Discussions By Condition: I cannot get a diagnosis.

A decade of chronic low back pain

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: Vancelot
  • May 15, 2009
  • 00:20 PM

Warning: This is a large post because I've had this terrible problem for so long without any good help.

Hello everyone,

My name is Vance. I am 24 years old and I have been suffering from chronic low back pain for almost a decade now. I have seen several doctors and undergone many tests and even a spine fusion surgery, yet I am no better off than I was before and my pain has progressed to the point where I have been unable to work even part time for years. I played football my freshman year of high school, I had a part time job, and I was in the school's AFJROTC program. I was busy, I had lots of friends and I had a girlfriend. I didn't think it was great then, but now I see how good I had it.

Potential Causes:
I also suffer from depression and ADHD, so I am very forgetful. I do not remember exactly when I began to feel this back pain, nor do I know what might have caused it. As I said, I played football in high school, so I did a lot of physical activity and I did a lot of heavy weight lifting. I am asian american and medium build, and I was one of the younger freshmen in my class, so I was not very big, yet I was lifting as much or more than the juniors or seniors on deadlifts or squats. Perhaps something involving weight lifting (either the lifting itself, or the sudden stop of lifting after quitting after I started 10th grade).

Sometime between 8th grade and 10th grade, I fell off a friend's trampoline with my chest hitting the ground and one of my legs getting caught on the rail, hyperextending my spine. I remember this being extremely painful, but only for that day. I do not recall if this continued to be painful the next day or so, or even when this might have happened. So I don't know if this is the cause of my back pain. I assume it is because it's the only big traumatic event I can recall that involves my spine.

In 2007, I had a spinal fusion surgery performed because my L4-L5 disc was gone. I suppose it ruptured when I fell off the trampoline and 5-7 years of not tending to it caused it to completely leak out. Since this was the only visible problem on my spine, the surgeon and I had high hopes the surgery would cure my pain. It did not. It didn't even improve my pain levels. This leads me to believe that the fall wasn't the primary cause for my pain, or if it was, the ruptured disc wasn't causing me any pain.

I have been to more doctors than I can remember. I have seen several general/family physicians, physician's assistants, a chiropractor (what a quack he was), two orthopedic surgeons, two neurosurgeons, one neurologist, two pain management/anesthesiologists, two physical therapists, and several psychiatrists. I still do not have a diagnosis nor do I have any idea as to what kind of treatment would be beneficial for me, or might have a chance of helping.

Treatment attempts
I have tried several non-opiate pain medications, both over the counter and prescription, and they were all worthless.

I have been to a couple physical therapists, one would physically manipulate me and both of them gave me exercise routines to increase strenght and flexibility of my spine and the back/ab muscles. While I admit I have not really stuck it out with these programs, I did not notice any improvement after doing the exercises for some time. It was very discouraging, and my back would hurt even more afterwards, which discouraged me from doing them at all..

I have tried a TENS unit and heat/cold. I have tried accupressure techniques (not acupuncture, not covered by insurance) and I have had dozens of nerve block and epidural injections. I have even tried a radiofrequency neurotomy, with strange results. It hurt like heck for a week, then took away a lot of my pain for about 2 weeks, then stopped working..

I have tried several antidepressants to treat both my depression and social anxieties but nothing (except Zoloft which I have only been tkaing for a couple months) has helped with my depression OR my back pain.

I am now taking opiate painkillers but I know that they can cause as much trouble as they fix. I want to stop using them but they are the ONLY thing that consistently takes the pain away. I am not psychologically addicted to them. On the few days a treatment test has taken the pain away, I felt no need to take them and didn't take them.

I have tried several muscle relaxers such as skelaxin, but they didn't help with the pain at all. This leads me to believe that the cause of my pain is not muscle spasms because the muscle relaxers should have reduced that. However, one strange situation involved Amrix. I was given some samples to try and when I took the first dose at night and woke up the next morning, I had NO BACK PAIN! It was incredible and I thought I had found the holy grail. Unfortunately, the second day I took it, it only took away like 80% of the pain, and on the third day and every day thereafter, it didn't help at all. No one can explain why this might happen, and as far as I know Amrix is just an extended release form of a different muscle relaxant that I had already taken with no positive effects...

