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S1 neuropathy - central (very painful!!)

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:30 AM in Chronic Pain
Hi to all

I went off to a persistant pain clinic and the neurologist (whom is now a professor of neurology) has told me that i suffer with neuropathy - sciatica from my damaged nerve.

I never thought they would put a title to my pain (but i guess we all think that) and i think ia m glad that i finally understand.

My nerve is damaged and further to my foot i have peroneal neuropathy too.

I am asking if there are others whom also suffer with this condition and especially feeling the intense pain 7 days a week??

It is horrific at times and absolutely draining and depressing!!

I have been giving a list of things i cant do for the rest of my life (unless i want to experience the pain!!) life i cant pick anything heavier than 7 pounds and im not aloud to bend too much and i have to brace myself each time i cough or sneeze.

Hard to deal with the thought that iw ill have this for the rest of my life.... DOES ANYONE NOW OF ANYTHING I CAN DO OTHER THEN TAKE MEDS?

I am on 20mg oxycontin twice a day and 5mg twice a day with endep 50 at night.

My pain dr said he thinks i should get off the oxycontin but life for me without it IS HELL!! The pain is unreal and there EVERYDAY.

What to do?

Is anyone else suffering with this debilitating condition???



  • The only thing I can think of instead of meds is a neurostimulator which is invasive and would mean another surgery. There are many members who have it implanted and are happy that they went through it. It is not a cure but it's supposed to block pain signals to the brain. Another option is a morphine pain pump which delivers medication straight to the epidural space and it coats the painful areas. Again, it's not a cure but it will reduce or elimination the need for oral medications. This is the same for the neurostimulator as well.

    I'm in the same boat as you with permanent nerve damage on the right S1 nerve and for now I treat it with medication. For the SCS and pump trial, first you'll have to go through a psych evaluation to see if you are well adjusted and can handle having a foreign device implanted in you. Then you go through the trial itself and you have to have a pain reduction of 50% or higher for the insurance company approve this procedure.
  • I have had epidurals that have helped a little of the pain stop but I need to have heat on my leg and foot quite often. I'm also on lyrica and amitriptyline as well as will be trying cymbalta for the nerve pain also. Are you on any nerve pain meds? I would continue to ask your primary Dr for other referrals to other NeuroSurgeons and Orthos who specialze in spinal issues. Tens and other machines that massage have helped me also. Good luck, 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 severe L5 and S1 neuropathy. The pain is very severe, I was hospitalized 4 times towards the end of last year. After my first L5/S1 herniation about 15 years ago I had an open discectomy which was about 90% succcessful and I didnt need medication afterwards. If a disc is putting pressure on nerves relieving the pressure may be all that helps. You could see a neurosurgeon with a recent MRI. Their are supposed nerve pain meds as well, though Ive tried them all(Lyrica, Neurontin, Tegretol, Cymbalta) at high doses and didnt get any help from them. It may depend on the severity of damage because they have worked for many people. There is also a spinal cord stimulator. I think many doctors probably will not want to keep a patient on narcotic medication especially if it seems that is the only option they seem to want to try.
  • Yes...I too, suffer from neruophaty in both legs and feet. But thare is hope!!
    A SCS implant (spinal cord stimulator) works wonders for nerouphaty. I just had my trial implant and I knew as soon as the stimulator was turned on I HAD to have one!! Instead of pain you tingle! The relief from the constant pain was wonderful!! I am now waiting for the permenent implant which will be in 2 to 3 weeks.(back in pain again ugh) My Doctors waits until the implant site on my spine heals but I want the implant NOW!! It will give me my life back.
    It is not a cure but as close as you will get.It is a trade off of sensations (pain) for another sensation(tingling)
    Go to the top of this page and type scs in the search box and read what others have to say about their stimulator. Some had successes and some did not but for neuropathy the SCS is a life saver.
    Best of luck....I know just what you are suffering. It is constant he#*!! But as I said thare is hope....do not give up.
    A lot of people on here use a "Tens" unit.....I think that is what is is called. Type that into the search box at the top of the page and see if that may help you. I know nothing about them.
    Best of luck dear....you are not alone and trust me.....you will find help just as I did.
    Hugsssssssss >:D< ps Sorry this is so looong.
    Patsy W
    Oops....I forgot to mention Lyric for nerve pain. A lot of people on here swaer by it. Talk to your Dr. about giving it a try. It may take a while to start working. I tried it but had a bad reaction( I have a lot of trouble wirh medicines) My list of what I can't take is much longer than what I can take.LOL
    As I have said over and over.....do not give up!! Read everything you can on this site and you will find a lot of very good information.
    Another hug....
  • the best tablet for nerve pain is gabapentin but it has side effects like weight gain and water retention .but you can increase your oxycodone {with your doctors permission!!!!} and you could try the acticare unit .its a high end TENS and external SCS see www.acticare.com for more info .i do feel for you as i had really bad nerve pain before my last operation .now i have back ache and some nerve pain ..but its no where as bad as it was .
  • I too am in pain. I'm new here. I haven't been diagnosed with spinal stenosis but have had all the symptoms since before 2000. It was in 2000 I suffered nerve damage to my left thigh. It was so bad that I couldn't even let the bed sheet touch it. It's permanent now. I've been on a lot of different medications too. My knees have been hurting for about 2 years too and the peroneal nerves in both knees are bad. MRI's of the knees were done showing there isn't any ligament damage. But recently it's my lower back.

