Brett G
Posted by

No Pain, No Fatigue!

Brett G
Posted by
13 Dec 2016

Positive check up, and what may be a solution to long term post transplant pain and fatigue for me

Celebration - for the first time in 6 months+ I have no pain. Well nearly ‘no pain’ – my shoulder and back are not quite sorted, but I have an Osteopath working on those for me. But, the major constant pain I had in my legs is gone! I have had no pain killers for 48 hours now, quite an epic event!

Pain can be really general post transplant or post chemo. I have had varying responses to this from the medics I have seen. One basically told me it was as I was just getting old. (43, old?) Luckily at my 14 month check up last Friday (passed, great news!), my consultant was really open with me and said ‘we don’t know what causes pain post transplant, but we know some people suffer it’. We discussed taking vitamin D as this can help with bone pain and so I am on that. I also raised that my ferritin was high (>4,000, should be under 400!) when last tested 6 months ago, could this cause it? Basically the 45 odd units of blood I have had through chemo x 6 cycles and transplant, have as well as keeping me alive when my counts were wiped out, led to me accumulating a big ferritin excess in my body. My consultant suggested that the ferritin tends to cause joint pain rather than within bones, but we should get it down, how about starting now?

Ok, I was willing to give that a go, I thought. Half an hour later I had a needle in me and had my first 500g venesection. I was a bit apprehensive, but the nurse does a lot of these, and it went fine.

But – what a result – from the next day on I have had no bone pain, no fatigue, and have had masses more energy. My ‘chemo brain’ is also much better. I actually feel like me for the first time in a long time and have good quality of life. Early days but looking good, and with this good a result, going back every month for the next 2 years for more blood letting is no hardship.

I can’t say 100% scientifically if in reality the venesection itself is the cause of the improvement, but if it is not then it is a very fortunate coincidence. Different people will have different causes of pain, but if you are at least 12 months post treatment and have pain and/or chemo brain it may be worth exploring a little bit further to see if something can be done to fix it.

 

Comments

17.12.2016

Excellent News. Sounds very positive. Really enjoyed reading your post. Uplifting.