and be very kind to yourself xxxxxxxxxxxxxxxx
Glad you had a lovely walk, @Erica - we need to enjoy this last bit of good weather if we can. And thank you so much for your kind wishes - I really appreciate them. Everybody appreciates you and your kindness here.
Yes, I do feel better for sharing my low point, thank you. I havè a tendency to try not to see my problems - I try to will them away - but they all catch up with me in the end. I should act sooner than I do. But that’s exactly it - a problem shared is a problem halved, and that’s why this forum is so supportive and helpful.
I’m glad you’ve acted on your arm. Could your platelets be a bit low? And I have been thinking about how you were treated at work when you were first diagnosed, after years of healthy, diligent service. That’s just awful. Employers can really guilt-trip people sometimes - yet few of us want to be ill.
Well - onwards! I’ll let everyone know - including @md67 - if I’m given any new, useful advice for fatigue, or if I develop any clever strategies to manage things, although I dont think I can reinvent the wheel. But the main thing is - none of us are alone in trying to cope with these things, IF we speak out. We have each other on the forum.
Lots of love to you, @Erica. X X
Hi there @Fullofbeans ik sorry to be slow getting back to you. Thank you so much for sharing your story and how you are feeling. Goodness so much of it resonated for me. There have been times since my Stem cell transplant when I have felt fitter than I ever have and then I go backwards for weeks…it’s so difficult and so unfathomable as well. All my bloods are ok as far as anyone can tell and yet I KNOW it’s not just me. Today for instance I worked for four hours and then went to bed and could get out of bed. Yesterday was broadly the same. But at the weekend I was kind of ok. I don’t know what is happening or why (most important) and whether there is a way to deal with it. As I wrote this I am doing so through a kind of brain fog of tiredness which is so debilitating.
I had two weeks off work and did nothing really and am now back four hours a day but today has been a real set back. I still have ambitions and hopes and dreams but it feels like this is standing in the way of it all.
I so understand what you say about your family. It must be so hard to live with me! But my wife says go for a walk or whatever and can’t understand tjat I can hardly make it to the loo when I am like this never made a circuit of the park.
My GP is ok but I think run out of ideas. I am on antidepressants and I do get very down and anxious and it could be that causing it but my overall mood is a bit better at the moment.
Gosh it is difficult.
Thank you so much for your amazing messages and auppprt and also to @Erica too. I so sincerely hope you get a way through it.
I wonder if it is lenalidomide for me. I take it 21 days out of 28 and maybe there is a pattern. I will keep a closer eye. I’m also doing a course on insomnia online to try to improve my overnight sleep. If I have any amazing insights I will let you know!
Hi @md67
Oh I really do empathise with your situation. I’ve had a full MOT with my GP, and I look in tip top health on every front (which is wonderful) so she thinks I have post viral fatigue from the viruses I’ve had this year - so there’s not much that can be done. Have you had any viruses lately?
I took the liberty of looking up your lenalidomide, and the NHS website lists ‘tiredness’ and ‘disrupted sleep’ as common side effects, particularly at the end of the cycle and for a week or two after. Maybe it’s this? Perhaps you need to speak to your consultants about the problems you’re having, and whether it’s the lenalidomide. If so, maybe your dose could be adjusted to improve your quality of life? Perhaps there’s an alternative drug they could try you on? I’m sure they’d want to try whatever they can to improve things for you - but they need to know how bad it is for you.
Let us know how you get on.
VerySlightlyMoreFullofBeans. X
Hi @md67 perhaps you have been through a lot emotionally, physically, mentally and practically and, although I am not a medical person I think it takes a long time to build back up.
It must be so difficult for you as your bloods are ok but you know it’s just not you. Hidden disabilities are so hard, especially when someone says ‘oh, you do look well’. my pet hate.
I have not been through treatment, but I remember so well for the last 5 yrs of my working life just working, running a house and sleeping. I was lucky to be able to use up holiday leave and banked flexi time which helped.
Yes, it must have been so difficult to live with me too!!!
I could also not walk for more than 10 mins at that stage and now several years later I can walk for a couple of hours if not more.
I would say give yourself time, get to know what triggers your fatigue and hopefully get to manage it better and be ever so kind to yourself, baby steps you have been through a lot, oh, and keep posting on here.
Hello. I’m new here.
I just signed up for the forum.
I’m Miss.Mamie. I too am dealing with long-term chronic fatigue from chemo treatments for stage 4b follicular NHL.
I endured R-CHOP and hated it. My oncologist was smart but not very communicative, and did not take any of my complaints of my side-effect symptoms seriously. He pretty much ignored everything I said.
I completed the 6 rounds of R-CHOP. After 2 rounds of immunotherapy follow-up, I told him of the overwhelming side effects I was experiencing and he ignored me. He was talking to a student shadowing him at my appointment and said that I was over reacting. At that point I refused to work with him anymore. I walked out the beginning of 2023. And I’ve never gone back to him.