    Has anyone experienced lower back pressure so bad that it feels like it's in your rectum? Sorry for being graphic. I've experienced this off an on. The most recent about 3 wks ago and in the middle of the night. I got up to see if I emptied my bladder I would get some relief but to my surprise I wasn't able to, and had no feeling either. This was new to me and scared me a little so I called my GP and she said it was the sacral nerve in L4L5 area (where my disks are bad ect.) The MRI didn't show any "new" damage to the L4L5, spinal stenosis, or bone spears since the 2007 MRI. But I have been have so many new symptoms. Anyway my Dr. appointment w/my Neuro. is in a day and I'll find out more.

    Thanks for the sound off forum, we are invisible suffers.

  • My neuropathy stems from an operation i had 3 and a half years ago. I had 3/4 of my right L5/S1 disc removed as it had caused my WHOLE leg to go numb and the drs said if i didn't have it done my brain would syop receiving messages and eventually stop blood flow to it... VERY SCARY TIME!!

    The op relieved my pain and i gained 95% of my feeling back just except in my ankle and big toe. The neuropathy has set in as of around 14mths ago when i started to get increasingly severe pain triggered by the effected area of my spine..

    I am in Australia and the government has recently cut back on the scs fund (they call it the dorsal column stimulator here). So i don't think i would fit the requirement now as you have to be over 50 years old and i am 29 (30 in 10 days).

    Really sucks!! I have not tried the nerve drugs yet..

    The oxycontin work quite well only sometimes i get a really bad sharp tinge but i feel like i am so use to it now!!

    Neuropathy is a really bad pain that just sometimes doesn't let off no matter how hard i try to rest or massage, it's really quite amazing (not in a good way at all) that such a little nerve can cause so much damage and horrid pain!!!

    Anyone feel free to leave a note because hearing other stories really does help in little ways, it's like a type of venting.

    Love to all x
  • Yes yes yes yes - yes to everything. Yes, nerve pain is one of the most horrid, insidious pains. It's not muscular, although muscle cramps exascerbate it. The day I was told I had permanent S1 damage, I was told to get the SCS - spinal cord stimulator. I was in shock and waited almost a year. A year I spent fully reclined in a chair, because any movement, sitting, walking, you name it, gave me nerve flares I could not handle. Staying fully reclined kept me at a 6+ out of 10 on the pain scale. Meds don't help nerve pain - they just numb your mind, which isn't working too well. Didn't for me, either.

