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Helpneeded soonHHelpneeded soon Posts: 1
edited 05/06/2015 - 9:51 PM in Chronic Pain
I am new, however I first found this site about 8 years ago and am now coming back as this condition has gone from bad to worse. I have been seeing various neurologists for the past 10 years to no avail. Had acupuncture, physical therapy, 3 cortisone injections, 3 MRI's etc. The origin of my pain has never been found.

My pain started in my left foot with tingling graduated to right leg up thigh & spread across my buttocks to the left. Pain radiates heavily on both thighs and I seriously can not sit for more than about 10 minutes at a time. Feels like I am sitting on hot coals. Recline upon waking & must wait about 1 hour to move around after Neurontin & Norco take effect. Standing very long is insufferable. Normal daily life does not exist. I am so frustrated with the medical world as I am afraid I can never get any relief. This CP is like a bad toothache that never goes away.
Therefore, this post in hopes to get some support from those who understand.


  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
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  • I am so sorry that the origin of your pain has not been found. All I can tell you is apart from a bad back a couple of times a year for 40 years, mine also started with pain in my left foot. Which nobody realised was connected to something going on in my back. I have had spondy at L5 S1 it was accidentally found when I was being investigated for Parkinsons disease as the neurologist recognised my neuro signs were wrong. I couldn't walk on heels, tip toe and I have no reflexes in knees or ankles. The EMG tests said I was fine! I finally had a single level fusion at L5 S1 last week and so far so good pain in feet has gone. Could you get either a new MRI or another neurologist to review them? Sending you good wishes.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    edited 05/07/2015 - 7:52 AM
    Help neededsoon , what tests have they ran on you?
    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.
  • ivymiivym Posts: 278
    edited 05/07/2015 - 8:23 AM
    having "annular tears " that did not show on MRI but I don't know how they were found.Maybe someone else knows...moderators?
  • In my experience physical therapy & cortisone injections are only really effective once they know the cause of your pain. Acupuncture is very hit & miss. Some swear by it & others don't believe in it. If you've listed everything...basically you haven't received any treatment! Are the 3 MRI's the only diagnostic tests they've ever run? Were they all standard (laying down in the tube) MRI's? What part of you did they scan each time? Did the specialists look at the disc of your images or just rely on the summary?
    I'm so sorry. From what you're telling us no-one has looked particularly hard to diagnose the cause of your pain! My pain started out very differently from yours but sounds pretty similar now. I have all kind of damage in my lumbar spine & I've experienced (undiagnosed for years) different nerve issues. No-one understands what it's like living with long term chronic pain until they've actually experienced it. You truly have my compassion & support but PLEASE answer our questions & let us help you PUSH for the diagnostics you desperately need. To be experiencing that level of pain for years something is clearly very wrong & it's near impossible to find effective treatment without a correct diagnosis. ;-(
    Osteoarthritis & DDD.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I have had all sorts of back surgery and treatments and I do have lots of inflammation, swelling, bulging discs in my neck and back. More issues with other joints ALL from old injuries.
    About 2 months after starting with the pain clinic I was given an appointment with the psychologist there and he told me I have "Chronic Intractable Pain" or "Central Pain". He went on to talk and my mind went onto wander and when I came home I started looking things up and asking my medical friends questions.

    My first big injury was to my back and spinal cord when I was about 8 years old. Since then pain just plays in a loop. I've learned a lot by looking up things and then asking my PC doctors about what I've read. I'm definitely not happy being told that there is no simple fix- I usually get into my "It's Not Fair" mood once a week and get really upset.

    It helps that I can come here and hear from others or help others. I'm on a lot of medications and I've learned so much from the forums. Even if my pain had a better sounding name, it would still feel the same to me. The biggest help is not going through it alone.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • dilaurodilauro ConnecticutPosts: 9,846
    in many ways goes along the same route as Degenerative Disc Disease. Annular tears are rips or tears through the ligament that forms the exterior capsule of an intervertebral disc.

    The primary cause for annular tears is the normal aging process of our spines. The annulus begins to wear down, so that rips and tears can happen more frequently. Contact sports and trauma are also causes, since they can generate alot of violent stretching and pulling. Another cause is being overweight. The extra pounds puts stress on the spine and can result in these tears.

    Diagnosis of annular tears is done in two major ways:

    Clinical Examinations. During a thorough examination consisting of various bends up/down side/side, etc, a doctor will watch your back and ask you for any increase of pain in any of those moves.

    CT Scans with dye injected into the subject area is the most effective way in isolating the tear. a MRI is not as good in showing the tear, but is necessary to identify the damaged disc.

