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Pain description elusive

armelindarmelind South TexasPosts: 88
edited 03/26/2015 - 5:57 AM in Pain Management
There is good news to not having any change in my condition. I haven't gotten worse. But I still have days that are grueling to get through. Sudden cold weather spells, rain and anything else that can stress the mind and body is very hard to cope with. Since I am on a different type of pain medication than I have ever been on, I generally find it hard to pinpoint my pain levels at any time. I can feel my body reacting to pain; breathing irregularly (catching my self holding my breath), sweating, tightening of my muscles in my core and sometimes using my arms or shoulder to hold myself up at my desk, but I cannot say that I am experiencing intense pain but my body is reacting as if I am. I feel pressure, I feel strain, I feel dull aches and mild sharp pain constantly. I guess I am feeling the medication blocking the pain signal to my brain but my body still knows it is there. How do you put a pain number on that?

I have very little, if any limitations to mobility but once I start moving I can feel the "rust" in my body. I strain and grunt to move all the time. I have no problems lifting fairly heavy objects, I can do much of the stuff I did before but I really pay for it in the hours immediately after and some times even days after. But even when I am in intense pain I can still move. However the more I move, the more my body hurts later but I still get no limitation of movement. I can work very hard and keep working through the pain and push myself but the pain I will get later often makes me afraid to do anything else, even though I am still able. And that's when the pain meds don't make any difference. My pain is much much stronger than any of the meds I have ever taken.

I cant remember a pain free time at anytime in the last year or so. Meaning, 100% of my day I experience some form of pain but I know meds only mask it some. The closest thing I can compare it to is, after getting your wisdom teeth pulled and you are on RX meds for the pain. You know you should be hurting and you can feel where the pain should be coming from but you just aren't getting the signal. You are even exhausted by the pain that you don't feel. Dealing with my pain is very close to that. I am exhausted all day and every day experiencing pain consciously and subconsciously. It wears me down whether I feel it or not so much.

I just thought of 2 better ways to describe the pain I am in. Imagine this, you are sitting on bleachers. Remember those old metal bleachers in school? Sit down on them for 4 hours. You know that ache you get in your bones if you dont have any padding? Imagine that pain when you lay down. When you drive your car in traffic. When you are reading bed time stories to your kids or grandkids. Imagine that pain during intimate moments with your significant other. That is about half of my pain. Ok, here is the other way I feel it. Imagine laying on your stomach. Now, get someone your size or bigger to stand on your behind. Your breathing gets heavy and labored, you can feel your pelvis straining. You can feel your pelvic bone structure flexing from the weight. It's beginning to be too much. You cant take it anymore so you ask the person to step off of your rear. Now...... get up. You feel instant relief right? Not with my condition, I walk and it feels like they are still on me. Sitting I still feel the same strain. Walking doesnt help. Stretching does nothing. Chiropractors do not help, Swedish massages dont provide any relief. It isnt muscular...its all in the part of your nerve root that branches off the spinal cord. There is nothing that can fix it. It is called EPIDURAL Fibrosis (sorry I put wrong word in there when I originally typed this). Scar tissue on and around the nerve root.
There is nothing that modern surgeons can do that wont cause more scar tissue.

I am a slave to my meds and pain. I am told this is a permanent condition. This website let me know that I am not alone in the world. However, I am alone in my home and family and as far as I know, in my region too. No one understands and I am tired of explaining it to my wife. She has hard days at work and she has her pains. I wish I could give her my pain for a full 24 hours... not to hurt her, but to let her know what I am dealing with when I decide to go out for the evening, do stuff she wants to do or just sitting and talking when I am hurting so bad, I just want to be left alone.

Speaking of my marriage, my pain is killing our relationship. We don't have "together" time anymore. She doesn't try anymore because she is afraid of me rejecting her. I stay away, I am cooped up in my side of the house because I don't want her to hear me complain. I don't want her to see me in pain suffering. I just want to be alone. To me it seems like the animal that runs off to hide to wait to die from their injury. I am not gonna die but I feel as though modern medicine took that away from me. If it were the 1800's I probably would just go out to the wilderness and find a comfy place to pass away. I am fairly sure that the stress from my pain would kill me if I wasn't on my current pain meds. I am not happy. I am not content. I don't have goals. I am on auto-pilot. I go to work to earn a check, I pay bills and I go home and exist in pain. I have nothing to live for but I do because people depend on me.