    1.5.09 - my emancipation day. My permanent SCS was installed!! Since then, I've lost 22lbs, I'm out and about, I go to the mall every weekend, I don't stay reclined in the car, I can travel 8 hours and survive.........I could go on and on and on. I still have pain, don't get me wrong, but it is a different pain. I can pick up my remote control and do something about it. If I can't quite knock the pain entirely, I can at least distract my brain with some sort of program. I find the buzzing very comforting and keep my SCS on 24 hours a day. (Seering nerve pain if I turn it off.)

    Radiating nerve pain is THE MOST IDEAL candidate for the SCS. If your doctor hasn't mentioned it, maybe you need a new doctor! I'm shocked, frankly!! It's not a cure all and not everyone is a good candidate, but it does work by blocking the pain from getting to the brain (most, not all, the pain). You will buzz/tingle and have a remote control to control the programs. Some will buzz constant, like buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz. Others are buzz buzz buzz buzz buzz. Still others feel like a jackhammer on concrete hard type buzzing.

    My experience with nerve pain was a 24/7 burning, seering, mind-numbing pain. Pain that never stopped. Just pain that got worse if I moved, but burned still if I stayed reclined 24 hours a day. It is horrible.

    Good luck,

  • oh my goodness, just read what you said about Australia and the SCS fund. I'm horrified for you!! I would be saving up my pennies and going abroad to at least have a trial. There is always a trial, to see if it works and would be worth it for the patient.

    Unbelievable!!! So sorry to hear that.

  • Please help. I began to develop symptoms of neuropathy in my left and right toes in mid-February 2014. Since then, the numbness has gradually spread through my feet. I am beginning to have motor nerve issues as well - weakness in my left leg, my right ankle, and my left hand.

    Now, I have a very strong suspicion that this is related to some issues with my L5-S1. In the months leading up to the tingly sensation in my toes, I carried several heavy objects that aggravated the discs in my lower back. The pain with each episode became increasingly strange; I noticed sensations of numbness in my spine area that would linger and fade. Around this time, while trying to do the "superman" exercise, I noticed an entirely new vibrating sensation in my crotch, which eventually went away. If this isn't related to the nerves in my lower back, what could it be?

    Once I got the numbness in my toes, my PCP ordered an MRI which showed some mild degeneration at the L5-S1. Otherwise, my spine looked normal. The neuro-surgeon told me that there was nothing to cut and sent me to a neurologist. Further, he said that if my neuropathy were related to my L5-S1 that I would not have such a wide distribution of symptoms across my body - it would be localized.

    In light of the events that I have detailed above, I remain convinced that somehow trauma to my lower back is involved with my neuropathy. May I ask if anyone out there has any ideas or comments? I am currently working with a neurologist to try and figure out the cause. Thanks!
    Does Anyone out there know what a NDH injection is? Am due May 6 for procedure NDH for sacroiliac
  • http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-spine-health-how-get-started

    Hashan, this link is to a map that shows where each level of spinal nerves innervates an area of your body.....it might help you to compare where you have symptoms, and what spinal level that it relates to.
    It is possible that doing the heavy lifting, you managed to cause the tissues, muscles in the area to swell or become inflammed enough that it compressed some of the nerves for a time.......
    Are you having issues with genital , buttocks or inner thigh numbness and pain? You said that the numbness is spreading through your feet? It is time to see another surgeon for a consult and examination, as well as possibly a new MRI to see if there is something going on that has changed from your last one. How long ago was the last MRI done? Are the symptoms that you are having new?

    Peak Creek, pardon me for welcoming both of you in one post, but I am alone tonight moderating and am trying to make sure that I get you both welcomed and some information.....
    As far as injections go, I am not sure what a NDH injection is, unless it is supposed to be an acronym for non diagnostic ??? ......Typicaly injections in the SI joint are done to confirm that they are a pain generator and to see if the injection is going to offer any relief of the pain for the patient. If they do offer relief, even temporarily, then they usually offer to do another, longer lasting injection.
    SI Joint

