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27 year old with chronic back pain. I don't know what to do anymore.

redhat1rredhat1 Posts: 8
edited 06/11/2012 - 8:43 AM in Chronic Pain
This turned out to be about 4x as long as I was hoping for, but I tried to include as much important information as possible...

I'm not sure where to start or what to say. I suppose I should just start at the beginning... My parents were in their mid 40's when they had me. I was always a heavy kid, and when I was in 3rd grade I really started putting on a lot of weight. I was, by far, the heaviest kid in school.. I always seemed to have back pain. I was always hunched over when walking or sitting, I thought, because I carried most of the weight on the front of me. When I was in 8th grade and at my heaviest (200), I decided that I didn't want to spend my life being obese. I began eating normal portions and I started to bike. I biked day after day, eventually dropped 88 pounds and I felt great! My back still ached, but the weight was gone and I felt alive.

Then in August 1997, while out for my morning bike ride, I crashed. At least I think I crashed. My head has never been the same. My parents told me that when I returned from my bike ride (which lasted hours beyond normal), I was repeating the same phrase over and over again. I hit the front right side of my head, the cat-scan showed that I suffered from a 'Concussion and a Cerebral Contusion'. I lost a lot that day... I didn't know any of my friends or family - I couldn't remember who they were. 2 days after the accident when I started high school, I was a wreck. I couldn't read or do simple math at all.. Prior to the accident I had been a straight-A student. My mother would sit down with me every night after school and help me for hours on my homework. On top of everything else that was going on - back pain.

After I hit my head, I was depressed. I couldn't bike anymore, my head was too badly damaged - even walking gave me a headache. I returned to what had always given me comfort before I started to bike - food. I ate. I ate and I ate and I ate. I gained all the weight back, and more. My back pain got worse. It took nearly a year before my head stopped pounding, my skull stopped oozing, and things starting making sense again .. sort of. My memory has been shoddy ever since.

The next thing that happened which, I'm not sure is relevant to my back pain or not, occurred on December 23 of 1999. I had another disastrous accident, this time with some farm equipment. I was helping my father drill a hole for a telephone pole, using the tractor and drill. It was cold, and I happened to be wearing a baggy coat. The drill was caught on some roots in the ground, so I was told to jiggle the arm and help the drill go through the frozen ground. My baggy coat was hanging down a bit too far, the tip of it got caught on the shaft powering the drill and that's all it took. I was instantly sucked in and thrown around the shaft of the drill like a rag doll. It is simply a miracle that I lived. I broke my left arm, and had a lot of damaged skin along the left side of my head, my body, and down my left arm.

After I recovered from that episode, I returned to school and felt even worse about myself. I ate more. When I hit 300 pounds my Junior year in high school, I had another "dear god" moment. My back pain was at an all time high. I had tried tylenol, aspirin, ibuprofen, excedrin. Nothing worked. I was so sick of being fat. I stopped eating and started biking. I lost 115 pounds in a little over 4 months. I looked white as a ghost and I could barely walk. Once I hit the weight I was aiming for (185), I started eating very small portions whilst keeping my exercise level very high. My back still ached.

When I entered into college I finally had my weight under control, but my back still ached. I had memory issues, but I found ways to remember things long enough to take tests. I started 'smoking' to ease the pain. It helped a lot. When I wasn't smoking, I hurt, like I always had. Nobody seemed to have an answer for my pain. None of the meds were working (non-narcotic), I was exercising regularly, I started swimming, running, continued my biking. Nothing was knocking the pain - that I had felt my entire life - down one bit. I went to a physical therapist for a few months. Nothing. Exercise balls, personal trainers. Nothing.

When I graduated from college, I gave up smoking. In my family its very bad if you "smoke the marijuana". After explaining all this (to the best of my ability) to my doctor, he started me out on a low dost of oxycontin. He said that I would be on it until we found the source of my pain. He sent me all over the place. X Rays, cat scans, MRI's, bone scans, I can't even remember all the places I've been! For YEARS it seemed like, I was going to every doctor that this state had to offer .. with no results. Nobody could find anything. One spial specialist told me it appeared that I had a "minor scholiosis" but nothing that should cause the amount of pain I was in. Another doctor told me that my pelvis was shifted slightly forward, and my hamstrings were VERY tight (which they always have been), and that may be causing some pain, but nothing like I was describing. A neruo-something told me that I was faking my pain to get meds. Every doctor had something very different to say. My PCP was still perscribing me a low dose of osycontin, which WAS helping. Then one day during a follow up appointment, which I went to with my father for support, my PCP told me "nothing seems to be showing up no matter what kind of testing we do. I don't feel comfortable writing you a perscription anymore for narcotics. Someone your age shouldn't have this kind of pain. I'm sorry. Have a nice day." I got upset, we left.

I switched PCP's. Then I called a pain clinic, and made an appointment. I went in, with my girlfriend at the time (who worked in an ER), and we told him [above] to the best of our ability. He said that he would have no problem continuing the prescription, and he wanted to try out some new avenues. He did trigger point injections, and radio frequency nerve block (I think it was called). This numbed the area a bit, but I 'knew' the pain was still there. It still hurt to do daily tasks, it just .. didn't bother me as much. This doctor DIAGNOSED me with Rheumatoid Arthritis in my spine, and told me there was no cure - I would just have to manage it for the rest of my life.