My wife has her own issues with anxiety and other brain maladies. She takes time to go fishing or to the coast or to the river to sit on a tube and relax. She wants me to join her. Sometimes I do but no matter what I do, I cannot escape my broken body. I cant get a vacation from my pain. I cant put behind me for any amount of time. No matter where I go, there I am in pain. I cannot have a good time. I cannot do anything. Sleep doesnt satisfy because my pain wakes me. The worst thing about sleep is that when I can sleep, I dont remember being pain free while asleep. Conscious life is 100% pain all day. Sleep can be pain free but I dont know. Anytime that I am aware, I hurt.

And like Forrest Gump says, "And that's all I have to say about that..." for now.

Sorry if this is a big bummer for anyone. I guess it helps to get this out of my head rather than keeping the poison inside.

In case you were wondering what procedures I had.

L4 & L5 and S1
Spinal Stenosis(?) Laminectomy
(Transforaminal Lumbar Interbody Fusion (TLIF) Back Surgery)?
Rods - Screws
Bone growth stimulator

Here is a photo of the hardware after it was removed (due to pain still present after healing)

And here is a couple views of the hardware in place thru x-ray




  • Armelind:

    Check your inbox. I sent you a message.
    Jim Bryant
  • itsautonomicitsautonomic LouisianaPosts: 1,816
    Sorry to hear about your struggles. I struggle terribly myself
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • armelindarmelind South TexasPosts: 88
    edited 02/11/2015 - 5:45 AM
    MY doctors say that I am physically capable of doing everything I want and need to do. However, the pain says I am broken. The Drs say that it is my nerves that are broken. I am getting all the pain signals of an injury even when I dont have one. Scarred nerves. SO...I do as much as I possibly can to do what is needed around the house and whatever else. But all the while, I feel as if I re-injured myself. But after a day of rest, I am back to where I was before.

    Theoretically, I should be able to work thru the pain and still not cause damage. The pain is acute when I do anything at all though. I get short of breath, I feel as though I can barely move. My muscles tense up, I start getting dizzy and I start sweating profusely. It is all very distracting while I am telling myself it isnt real. It sure feels real though. Its all in my head? The doctors say yes.

    I have finally been told that there is one real solution that the military hospitals are experimenting with.... stem cell therapy. If it ever becomes mainstream, there is a possibility that it could help so many... but it is basically not an approved treatment yet. What good would it do me if I am 60 or 70 and already withered away? That is only 20 to 30 yrs away.

    I will try to do what I can for as long as the pain lets me. Its all I know how to do. Hope for the best and be glad that I am able to do what I can.
  • itsautonomicitsautonomic LouisianaPosts: 1,816
    "Theoretically, I should be able to work thru the pain and still not cause damage. The pain is acute when I do anything at all though. I get short of breath, I feel as though I can barely move. My muscles tense up, I start getting dizzy and I start sweating profusely. It is all very distracting while I am telling myself it isnt real. It sure feels real though. Its all in my head?"

    Are they correctly diagnosing you would be the question I would be asking, is something else going on. If doctors are saying nerves are broken or scarred it is not in your head correct? Or do they mean the nerves are getting wrong signals from brain?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • armelindarmelind South TexasPosts: 88
    I have scar tissue on my nerves, which was either from the original injury or from my different procedures or the surgeries. I have had x-rays, CAT scans and MRI's with and without contrast. Three different doctors said bone and muscle-wise I am healed but weak. However, my nerves are saying there is an injury because they are injured. I guess it is like the phantom limb thing. But mine is a phantom pain. Its scarred so close to the spinal cord that without surgery and probably causing more scarring, they cant get to it. They dont want to do anything more because it may end up doing damage. At least, thats what I am told. Truthfully, I dont want them going in there anymore either.

