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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #101
    Senior Member Revis's Avatar
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    Quote Originally Posted by faceplant View Post
    hello fellow CCS community members.....quick question. Does anyone have the burning hand/arm pain/numbness??? If so what has worked for you? Does the cold weather make the pain worse?? Also have you noticed any skin changes on your hands such as thickening or leathery skin??
    Hello Faceplant. I have tingling/buzzing and numbness in both hands to a degree. My thumbs and first digits are worse than the other fingers. My left hand is worse than my right. My arms are stiff and there are prickly feelings on the outside of my upper arms. I notice these symptoms get worse as the day moves along and I get more tired. If I'm relaxing in my recliner they improve. Cold weather makes the hands/arms and fingers more stiff. I try not to let myself get cold for any length of time, but it's hard because my hands are always colder than the rest of my body. If I get up and move my arms and hands it helps with the stiffness. I've not had any skin changes on my hands, but notice that my skin is drier and flakes more. Maybe that's the neurontin and dry, cold temps working in combo.

    What are your symptom?
    CCS/Walking Quad

  2. #102
    Hello Revis,
    I have burning and numbness and tingling in my thumb and first two fingers and just numbness in the ring and pinky finger with burning and tingling that goes up my arm to about my elbow and sometimes higher usually worse on the right than the left. Light touch is even painful. I have noticed that my hands always seem to be cold too. They have me on Lyrica for it but so far it has not helped. My hands are very dry and itch a lot but this has been worse since the cold weather started. I try to keep lotion on them but they itch so bad that sometimes I get sores on my hands. I try to keep them as warm as possible and even wear mittens to sleep in. I wonder if these symptoms will be with me forever. I know the MD feels that they will in varying degrees....yuck. I guess it's just something the I have to learn to tolerate as so many people do. Thanks for your input!

  3. #103
    Senior Member Revis's Avatar
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    Quote Originally Posted by faceplant View Post
    Hello Revis,
    I have burning and numbness and tingling in my thumb and first two fingers and just numbness in the ring and pinky finger with burning and tingling that goes up my arm to about my elbow and sometimes higher usually worse on the right than the left. Light touch is even painful. I have noticed that my hands always seem to be cold too. They have me on Lyrica for it but so far it has not helped. My hands are very dry and itch a lot but this has been worse since the cold weather started. I try to keep lotion on them but they itch so bad that sometimes I get sores on my hands. I try to keep them as warm as possible and even wear mittens to sleep in. I wonder if these symptoms will be with me forever. I know the MD feels that they will in varying degrees....yuck. I guess it's just something the I have to learn to tolerate as so many people do. Thanks for your input!
    Faceplant, I don't have burning in my hands or arms. I DO have constant burning in my feet, more in the right than the left. I can get burning in my buttocks and up my back if I've been doing a lot. I also have dysesthesia up and down my legs and in my torso. It comes and goes in my torso. One positive thing I can pass along to you. The burning in my feet seems to be less intense now as compared to 8 months ago. If I remember correctly it was further up my legs, too. I used to struggle to lay on my side in bed because the sensation of one leg on top of the other was so bothersome. The sensations have reduced enough that I can tolerate it now. So, there has been some change. Like you I wear gloves or mittens a lot. Not sure that neurontin really does anything to help offset these sensations, or not. I'm sorry to hear about your itching. Most of my itching is in the outside portion of my upper arms, and it's tolerable. Seems like with ccs there are many similar symptoms we share, but everything varies, so we are each unique.
    CCS/Walking Quad

  4. #104
    Senior Member Evonne's Avatar
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    Quote Originally Posted by faceplant View Post
    Hello Revis,
    I have burning and numbness and tingling in my thumb and first two fingers and just numbness in the ring and pinky finger with burning and tingling that goes up my arm to about my elbow and sometimes higher usually worse on the right than the left. Light touch is even painful. I have noticed that my hands always seem to be cold too. They have me on Lyrica for it but so far it has not helped. My hands are very dry and itch a lot but this has been worse since the cold weather started. I try to keep lotion on them but they itch so bad that sometimes I get sores on my hands. I try to keep them as warm as possible and even wear mittens to sleep in. I wonder if these symptoms will be with me forever. I know the MD feels that they will in varying degrees....yuck. I guess it's just something the I have to learn to tolerate as so many people do. Thanks for your input!


