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Pain keeps getting worse (Long post)

eajosepheeajoseph Posts: 315
edited 06/11/2012 - 8:34 AM in Chronic Pain
Since my surgery in January 2009 (removal of L4-S1 discs and both levels fused) I have been experiencing a lot more pain. My feet and toes go numb, burn, and tingle on top of straight out hurting. The numbness, burning, and tingling will spread up into my ankles, and legs; it's really bad when it gets up to my hips. Originally the sensations in my feet would spread to my ankles sporadically. Over the last few months, it is pretty consistent for these sensations to go almost half way up my calves and shins. Not fun. My neurosurgeon has no idea; PMs just keep shoving more pills my way; and everyone says that it's too early to know if this is permanent nerve damage or not.

In the process of dealing with pretty significant pain on top of the migrating sensations in my lower extremities; I have been unable to work since October 2008 and have had to leave college. Realizing that I am not able to fulfill my dream of becoming an elementary teacher has been difficult for me; I only had one year left.

In the last month, I began experiencing extreme stiffness (only word I can think of) in my fingers, knees, feet, toes, etc. Every joint of my body below my chin. My knees have begun hurting as the right one did in the past which resulted in arthoscopic surgery twice; the other knee has never bothered my like this. I have burning sensations from my shoulders to the ends of my fingers, numbness, and tingling as well. It's not consistent; one minute it's my right forearm, wrist, hand, and fingers along with my left elbow and shoulder.

I'm also having what I think are severe muscle spasms in my shoulder. My neck and upper T area hurt; sometimes I can't do a simple head roll when I'm trying to do mild stretching to work the stiffness out of my neck. And I hurt in these areas too.

The other night my husband noticed my thumb and ring finger doing a type of twitching in my sleep. He said it wasn't a normal twitch that it looked more like an electrical impulse. I'm exhausted pretty much all the time. I tend to fall asleep every afternoon even though I really can't do much of anything.

I saw my PCP the other day to talk about what's going on. He ordered a ton of blood work to rule things out. And he wants to have a MRI of my entire spine done. He referred me to a neurologist (not surgeon). He said that he would trust this neuro with his life. Funny part of that is I was about to ask him who he would see if he needed a neuro.

I dread the thought of telling my PM about what's going on. If I show any signs of being upset or stressed about all of this, she starts in on me that she's worried about my depression. I'm not depressed. I'm frustrated, tired of hurting, etc. But I get up every morning, shower, dress, take care of my kids, etc I rarely cry about all of this (never in front of the kids) but it does suck that my entire life is screwed right now and I have no idea what's wrong or if I will ever get better. Have been close to going to the ER several times.

I see the neurologist on the 25th. I'm praying that she will be as great as my PCP claimed she is and that she can tell me something soon.

Sorry for the long post. I haven't been on the boards much lately. It seems like I get nothing accomplished but the day is gone or I fall asleep when I pickup my laptop. Thanks for reading.


  • i needed another shave after reading it!! only joking
    i think that it is a bit early to see if your surgery has been a success my last surgery took 20 months to settle down {and now i have been left with constant back ache and weired leg pain ..so not much better than before the surgery then!} i have to keep it under control with large amounts of Oxycontin and oxynorm for BT pain.i am not happy about it but that's life .i hope that you get a better result .i do think from experience that you will always have some sort of back ache for the foreseeable future my advice just take it easy and look after yourself personally i have no faith in pain consultants as i have had a bad experience with them.i wish you all the best ..do stuff at your own pace and do be too disheartened if things don't go to plan for the moment ..you have had major surgery and it will take a long time to heal
  • You know that our lives right now seem to mirror each others in many ways. I have been to the ER for pain and put in hospital. Dont ever be afraid to go there if it becomes to much for you to handle.

    I dont know about the your hands, but I am having pain in my knees as well. It is calcium build up and I am to have surgery the 21. I dont know yet if I will do it, with my back flairing up so bad. I go to the ortho on the 17 and he is doing injections by the screws to see if it is mechanical pain. It seems logical to me, cause it was better when I laid around with pnuemonia. Then got alot worse when I became active again.

