Like most other spinal cord injury patients, I suffer from chronic and constant neuropathic pain or nerve pain. For me it's normally a band of pain around my chest at the injury level and it feels like a bad sunburn, or a tight straight jacket with the inside consisting of steel wool or coarse velcro against my skin. It's not the sort of pain that comes with a sudden acute injury, and doctors simply don't seem to know what to do about it. The medical advice is that you just have to 'learn to live with it',
I usually explain it as if the upper part of my body, the unparalyzed part, is sitting in a tin can with sharp edges all around the top. And when I move, my body rubs against those sharp edges. Over the past ten days the pain seems to have become steadily worse (at least until Sunday), and I've been pushed into doing more active pain management.
There's a conundrum here, because I don't like to simply take more drugs, so I tend to feel I should just 'grin and bear it' a lot of the time. But if you continue doing that I get to the point where I'm really not functioning very well, if at all. I just sit and gaze out the window, and miss writing blog posts and other constructive things I could be doing. At that point I think I need to do something! And the medical advice is to take whatever you need to control your pain before you get to that point.
I do several things to try and control the pain. I take a drug, Gabapentin, which should reduce it, but I'm not sure that it's actually working. After a bad day Saturday and several days before, I went back to taking some cbd/thc tincture, which does seem to have helped in the past. The disadvantage is that when I've used this regularly in the past I've felt a little dopey during the day. I'm dopey enough without adding to it! I've also added simple tylenol a couple of times a day.
One thing that really helps in the evening is a bean bag heating pad, which Mrs. F.G. warms up in the microwave for me. Using it for an hour of more after I'm put to bed really helps, and I fall asleep easily, thank goodness!
But a big part of my pain management that you might not think of, is keeping my brain occupied. As long as I'm consciously thinking of something else, or reading, I forget the pain. I seem able to just ignore it. As well as having a book on the go, I'm constantly using my cellphone to read the news or play sudoku. Sometimes, even though I'm glued to my cell phone too much, I think it's actually my best pain medication.
I learned yesterday (even though I've been asking for months), that there is a pain management nurse available nearby. I've requested an appointment, and hope to get more advice about what I can do soon. In the meantime, I'll continue actively doing what I can, but if I miss posting you'll know why.
Hugh tried Gabapentin ,but after 6 days had the most massive side effects, and cannot take it ever again. Nerve pain can be unable to be explained, and we truly understand how you cannot describe it at any one given time. Distraction when it is at a lower level seems to be the answer here too. I hope the views from your window, the birds, the snow falls, and all else will be ample to keep your mind and brain alert, and when I read your words every blog post, know your mind is as alert as it ever was, and your inner strength is massive.
ReplyDeleteMy husband suffers from nerve pain also...in our experience it comes and goes with no rhyme or reason. He has a standing prescription for pain meds but hardly ever uses them....heat helps him also...it is like the heat messes up the signal to the nerve perhaps confusing it. Gabapentin did not work at all for him so he takes an anti seizure medication called Tegretol (he calls it his stupid pill) as he thinks it makes everything work slower. He has tried acupuncture, injections...not much seems to help...weather sometimes makes it worse in the Fall and Spring...
ReplyDeleteHopefully you can find something that works for you. My husband says keeping busy helps:)
I am sure that I cannot begin to imagine what it must be like dealing with this every day. As I get older my back sometimes gives me a little grief, nothing compared with what you experience of course, but I can usually walk it off. You never have that option, do you?
ReplyDeleteSo sorry you have to go through such pain! I will be praying for you!!!
ReplyDeleteI had a serious accident twenty years ago and have nerve pain down my right leg from the injury. At first it was hard to deal with, but as the years passed, I either got used to it, or it got better. Lately, however, it's begun to return, and I get relief from CBD cream. But it's nothing compared to your situation. I do notice how difficult it is to ignore it when I'm not busy. :-)
ReplyDeleteIve heard that approach to pain management before, from a patient with a spinal tumor. Occupying the mind elsewhere, if you can, seems to be his approach, too. The Gabapentin and Tegretol, which my late husband took, for seizure control, do slow down the brain's functioning, though, and you can't think as clearly or as fast, even if the pain is less. I agree that a pain management nurse would be a great option for you, though she'll probably just confirm what you're already doing, since it seems as if you're on top of it already. But it would be good to have more relief, all the same.
ReplyDeleteVery tiring to cope constantly with this situation.
A back injury 20 years ago left me with some nerve pain in my feet. A tingling-burning sensation that 's alleviated by slight pressure, so I always wear socks which almost eliminates the sensation. Unfortunately, that probably won't help you -- hope you can find some relief.
ReplyDeleteIs there a pain clinic near you. They seem to have a lot of tricks up their sleeve for serious pain. I hope you can find some relief.
ReplyDeleteoooooh i am so saddened to read this, no one should have to live every day in pain. and nerve pain is the worst!! i am not going to add my "woe is me" here, just know i pray for you to get some relief!!
ReplyDeleteI can't offer anything but sympathy and hope that the pain management nurse can come up with something more useful to you. You still seem to get something on your blog more often than I manage.
ReplyDeleteWow! Your honesty really impresses me with what you are dealing with on a day to day basis. Just reading about the constant pain and the tin can scenario brings it to the forefront. I can't even imagine. This might sound silly to you but you make me a better person from reading your blog. I'm now feeling like such a whimp and I am going to try even harder not to whine and grumble about the small 'hangups' and pains I experience. We value every post you are able to publish and I'm praying that your p.m. nurse is able to offer something to help. I do believe you have found one of the best medicines, distraction. It seems to help you. Hugs.
ReplyDeleteWe often forget how difficult life can be for others and its not until we read about someone else's dire difficulties that we can get our own minor troubles back into perspective. I sincerely hope your pain management Nurse can be of help.
ReplyDeleteThank you for sharing your experience FG. I had no idea about this pain you describe. When I thought of paralysis I thought of lack of sensation including pain. Thank you for educating me.
ReplyDeleteIt's very tiring, isn't it, pain?
ReplyDeleteMy JB has had a rotator cuff injury for months. It's been awful. His cancer surgery was robotic and didn't give him this much pain!
All the best.
Never fun when you are constantly in Pain. Hoping they are able to find some way of helping you out.
ReplyDeleteBe Safe and Enjoy!
It's about time.
So sorry to hear this continues to be a challenge. We understand so little about this kind of pain and the suffering of people with spinal cord injuries. I am so glad the heat sack is one small way I can help! Let me know if a bigger one or an other different shaped one would be useful, always ready to supply. Happy you find solace in the world outdoors and at your feeder, thank goodness Mim shared her love of nature with us! These simple pleasures and past times can bring priceless joy! Take care! Sis
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