    Another thing is something I said before, I believe; the pain is only pain - its like an emotion. It hurts VERY MUCH! But I never lose mobility. I dont have so much tightness that my back spasms so badly that I hit the floor or lock up. I can feel my back responding to the pain but its not like before. I can move all around and I hurt but its not so much the movement that hurts. It just DOES. I guess it can be compared to having a mild to moderate migraine. It doesnt stop you from doing really anything but no matter what you do, it is very uncomfortable. Your migraine says, "stop or you will feel like you want to die" but you know that you arent really inhibited from doing anything. Migraines can make you so tired and even nauseous and it is a struggle and very exhaustive to deal with it while you try to carry on your day. That is the best way I can describe it. Other than that blinding pain when you hit your shin on a trailer hitch behind a truck. It doesnt stop you either but you dont want to do anything until the pain is gone.... THATS how I feel. But I am told the pain wont go away. So.... whats next?

    I dont know if you ever worked a VERY long day of lifting and or shoveling lots of dirt or something strenuous while bending over. I can get to that type of pain level within about 20 minutes of light to medium work. But if I continue to work, my body doesnt really give out. I just get very exhausted from the pain. I am weak because the pain has kept me sedentary. But if I rest for a couple hours, I feel a bit better and I can go back to working. Its as if, I dont get a tired signal from my nerves or a "just a little sore" feeling. I go from my constant 24/7 ache to emergency broken back pain. But my body still works. There doesnt seem to be much of a middle area in my pain.

    And the weather changes hurt as though I have broken my back sometimes. I can feel a weather change sometimes 2 days in advance. The cold and wet weather doesnt hurt... its the change that hurts.

    Sometimes I can have a long day of intense pain and go to bed and wake up with the normal dull ache and sometimes I can wake up worse off than before I went to bed. I never know... all I know is that even at my worst days, I cant stay in bed because it hurts too much to lie there. I have to get up and sit in my office chair.

    I hope that answers your question.
  • I'm afraid I'd want to slap my doctor if they said my pain was in my head! It's easy for someone who has never been through the surgery or recovery to speak so flippantly about pain. I have similar symptoms as well and I can tell you it is real pain and not in my head. When my legs feel like their going to come out from under me because of the pain and discomfort in my back the best thing for me is to hit the bed (or ground) and rest. I love my hot tub for such times as well. The only down fall is my legs are weak from the hot water when I get out.

    It's not just in your head! Your doctor needs to learn a thing or two about chronic pain and how humiliating it is when someone makes a reference like he did.

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • itsautonomicitsautonomic LouisianaPosts: 1,816
    I agree for someone at their wits end dealing with pain to hear I think its in your head can be devestating to hear. Sometimes the doctor may just mean he wants you to see someone , but does not do a good to explain that the pain is real , but I think may have a mental component. In my journey to find answers it was by far the most destructive part , it crushed me everytime, caused me to doubt myself and my approaches , made me depressed and at times feel like maybe something is just wrong mentally with me, but I could always come back to rational , educated thought and then I knew it was not in my head. But I shed alot of tears over it, I never minded hearing I cannot help you but I will get you to someone else to see if they can, but hearing in your head still hurts. I would say you either become depressed and give up searching or obsessed with proving their is a reason you are in pain, I choose the later and their ended up being a good , testable reason. I thought of giving up many times just because of these words. They really can cut deep for someone barely hanging on.
    It got to the point I was so ashamed of the symptoms I was having and feeling like every doctor thought was in my head I would start the conversation about symptoms with doctors off with an apology if this sounds crazy. It was nice when the diagnosis finally came , but it still is embarrassing to talk about all the symptoms and my doctor now constantly tells me to stop apologizing . Funny story about that, I recently had a fever of 101 and I noticed my burning and cold issues felt amazing and I had been noticing that the morning after I take viagra I feel good. I sent a message to my doctor because I trust her and feel so comfortable to be open without judgement, well she called me back at lunch and we had a 30 min conversation about how that actually is a common occurence with her small fiber neurapathy / autonomic patients in the studies she preformed. She is looking into some meds to raise my core body temp and see if this helps the neurapathy pain by increasing the blood flow. She said after exercise , patients with nerve issues can see up to 20 percent greater conduction for short periods after exercise. Moral is I would never had thought to be so open with any of the other doctors I have seen , but with her its like speaking to a friend without judgement and only concern. Its such a load off.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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