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SCS, so d&$ned COLD

WramblerWWrambler Posts: 1,588
edited 06/11/2012 - 8:31 AM in Pain Management
I know I can not be the only one going through this.
During my trial it was March and I had a heavy flannel shirt on all the time. I'm always cold, I need above 76 degrees most of the time to feel warm. lucky me.

The sensation from the SCS is driving me NUTS. I feel like I am freezing to death! I am sitting in my offics at work and it is raining out. I have the usual pain, the SCS on, the tunnel for my wires really hurts from leaning on it the last three days back at work. I just can't help but wonder when all this will end.

I am not sleeping well or hardly at all. Really questioning my sanity. I toss and turn all night. I can't run the SCS in bed because the sensation varies so much it wakes me up or does not cover the pain. Geez, what a crybaby... :''(

Yes, I have my PCP pondering any possible options. I have tried benadryl, Ambien, Lunesta for sleep. This all seems so surreal. how do I get off this ride?

gee, I hesitate to post this as I don't want to scare anyone about the SCS. I sure could use some help if anyone else has been dealing with the COLD and sleepless nights.

"The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep."
Robert Frost

indeed, they are...


  • That stinks! When do you go back to PM or whoever put it in? You are not a crybaby. It blows when you believe that something will help and you will feel so much better only to still have problems.

    I'm surprised that you are back to work already. Has it been that long already? Try not to over do it. Your body is still healing. >:D< >:D< >:D< >:D< >:D<
  • If you figure out how to get off this ride, please let me know. :D
  • Monday marked 4 weeks out. Tomorrow makes a month date wise!

    It help the pain, it just has this freezing effect.
    The sleep thing has been creeping up the last few years. I am so jealous of the people that sleep 4-5 hours a night and can function on that. I feel like a walking zombie. I have tried both avenues. sleep aids to sleep and stimulants to stay awake better during the day. Nothing seems to work for me.

    Before anyone says anything about my stimulant use it was under doctors care and included ritalin and provigil. neither of which helped much and the provigil gives me brutal headaches :(

    Really, I am not searching for yet another med. I just want to feel ok again. doesn't even have to be a good feeling. just Ok will do!
  • What you are describing is very similar to what I went through the first two months after implant. The wire tunnel can be easily irritated by sitting back in a chair or driving. A good anti-inflammatory helps me keep that under control or settles it down overnight.

    The issue with sleeping took me a while to get it figured out. Initially I tried sleeping with the SCS turned off but the pain wouldn't let me sleep. So then I would turn it down a bit and sleep with it on. That seemed to work much better. I think that the body is in a state of shock for a while as it adjusts to the feeling of the stimulation. So it interprets the sensation differently at different times of the day and night. If I get tired my tolerance for the stronger stimulation is reduced. So I modify the stimulation. Now I find I can sleep with the SCS on at the same or very near the same level as I run it during the day. I just find a comfortable position to fall asleep in. I wake up during the night anyway from pain in my legs, so I get up, walk and then get comfortable again and get a few hours more sleep.

    You will get used to it and it will get less and less irritated. It takes about 2 months for it to really settle down an become less irritable. The good thing is, that even if it does get irritated after that point, it calms down with time and ice.

  • Thank you! I knew someone here must have felt this way! Speaking of inflammation comes back to the Celebrex mentioned by Kattoo. I think I will ask my docs if I can try it again. It has been the best of the antiinflams I ever took, for me anyway.

    Its expensive for me, but I'm willing to pay at this point if it will help me calm down and get settled in!

    In a way today has been helpful and the cooler temps, rain and pain reinforce just how much the SCS does the trick on the shoulder pain. It is just the shivers and tunnel pain that are puching me over the deep edge right now!

    I'll get this, just need a little more time!

    As Robert Frost said, "But I have promises to keep".
    I promised myself that in the end the pain will NOT win!
  • Don't forget that anesthesia and also withdrawl from narcotic pain meds can cause you to feel cold to the core for quite some time too.

  • Perhaps these troubles that you're having will settle down in time like Haglandic mentioned. I didn't have anything go on like this during my ill fated SCS trial last year, so I'm sorry I don't have any info. However, after my fusion my hardware would cause more pain when it cooled off or when it rained. My PM said to use a heating pad over my back for this because the hardware does get "cool" and it makes me hurt more. I wish I knew about this before..oh well.
  • ME TOO!!! I thought I was the only one! I am so cold all the time, hubby is a little off kilter because I have been "too warm" our 22 year marriage! lol Couldn't keep me cool enough. Always keeping the air conditioner on when normal people would not. And now? Well, today as an example - I have on velour sweat pants, socks and slippers.......in June! lol

    To me, the sensation of the SCS makes me feel like I have goosebumps all the time. As if I walked into a large freezer......and I've had my blood checked, it isn't anything else. I just think this is how my body is perceiving it.

    And for sleeping? I have a "sleep" program. Do you? We found my favorite "day" program and she created one just like it but MUCH lower in intensity. And it works fine. I have a total of 7 programs, but my favorites are just 2 of them - the day and the night program of the same "type". You know what I mean, I'm sure. Can you have your programmer create you a night program exactly like your favorite day program, but much softer?

    Anyway, you aren't the only cold one. I am a little concerned because so far, I haven't been able to go near the pool, and the guys have already been swimming. I wonder how warm it will have to get before I can tolerate it? lol

    Not complaining........it's a side effect I'm fine adjusting to (for the first time in my entire life, mind you! lol) Even my boys are stunned - never never never has their mother ever been cold. lol

    Take care,

  • Gosh...I am so sorry you are having such a rough time ajusting.
    Hope things are better soon my friend.
    Got my implant yesterday. It's been rough.
    Hugssssssss >:D<
    Patsy W
  • Hope you are doing better.
    I also have a problem sleeping. I take a Colopin(sp?) before I go to bed but still wake up during the night. I grab a book and read myself back to sleep.
    I am doing really well after my implant. Pain is easing up a lot.
    Am still at my sisters. It's a joy being around her and her family. They are a very close and loving family and are fun to be around. I am going to miss them when I go home this weekend.
    I do hope things settle down for you soon.
    Hugssssssss >:D<
    Patsy W
  • I haven't really found an answer for the sleep. Still looking, been hoping as I ease back into being active I will be more tired, but for now it is what it is.

    The cold is better now that the temps are higher, but I am NOT looking forward to winter. For now it to will just have to wait.

    With any luck I will be fully stabilized into some form of routine by fall and have an idea on how to manage things.

    Glad to see you are recovering well, let things heal and relax while you can!
  • Sounds like you've got some personal stories that your symptoms are not uncommon, it doesn't take away your problem but maybe makes you feel like there will be an end in sight?

    Just a suggestion on sleep. If you have not taken Zanaflex before, I think this is the one drug I cannot live without(if I HAD to pick one.) There is a huge difference between the tablets and the capsules. I have found the tablets to be much more effective at helping me sleep and being a muscle relaxant. They come in 4mg tabs that are scored, so you can even cut them into 1mg doses. If you haven't tried them, maybe that would help at night???

    Whatever happens, surely your doctor can give you something to help or fine tuning your programs.
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