I’ve learned to ask questions and speak up for myself. Find a doctor who will work with you. One Who will listen and discuss things.
When I was first diagnosed with lymphoma, I was so overwhelmed by the cancer diagnosis and I scared witless.
About 3 weeks after my Dx, I had surgery to install the Port. Then 2 weeks later I started R-CHOP infusions.
One week after the first chemo treatment, I collapsed and ended up in the hospital for 3 days. Again, the doctors ignored my input.
I went from speed walking to using a walker for balance. I was so weak and tired I could barely walk. Some days I was so exhausted that eating felt too difficult to do.
My oncologist was young and He had no empathy. His knowledge was all cerebral. He’s a very smart man.
I had “chemo-brain” and struggled with thinking and decision making.
None of my doctors would address my severe fatigue or other issues.
I kept a daily chart-journal to chart my meds, side effects and moods. And charted my protein, water, and food intake, and activities. It helped me to see patterns and effects from the chemo, so I could plan.
After the treatments, I wrote a list of how the fatigue and lack of energy was effecting my every day life and activities.
Fall of 2023, A new primary doctor checked my lungs and heart function and declared them “normal for my age”. I’m in my sixties. It sounded like another medical brush-off.
He refused to look into it any further by saying it would take too much time and money. Then he declared it was all in my head. That it was depression.
I tried the antidepressant. It added to the side-effects and I was still dealing with the exhaustion plus fatigue. I’m now off the antidepressant.
I have finally accepted that this long-term chronic fatigue is not going away any time soon.
I’m almost 2 years past the last R-CHOP and about 12 months past the last immunotherapy treatment.
It’s a relief to know I’m not the only one who is dealing with weakness and extreme fatigue from chemo, and the long term chronic fatigue.
Chronic fatigue and weakness is invisible. People say you look good, you sound great. They try to understand, but If people have never experienced it, they have a difficult time understanding and empathizing.
Some would accuse me of not trying hard enough and get angry at me. Even I tried pushing myself, saying to myself that I was lazy, etc.
Stop! Don’t put yourself down. What you are feeling and going through is real. I keep experimenting to see what helps me and what doesn’t. Keep learning 🤓.
I’m learning to notice how I’m feeling physically and emotionally. I’ve learned that at the First sign of stress or tiredness, to stop, relax and rest. I Pick one thing a day to accomplish, but if I don’t have the energy, it will still be there tomorrow.
This is my “new normal”, my life is forever changed. I’m learning to accept my limitations and find what brings me joy and peace. I try to find something to look forward to, manageable activities, outings etc…
Morning are best for me, by afternoon I usually consider my day done. Then I relax and read, nap, talk on the phone, etc…
It’s taken me a lot of time to learn this. We’re all being told to Do More, Be more, achieve more, etc. Stop!
You are no responsible for other people’s feelings and actions. Just take care of your health. Even if it means not living up to other people‘s expectations.
If you only have 6 teaspoons of energy, use them wisely. Don’t allow yourself to get exhausted.
It takes 3 days or more for me to recover if I allow myself to get exhausted. It’s a big set back.
The biggest encouragement for me is my faith in my Heavenly Father, and those who accept me as I am.
I’m only a little way on my cancer journey. I was told my cancer is incurable. I’m currently in remission. I’m thankful for every day God gives me.
I hope this helps and encourages another person on their journey…..
Hi @Miss.Mamie Welcome to our UK forum.
I just wonder where you live as if you are not in the UK you might find that our medical system works differently here and treatments and when and they are administered might vary.
I also live with fatigue and manage it on a day to day basis
Really look after and be kind to yourself
Reading the original post is quiet enlightening. I thought I was a just being a bit of a whinge, but seems like it’s not just me.
My stem cell transplant was three years ago, I was 49 at the time. My fatigue is worse than ever, and my concentration levels at rock bottom
I’m finding it really difficult to get motivated at work, and feel like I’m not pulling my weight.
If anyone has any ideas on improving concentration and motivation, I’d appreciate it.
Hi @Macamboy Don’t forget your body has been through a lot and it takes a long time to build yourself back up.
Perhaps talk your feelings about not pulling your weight at work and how you are feeling. with your fatigue.
I have found that I have learnt to manage my fatigue over many years.
What personally stresses me really sets my fatigue off.
When I am fatigued my motivation and concentration go out the window
My fatigue is also brought on by emotional, psychological, physical and practical issues.
Fresh air and reasonable exercise often lessons my fatigue. But at other times I need a rest or nap
I also had to cut my hours at work, which obviously had a financial impact on our lives
Be kind to yourself and don’t beat yourself up. Oh, and keep posting