Wierd post-CK symptoms -- should I worry?

[ppearl214]

ah, the dreaded fatigue.... ok, here goes (from my perspective/experience):

I know that all brain tumors (regardless of type, whether benign or malignant) and fatigue go hand-in-hand. There is a brochure that we posted here a while back that was written by Dr. Peter Black of Brigham/Woman's (Boston) and Nancy Conn-Levin (she just spoke recently to the ANA NJ support group).... here is the brochure (you will need Adobe to open it as it's a .pdf file):

http://www.modularmisfits.com/forums/files/Brain_Tumor_and_Fatigue.pdf


Now, based solely on my experience, fatigue hit me hard immediately post CK.  The first weeks were tough and I have to believe that part of it (not all but part) was due to emotional stress of the treatments, as well as what the body endures during treatment and knowing fatigue is all part of brain tumors.

Like you, I had (and on occassion, still have) the sharp head pains. I've noted it to my CK team (I do all of my follow ups with them, with my back-up surgeons and my PCP).  Not completely known if, in my case, they are "ice pick" migraines as I only have minimal facial numbness involvement. 

Here I am, over 2 yrs post CK.. and there are days I get whacked with the fatigue... and there are days I am fairly ok.  We do know that forms of exercise that will help raise the endorphine levels in your body to help in alleviating the fatigue.... just a thought.

Hang in there.... oh, the ride we ride, but honestly, you are doing fab. Hang tough!
Phyl

[Tumbleweed]

Thanks, Phyl. you mention "forms of exercise... to help in alleviating the fatigue." Are you suggesting I go for a walk, for example? I felt like maybe I shouldn't push it and should just rest as much as possible. Did exercise help you?

Thanks,
Tumbleweed

[Lorenzo]

HI Tumbleweed,

Sounds like you're going through more or less what I went through. Rest assured that the fatigue does get better, it just takes time. This is major surgery you had, on your brain! Needless to say there are effects from it that will hit us hard. We're not all the same, some have a much easier time, others had it much harder too. I know that my fatigue took about 8 months to get better, and didn't fully vanish until about 12-14 months. This said, even now 3.5 years later, if I do too much or push myself too hard (doesn't happen often! ) I still get tired easily. Personally I think that fatigue is something that's here to stay for me. Maybe not so much fatigue, but lack of stamina. I have more energy now than I had for a long time, even pre-Ck. But the threshold from feeling fine and energetic, and feeling tired is lower, and the change over can come very suddenly without much of a warning.

One way I had to deal with the sudden and incredible fatigue was to take naps whenever and wherever I needed them. that was the only way for me to function. I slept in bookstores, car, hotel lounges, know all the spots one can have a micro-nap in my town here. Even slept at work in the staff office (teaching has it's advantages). Take is easy, rest when you need to if you can, your body is healing and will be for a while. Listen to it.

Good luck,

Lorenzo

[Tumbleweed]

Lorenzo, thanks for your perspective. I had unrealistic expectations about my recovery time. A nurse practitioner at Stanford said I "might be fatigued for a couple weeks." When I started rebounding strongly on Day 6 post-CK, I thought I was through the worst. Three days later (and now still), I was back to square one. Knowing this might take months or years gives me more patience with it.

I guess I should cancel that mountain climb I had scheduled for 3 weeks from now.    Sounds like I'm joking, but seriously that's what I had planned! It's hard to let go of being very active. I guess we can't all be like Lance Armstrong. I think I need to rethink my capabilities, at least for this summer... or year... or decade. Man, this sucks.

Best wishes,
Tumbleweed

[Lorenzo]

HI Tumbleeed,

Well, ok, maybe mountain climbing might be a tad ambitious alright, but going to the base of the mountain and enjoying the view and fresh air might be nice, or as far up as you can manage.

I'm not saying that it might be years for you, months maybe, but just how long, who knows! You seem to be a fit person if you do mountain climbing, so I can imagine this sort of level of fatigue must be very frustrating for you. At the same time, just because you are fit, it might mean that you'll get over it faster and recover at a faster rate. Basically, nobody can predict it, and one should mind one's body and take the time to heal. However, a bit of pushing and challenging does no harm at all. In fact I think it might be a good thing to push a little form time to time. But maybe not just right now.

The fatigue that I experienced did not remain at the same level for the entire 'fatigue period'. As the months went by I was able to do more and more, but always minding that I would not step over the fatigue threshold. Doing so would have meant a few days of little energy. It really was a time of thinking what I could do and prepare. Going out socialising or for meetings meant a nap before, and a quiet morning the next day. It's all about stepping back and see what you can do. Takes some adjusting, both in terms of scope and ways of doing things. But you'll get used to it, and soon you'll find yourself back to a level of energy that might even surpass what you had before treatment. Be patient. You'll get there. Remember, this is the start of a new life, and you need to see how you can return to as close as before as possible. Might be hard to say, but it may well be the case that it will never be quite the same. Close, but not the same. For me, I feel better now within myself than I have for years and years. Treatment is just a step in the process, now you're in the next stage.

Ciao, Lorenzo

[Tumbleweed]

Thanks, Lorenzo, for the extra detail on your recovery. It  answered some lingering questions about how much I can push myself and what to possibly expect overall.

Best wishes,
Tumbleweed