    Faceplant,

    My hands are also freezing all the time as well as my feet. Even if i have gloves on and bundle up I still am freezing, especially in those areas and the cold weather we r having makes it worse.

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  5. #105
    Senior Member trekker6's Avatar
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    At first the tingling in my hands was extreme now the tingling is tolerable but the hands are still numb. The arms and the rest of my body tighten up with stimulation either from temp, friction or overuse, this is the spasticity kicking in, it's irritating but not a whole lot you can do about it other than drugs. I got off baclofen and neurontin and noticed an increase in sensitivity and spasticity, but the side effects were not worth it, dry skin was one, it's subsided but still present, then again I'm not in a dry climate as some are. It's just that it's bad enough to be crippled like this, but to shed skin on anyone close to you is very disconcerting, there's worse things but still it bothers me.

  6. #106
    I am dealing with the same thing....fighting the side effects of the medication vs. the pain and tingling. Sometimes I don't know which is worse. I hate the cold already and we are just entering winter and of course I live in Minnesota so it's a cold climate during the winter months they said tomorrow it's going to be in the single digits yuck I think the high will be like 5 degrees.....that should be a fun day especially since I have OT at about 10am. I guess I will have to double up the gloves and mittens. I agree there are worse things but it doesn't mean it's not a crappy thing we have to endure. I guess I will have to stock up on hot chocolate and find some warmer mittens.
    Deb

  7. #107
    Senior Member trekker6's Avatar
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    I flew to Ohio a few weeks ago, as soon as I got out of the car at the airport in Orlando, my body contracted and I froze up. I thought at first it was the temps, we just had a cold front here, 45 degrees, but now I believe it was because I was wearing long pants and all that material nrubbing against my legs was causing spasticity in my body. I can replicate it by vigorously rubbing the palms of my hands together. I walked around in 20 degree weather in shorts while I was in Ohio and was okay.

  8. #108
    Senior Member Evonne's Avatar
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    I have had a situation also where we went into a restaurant to eat and by the time we came out it was dark and very cold and my whole body locked up, I could barely make it back to our vehicle and then my husband could not bend my legs to get them in the truck, it was awful!

    Evonne
    I have a spinal cord injury...a spinal cord injury DOES NOT have me!

    walking quad-Central Cord Syndrome

  9. #109
    Quote Originally Posted by trekker6 View Post
    I flew to Ohio a few weeks ago, as soon as I got out of the car at the airport in Orlando, my body contracted and I froze up. I thought at first it was the temps, we just had a cold front here, 45 degrees, but now I believe it was because I was wearing long pants and all that material nrubbing against my legs was causing spasticity in my body. I can replicate it by vigorously rubbing the palms of my hands together. I walked around in 20 degree weather in shorts while I was in Ohio and was okay.

    Wow even I can't be in shorts when it's 20 degrees. I understand the freezing up thing that happens to me sometimes. It's just strange stuff!!

  10. #110
    Senior Member Revis's Avatar
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    Quote Originally Posted by trekker6 View Post
    I got off baclofen and neurontin and noticed an increase in sensitivity and spasticity, but the side effects were not worth it, dry skin was one, it's subsided but still present, then again I'm not in a dry climate as some are. It's just that it's bad enough to be crippled like this, but to shed skin on anyone close to you is very disconcerting, there's worse things but still it bothers me.
    I've been experimenting with getting off of neurontin, but I've not found it as easy as I thought it would be. I've tapered down to mostly one 300mg dose a day. Somedays, especially when the cold has gotten to me, I will take another one, bringing the max daily dosage up to 600mg. Starting Sunday through yesterday afternoon (Monday) I skipped a dose for 36 hours, but had a major increase in feet burning and prickly feelings in my upper arms towards mid-afternoon yesterday. Took a neurontin and it took the edge off. However, yesterday morning I felt that I had more energy and my head was clearer. I don't know if that was a fluke or a part of the result of having less neurontin in my system. So question: What are you finding to be the advantages of being off the neurontin? (I've never been on bacoflen, thankfully, so I haven't had to deal with its symptoms.) Also, I get the dry skin flaking thing...I have dry skin anyway. But now I'm a walking dander machine thanks to neurontin.
    CCS/Walking Quad

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