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Neuropahtic Pain

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:26 AM in Back Surgery and Neck Surgery
I am wondering how many of you suffer with Neuropathic pain?

What does it feel like?

What helps it?

Does it effect your leg/ back / both??

Can you dampen it at all??

How reactive are the nerves in your back?? Mine are so sensative it is not funny and I am begining to worry.
Does this sound familiar??

Pain Free days to all!


  • I get horrible muscle spasms in my lower back and legs and my hamstring muscles get super tight. The upper thigh gets rock hard and that's when you hear me cry. Then I deal with the burning pain down the back of my legs, it is more pronounced when standing and walking. Of course sitting is a always a problem. I get crushing pain in my foot, pins and needles sensation and numbness in the sole of my feet and big toe. Occasionally there will be cramps in the arch of the foot, and electric pains throughout the leg. Taking Cymbalta has calmed down some of nerve pain, but don't dare to miss a dose.
  • I can relate to the spasms!

    My foot feels like an ice block with a 9 inch nail poking thorugh it.
    Then it goes pins and needles.
    I have the dreadful buzzing in my back, vibrating, tiring ache and spasms. Spasms nearly wind me.

    I also have a real fear of this pain, gets to a ceratin place then I feel a deep sense of fear. weird.
  • A deep sense of fear when it comes to pain! I'm sorry that you've ever gotten to the point where you have experienced that or have developed a reason to have that. It's not a good place to be.

    I take Neurontin, Carbamazapine and have an SCS for much of my neuropathic pain.

  • I have tingling and numbness in my foot and muscle spasms in my calf. As for the back, gnawing, knife like pain with a heaviness. I did have more pain in my back before the injections for the facet joints. I take lyrica and amitriptyline for the neuropathy. If you're getting new pain you should call your surgeon. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I have both nerve pain from my back and from a laparopscopy where nerves where injured via the laser (long story). I also have a lot of weakness, particularly in my left leg from both. The nerve pain feels like a sword or knife has sliced through my groin, thigh, and back of my leg and rear then the "deep cuts" are having alcohol poured in them. When things are calmer it's more diffuse, when it's worse, it specifically follows the nerves. It ends up feeling like my entire left leg is contricted when it gets real bad. I've actually filled up the bath tub with cold water and ice cubes and can't feel any of the area when it's real bad (everywhere else freezes though!) I also can't have anything touching the area when it's like this. A light touch feels like a sword. Nerve pain is crazy, the electical part of it is insane. It almost feels like all the nerves have been hooked into a switch and the switch is turned on. My BP, pulse, and temp increase when it's real bad. Words like lightning and being shocked come to mind, or taking a trip to he11.

    I've been dealing with this for a long time, and the best things that have helped are Lyrica, Klonopin, and Steroid packs when it's real bad, plus breakthrough medications. I was bedridden from this until a new pain doctor had doubled my "nerve" meds and it made a big difference. I think knowing what triggers the pain and backing off whatever that activity is helps a lot. I had L4-S1 fused in April and have been having a lot of painful muscle spasms, where most of the lower back and rear end muscles are hard as a rock. My surgeon thinks I'll need my hardware out. The spasming tends to set the nerve pain off, so doing whatever I can to calm the muscles- TENS unit, Lidoderm patches, upping my muscle relaxer intake, ice for nerve pain and heat for muscle pain, laying down with pillows supporting me, meditating, gentle stretching- tend to help. One of the best things is getting decent sleep, which is so hard when all this is going on.

  • The word "neuropathic" does confuse me somewhat. I always used that word, and then when I had my nerve conduction studies, I was told I did not have peripheral neuropathy, so then I got nervous using that word. Can that word be used interchangeably? EMG showed the S1 nerve damage/radiculopathies.

    My symptoms, prior to getting my SCS (spinal cord stimulator) last Monday:

    Burning from hip to toes, 24 hours a day, in a specific nerve pathway kind of way - not the entire leg. This has been mostly my left leg, with my right leg occasionally.

