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Explain your L5S1 pain

tarheelgirlttarheelgirl Posts: 473
Hi, I'm just wondering if everyone could share their pain and what they feel on an everyday basis with this type herniation. I am wondering if I am feeeling the same thing. It's truly the most excruciating pain I've ever felt. I've been thru labor (have 3 kids), felt both my c/s after the incisions (spinals wore off) and had acute gallbladder syndrome which was pretty bad but short lived b/c I had it taken out. I also have triple cervical DDD which I had been on Fentanyl patches for 2 years for that eased off a couple months before this L5/S1 herniation occured. This pain is so awful and continuous, I can hardly cope.

Mine feels like aching in lower back, sharp electrical pain in right buttocks, burning, shooting stinging pain to back of knee, cramps in calf and foot, numbness in foot at times. When in flair up like I am right now, the spasms in low back and buttocks have a death grip on sciatic nerve and won't let go like a monster with an occasional tighter squeeze that brings me to scream or tears. My right hip aches like arthritis all the way to the front of my hip.

Does this sound the same as any of you? It's not really described this way online when I look it up and it's hard to tell a doctor this.


  • I think you have done a good job describing what many of us experience with that catch-all phrase, "sciatic pain." We are affected in a variety of ways, slightly different locations, but what you describe is spot-on. The pain really wears you down after awhile.

    Do you find warm or hot water soothing? Or a heating pad? Ice? Do you get any relief from a change in position? Some people are only in pain when standing and walking, but have relief when sitting or lying down.

    I think you could read this description to your doctor and he would understand what you are experiencing.
  • Hi there, my L5 S1 pain began with inabiliry to weight bare on my leg from extreem pain but that would wear off after a few days, then I thought I had glass in my right big toe and kept checking it, now that has been numb for a whole year with stabbing sensations and such on and off through out the day. My lateral calf burns and tingles, my last two toes, pad of foot and ankle all get sore and tingles and numbness. My lateral thigh, hamstrings and top thigh burn, hurt and tingle and go numb. I would also wake up stiff and unable to move in the mornings felt like painful concret. the pain is so specific and anoying. I had a few gallbladder atacks and passed its contents a few years ago and that pain made me pass out and vomit on myself. And I have had two C-sections that were minimal with the pain. The back pain is tearful, constant, bad at times, bearable at times.
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  • have had 3 L5-S1 back surgeries, but complained all 3 years about the same pain - burning 24/7 in my buttock to my toes. On better days, it wouldn't go all the way to my feet, on most it did.

    Docs kept saying "give it time", but a year ago, I had an EMG that showed permanent S1 nerve damage. I was devastated by validated at the same time. Finally an answer. Now I'm getting a spinal cord stimulator and hoping to reroute/block the pain signals from my damaged, misbehaving nerves.

    Oh, forgot to add that sometimes I have what I call "lightening strikes" that fly through my legs out my feet. Those are the worst. And I have lateral numbness on my hips, thigh, calves and feet. I have to be very careful when I shave, etc. (Female, here lol). I also have balance issues because the outsides of my feet don't feel much of anything.

    I'm sorry you have that burning pain - it is the worst!

  • Thanks so much for responding to me. I feel so alone on this journey. Gweenie, heating pad and hot baths to feel better, but do not alleviate the spasms, but its more soothing. Ice as I read is best since the sciatic is "on fire already from inflammation and should be used" makes me spasm 5X worse, I can't take it. It certainly is worse sitting, especially in long car rides...I have a lumbar pillow from the PT that does help. Changing positions is a must and lying down is most comfy, but I do get up and walk some. I have a temp order off from work where I can't sit, walk or stand more than an hour each. :(

    Charry, how old are you? I know I could benefit from a cane for support b/c I hold onto things alot to get around, but I am turning 36 today and am so afraid of stigma and don't want to embarrass my kids or hubby or anyone else, so I refuse to get one. My dh holds me for support while walking as not to look so "obvious" So sad of me to think that way. I know what you mean about dishes. And oh my...laundry...bending over 20 times to do a few loads for 7 people in my household. It's unbearable. Thank God my hubby helps so much...but he shouldn't have to...he has enough to do. And I know about the doctor's office waits. My urgent care wait on friday was 3 hours...I was up/down so many times...I stood against the wall mostly. I can't sit. I really hope you feel better...I'll have to look up your sleeping pill.

    cherish...my, you look young from your picture. How is that scs going to help with the electrectrical pain? I don't know much about it, but I can't stand my tens unit on my sciatic area...ouch! I hope to God it works for you...why must the docs not believe us? I really feel I have more going on that the MRI shows. My pain is horrendous, but the surgeons is looking at one test. Thank God my pcp treats my symptoms.

    natural sci==I do have the inability to bear weight too...forgot that one...I limp 80% of time...but the glass in big toe...ouch! I haven't had that one! I'm sorry to hear it. I hope you get relief...what does help you get relief since you seem to like natural remedies?
  • Thanks for the compliment.....I'm 42! lol With 2 boys, 19 and 16, if you can believe it.

    The TENS unit also KILLED me. OMG - it was awful.

    The SCS felt totally different. My trial involved leads threaded up my back to my thoracic level, and I wore a fanny pack (Purse with a belt) holding the pulse generator and remote control. The pulse generator sends pulses into the spinal canal that block the pain coming from the damaged nerves below. Gate Theory of Pain, if you want to look into it.