    Ways to treat:

    • - Cold compresses followed by Hot compresses
      - Acetaminophen (Tylenol), NSAIDs such as ibuprofen (Advil) or naproxen (Aleve) will provide pain relief and the reduction of inflammation.
      - Avoid staying in bed too long. Prolonged inactivity will weaken the muscles.
    Surgery is rarely required, but that option is best determined by your doctor. It is almost impossible to prevent annular tears since the major cause is aging. Many of these tears do not even create any painful symptoms. Keeping yourself as fit as possible and maintaining a healthy diet are important. Ask you doctor for their medical advice on what you can do to manage these tears and ways to prevent them in the future.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    That is absolutly the wrong way to think about annular tears that is the corporate report in truth they often make up the majority of the pain management at many PM clinics and can be much more painful than herniations at times due to the substance that leaks out is a severe irritant to nerves. Do not consider annular teats to only be a standard DDD of ageing.. As someone who had had several and cause so much more pain than a herniation I have thoroughly researched them and the answer above does a poor job in the intricacies of them. Many fusions for tears have been done.
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    edited 05/09/2015 - 6:10 PM
    I'm not sure where I fit with tears , disks, foraminal joints, etc. What I have been studying for a few months now is pain. Not where it came from or where it's going but, instead, the nature of pain. I have bunches of notes here but what I find most interesting is that there is always an emotional component to pain. Pain is and experience which motivates us to do something. That sometime may be taking an aspirin, calling a doctor, screaming, etc. One of the most frustrating occurrences with pain is having that pain invalidated- or having someone else attempt to interpret your pain for you. If you are experiencing a great amount of pain and another person looks at the injury and tells you, "Oh it's nothing" this charges the emotion to the pain. Telling someone "It's nothing" doesn't change the experience of pain.

    Because pain is experienced in the brain, 2 people with seemingly identical injuries will report different experiences with pain based on various external factors. The example used in what I was reading ahd to do with 2 women. But were in labor and delivering babies. One mother wanted her child badly while the other mother didn't know the baby's father, had no plans for the baby and was not prepared for the baby. The woman wanting the baby would have a more positive experience despite having identical pain as the other woman.

    And then there are the kinds of pain, one which is an example showing actual tissue damage occurring each time the pain flares. This is often accompanies by inflammation which releases acid increasing the pain experience. The other pain is neurologic pain or, "maladaptive pain memories the nervous system creates in the setting of the injury." Although the initial tissue damage heals, nerve pain persists.

    Someone somewhere in the forums said that the cause of the pain always must be identified. If the pain is from nerve pain this may never happen but the pain from "pain memory" is the same as pain from tissue damage. And, because all of pain is treated by making the pain pathways from the area of pain to the brain the same medications and treatments work. Extremely validating if you see a doctor who saying, "You have no injury there." Perhaps there is no tissue injury there that can be seen, measured, evaluated, nerve pain can still have a debilitating effect on your life.

    A day ago I had a physical therapist tell me to think happy thoughts because my pain is all neurogenic pain and it never heals and cannot be treated by PT. She suggested a "gratitude journal." She'll be no longer working with that facility after 2 weeks and I won't be going to PT for the next 2 weeks.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    the central nervous system can do very strange things in the neurological part. If you look at CRPS which is the most painful condition known to man where a small injury is interpreted by the CNS as always painful and it continues the cycle and can result in tissue damage. One treatment that has really worked for many but is extremely risky is ketamine coma's, it essentially resets the brain and that reset breaks the cycle of all the bad stuff happening from the body on that limb or injury site. Its a very contraversial treatment as of now but some great results overseas on kids that had no hope of getting better. If you cannot regulate between parasympathetic and sympathetic parts of nervous system your body cannot heal and also produces hormones such as cortisol that in small doses are good for the body but long term production actually destroys tissue and harms body, but if cant turn off fight or flight part of nervous system it will continue to produce those types of things.
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I was on the phone with one of my best friends as I read this. She is a psychiatrist and is learning about all the pain syndromes as I am.
    She's known me only for a few years and hasn't known ALL of the pain issues I've been through- I had never thought of using my experiences to teach others.
    My diagnosis for now is centralized Pain. We've been doing the "Hit the pain with all you've got" to see what will be effective. MS-Contin was a miracle when I first tried that! It was back in November and it had been decades since I had a relatively pain free holiday season. I use oxycodone for break through pain but I use it sparingly. I've had injections with nerve blocks, pain blocks, epidural..... none have seemed overly helpful. I have a TENS unit that helps me a whole lot when I am drawing or painting, times when I need a steady hand and I know I'll be still for hours.

    This morning I fell out of bed...... NOT my fault (entirely). My dog had been sick but brought me his food bowl and was whining. I just tried to roll close to the edge of the bed to see and, memory foam, I slipped onto the floor. Initially everything HURT but once I got back into bed with ice I fell back to sleep. Now I'm looking for injuries and the only thing is my thumb may be broken. My knee, my hip, my back- all are sore but tolerable and without bruising. I had thought I would feel nothing while on MS-Contin but I can definitely feel my thumb! Acute pain is different and I don't know the word but I want to say, more emotional, like I need to move now! (I know, rest, ice, compression, elevation!)