    Lateral numbness - outside of hips, thighs, calves, feet and 4th and 5th toes. This is on both legs. This gives me major balance problems. Getting a pedicure almost kills me with the sensations.

    20 to 30 minute limit on sitting/standing/walking/any activity. Stay reclined 23 hours a day - must stay "off my tail" as my doctor says, due to the location of the S1 nerve. I keep the heated seats on in the van and keep the chair reclined, have a pillow, etc.

    No bending, lifting or twisting as those are major nerve flare triggers as well.

    On really bad days, what I call "lightening strikes" that fly through my buttocks down my legs and out my toes. It is so bad it takes my breath away and sometimes I almost fall. (I don't drive much because of this.)

    On and off, I have leg weakness where I feel I will "lose my leg" and fall down. I am very very careful in really big stores and don't have a problem using my cane or walker (I'm 42) if I need to. I'd rather do that than fall and have to get help from the back of Walmart.

    Sometimes hubby will walk by (my chair lol) and barely touch my foot or my leg and I will jump. It can feel like he took a hammer to me, when he in fact barely touched me. This makes him feel really bad and he can't believe my reactions are so messed up.

    I don't pick my feet up properly when I walk, although I don't officially drag them either. But due to the numbness, my brain and proprioception (knowing where are body parts are all the time) doesn't report correctly to my brain. This has caused one major fall and a required surgery within 2 weeks. Now I am really really careful when on uneven pavement or changing from carpet to hard surfaces, etc.

    When I step down into our pool, for example, I have to have help. I can't put one foot down and balance myself. I have to focus on balancing to the insides of both feet. Exercising in the pool has helped tremendously and I am much stronger in the months that I do that.

    So, to sum it up, if I get up out of my recliner, I experience pain flares. If I stay in the chair, I'm a 5 out of a 10 on a good day and this is taking long acting meds, breakthrough meds, meds for muscle spasms and meds to sleep. I stay almost fully reclined, also, not just slightly reclined. (I have an adjustable laptop caddy that comes up over my recliner arm and allows me to stay distracted on the computer.

    Distraction is our greatest weapon!!

    Since the SCS placement, things have been completely different, and I have an update thread where I have details if interested.

    Take care everyone,


  • Yes, Longwalk & Firefly especially, those deep, dark places are so lonely....the cuts w/ alcohol poured in them, the fear that starts when the pain begins, I call it my "dark colbalt blue" pain, deep & cold & forlorn, like the North Atlantic, a place that I try to avoid but sometimes can't..weird for sure, but terrifying when it begins, mine like a chain-saw thru the spine w/ lighter fluid then a match lit....

    Neruropathic pain is just the worst. The burning, crushing, mind-numbing stuff that does feel exactly like having your leg (or wherever) being electically shocked & you can't tell them to stop it..I dread dread dread it and it is not a good place to be, as "C" said. But it comes sometimes w/o warning.

    Cherish, how wonderful you are getting some respite from your horrible pain! May we all have a better night tonight!

    And Kathy, I can relate to the TENS, Lidoderm patches, extra Valuim, ice packs, stretching & extra pillows...and meditating...

    But sometimes it just gets too fierce for anything but weeping. And that's OK too.


  • Cherish - you may be right, I may have used it wrongly.

    I mean "nerve pain" and having read around it and spoken to several health professionals, seems to me like they are as blurred too! lol!
    I have sciatic type distribution and back pain, buzzing, burning.

    My problems stems from my spine (entrapped nerve) and the result is in my back and lower leg, although when bad, get a deep ache in the thighs.
    I guess I am trying hard to distingusih what pain from what.

    I can understand the Deep Ocean thoughts.
    My instints, which I trust, want scolding HOT on my back. My leg, when in pain I immobilise. My brain doesn't know where my foot is either so I am slow, deliberate and stumble!

    I have learnt that if I do nothing I am better than any mobilising. That is pure madness!!