    I am glad you are going to a nuero to see what he can find. It is frustrating, always in pain and unable to do anything fun in life. I dont want to be on the level of pain patches that I am on right now. It makes me sleep and tired all the time. I am hoping it is the instrumentaion, and once I am fused all the way it can be removed. Maybe it is a possibiity with you as well?

    I am so sorry you have had to put your dream on hold. I havnt been able to work for 4 years and it is really depressing after working and going to one paycheck. I hope by telling you thins, that it somehow makes you feel a little bit better, knowing I am there with you. I hope you get some answers soon and that we both will be better. Gentle Hugs sent your way >:D< >:D< Missed you girl!
  • Beth,

    Last year I experienced some unexplained problems with my feet. I went to see a Podiatrist because I thought I had developed a new problem. Long story short, the Podiatrist gave my feet a clean bill of health but suggested that I systematically cease 1 prescription at a time to rule out it not being a reaction to them. 1 week after stopping lyrica, my foot problem completely cleared up.

    Maybe you should try the same. Just a suggestion.

  • I'm sorry that you're still having problems after surgery. This happened to me with my last fusion and I understand how discouraging this feels. You're doing the right thing by consulting with your NS and I hope he gets to the bottom of the problem. It's certainly time for another MRI. I had a post op one and it found scar tissue growing on the left S1 nerve root in L5-S1. There is more on the L4-5 too and I also have permanent nerve damage on the right S1 nerve. Anyways, I hope your case isn't serious and in time you heal completely. There is still time for you so don't give up. Hang in there sweetie >:D<
  • Straker--I warned that it was a long post!! :))( I'm not fond of PM's either. Still hurt? Have more pills. No concern that there might be a cause. ~X( Thanks for your words of support and encouragement.

    Robin--Thanks for your support! You have been through so much. You beat me when you got pneumonia. =)) =))

    Dave--Thanks for the info on Lyrica! I think I'll go off of it for a little bit and see what happens. The numb, burning, and tingling sensations in my lower extremities were there before I went on Lyrica. But it might be causing the upper body problems.

    Meydey--Thanks!!! You are so supportive!

    Wow! Spineys rock! You guys understand like nobody else can. Been there, done that, don't want the t-shirt thing. :))( If the problems in my upper extremities hadn't started I probably wouldn't be seeing the neurologist. But left foot is really being difficult. Most of the time, I can't pull my big toe up without having horrible pain. The top of my foot is a little swollen and it hurts like crazy to put shoes on or off. I didn't do anything to it so I'm a little perplexed on that one.

    My best friend was surprised to find out that I have never had a MRI of my entire spine. C-spine was about a year ago. L-spine was Sept 2008 and May 2009. I just remembered that I read something about osteopenia on one of my reports. Need to see what I can do to reverse or slow down the bone loss that's happening. Ahhh....one more thing for my question list for the Neuro.
  • I haven't been part of this board long, but I really feel for you!
    I haven't had a single person take initiative to try and determine the cause of any of my problems, and because I'm so young I get scoffed at as if I'm making up my pain. I sit in front of a computer all day for work, I go home and take care of my family (a 5 year old and 2yr old twins) and have to keep a smile on my face and not show that I'm tired and stressed from the DAILY aches and pains that I have. There are good days and bad days, but the bad days are REALLY bad.
    I've heard that spinal surgery is the worst of all to recover from so don't give up yet! I've had friends that had back surgery years ago that still have some of the achiness and side effects from it.
    Keep your chin up!!!
  • I too have folks scoff at my pain. I am 56 yr old man and my brother (yesterday) tells me I should "man up and suck it in" and starts telling me about the time he threw his back out and he just learned lived with it. I almost threw my shoes at him (nearest object to me) I was so angry with him.
    Unless someone has experienced the pain at the same level for same time they just can't understand it. I was telling how the pain sometime hit's me and just takes my breath away but he just didn't understand.
    I do feel for you for have to deal with the kids and your household and work. I live alone and not working and just laying up living off of pain pills, so I know I have it a lot easier than you do UTCHIC99.
    Hoping you start feeling better cause you way too young to be going through all that.
    Get well, Dennis
    C3-4-5 fusion 2005
    C-5-T-1 disk bulged
    L-4-5 bulge to the right, with Microdiscectomy, failed
    L5- Bi-Lateral bulge
    Pain in right foot -loss of feeling
    Left butt, hip and front thigh pain with bad shooting pain into inside ankle sometimes
  • My Dr did the same thing to me for years, I kept working and hurting. Tossed my back out again went to ER and was on 75mg/ day morph IR. That was from ER Dr.. and then my Dr did a CTscan finally.