My dad bought me a reclining table so I can hang upside down and do traction therapy by myself but it has not helped me at all..

I have had dozens of nerve block injections but the few that did help me only helped for a day or two. Since my pain is very vague and generalized, they have to guess where to poke me. It's not a very effective way to do it, let me tell you..

I have had dozens of x-rays taken, I had many CT-scans done before and after my spine surgery, and I have had 7 MRIs. The only abnormality was the damaged L4-L5 disc, except that one of the orthopedic surgeons suggested I might have Bertolotti's Syndrome. I do have a fused sacrum on my left side, but I do not seem to exhibit the typical Bertolotti's Syndrome symptoms (reduction of articulation, one-sided pain, etc) so I am doubtful. This surgeon recommends surgery to remove the fused sacrum bone, and I may go through with it anyway in the off chance it will help.
I have had a bone scan done and the report said nothing looked too unusual, though I think I may request a copy of the scan and report to get a second opinion..

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3 Replies:

  • I had to make a second post because I couldn't fit all of this into the first post..SymptomsHere's what's really important, right?Ever since this started, my main symptom has been low back pain. Pain that feels like a really bad back ache, the kind you get from working in your garden all afternoon, or from helping your friend move by lifting and carrying heavy furniture for hours. But this back ache is always there, 24 hours a day, every day.The back pain does not feel neurologic. I recognize neurologic pain because I occasionally have that as well, and I experienced a lot of nerve pain during my many nerve blocks and the radiofrequency procedures. So I guess the pain must be being caused by muscles or ligaments or something else.My back pain is also progressive. It has gotten worse and worse over the years even though my activity levels have decreased and decreased. I am not a sloth, I do regularly walk and I go to school at least three days a week, but I can't do much exercise.The pain is not necessarily caused by articulation; I can bend forward and backward without triggering sharp pain, for example. It's not like a switch that is flipped on or off; it is more like a gas stove that is always on, but as the day goes by it slowly turns itself up. Certain positions, such as sitting without back support, or bending forward and holding that position, increases the rate at which the pain rises a lot. I may become so uncomfortable from sitting in a bad chair (which is 99% of them for me) that I have to stand up after only a few minutes to release the pain and pressure.The pain is in the center of my back, it does not favor one side. Pain does not travel down my legs. (It used to, but during my spine surgery the doctor recognized I had a pinched nerve and fixed it. But it only took away the 'sciatica' pain, not the low back ache pain.) The pain seems to be localized to the lumbar region and it is very general. It is not a sharp, pin-point pain that I can point to. The pain feels like it's an area the size of my hand.If I wear a back brace or a stomach wrap, it helps with the pain. It doesn't take it away, but it allows me to sit for longer, which is how I get through school. So applying pressure to my lower back does help improve the pain temporarily. Also, lying down on a comfortable surface (not too soft, not too hard) relieves the pain. Lying down in bed is the ONLY comfortable position in my universe. Standing straight up can be tolerable for longer than sitting, but after 30-45 minutes I feel the need to sit or lie down, and that's if I never have to bend down. If I need to bend, I will need to rest sooner.Occasionally, when I feel the need to defacate, I will feel some nerve pain in the same area as my back ache and it will be extremely painful. It also does not travel down my leg. I am taking Anatomy/Physiology classes so I have been trying to do research on nerves for the rectum/colon or sacrum and lumbar region that might explain where that pain might be coming from but I have been unsuccessful.Occasionally, I will have muscle spasms in the area just above the lumbar vertebrae on the spine. They occur perhaps 1-3 inches above the general back ache I experience but they do not happen often. I assume that when I fell from the trampoline I may have damaged a nerve or something, but so far no doctor has been able to tell.The following symptoms are not directly linked to my back pain, they are other symptoms in case any of you recognize these from a medical condition or whatever.I am a shy, serious person, and my shouldar/neck muscles are always very tense. I have tried relaxing, using heat to relax them, stretching my neck, but they always remain very tense. I presume this could have some impact on my back pain, but I do not know to what degree.I have always had strange problems with defacation. I occasionally suffered from constipation and the feeling of nature calling (the urge to use the toilet) would come on very strongly and suddenly. I did not have problems with control or anything. I would also often have blood in my stool, but I assume this is caused