    Firefly - you say your spasms cause your nerve to flare? I "think" it is my nerve firing off that causes my spasm. Can anyone help me with this - it is important because, My spasms are coming thick and fast (re-occurance) since revision surgery and may be significant in what is actually causin my recent flare....if you follow me!

    Charry - I am thinking seriously about seeing my doc sooner.

    Oh to be pain free...imagine....!

  • I think my muscle spasms trigger my nerve pain as well. I think I am constantly in a "guarding" position - not wanting to get hurt. This guarding causing me to walk/move improperly, thereby causing muscle spasms, which then trigger the nerves (that are positioned within the muscles).

    Just guessing, though. lol

  • Sounds like a lot of us are having this :''( pain! Cheri, you're definitely right, I think they are used interchangably, though there are some specific definitions. They sometimes sound wimpy compared to the crazy pain it causes though! I'm not sure what to call it from my back, but I was told both neuralgia (but instead of spurts of horrible pain, it lasts a lot longer than the definition), peripheral neuropathy, and some central neuropathy (from pelvic surgery). I have a lot of weakness in my leg and have foot drop from this. I recently sprained the heck out of my toe getting into my parent's guest bathroom shower! It had the bathtub and I thought I'd lifted my leg enough, but banged my toe real well. The nerve pain is a constant, but thanks to meds, it's helped a lot. I also walk funny, don't even realize it most of the time though! Exercising triggers my pain real easy as well.

    Itsalongwalk- I thought it WAS the nerves triggering the muscles at first! My therapist was the one who corrected me as she was doing myofascial release and massage on me and felt how much muscle tightness I have around my spine and rear. I think it can go both ways, definitely! My surgeon thinks I need my hardware removed and it's causing the muscular problems. I can say it's gone both ways though!

    Zack, you described the sensitivity real well, it's crazy how hypersensitive the areas are. Right after my pelvic surgery, going to the bathroom would increase nerve pain. Anything that tightened the stomach muscles would, which is just about everything. It's tough with the back as it's the same way.

    Take care everyone, and if you ever need to talk, I'm here. I've lost a few friends to nerve pain and hate the hell it puts us through. :(

  • The muscle spasms that come before your nerve pain could be neuroclaudication or pseudoclaudication. This means that the nerve in your back are not gettin enough blood supply and therefore causes the nerves to cause cramping in the legs. Then, the nerves which are blood-supply starved and damaged, do their own thing and cause the nerve pain. Just one possiblity. Look up the neuroclaudication and see if tht fits your symptoms, then talk to your doc. Don't know really what there is to be done about it except maybe therapeutic massage as soon as incisions heal to help reduce scar tissue formation and encourage blood supply to the nerves.
  • It seems, which is a shame but I am glad I am not alone.

    Chicken / egg...I relate to the guarding but also get the spontanous spasms. I wondered if it was my nerve complaining but I do know something isnt happy! All makes sense.

    Zach, It it interesting you say about even moving your toes triggers your pains. I have often been cuious why my pain shoots from either soles of feet or big toe, (or both) UP the leg, rarely down the leg. My leg is numb, or crampy or wierd!
    I have a deep dragging ache in my deep thighs, front.
    Needling feelings over my buttocks, stinging in my mid back (travels upwards - feels like I am being biten) and Vibration or any movement like that sends me insane. It fires off my leg and takes me to a different place mentally.

    I feel like I spend every day pacing, carefully moving and trying hard not to stretch out or flare up the leg / back.
    My back pain still is worse for me.My back Buzzes!
    It gets to a point, which I fear. That doesn't make much sense to me but I do trsut my insticts and try not to irriate what I know will make it worse. I don't like that place, at all.

    Still I await news on Lyrica. Here's hoping.

    I have done some reading around the nerves and I doubt anyone will give me a prognosis. Makes me smile cos nerve damage is an area wher they don't like to wait yet what am I doing??

    Keep smiling spiney friends.
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