Fatigue

[Gundestrup1]

There is a common thread here of fatigue associated with spinal cord tumours. What i find most interesting is that our neurosurgeons all seem to think that this is not associated with having a tumour so why do we all suffer it? I sometimes wonder whether there really is enough research going on into this condition. There must be something relative if so many patients feel this way so why do surgeons continue to disregard it? anyone agree?

[cindylee]

Fatigue is one of those things that you can't really tie to a physical symptom. I just don't think doctors realize the incredible amount of energy it takes for most of us to get through a day. I know that I have to push myself most days to walk. Then I find that I am tensing up my body. That makes me tires. I also have other health issues..the breast cancer, radiation fatigue. I have had people say to me..you don't look sick, you look good. Like they were expecting me to look like death warmed over. I think we also have the stress of just dealing with the tumor and the thoughts of it coming back. Stress makes us tired. I also get fatigues if the weather is about to change. I agree that no one really reasearches the fatigue associated with spinal cord tumors. Cindy

[billanschell]

Cindy's answer pretty much nails it. For me (and I used to have pretty boundless energy), it's a combination of the cumulative effects of pain, the sedative effects of the meds themselves, and the fact that many activities - especially walking - take much more concentration and are much more physically draining than they were in the past.

Also, it's important to know that Neurosurgeons are not the most informed sources on our post-surgery symptoms. That's not their focus; being a great neurosurgeon is a lifetime's work in itself. After being disappointed in my own (world-class) NS in my first couple of post-surgery appointments, I came to realize that he really doesn't have much to say about the post-op condition, nor should I really expect him to. That's what rehab doctors and PT specialists are for.

--Bill

[susan]

Geez, I've never really felt like a ball of fire (even though I have always pushed myself-working full time, volunteering, working out, etc). If I get any more fatigued, I'll be in a coma.
I have the sensation of having a small child sitting on my right shoulder. It does make it feel harder to walk. Too bad it doesn't help me burn extra calories while walking.
I have been taking Neurontin for a month and I swear I have more heart palpitations that usual (I have always gotten them from time to time due to a prolapsed mitral valve). Has anyone else gotten palpitations while on Neurontin?

[Think Positive]

Oh my gosh, most days come dinner time, I feel like I am going to kill over - and that's after a "normal" day of nothing extra-strenuous. I agree with Cindy that doctors and others have no idea how much energy it takes for us to get through a day. Dealing with the pain itself wears me out - both physically and mentally.

Bill, on my first post-surgery appointment with my NS, I told him how very disappointed I was that I had not heard from him since my release from the hospital (I was in for a month, 3 weeks of that was in ICU). He literally put his hand to his chest and said "you expected to hear from me personally?". I said "yes, that would have been nice after everything that I have been through". He was stunned. He looked at his PA and said "we will keep that in mind for future patients". Yea, right!

Kim

[ScrapHeap]

Agree w/Bill and others on the causes of fatigue. It's cumulative. It's difficult to manage many times - Even more difficult when others, especially loved ones, don't quite understand. I find myself reminding them, and myself, that it's frustrating for them. Which is usually followed shortly thereafter with their admitting to being frustrated. I politely remind them that it is just as frustrating for us, if not more so. Just from a different perspective.

I never expected any postcards, etc., from my NS. I got exactly what I expected from him. An attempt to correct a difficult problem to the best of his abilities. Schedule and coordinate post op visits and aftercare. Evaluate my progress, or lack thereof, and suggest a direction to pursue accordingly. I received all of that and then some.

I was assigned a case Doc in rehab. He and his assistants handled whatever the NS did not. He monitored my progress through infrequent visits (me going to his office) after I was released from inpatient rehab. 2 years later and he has done all he can do for me unless another issue pops up. I last visited w/his office around this past November/December or so. Though his office door is still open to me as an option should I think it's needed.

