Fatigue

Hi again Bubbleycat  ….. although I don’t have Myeloma but have lived with, been treated for and work with 2 rare types of T-Cell Non Hodgkin’s Lymphomas for over 26 years….. I totally understand….. but at the same time don’t understand blood cancer related fatigue.

I was basically on Active Monitoring for the first 14 years following my diagnosis in 1999 at 43.

I had a demanding University Lecturing Post and was on a full timetable for the first 12 years until a retired at 55….. my first type of Lymphoma is an incurable, rare skin Lymphoma where the tumours grow on the skin so I was having regular skin treatments…. Like having bad Psoriasis…. and along with my clinical team and my employers was able to fit the treatments into my none teaching periods, early or late in the working day and during holidays.

At times it was exhausting but keeping fit, following a good healthy balanced diet….. I was able to navigate this.

I do think the mental fatigue has a lot to answer for….. I would have times where I convinced myself that I was not able to do anything….. but on my regular hospital visits in the first 14 years (around 900 visits to Dermatology) I would pass signs in the corridors that said that a week in bed or being inactive for the equivalent of being in bed more than the normal period of time added 10 years to our physical age….

I am sure that some of the group members will have their thoughts.

https://www.myeloma.org.uk/library/fatigue-and-myeloma-infoguide/ 

I had to stop work just now sat down and saw your post. I’m a year post stem cell transplant but I still can’t work out if I’m tired because I’m working and I’m older or because of the heat or because of the treatment. So I’m going to eat something and hope that brings my energy back.

Hi Jo100 …. having had 2 Allograft Stem Cell Transplants (June 2014 and Oct 2015)….. I can definitely appreciate the early days/weeks/months…… even years post transplant challenges of find out what is normal….

My Head SCT Consultant told me that going through the SCT process (diagnosis, treatment and recovery) is like doing a marathon and a boxing match every day over all the months…… and this was done without any training.

Think about doing the London Marathon and boxing Mike Tyson without any training and you had to finish it as your life depended on it……. this is the journey we have been on so it most likely will take much longer than you would think to get back to some normality.

Not giving yourself enough time and finding that median normality could be a backward step……. be a patient patient .

Hi Bubbleycat,

I am just a layperson but here goes with a few thoughts.

In terms of mental fatigue, having the prospect of myeloma becoming active some day would be enough to cause anyone stress and sleepless nights. Could this be contributing?

Smouldering myeloma pretty much by definition shouldn't be causing symptoms. However, Vitamin D deficiency is exceptionally common among individuals with plasma cell disorders. Studies consistently show that a high percentage of patients have suboptimal or severely deficient levels. Vitamin D deficiency can definitely cause fatigue. When I was diagnosed with active myeloma, my healthcare team prescribed 3 x RDA of vitamin D as I was so lacking!

Also, fatigue can simply happen. It may not be related to smouldering myeloma at all. Possibly get it checked out with a GP anyway.

Hi I've just seen your post and im 2 and a half years post sct and have just been having this conversation with my husband about fatigue.  Im 71 and keep fairly active  but lately the fatigue really gets me down.  Ive just cleaned my bathroom and feel like I've run a marathon.   Is it the heat or my age or everything rolled into one but its never bothered me before.  Just listen to your body and rest when you need it. We've all been thru an incredible journey  and deserve the rest!   We are all here to speak to you and offer our advice, don't hesitate to ask.  Take care

Thanks for that, I suppose but I’m thinking is maybe this time is as good as it gets and I should do stuff that maybe next year I won’t be capable of

Hi chicken 2

thank you for the input 

I am prescribed via the doctor vitamin D and I have B12 injections every 3 months already and the blood test that I have they are all stable ,but you are right these things can cause fatigue as well 

Hi  Bubblecat      Vespa  here,  AKA  Kevin :)      i am   2.5 years post stem cell transplant,   and   in remission and  good health,        i am no   health  expert,  but      fatigue is a big part of MM,  and other blood cancers,  like Thehighlander   indicates,  and  others,      i have found not to fight it,   go with what you can do,   explain to  colleagues that  this is part of the  illness,  and its a blood cancer,  so your  blood cells,  have a job on their hands to keep fighting,   give them  the tools that help  them,      good diet,     i am still on Calcium and Vitamin D   tablets every day,       talk to the GP,     ask for full blood count,  "  do you use the NHS App"  whilst not perfect,  i have found knowledge  from understanding my own results,  in history  format,   to compare each results,  and    explanations of the  Acronyms used.      my Haematologist,  is very good and informing  my GP  practice in letter format,   what my  status is,   he treats the cancer,    they    treat other symptoms,      with the recent heatwave,    my   fatigue level  was  easily reached,  but once i slept well,  i felt better prepared for the day ahead,       having no energy   when you get up on Friday,  makes perfect sense to us patients,     you owe it to yourself  to rest,   i used to go back to bed,  for 2-3 hours during my treatment,   this helped,    i  was diagnosed on my  66  th birthday and it was my  retirement  day,  GP   calling at 9.00 am on a monday, ( yes a minor miracle in itself )  with the prognosis,     but it  gets better,   this is the good news part,   the  journey is tough,  but it is worth it.       We are here to support with  any advice we can give from our own personal  experiences,   best wishes   Kevin