I'm tired of fighting the pain

[gary s]

I'm tired of fighting. It's been 3 1/2 years of constant pain from the shoulders to the toes. Most days I can deal with it, but it takes so much energy to keep going. I;m tired. I know some of you have it worse than me, and I admire you tremendously. Everyday I try to stay upbeat, but I'm tired. How do you keep going? How do you cope. With pain meds that even partialy help my head gets stupid, so it's either pain or stupid. Help

[deirdre612]

Gary,
I don't have any answers for you, I didn't experience a lot of pain, mostly numbness. But I do understand about how much energy it takes to keep going - you look fine on the outside but everything you do is such an effort. I know someone here will have some information that may help you, just hang in there.

[RobertG]

Gary, I don't have much of a supportive word for you but i just know what it is to be in your shoes with the pain and all.

I think the answer is in keeping busy in non-tiring, non-stressful activities and limiting the use of pain medication. By activities, I mean like exercising, mowing the lawn or working in the garage on a project are examples i can think of. I hope you find something that works for you.

Robert

[peilynne]

Hi Gary,
I'm sorry you are having a rough time, to put it mildly. The aftermath of constant pain related to spinal cord tumors is, sometimes, too much. I have constant pain, its always there and I can never seem to get on top of it for long. It pis#@!# me off on a daily basis. My pain is mostly in the incision area, C3 to T2. My whole upper back, neck, and I take painful spasms in my left leg that sometimes go up my back, and sometimes I have terrible back spasms. I can't even look forward to laying down because it hurts so much to get in and out of bed. If you met me. though, you would go away saying "what a positive person"! I don't talk about the pain much to people because they could not even comprehend the pain. You can only take so much medication. Things I find help me is this:
know you are not alone. Please come here to vent and for support. Most of us understand the pain.
I tell myself every day that there are people who would trade places with me in a heartbeat. I met a lot of people at my spinal cord rehab who were much worse off than me. They couldn't use their arms or legs, even feed themselves, they had so many other medical issues. Some of them had cancerous tumors. Some were so young, some were young mothers. I know it doesn;t take away your pain, but there are people worse off.
I try and keep very busy. I go to therapy every day as I am still trying to walk again. Do things you like, like read, listen to music, go on your computer, anything to take your mind off pain.
Talk to a pain mngt doc. You deserve to have a quality of life. It just might take some experimenting to get the right dose. I'm sure you've probably done this. I did try lyrica, it took awaY ALL MY PAIN, but I felt too drugged and I had some other side effects. And they r always coming out with new drugs.
I'm attending a spinal cord conf in Canada for three days the first of November and one seminar is on pain mngt so I will keep you in mind and post anything helpful I learn
You can talk to me anytime on here, I'll always be here for you.
Stay strong and take care of yourself,
Lynne

[peilynne]

I forgot to add that I'm using a tens machine on my back and it is helping a lot to keep the pain from really flaring, and acupuncture helps as well. I'm also getting botox injected in my left leg every three months to take away the tone and spasticity which makes the spasms less painful.

[Tmasgio]

I know this is a dumb question but are you going to a pain management specialist? I have heard from others with Spinal cord injuries that sometimes an epidural to deliver pain meds into the spinal cord has helped them tremendously. I hope you find relief as no one should have to suffer from the kind of pain you are describing.

[paul55]

Hi Gary

I know just how you feel. I feel the same way, only you've been dealing with your pain twice as long as me. So I understand. We all have some degree of pain we are dealing with, some much more than others. I guess it's how we decide to deal with it. I do know this, It can have a very bad effect on your mind and put you into different states of depression. That's another story to deal with as well. There have been many times I wanted to just say $%^& it, and give up, but when I come here, my outlook seems to change generally for the better.

I know there are so many that are worse off than me, but it still doesn't take the pain away. It's real, and we still have it. Over time, we hope to deal with it the best we can.

Hang in there guy, you can do it!

[Joel]

Gary:
OK, let's start from the beginning--please tell us some of your treatment history--taking neurontin/lyrica? seeing a PM specialist? doing PT? let's talk about it, OK? We're with ya bud.
Joel

[sarah]

Gary,

I was here when it was the old board. Now i have a brain tumor. OK, i know it's tiring, but tell me more about what's going on with you.

Three years ago, because of all the serious illnesses we had, we got a "therapy puppy". I know! Everyone thought we were nuts, but it was the best decision we've ever made!!!

What it did, was give us something else to think about. Something else to "care about" than ourselves. In the end, it we were amazed with the unconditional love and perpetual happiness that our Schnoodie brought into our lives.

I also find that going to choir practice makes me feel better. Something about music......the words, works for me. Most weeks, i don't want to go, but once i get there, i find out that i feel so much better afterward.

Hitting any buttons of yours here???

Grandma

[gary s]

In June of 2005 I had an intermedulry(??) removed from C-7-T5. Originally declared cancerous, but turned out benign. Had 2nd surgery in Dec 2005 to finish removal. With extensive PT I can walk again with a cane. I have tried just about every pain med out there, I can't remember all the names. I am now on 3600mg of nurotin a day. I was also on baclofin but it did not agree with me. The docs are talking about a baclofin pump, sounds good but it means another surgery. During the day I can tolerate pain (usually)because I am busy, but laying in bed at night is another matter. With sleep meds I am tired all the next day. It's a vicious cycle. I am thankful for everything and apologize for feeling sorry for myself. It just gets to me once in a while