I’m a new member here and reaching out for advice. I had a ski accident in March 2017 and fractured my C6/C7 that are now fused. I was extremely lucky and was only temporarily paralyzed. I can do nearly all of my normal activities prior to the accident but not without issues. I’m not sure if the etiquette in this forum but I figure I’d start with the worst issue I have. I do feel guilty knowing most others were not as lucky as me but I’m hoping I can get some advice.
I’m seeing a spinal cord injury chief medical officer at a reputable rehabilitation facility. I ramped up to 3600mg gabapentin/day. I was initially on a lower dose for primarily burning in my legs. But I’m on the higher dose now for overall temperature control issues. I feel it worst in my entire back. It’s aggraated by warmer environments and activity. Sometimes there’s no rhyme or reason to flair ups. Ice seems to help a little but I normally have to end up just waiting out the very uncomfortable hot feeling, again primarily in my back.
More recently I started taking a low dose of Valium for spasticity when getting up from lying down/sitting. It has also helped with uncomfortable sensivity issues in my lower left side from my toes up to my lower back.
Other than these symptoms the only other one worth mentioning I suppose are occasional lower forearm pain (managed by 100mg Tramadol) and left side upper rib cage stabbing pain. Also about 1/3 of my body is numb - my whole back and left leg.
Any advice for these symptoms would be appreciated. The temperature control issues are presently my biggest concern. Although I understand my spasticity issues and control of my left leg could get worse with time.
Thank you for listening. This is the first time I’ve posted anywhere of my issues. I believe I’ve been holding off because of the guilt I have with these being so minor compared to what could have been.
babyak, your issues are plenty “bad enough” to post here, ...and welcome! Some on this forum take those same medications that you mentioned. I, personally, quit taking them after researching their side effects. Now I take kratom for pain and spasticity. It’s legal in Texas. Others take marijuana. Texas is very strict against marijuana. I’ve never had any. I hope you find friends here.
Babyak, I'm very happy for you that your functioning now approaches normal! You are not lucky at all, just somewhat less unlucky. The stuff people cannot see is devastating and the fact of pain or temp problems being invisible can feel very isolating. You are at the maximum dose for gabapentin now and that says to me it does not work well for you. I hope you and your doc find a better solution. Some people, if it is possible, choose to just grin and bear it. I am C5-7 but my cord injury was more severe. 1- years on my walking with a walker is awkward and limited to maybe 300 feet a day. Yet my symptoms are not really as bad as yours because I do not have temp problems much.
I hope you will continue searching for solutions that demand fewer drugs. You may or may not find them. You might also enjoy the Facebook page for SCI walkers: www.facebook.com/groups/1311153908905293/
I step in the water, but the water has moved on...
Post by lostinspace on Sept 20, 2018 14:30:46 GMT -8
Everyone is different with their own issues to deal with, your welcomed here. Be careful with your meds I'm like Vintage and quit taking them.
Ever feel like dying, ever feel alone, Ever feel like cryin', lost child in a store, Ever feel life pushing, shoving you away, Ever feel like breaking down, funeral in the rain Feel like slipping away
I’m a new member here and reaching out for advice. I had a ski accident in March 2017 and fractured my C6/C7 that are now fused. I was extremely lucky and was only temporarily paralyzed. I can do nearly all of my normal activities prior to the accident but not without issues. I’m not sure if the etiquette in this forum but I figure I’d start with the worst issue I have. I do feel guilty knowing most others were not as lucky as me but I’m hoping I can get some advice.
I’m seeing a spinal cord injury chief medical officer at a reputable rehabilitation facility. I ramped up to 3600mg gabapentin/day. I was initially on a lower dose for primarily burning in my legs. But I’m on the higher dose now for overall temperature control issues. I feel it worst in my entire back. It’s aggraated by warmer environments and activity. Sometimes there’s no rhyme or reason to flair ups. Ice seems to help a little but I normally have to end up just waiting out the very uncomfortable hot feeling, again primarily in my back.
More recently I started taking a low dose of Valium for spasticity when getting up from lying down/sitting. It has also helped with uncomfortable sensivity issues in my lower left side from my toes up to my lower back.
Other than these symptoms the only other one worth mentioning I suppose are occasional lower forearm pain (managed by 100mg Tramadol) and left side upper rib cage stabbing pain. Also about 1/3 of my body is numb - my whole back and left leg.
Any advice for these symptoms would be appreciated. The temperature control issues are presently my biggest concern. Although I understand my spasticity issues and control of my left leg could get worse with time.
Thank you for listening. This is the first time I’ve posted anywhere of my issues. I believe I’ve been holding off because of the guilt I have with these being so minor compared to what could have been.
Hi, Ithanks for your post. Just a quick reply after adding the welcome all have extended. I quit gabapentin when it stopped working for me and moved to lyrica. Now take 600 mg of lyrics twice a day. I think that’s a lot. But, beware because it’s expensive. They have not made a generic for it. Talk about big pharm. I’ve been on it for about three years. Fortunately our insurance covers it for about 6 months, after we spend six months paying down the deductible. This site is not easy to use. Personal email is atreid2006@yahoo.com
hello babyak. One of the first things that struck me about your post was the amount of medication you are on: gabapentin, diazepam and tramadol. I have temperature control issues but mine are entirely opposite to yours. I'm invariably cold. When the weather is hot, I become unbearably hot and I cannot cool down. My temperature control mechanism is all over the place. I know what it's like to feel uncomfortable, to be in pain or to suffer a nerve related problem that threatens your sanity, but I try to lay off the pills. Diazepam is very addictive and the body quickly builds up a tolerance to it, such that you have to take more and more to get the desired effect (rather like opioids). I don't want to take gabapentin, even though my doctor has prescribed it. I can't get through the night without taking something, though, so I occasionally allow myself the luxury of half a sleeping tablet, augmented by a little bit of diazepam. Even then I don't sleep properly because of pain and coldness. I hate the hung over feeling you get with drugs. God knows what I'd be like if I was on Gabapentin as well. Brain-dead for sure. If only there was a magic bullet, something you could take that would cure all without causing addiction or drowsiness. I suppose the pharmaceutical companies have no interest in developing such a drug, for it would eliminate everything else they make their vast profits on. Meanwhile winter approaches here in the UK and I'm dreading it. Shiver, shiver, shiver.
I hear you on being cold I have a heating pad by my pillow for my neck pain and one at my feet for when they are cold. My new great joy is my programable thermostat that I can control from my phone. Got it this spring and love being able to adjust the room temp while I am lying down in bed is so nice. Helps me on cool mornings so I don't get chilled in the morning.