    One of my knees has had 3 surgeries with one splitting the tibia the long way to change the patella angle. Feeling the split tibia has never gone away- it is wedged open with cadaver bone and the split has still not filled in- 11 years since that surgery. That leg does look remarkably different than my other. And one of the nerve did have to be severed.

    I'm absolutely amazed with how much I'm learning about neuropathy and pain. The videos and doctors I've been watching are very informative. I've always worked with brain issues but this is all new. What an incredible and devious organ the brain is!

    Specifically I am looking at oxytocin. It is the hormone which can best diffuse pain. The obvious plays and ways for oxytocin to be released is during labor and delivery of a baby and while nursing. But the hormone is also present while with those we love or enjoy being in the company of. Pets also cause us to release oxytocin and I have a service dog. I know what he does for me but I'd like more people to learn about this non-medicinal option.

    Thanks so much for commenting

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    I am sorry I to have centralized pain, so much different than normal pain there really isn't ups and downs in levels like normal pain. It's caused by a faulty interpretation of pain and dysfunction of your CNS. Some call it wind up theory. It's a vicious cycle . Central pain syndromes are believed to be present in many of the most painful disorders and many drs beleive this explains failed back syndrome when others have same surgury .. Yes the brain and body have huge capacity for healing but also can essentially destroy itself. There is no intelligent design in a brain that cannot distinguish old pain from new pain. My doctor told me to forget everything I knew about pain because CNS pain is nothing the same, entire different animal with little in way of treatment
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Even when it huts a LOT it's helpful to come by the forums and have someone else know exactly how I feel. I have been getting more and more angry with people who say, "Pretend it's not there."

    I have places with tissue damage and other places which should have been fully healed along with the nerve pathways. And then, I also try to make myself believe that I need to keep trying harder. I end up in more pain, with some tissue damage and a bunch of people who still insist that I haven't tried hard enough.

    I need to practice saying, "No. I'm sorry but I hurt too much now." and walk away. I now, formally renounce guilt! I will no longer dwell in guilt because I hurt too much to do something for someone else!


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    You cannot pretend central pain is not there and work through it. It's not an arm or a leg it's the CNS people who say that are idiots. Same with people who say central pain will have good days and bad, that's not exactly true with central pain there are bad days and worse days. Like I said my dr who is a CNS specialist said forget all you've know about pain in the past because I could not understand why I couldn't work through it or push through it as I had before. It also affects congnative function, your body will also be releasing to much cortisol most likely and that alone is tissue damaging in long term vs short term where it's healthy
    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.
  • I have had facet joint pain with the nerves constantly on fire radiating in my back for 7 years. It was difficult to diagnose with many Specialists I've seen but usually was with degenerative discs and history of an annular tear I had in my Lumbar spine.

    I get RFA(radio frequency ablation) which helps a lot but still require meds and the pain really never goes away but can be manageable. Never give up hope for getting some relief for your pain. TC. Charry

    PS also what helped me was getting into a good Pain Management Program and Dr at the hospital and not a clinic.
    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 know how frustrating it is to have pain and no one knows from what. It took 5 years for a urologist to find my disease and the whole time I felt like I was going crazy. I just completed the trial for a pain pump...I know doctors can intimidate and when they can't find the problem they get frustrated and it comes off as they r frustrated with us. I had to take my health in my own hands and went to mayo clinic in search of answers. In short, don't give up and tell the medical community how it is. God bless.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Sugar magnolia, same here that same teaching hospital finally brought the answers to all my pain. Wasn't good news but no one can deny it now. Pain and its mechanisms can be so much more complicated than many dr can handle. Studies are being done at some of the larger teaching hospitals , one in Boston that is blowing the lid off pain and how drs view it now and what can be blamed for it. It's pretty revolutionary especially for fibro patients and differences in acute, chronic, central, complex pain and treatment for it.
    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.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Plum tuckered out, that's a hard one to recognize your limitations and not feel guilty cause sometimes your mind forgets those limitations or refuses to accept them and that results in more pain. I need to understand things and when I had my first spine injuries I could understand there was a hernition on spinal cord a bit and later annular tears found, ok understandable structural defects that felt pin free in morning and gradually got unbearable thru day but with gravity , sitting I can grasp that concept and reason for the most part. Enter 2nd spine injury that resulted in CNS issues and I develop this cool little symptom called allodynia whee bed sheets weigh 100 lbs and cause severe pain, where a ceiling fan blowing air on my feet hurts so bad that I get nauseous, where my right foot and hand get so cold and even though they hve loss of sensation in them they feel like the worst toothache touched by ice then with icy hot rubbed all over it. I for the life of me cannot grasp this type of pain from damaged nerve fibers it's beyond logical to me that it's occurring, won't get better and no meds or treatment seems to work so far. My mind is boggled at the complexity of trying to understand it, but I can't stop trying to beat it.
    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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