by tearing of skin or something because it is not always there.I have suffered from depression for almost as long as my back pain began. I cannot remember which occured first, so I don't know if perhaps my depression caused my back to hurt, or vice versa. However, I have taken several antidepressants over the years and they did not help either my depression/social anxiety OR my back pain. Right now I am taking Zoloft and it does help with my depression and anxiety but NOT with the back pain, so I do not think there is a causal relationship there.I do remember one strange occurance that happened before my back pain started. I was sitting in a reclined computer chair in my bedroom watching TV with my legs up on my bed and crossed, left foot over right foot. All of a sudden, my left leg shot up and pushed my knee into my chest; the leg went from fully extended and resting to completely flexed in the blink of an eye. I have no idea what might have caused this to happen and it has never happened since, but for many years I believed this was linked to my back pain. Yet, no doctors can explain what it was or what it might mean.I can't stand the taste of alcohol or the smell of gasoline or some markers. I had heard this was a rare symptom of men with fibromyalgia, so I thought I'd list it here even though I do not believe I have fibromyalgia. I don't have sensitive points and my pain is localized to just my lower back.I have a terribly difficult time trying to sleep. For as long as I can remember, 15+ years ago, it has taken me at least an hour, usually 90-180 minutes, to fall asleep each night. That is not an exaggeration. I have not undergone a sleep study yet (though I may consider doing it) but I am not kept awake by back pain. I assumed it was caused by my depression/anxiety but the Zoloft hasn't helped with that at all, so I am not sure.During middle school, I had this strange problem with strange sensations over my shoulders and upper back. There seemed to be something that looked like acne or other skin oddities across the shouldars and almost daily I would feel strange tingling, stinging sensations that went in waves all over the upper back and shouldars. I saw a dermotologist and he gave me some cream (no diagnosis) that didn't help much if I remember right, but eventually the problem mostly went away. I still occasionally feel the sensations but it's rare and doesn't affect my life like it used to.I can't think of anything else at the moment...I am sorry this is so long, and if you've read all of this, you deserve a medal. I am just so desperate to find a diagnosis and treatment for my back pain. I am virtually bed-ridden because in order to do anything, from going to school or going shopping to doing the laundry, I have to make sure I have taken my pain medication and how long it will last and whether I need to use my back pain/stomach wrap to get through the activity. I can't go out for very long before I need to lie down and rest. I am unable to work even part time jobs because no one wants to hire an employee for 3-4 hours a day, especially one with no job experience (my back pain started when I was around 15 or 16) and working longer is out of the question.I have stumped every doctor I've seen and none of them bother to go the extra mile to help me. They won't refer me to any super specialist they read about in a magazine or something, they don't help research things for me or anything. I'm basically doing all fo the work and I am at the end of my rope. I have researched dozens of chronic pain syndromes and disorders and NONE of them match up with my symptoms, except for one, Spinal Ligament Syndrome. However, I guess this is a rare or newly discovered disorder because I can find NO good information on it and the meek information provided on that page is useless. The suggested treatment is unscientific and unproven snake oil.If any of you know of any super specialists anywhere in the US that deal with cases like mine, I would really appreciate if you could share the name/contact info. I need to get in contact with a doctor who will take me and my symptoms seriously, a doctor who will give me extra attention. I think I deserve it, if only for the fact that I will be losing my health insurance at the end of this year and social security has already denied me disability insurance.. If you guys have ANY helpful information you can offer, I'd love that..My name is Vance and I live in Florida. I'm a US citizen by birth (father is American, retired Air Force) and I need your help....
    Vancelot 1 Replies Flag this Response
  • Do you have any other symptoms, such as numbness, tingling, or radiating pain - especially down your legs? Do you have a hard/weird/different/abnormal time doing basic bodily functions (using the bathroom, etc.)? Do you feel nauseous ever?
    misskr 17 Replies Flag this Response
  • You seem to have a lot of tension. Back pain can be caused by an imbalance in the muscles that have to support your posture. You should try doing something like yoga that will strengthen and stretch your muscles. In the meantime, try these exercises:Low Back Exercise - Standing Forward BendCat Pose YogaEric
    Anonymous 42,789 Replies Flag this Response
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