8 replies to this topic

[BPilgrim]

Hey all.  I've tried everything from Adderall to Caffeine to other odd drugs my doc prescribed, but nothing gives me long term relief from fatigue.  I'd love to hear what other people have tried, and if it was successful.  Maybe an Rx, or diet changes, or weight loss, etc?

Thanks.

[CallMeLucky]

Exercise can help when I can push myself to do it.  But part of the fatigue is the mental aspect that makes it hard to get motivated.

I am looking into acupuncture, I have heard that it can help a lot.  I'll report back when I find someone on my insurance and get started.

Unfortunately it seems like a certain amount of fatigue is going to be there no matter what.  It sucks, but some days are not as bad as others.

Disappointing about the Adderall, I was considering trying that.  Have you tried Nuvigil?  That was another one I was looking into but to be honest I am so against taking meds in general I have been reluctant to do it.

[Susan61]

Hi:  The caffeine works for me really well.  I am a big coffee drinker though.  I have my  moments where I feel I really need that rest, but then again I am in my 60's.   I see the difference in how I do things since I got older. My husband works the night shift, and I have a bad tendency to have coffee with him before he goes to work.  Then I get a second wind to do things late at night..  I was vacuuming and some other things at 1:00 in the morning.

     You have to find what works for you to give you energy when you  need it most.  Sometimes nothing helps if you really feel that fatigued, and just a short nap or sit back with your legs up if you can for awhile to rejuvenate your energy.

Susan

[BPilgrim]

Adderall affects everyone different, but in my case, I got crunching headaches after it wore off at the end of the day.  It also made me irritable as it wore off.  It does feel euphoric the first few days you take it, but that wears off, and then you're just an addict of sorts.  Oh yeah, it also takes away your appetite.  I lost a lot of weight in an unhealthy way.  I wonder if all the parents who give it to their kids would feel the same if they tried it themselves first.  Powerful stuff.  I saw the CML-Nuvigil study and need to look into it more.

[cousineg]

See fatigue in CML

[valiantchong]

I think tea works for me, I like English tea, Darjeeling, Jasmine works for me, without sugar and milk is ok.....Initially when dx, depression set in, made me feel tired sleep often. However when I started working again, I am not that tired, after 1 + yr of medication, feeling ok again, not to tired even daily I sleep after 12 - 1 am and less than 7 hours.

However when time I am depressed I will get tired easily... may be it is affecting me psychologicaly that in turns make me tired and not physically....

[HeatherZ]

Before I was diagnosed with CML I was taking Adderall for ADD.  A few years before dx my ADD had gotten to the point that I was really having a hard time functioning like I was used to without meds so I started taking Adderall.  After dx, in talking with the onc, we felt that the Addreall was masking some of my initial CML symptoms and my anemia.  Since I hate taking more meds than necessary, we decided to stop the Adderall to see how I would be.  I am sure after all those years I was an addict and it really hit me hard when I stopped.  I am now 21 months into my CML journey and I have often thought about going back to the Adderall just for energy sake.  Even with the brain fog, my ADD has been okay; I do have times where it is bad but I am dealing with it.  I have also found it hard to tell if my weight gain has been due to stopping the Adderall or if it is from the water retention of Gleevec; likely a little of both.  Since I have issues with anemia and oral iron does not absorb for me, I get IV iron every few months and that helps.  I try hard to just push through by taking the dogs for a walk, shooting some hoops with the kids, or tossing the football with the kids but when it gets too bad I just have to give in and sleep.  Sometimes I go for a span of 3-4 days where I am sleeping  for 10-11 hrs a night but then I bounce back to my normal 8-9.

[everonward]

I fight through exercise - it's not easy but a daily walk or just moving around the house will help - basically don't give in.

[chiocchi]

I am 54 and was dx 21 months ago.i am dong fine but I do use ultram throughout the day to keep me going.not sure if it's a good idea but it works! I am a full time plus rn,need to keep going.i I make sure to get to sleep so I can at least get 7 hrs if working. If I have the day off it is not unusual for me to sleep 10-11 hrs without a sleep aid.i also exercise 2-3 times a week which helps a lot with keeping my energy  and spirits up. Hope you feel better energized as time goes on,and aren't we blessed to have more time even if we do have to fight the fatigue?