  • I've been suffering with spinal chord injury since 1999 after I was rear ended by semi trunk on freeway. Approx 10 years after gad c5-7 fusion which didn't heal properly mainly they used a cadaver bone 4 plate 2 heal into which mine didn't since I have celiac disease (which is also an auto immune disease) so bone didn't heal correctly, my body probably didn't accept it way it's supposed 2 (after surgery RN was checking my hip since they usually use part of ur own hip so bone fuses properly). During surgery they also cut my vocal chord so I couldn't talk louder than a whisper 4 over 6 months till they would fix it which required another surgery. Since it didn't fuse properly for past 10 years I've been in chronic pain, cannnot lift more than 5-10 pds, have 2be careful how I sit -anything makes neck hurt or gets crooked then I get severe migraines which last 3-5 days (cannnot do A THING when I have migraine & my head feels like it's being squeezed in a vise, can't even stand hearing my own voice in my head. I sit in chair that keeps back straight as possible & just throw up even though I can't eat or drink anything or take any of my meds 4pain -i have nasal spray 4migraines that works sometimes & most time gives slight relief. I mostly sit in dark room alone with as little noise as possible & throw up til even stuff @ bottom of stomach coming out -don't know what it's called & sorry 2b graphic. I cannnot evn ttake my pain meds since I cannot even keep water down, let alone any food & just smell of family cooking makes me get sick too. (Those of u who suffer migraines I'm sure can relate 2what I'm saying. Been taking Lyrical I think since drug came out since said I also have fibromyalgia & my legs always felt numb - could poke my thigh but like u couldn't feel it) but Lyrica seemed 2help. Tried neurontin but made me tired & did nothing 4my legs. What I need ur help with now is recently was having such terrible back right leg pain - felt like charley horse that wouldn't go away - hurt to lay on it or sit on it (felt like was sitting on bag of rocks) . I always need 2 lay on back when I sleep because of my neck but leg pain was so bad had 2 sleep on side most time risking my neck getting disjointed & getting migraine. Neurologist suggested EMG which is a test I had b4 on my neck & upper back & I swore I'd never have that test again -it's like being on that show 'Alias' & they have u on table & guy comes in 2 torture u with his little kit - they electrocute u 1st on sensitive spots like ur funny bone & then after poke u with needles in same places (good test I guess to test ur nerves) but I went ahead & had it - wasn't as bad on bottom 1/2 of body anyway. Now tests show I have S1 neuropathy & they want me 2have an MRI now. From what I've been reading from this site u need some foreign object put in 2help with the pain but my body doesn't do well because of the auto immune disorder & it seems every time I have a surgery something else goes wrong. I take pain meds because I have lots of stomach problems where I can't take many other meds especially capsules. I already take Lyrica & Propanalol (blood pressure pill 2keep migraines under control). What should I expect next & also wondered if anyone else deals with issues because ur taking pain meds I? Most my family won't talk 2me anymore just because I take them & because I've been denied SS Disability 3x's they think I must not be disabled. They expect me 2just deal with the pain & also get a job. I was fired from my last job because I missed too many days off. Allowed 3 per year & that's 1 migraine 4me. I was 1 of best workers there too & didn't want 2let me go but felt had to use me as example. I've worked my entire life until 4 years ago (had job after that 1 where had 2 stand up all day & I found out I lasted about 10 minutes. Dr's where always focusing on my neck & upper back & never really looked into low back. 1x they did & just said I didn't have much fluid between my discs so they're rubbing against each other causing pain. Were originally going 2fix my neck with another surgery but said they'd have 2go in thru back & recovery time would be very long then decided against it & said I'd just have 2deal with it as best I could. I wad tired of living & feeling like an 80 yr old in a 40 yr old body. I lay on heating pad every night 2point I have burn marks on my back - look like a leopard. But that & medications R only thing that help me live with each day. I don't c how people can tell u 2just deal with it but they aren't living in this body. I've even had Dr's tell me that & I feel like hitting them upside the head with a shovel & then say, 'now we're even, let me follow u around I& see how u get thru ur day.' It's hard 2describe but it's hard 4me 2 hold my own head up each day. My neck is weak so if I have day where I gotta be out all day its very difficult , hard 2turn my head when I drive, just getting regular daily chores done is difficult. Have 2pay friends 2help me with obviously money I don't have. Don't mean 2sound like a downer & this site is such a God send since it helps 2 hear other's stories although I wouldn't wish this life on my worst enemy. But if anyone can let me know what 2 expect now - is leg pain going 2continue or get worse? At least b4 I didn't have 2deal with my legs except 4 numbness & Lyrica helped that at least. Thanks to all & even if it's bad news u have 2tell me or share with me I'd rather know truth & be prepared. Thanks to all of u & 2 everyone that shares their stories -its very helpful to know I'm not alone. Any suggestions would be great on any issues u saw in what I wrote. Thanks again 2everyone!!! Filling out my SS papers again for 4th time. Any suggestions on that would be great too. I live in MN - the great state that thinks u should be either working or going 2 school.
    Lorri Lastimosa
  • First, you can't use texting shortcuts on the forums. so please make sure to read the forum rules......
    The next step is finding out what exactly is causing your pain.......these two links will help you to understand what tests may be done and why.

