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anyone have moving nerve pain?

I had surgery on my sactoiliac joint 6 weeks ago. I started having leg pain a few days after surgery. The Dr said it was nerve pain and it might be from compression of the s1 nerve from one of the implants or inflammation. My pain keeps changing. At first it was down the outside of my leg down to my foot. It was a sharp pain and it felt icy cold.Then it changed to deep itching down to the bone. After that the leg pain lessened and my foot started hurting on the outside down to the two small.toes. next the pain changed to firery hot burning only in the toes. Ten it was hypersensitivity in the two toes that made a light touch feel like my skin being sanded with burning sandpaper. Now the pain is switching to the skin burning if I wiggle my toes and the top of my foot aching. It seems to change continuously. Both the location and type of sensation. Am I losing my mind? I have not seen any posts like this or found anyone complaining of it. If it was a nerve problem, how can it move around? I hope someone else has had something like this. I am going for a. S1 nerve block Friday. I cant have anti inflammatorys or steroids, so I am praying this helps!


  • Sorry for your pain but I'm glad to hear I'm not alone! This is my first time on here, too. had my first discectomy (l5s1) in 2002. I was pretty good for 10 years. I injured it again in January 2012 and gradually the pain continued to get worse. In July 2012 I had another discectomy on the same disc. For the first 2-3 weeks I had some relief except for the usual post op pain. During the 3rd week my leg pain came back and was worse than before surgery. I was sent to PT for about a month with no relief. (He was scared to do much bc of the leg pain.) I had another MRI at 2 months post op and my neuro dr sd everything looked fine, there was nothing he could do for me surgically, and released me to a pain management dr. PM dr said at the 3 month mark, I should be healed and that was as good as it was going to get from that surgery. PM then tried nerve block injection with 0% relief and his opinion is a spinal stimulator or a spinal fusion. He wants me to see an ortho dr and get his opinion. I've had a hard time finding a dr to see me. They tell me I have to wait 1-2 years post op before they will see me. Meanwhile, PM dr just gives me pain meds. (They take the edge off but the pain never goes away. Stays between a 6-8 constantly) I did find an ortho who agreed to see me and I'm hoping to find some relief with him. I do have back pain (this was expected and that I can deal with) My issue is with the constant leg pain that starts in my back and goes all the way to my toes. My butt/hip, knee, and calf muscle is the worst. it feels like burning/being stabbed with a knife, and I also have the same issue with my foot and toes. (I've not heard anyone else say that!) Soo aggravating! All I want is to do normal things again! It's hard to make any plans bc I never know how I'm going to feel that day. I'm only 35 and this is not how I want to spend the rest of my life! I just keep reminding myself that lots of people have it a lot worse and I should be glad for how I am. Sometimes it's really hard because I feel like no one understands. It has to get better at some point, right?! I would love to know if anyone else has had these issues and found relief!!
  • I'm sorry for your pain.. I have the same thing burning down my leg stabbing pain in my back. I've had a micro d and after 6 months of actually starting to feel like a normal person I re herniated my disc. I know exactly how u feel I try to think that there are people worse off then me . But I'm 31 and want to start a family. I get so depressed because I can hardly take care of my yorkie right now. No way could I take care of a baby! I read posts to feel connected to people like us because I feel like no one understands. Even though my husband is very caring he still gets frustrated with all of this and until u experience what we go through no one can possibly get it. I JUST WANT A NORMAL LIFE!! Aghhhhhhh
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  • reesemayrreesemay Posts: 67
    edited 02/21/2013 - 5:57 PM
    Your pain management doc can get you on different types of meds that can and will reduce the pain. Some types of meds that are used are for depression. They are used in lower doses for nerve pain. I think the usual is gabapentin, it will take numerous trial and error to get your combo correct to where you can tolerate the pain levels and be somewhat normal. This particular drug will make you very sleepy at first, or at least it does me, but then you will be able to tolerate it as time goes by, it takes time to build up in your system, I think I had good results as soon as the first 3 days, some it will take up to two weeks. I have to try to stay busy to stay awake, my days and nights are backwards. Getting in the sun for a little time each day will help your body create melatonin which is what makes us sleep. Try to eat the good foods if you can. No junk foods. You want to give you body a good fighting chance to heal correctly. I know you dont want to make or prepare anything, but if you can get good quick foods like yogurt, bananas veggies that can be nuked..all are better and easy to prepare. I like the good old standby peanut butter and jelly or scrambled egg sandwich.
    Just keep a good log of your pain and explain to the doc what kind of pain it is.
    pins and needles
    these are all good descriptive terms the doc can understand
    Ask your doc if you can do light stretching, sometime this can be of great benefit as long as you don't push it too hard, if you do the pain will worsen. Just stretch until you can feel the "pull" You will have to do this several times a day, since the nerves are pissed off they will tighten up fast. So that is why you will have to do the stretches numerous times a day.
    Just be sure to ask your doc if this is ok first or see if he can refer you to a professional that can teach you.
    I have also had all the burning searing hot pains in my feet and toes, try wearing socks or slippers. I know you dont want them but it will calm your feet some.
    I used to walk barefoot all the time, the bottoms of my feet are like leather because of it, now I cant stand to be barefoot anymore. I always have my slippers close by. If your sheets hurt your feet try the socks it can help some. I went thru that as well, could not have anything touching my feet while I was sleeping, I used to hang them off the side of the bed with the covers off of them....socks!!!!
    I am not a doc, but I think the moving pain is a good thing, it could be your body's way of healing. I had the same thing and I think it will calm down. I think I had that for less than a month.
    Also insted of trying to bend over, like you are used to. Can you squat instead? Bending your knees to get to the floor will keep your back straight and not stretch anything. That is what I do if I have to pick up anything off the floor. Or they make those grabbers I have one and it is very useful. They are not that expensive. YOU ARE GONNA GET THRU THIS!!!! You have an advantage over most of us since you are still young, you should heal fast!!!! Just dont forget you have a weak spot and give it plenty of time to heal. Those nerve blocks are awsome. You just dont want to forget to go easy on that, because you will be numb so dont over do it. Just enjoy the numbing it gives you. That does not mean clean you entire house!!!! It is diagnostic as well as pain blocking.
    For me the ESI's were very helpful at easing my pain. DOnt worry too much about it. I know it sounds scary, but it is over with very fast and did not hurt me at all, just a pinch of the needle. Then I was numbed pain at all from the proceedure.
    I have not had any surgery, but could be heading in that direction. My doc is going to try a spinal cord stimulator. Keep your fingers crossed for me!!!
    Hope you get some relief sooner rather than later :)
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