    I had about an 80% reduction in pain and it was amazing. You buzz/tingle all the time that you have it turned on instead of burning nerve pain. It doesn't work on everyone which is why most people have to have a trial first. Since I have almost 100% radiating nerve pain, I was an ideal candidate.

    It's just after 8 am central time and I haven't been called to cancel. I have to be there at 10:30am, so still crossing my fingers.

    I don't think people get to this option until they have no life left and nothing else has worked. I personally have to stay reclined in a chair 23 hours a day. Doing anything else has a limit of 20 to 30 minutes before which I will have the most horrible nerve flares beyond the constant nerve burning.

    And if this does not work for me, my last option is an implanted pain pump, which I will consider. Anything to decrease my oral meds!! Ugh!

    I do have a can AND a walker! My walker is cool, with a basket, and brakes like on a bike. I do used it when I'm going to a store or place that doesn't have a scooter to use. When I have to sit down, I get a few seconds notice. If I don't sit down, I end up on the floor. My leg will literally just "go out". Don't know how else to describe it. I came around to accepting these aids because I thought it was more embarrassing to be falling in public. lol

    Take care,

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  • LizLiz Posts: 8,913
    Hi Tarheel girl
    I am too experiencing most of the pain you describe for the past 3 weeks. I had surgery 1996 Laminectomy L 4/5 S1 for spinal stenosis. I have suffered since from pain which is normally manageable, since April last year I have experienced my 2nd big flare-up. That agonising pain you describe, the burning sharp electrical pain that grips, brings me to the verge of passing out.It is in my lower back, left hip and the whole of of my left thigh, like one almighty cramp I tried heat, but found ice packs was all that would give any sort of relief to enable me to get to a chair. I haven't been able to sleep in my bed for the last 3 weeks, as lying on my left is like a stones digging in my hip which wiithin one minute causes spasm in my thigh, it's too painful to lie on my back, bit easier on my right, but when I go to get out of bed the cramp starts which then goes into my back within seconds and there we go again that sharp severe pain that fixes me to the spot.During the day I can sit in an armchair as long as I am supported by cushions strategically placed, and taking short walk around the home every 15 mins.
    I hope you find something that works for you, as the pain wears you down.It is good to know other people understand our pain
    Take care Liz

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • up my alley with this pain. I have had L5-S1 pain for years. I actually have very little pain in the lower back. It is sore, especially after a bout of spasms.

    Most of my pain is in my butt and down my legs with about 75% of it down my left leg. I get unbearable pain in my butt cheek that feels like someone has stabbed me with a steak knife and is twisting it around.

    The pain radiates down my left leg into the foot. I get burning/tingling/pins&needles down the leg. The best way I can describe that pain is that it feels like I have layed my leg on smoldering charcoal that has broken glass mixed into it.

    I have saddle pain that comes and goes and the best way I can describe that is that it's like I have been kicked inbetween the legs. Don't know if you can relate to that but thats it.

    I really can relate to the feeling of glass in your foot. I havn't heard it described that way, I am ultra paranoid about having a spider in my shoe. I can't tell you how many times I think I have stepped into my shoe and think that I have been bitten.

  • Cheri,
    I'm sorry for the type of life you are left with...that is so rough! How did the procedure go? I pray it really helps your pain and betters your life so you can get around more.

    Liz and Kai...hope you two feel better too...my appt went well and my Dr. upped my meds to long acting (oxycontin) with percocet for breakthru and a different relaxant. I think the steroids kicked in as well? Something changed b/c my pain level is down a notch. Thanks to all!
  • I like to find a position of ease and lay in it for a while to ease the pain sometimes it can be the strangest position, I use to curl up alot. Most of the time just handle it because the drugs make me too wasted and I get addicted to the ones that actually work a bit. I take regular doses of magnesium and calcium, B vitamins and vitamin C. If I go two days without magnesium my muscles go crazy and My whole body is very sore.
    I also had moxybustion / chinese accupuncture where he diagnosed my issues by measuring my pulses. It worked but like a drug would wear off, sometimes after two weeks and sometimes after 5 days or not work at all. My kids ae crying, I hope everyone if feeling good.
  • The procedure itself didn't go so well, but at least I had pain control. Just wish I hadn't been awake to listen to all the troubles! I have an anomaly or something in my spine causing problems. But, the SCS is in and we were finally able to get a program that is working.

    Currently, I am buzzing down both back legs, my rear, and everything in between. A little "over kill", but it is covering the nerve pain. It is the weirdest sensation. Imagine being a massage chair. Not sitting on a massage chair, but BEING a massage chair. lol

    I have kept the unit on almost constantly since Monday. I turn it up or down depending on what I am doing. When I lay back or lay down, it gets naturally stronger so I have to turn it down a bit. When I am up walking, I have to turn it up stronger so I feel it. All this will adjust through time, trial and error.

    So far, very happy. Tweaks will be needed for sure, and if the leads move any at all, I may have to go in for another procedure to get the paddle leads. But I will cross that bridge if and when I get there. The pain relief is just so amazing - it is worth it to struggle if needed to get to the finish line.

    Take care,

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