8 replies to this topic

[don white]

Does anybody go though the same thing I do? My legs from the knee down will get so cold or hot like on fire. Than if I don't go lay down I get so stiff I can hardly move. And every night my skin will get so sensitive it hurts to be touched. I go though so many thing and the doctors tell me that it is all part of the injury. Please help answer some of my question. This my first time on here so I hope I'm doing this right. Thanks Don

[mellowgator]

dear don

welcome to the forum. i'm glad to meet you.

to answer you question, yes many people who are paralyzed have pain in their legs. i'm sorry you're having to deal with this. it sounds a lot like nerve pain. neurontin or lyrica may help you with this.

good luck,

mellowgator

Edited by mellowgator, 05 May 2011 - 12:38 AM.

[goose]

hello Don

some bad news--that's just part of it. i'm a quad so it happens even higher on me.sometimes you really need and want a hug but it just hurts too much. the side effects to a sci can be a bear to deal with.
sorry, i haven't found a solution to this one yet.

this may sound strange but it has helped- my left arm can not stand to be touched [severe pain]however ,if someone rubs it really fast and hard it will desensatise the pain. i know this sounds crazy but it is a temporary fix.

[StillFingers]

goose, on 05 May 2011 - 03:42 AM, said:

hello Don

some bad news--that's just part of it. i'm a quad so it happens even higher on me.sometimes you really need and want a hug but it just hurts too much. the side effects to a sci can be a bear to deal with.
sorry, i haven't found a solution to this one yet.

this may sound strange but it has helped- my left arm can not stand to be touched [severe pain]however ,if someone rubs it really fast and hard it will desensatise the pain. i know this sounds crazy but it is a temporary fix.

Redirection of pain is indeed one solution, meditation for many is another...there are meds/drugs that may help as well. Explore all your options and use what suits you best, pain sucks, managing it is tricky, find a balance, re-adjust...repeat!

33 yrs rolling is nearly here, I have found some comfort, but not a lot...cold arms, hands, fingers, arse, legs n toes; hot as well, stinging also...I was going to say you just get use to it, but it's there and sometimes you can't ignore it, grin n bare it

Edited by StillFingers, 05 May 2011 - 04:13 AM.

[Ratticis]

I had docs tell me "that's impossible, you're paralyzed, you can't feel that!" They figured I was just trying to get pain meds.

[mugsy]

Welcome Don,

You have definitely come to the right place to find advice and support. There are a lot of wonderful people here with a wealth of knowledge.

I know exactly how you feel. Right now my legs feel cold although not cold to the touch and my feet feel like they are on fire. I know lying down in a minute is going to help. I don't have the answers you seek but wanted to let you know you are not alone.

There was a recent post titled "Feeling Cold". I would suggest you read it as well. It is very similar.

Good luck!

[wheeliebear75]

Hello & welcome to the gang.....we're just a big mixed bag of nuts around here.

Yes unfortunately yes that pain you describe is sadly a part of everyday life for many of us.

However along with the Rx remedies; meditation, relaxing massage (if it doesn't aggravate or increase the pain) above where your injury is at may help, nice warm/hot soak in the tub, hot shower using the shower hose for a built in back/neck massage, heating pad, amongst others.

When my feet get feeling like they're the start point to the human buffet for a colony of ants if my B/F gently squeezes my feet without making too much movement across the skin (rubbing a thumb across can feel like my skin is being ripped off) it seems to help.

Music & keeping the mind & body busy busy busy til exhaustion takes over.

And then there's always POT! Don't knock it til you've tried it #1. & MOST importantly....BIG difference in using marijuana for pain vs. to get HIGH.

[Simba]

wheeliebear75, on 05 May 2011 - 06:45 AM, said:

Hello & welcome to the gang.....we're just a big mixed bag of nuts around here.

Yes unfortunately yes that pain you describe is sadly a part of everyday life for many of us.

However along with the Rx remedies; meditation, relaxing massage (if it doesn't aggravate or increase the pain) above where your injury is at may help, nice warm/hot soak in the tub, hot shower using the shower hose for a built in back/neck massage, heating pad, amongst others.

When my feet get feeling like they're the start point to the human buffet for a colony of ants if my B/F gently squeezes my feet without making too much movement across the skin (rubbing a thumb across can feel like my skin is being ripped off) it seems to help.

