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No diagnosis ever

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.
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1

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  • LizLiz Posts: 9,708
    please take the time to read this post and refer to it when you have questions

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    as a bonus, spine-health provides these patient forums. here you can meet thousands of people who understand and can relate to your situation. you will soon become part of the spiney family[/u] who provide comfort and the advantages of a support system. you are now part of this family that is approximately 27,00 international members and growing daily.

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    Liz, 

    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • 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.
    jill55
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    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.
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  • 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.
    Sheila

    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: 13,433
    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 Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    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.
    Sheila

    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: 2,561
    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.
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