    The third step is treatment, and outcomes........depending on what is found, the surgeon and other medical professionals involved in your care, will determine what options, surgery or not, would be the best avenues of treatment for your particular condition.
    I have to caution you, unless there is a clear cut medical reason for not using a particular medication, such as documented allergic reaction, or some other condition , most doctors are not going to simply use only certain forms of medications....I am unsure why you say that you can't swallow pills? How are you able to stay hydrated or nourished if you can not swallow?
    They may decide to request updated studies on the cervical area as well to see what if anything may be causing that and determine what needs to be done to correct that.

  • Thanks 4the welcome, appreciate it. :-) Must have been a misunderstanding, it's hard to write since using just cell phone & not computer 2type. It's not that I can't swallow meds I have stomach ulcers & other stomach issues where I can't take things like Advil, aspirin, celebre, etc. & also said that capsule type pills bother my stomach & already on some capsules - Lyrica & a blood pressure pill 2keep migraines under control. I have also tried the shots in my neck & lower back but no relief, just weight gain which means I have to carry around more weight. Harder on my back & neck. Little over year ago I did also have an allergic reaction to an antibiotic (which happened 2be on allergy list last 10 yrs.) Cause me 2get severely dehydrated & then had seizure - fell 3x's hit my head very hard now deal with short term memory loss as well so if I repeat myself. Spent 4 days hospital & when i awoke, didnt know who.President was - very scary. I'm sorry, hard 4me to tell stories in order I want - get mixed up & tend to repeat myself). But wanted 2explain I can swallow pills. My stomachso mmessed up I'm in process now getting teeth removed 4 dentures. Some of those problems I think also come from Celiac Disease.
    Lorri Lastimosa
  • Please do not use texting shortcuts.......the 2be or such are not permitted on the forums. I realize it may be hard to type out the words but we don't allow those shortcuts.
    Anyway, not being able to take NSAIDs is different , you mentioned stomach and swallowing issues, so I may have misunderstood when you mentioned being sick to your stomach and the swallowing issues.
    Anyway, there are lots of options but one of the most important ones is first, finding out what exactly is going on, the second is getting you up and moving again. Laying in bed only worsens your body's inability to tolerate being up and moving...you do have to work through the pain at some point in order for your body to stop trying to set limits and have you go back to doing nothing.http://www.spine-health.com/conditions/neck-pain/types-neck-pain
  • I know it can be daunting when you are living with a number of different medical conditions. Have you had Celiac disease since birth to your knowledge? I know it can be difficult but I'm sure you know that taking strict control of everything that enters your body is the only option. A good pharmacist should tell you which meds you can tolerate but you need to get the celiac completely controlled to reduce your other gastric issues.

    It sounds like you really need to get a knowledgable medical team behind you & start step by step chipping away at your issues. Proper diagnostic tests need to be performed to find out exactly what's causing your pain. Then you can work together to develop an action plan of treatments.

    I'm sorry that you have had such terrible experiences with previous surgeries but please don't let that stop you from moving forward. It sounds like your health issues have completely consumed your life & that's no way to live. I'm not saying that there are any quick fixes but step by step you can move forward into a better life.
    Osteoarthritis & DDD.
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