    You should have seen the look on his face, when he tried to not get yelled [by me]at for finding that I had 3 areas that should hurt like heck! He was so apologetic, and forthcoming with meds for a short while.

    Some just don't get it, we have acute pain episodes and then there is the everyday hurt like heck from the years of trying the get through life and kids and such.

    I do hope your feeling a little better - david
  • Utchic99, Dennis, and David--Thank you for sharing your stories. It helps to know that I'm not alone in this battle to figure out what's wrong. I hope all of you are feeling better!!!

    My pain is the same. I took the kids to church this morning and that really did me in. We went to the same church as our neighbor, wonderful people, and when we got home she took the kids to her house, made them lunch, and let them play with her son so I could lay down. (We have gotten very close with this neighbor. It's like we're family even though we are not related.)

    I need to call my PCP on Monday. Got a note in the mail on Saturday from them. Bloodwork came back and I'm anemic. Would explain why I am so tired. My meds really surpress my appetite so I don't eat much. Thinking this lead to anemia. Forcing myself to eat iron rich food. Doesn't explain the pain at all though.

    I'm going Wednesday morning for my MRI. For the first time it will be C, T, and L spine. Last year was just C then a few months later was L. A few months ago was MRI and CT scan of L only. Hope this sheds a little light on things when I see the neurologist.

    If more surgery is needed, I will try to find a new surgeon. The one who did my fusions in January seemed ok in the beginning but the things he has said and done (or hasn't done) since I did not respond according to his text book has made me concerned about his ability and knowledge.
  • Maybe your anemia is a folic acid or B12 deficiency and not iron deficiency. Folic acid/B12 deficiency anemias can cause peripheral neuropathy - would explain a lot of your symptoms and be an easier fix than spinal-related neuropathy (I would take that as good news)! A quick way your doc may have an idea is most CBC's will give you the size of the red blood cell, a small red blood cell size is usually from iron deficiency, a large red blood cell size from folic acid/B12. Make sure if they repeat it, they check relevant levels based on the size of your red blood cell, also ask them to get a reticulocyte count - it looks at how hard your bone marrow is trying to replace a possible loss. I also just googled Provigil - it can cause back pain (6%), increased muscle tone (hypertonia), increased & abnormal muscle movement (kyperkinesia & dyskinesia) - which is what you described in your sleep. How long have you been on that and is there any correlation with your symptoms? Also, Amrix is the ER form of flexeril right? I had bona fide tremors from that once, even though its supposed to be a muscle relaxer.
  • Nobody can imagine what cronic nerve pain is they just do not know unless they have it for just 1 day. I have had 6 back surgies fusion L5,L4 then they took out all the metal, because i had a infection, took Cypro for 1 yr it finally has healed. but my pain is getting worse,the pain runs mostly on my right side, like upper cheek down my hamstring and on my right outside of leg, it has been throbbing the last few days, I know its nerve pain i can feel the nerve. I know once you get your back operated on nothing works, I just pray that God takes me home.
  • You brought up a lot of great things. My B vitamin levels were checked and came back fine. I would've loved it if the fix could've been quick and easy. I'll definitely ask about the reticulocyte count. Not sure if that was checked or not.

    I've been on Provigil since last fall. No direct correlation to taking it and the problems I am now experiencing. Amrix is a muscle relaxer, not sure if it is a form of Flexeril or not. I took Flexeril in the past and would be knocked out cold from it. Didn't have any other problems wiwth Flexeril. Been on Amrix since before surgery. Had the burning, numbness, and tingling in my feet before I began these meds. The ensations in my lower extremities has gotten worse. Upper body is a new one.

    >:D< Everyone here is so wonderful. :) You guys are doing more to help me than my neurosurgeon has. Glad I'm seeing a well respected neurologist on 8/25. I appreciate everything you guys are suggesting. Please let me know if you think of anything. I just want some type of a life back. :(
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