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CFS post Allo-SCT

edited August 2020 in General advice

Hello everyone

I'm writting today as a patient with a question and an Online Community Champion.

I'm wondering if anyone has experienced Chronic Fatigue Syndrome like symptoms or challenges post SCT?

I had my Unrelated Allo-SCT in 2019. A very complicated journey. I'm sure many of you can relate to things not going your way post SCT.

I had a failed graft just weeks after my Day 0 and recieved my second transplant mid May 2019. 5 months later. Spending 7 months in hospital bed bound physical movement was alien to me. Weak and a huge loss of muscle mass.

However a year out of hospital I find that my faitgue levels fluctuate a lot. Which I know is very normal and can be long standing. I'm ok with that.

My challenge is that my faitgue is triggered by exercise or at least intense exercise. I find I experience physical symptoms like headaches, loss of focus, inability to concentrate and the good old brain fog.

My question is....how normal is CFS like symptoms post SCT? And does any one else exerpience this?

I have professional awareness of pacing and gentle exercise from my career however I feel I struggle to apply techniques to my day. A lot of the time wanting to feel a sense of accomplishment. But realsing I have quickly over done it.

All the best,

Michelle

Online community champion

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