Music & keeping the mind & body busy busy busy til exhaustion takes over.

And then there's always POT! Don't knock it til you've tried it #1. & MOST importantly....BIG difference in using marijuana for pain vs. to get HIGH.

All good advice - although the marijuana may make you too docile - depends on what you need to do in a day just something to be aware of. In some cases it will work fine for a sedative but probably you are better off taking something prescribed for the neuropathic pain which will try to settle down the sensitivity and nerve implulses as other things like maijuana may just sedate you short term relief and then the pain will come back. it react differently with everyone so just a suggestion.

Massage below injury level could also be beneficial in terms of providing circulation, just importan it is light. Keeping yourself distracted is vital to try and get your mind of the pain and some people use it as an ongoing coping mechanism for pain quite successfully.

Wish you luck and hope you find what works the best for you.

[wheeliebear75]

Simba, on 05 May 2011 - 08:40 AM, said:

wheeliebear75, on 05 May 2011 - 06:45 AM, said:

Hello & welcome to the gang.....we're just a big mixed bag of nuts around here.

Yes unfortunately yes that pain you describe is sadly a part of everyday life for many of us.

However along with the Rx remedies; meditation, relaxing massage (if it doesn't aggravate or increase the pain) above where your injury is at may help, nice warm/hot soak in the tub, hot shower using the shower hose for a built in back/neck massage, heating pad, amongst others.

When my feet get feeling like they're the start point to the human buffet for a colony of ants if my B/F gently squeezes my feet without making too much movement across the skin (rubbing a thumb across can feel like my skin is being ripped off) it seems to help.

Music & keeping the mind & body busy busy busy til exhaustion takes over.

And then there's always POT! Don't knock it til you've tried it #1. & MOST importantly....BIG difference in using marijuana for pain vs. to get HIGH.

All good advice - although the marijuana may make you too docile - depends on what you need to do in a day just something to be aware of. In some cases it will work fine for a sedative but probably you are better off taking something prescribed for the neuropathic pain which will try to settle down the sensitivity and nerve implulses as other things like maijuana may just sedate you short term relief and then the pain will come back. it react differently with everyone so just a suggestion.

Massage below injury level could also be beneficial in terms of providing circulation, just importan it is light. Keeping yourself distracted is vital to try and get your mind of the pain and some people use it as an ongoing coping mechanism for pain quite successfully.

Wish you luck and hope you find what works the best for you.

ACTUALLY....it's quite the OPPOSITE!

Most people hear "marijuana" they think of being STONED like Cheech & Chong in their movies. The difference there is night & day. STONERS are smoking to get A HIGH....people who are using it LEGITIMATELY for medical use/pain control etc. , we are NOT getting "HIGH". To be honest had I only known I would have started using it sooner. With the marijuana (I do it at home before I leave) I'm able to go out & hang out at car shows with friends, BBQs, go for walks/stROLLS with the dog & family and I don't have trouble staying awake AND the "fog" is minimal. If I take my Rx remedies than I DO have trouble staying awake, trouble keeping up with conversations, & even people who do NOT know that I smoke pot have said things like "You didn't look so loopy last time you came out. Are you stoned or what?",which is REALLY funny if you think about it; when I come out after smoking POT I'm less "stoned" than when (IF) I come out under Rx pain control methods.

I went through pain management & it was THOSE Dr.s who told me TO SMOKE POT. I got hurt in 1990, was sent through pain management in 2003 after 13 yrs of heavy meds barely touching the pain I was considering having them start using an epidural so I wouldn't feel ANYTHING because it was sooo bad.....now I smoke pot during the day & don't take ANY Rx unless it's raining those are pretty much just used for nighty night.

<<<< I would encourage anybody to take a gander at the many many MANY threads that have covered the topic of marijuana use.....I can't recall anyone stating they felt more sedated on pot than Rx. Marijuana isn't for everyone but it covers multiple issues with ONE drug that I suppose could make some feel "too docile" OR there is throwing pain killers with "may cause sleepiness/drowsiness" labels + a muscle relaxer with a "may cause sleepiness/drowsiness" label + the NERVE pain killers that have a "may cause sleepiness/drowsiness" label & to keep THOSE all down an anti-nausea med like Phenergan which ALSO has a "may cause sleepiness/drowsiness" label.>>>>