Most of the above has little to do w/the question posed... being frequently tired. Guess I'm just rambling on a bit. Sorry if I got too far off track.

[drummer904]

Susan, Im not on neurontin but i do have palpitations sometimes, seems like ever since i've been on coumadin. and sometimes my heart would just take off and beat really fast and hard for a few minutes and talk about feeling fatigued!! i think its just from stress, I've been really irritable lately and have no patients!!I have xanax but am too stubborn and dont want to get hooked on that! anyone else get rapid hearbeat??

May 31, 2008 13:18:39 GMT -6 susan said:

Geez, I've never really felt like a ball of fire (even though I have always pushed myself-working full time, volunteering, working out, etc). If I get any more fatigued, I'll be in a coma.
I have the sensation of having a small child sitting on my right shoulder. It does make it feel harder to walk. Too bad it doesn't help me burn extra calories while walking.
I have been taking Neurontin for a month and I swear I have more heart palpitations that usual (I have always gotten them from time to time due to a prolapsed mitral valve). Has anyone else gotten palpitations while on Neurontin?

[ScrapHeap]

Yes. I have some racing of the heart from time to time. I'm not convinced or willing to deny it is due to my present condition or the meds (lyrica) I'm currently taking. My particular problem w/that seems to be inherited. Endogenous panic attacks run in my family from both my father's and mother's sides. I remember having them as far back as junior high school. For no known reason, out of nowhere, they kick in. But I would not rule out sc injuries contributing to them in some way. A lot of weird crossed signals and changes seem to take place w/in our bodies from a major component of our nervous system being damaged.

Aside from that, I find most of my elevated heart rate incidents are from having to work extra hard to accomplish simple tasks. Being in pain or discomfort most of the time makes it worse. Most of the time I find myself huffing and puffing to move along. It's a lot like someone w/normal physical abilities that is jogging or performing a moderate working out.

[susan]

When I was hospitalized, once prior to surgery when my symptoms suddenly got worse, and then for the surgery itself, I had EKG and rhythm changes that are not the kind that are going to kill you, but are annoying-premature atrial contractions. I attributed that to the stress of the situation. I didn't think I was THAT stressed out now, but maybe I am.

In order to function day to day, you have to push your feelings aside and get on with it, but they really don't go away. It is kind of hard to forget about it when you have physical sensations that are always there. I think that's why I like to sleep, it is the only time I don't consciously feel pain/numbness/pins and needles. When I first wake up, sometimes I feel like a regular person, I have no odd sensations at all, that is until I move. Then other times I wake up to 2 completely numb arms. Maybe the stress of always having some abnormal sensation is fatiguing to our brains, even if we think we are doing a good job of dealing with it.
You know how prior to developing symptoms of a spinal cord tumor, if a limb fell asleep during the night because of your sleeping position, your brain woke you up to make you move (usually you clocked yourself in the head with a completely numb arm). I had episodes post-op of my left leg being numb (my symptoms are usually all in my right side) and I could absolutely not sleep. I spent the night walking around the house, slapping it, stomping, etc to get it to get un-numb.
I think your brain won't let you sleep because normally, if you don't relieve the pressure on a numb limb you can get permanent nerve damage (I've seen more than one drunk person who fell asleep on an arm and had nerve damage because their blood alcohol was so high they were bascially comatose and didn't get the message to wake up & move).
We have to sleep all the time with sensations that normally would not let us sleep. I can sleep with a numb right arm, but not a numb left arm or leg. I wonder if anyone has ever looked into the effects of sleep disturbance in people with long term numbness? I'm pretty sure our sleep patterns are interrupted, which leads to more stress and fatigue (& palpitations, if you are susceptible). Hmmmmmm

[tc]

Hi, Susan,
That's a very plausible theory about why we might not be getting the good night's sleep that we used to get.
Darn - I was hoping that waking up with my arms totally asleep is just a pre-surgery thing. I am disappointed to hear that you STILL do that.
Teresa