Help with frustration with fatigue and muscle weakness
Hi I’m 2years post bmt , i get very frustrated and upset , because I can’t do what I want to do , my muscles ache and my joints ache and sometimes I feel very low
has anyone felt like this , or has anyone got any ideas for improvement
I can understand your frustration, recovery seems to take so long. I'm assuming this is something that just hasn't come back at all rather than something that has developed recently?
I found that it took an incredibly long time for my muscle and strength to return, and I don't think it has ever got back to where it was before transplant. I don't ache all the time, but if I've been pushing myself I get tired more easily than I used to and feel the effects afterwards.
It is frustrating and you feel like you will never get your fitness back, but you will eventually get close to how you perhaps were. I'm not sure we ever recover fully, and then it's a case of remembering what your body has been through which is a really hard battering. For me I think it took longer to recover also because of the GvHD and additional treatment I had because of that.
My only recommendation would be to keep exercising, but within your limits. Don't overstretch yourself or that will make you ache and increase your frustration. Hopefully your stamina and strength will slowly increase. I used to walk my dog a couple of times a day to get some exercise and fresh air.
10 years after my transplant I don't think I'm any different to how I was before, until I try to do something more strenuous than normal. Then I get tired, out of breath, and ache afterwards. I've learned to know my new limits and respect them.
I hope this helps and that others can give you their insights.
All the best,
Just a quicky, sorry Steve, I'll read your post later ...
1. Be my own best friend. Talk to myself like I would a good friend. Encouragement and praise.
2. Accept myself as I am. It won't always be like this. My body needs this .. part of recovery.
3. Tai chi beginners you tube.
Sitting gymnastics for geriatrics, but that's for when I'm on the way out my hole. I took 2 years. Fatigue is better with myfortic, sleeplessness too. :(
Best of luck
This original question certainly resonates with me. I am now 7.5 years post transplant and whilst otherwise pretty well, I’m sorry to report that I still have some muscle pains and weakness. This was a huge frustration to me in the first few years post SCT. My clinician told me then that as a post-menopausal woman, normal changes in hormone levels meant I would never recover my pre-illness ‘strength’. This has certainly been borne out, despite my efforts. It is impossible though for me to separate out how much of this is secondary to the illness/treatment etc and how much to natural ageing. I obviously don’t know your age (I’m now in my late 60’s), but I feel a few years down the road has made me more accepting of the new me. Keep doing what you’re doing and building up your stamina. It’s tough though, isn’t it?
that helps a lot
i just want you to know that I’m thinking about you. I know ( from my daughter) that it’s a long, hard journey but I also know the strength that you all have, to have got through the transplants and get up every day and keep going.
Please be as kind to yourself as you would be to others.
can I ask if you are still on low dose prendisolone, or prednisone which are basically the same thing? As low dose can also affect very much, fatigue, muscle weakness. Mood swings? I am currently on low dose as starting to taper off them and the support groups for prednisone all seem to state the above symptoms when on low dose prednisone. I can’t wait to get off them and see if I improve.
im not on them meds , I’ve had m.e for a longtime since having Hodgkin’s disease so having my bmt hasn’t helped , some days I feel great and other days I can’t do anything
I think the mood swings are also my age I’m 60 in a few months, my brain says I can do everything but my body says no.
hope you all get the help you need
love & best wishes