I have always had stomach and bowel issues, I have always loved yogurt. August 2007: One morning I wake up with the WORST stomach pain I have ever experienced. I think I have food poisoning or SOMETHING from eating too much blueberry yogurt in a "i wonder what kind of blueberry yogurt tastes the best? I'll try them all" contest. I throw up and pass out more blueberry-yogurt looking stuff than you can imagine over the course of a 24 hour period. Next 2 days I lay in bed lightheaded and weak. Day 3 I try to go back to work, I can barely stand up or walk. Finally my family drags me to my PCP. The nurse takes an H+H. She looks puzzled. She takes another. She calls the doctor, he rushes in. He takes an H+H. Twice. They ask me what happened, again. They tell me my levels are so low I should be in a coma. I am sent to the ICU where they put 4 bags of blood in me, which brings me up to the minimum level of blood or w/e. I stay there under observation for 2 days, then they send me home. More testing and follow up visits show that I have several stomach and intestinal ulcers, and polyps. I eat lots of meat now and take iron tablets when I bleed. I will be on prevacid for the rest of my life.

Last year I was shingling a roof. I told my pain management doctor at the time what I would be doing, how long it would take, and that it would most likely take a serious toll on me. When I came in for the following appointment he did a urine screen. I told him I had needed to take a few extra pills because of the shingling job, he said that was fine. At the NEXT appointment, he sat me down and said "Your urine screen didn't show and oxycontin. I'm discontinuing your treatment here. Have a nice day.".. Another problem. I called my new PCP. He listened to what I had to say and continued my pain management. That's where I have been for over a year now.


I'm not sure how much of the history [above] was necessary.. But I thought maybe some of the things I've been through might be of relevance.

Now that the history is over, here is my problem.

Over the past few couple years, my pain has been getting much worse. I have been taking oxycontin (20mg a day) for something like 6 years now, and it has helped. It has helped enormously. Lately, however, my problems have been escalating. My back pain is much worse. I get cranky when I am in a lot of pain. I feel like an idiot when I go places with family or friends and I can't stand for more than 15 seconds without having to lean on something or lay down somewhere. I can still do pretty much everything that anybody else can do, but it hurts tremendously to do it. I still bike, it hurts. I still play with my neices and nephews, it hurts. I want to have kids someday, but I feel like .. what kind of a father would I be at nearly 30 years old having to sit down all the time because I am "in pain". How much worse am I going to be in 10 years? My back constantly aches. I feel like I'm headed for a wheelchair.

The pills now take the edge off just enough so I can get up out of bed and get going, but not like they used to. Nobody I know understands what this feels like. It's like I'm alone with this, and I cannot describe it to anyone and have them actually KNOW what I am feeling. I like how I used to feel when taking pills - they took the edge off, numbed my back, and I felt like I could function for a day. Now, without pills? Forget it. I can't get out of bed. The pain has got to the point where I CAN'T function without the pills. Is it the addiction side of the pills kicking in? Has my arthritis gotten worse? Do I need to up my dosage of pills? Do I even have arthritis? What is wrong with me? Should I get off the pills? I know I want to. But I'm afraid because I know how terrible it feels without them. Why in gods name am I 27 years old and I do not ever remember having a day without back pain?

Last night I sat down and talked with my mother. I cried in front of her for the first time in probably 10 years. I told her what was happening with me and the pills and the pain. She told me I needed to pursue it. I needed to ask my PCP to send me out of state to a specialist to find out WHAT THE PROBLEM IS. Someplace like boston or new york. "You don't see people flocking here for specialty back care do you? You need to go to boston."

I don't feel like getting out of bed in the morning.
I don't feel like working anymore.
I haven't biked in almost a year.

I know I'm not supposed to drink alcohol, but sometimes at night when I CAN'T sleep, I weigh my options .. how much can I drink, so I can get to sleep, and how much is that going to make me bleed in the morning? How much work am I going to miss for that? Is getting a good nights sleep that important to me? Is the stomach pain from bleeding going to be worth the sleep I'll get from the alcohol?

I know this may sound truly messed up to some people, but this is the point where I'm at. I am in pain. All the time. And I am at my wits end. I know 20mg a day might sound like nothing to many of you, but it does help. I really don't want to 'up' my dose any, because I know it will just keep having to go up .. but if that helps me live my life, is it worth it? I know it will help with the pain, but is that the right answer? Surgery? Arthritis? Scoliosis? Something else? Anybody out there with the same problem?

The pain is worsening, and I don't know what to do. I am living my life from pill bottle to pill bottle. If I didn't have pain pills to take, the pain just gets to me so bad that I don't feel like doing anything. I have gone off them for weeks at a time, and it just... hurts... I don't go through any withdrawal symptoms, I just hurt. Like I always have hurt... and it feels like I always will. I have an appointment with my doctor in 2 weeks to discuss my pain situation. Do I explain all this to him and sound like a pill popping psychopath? I know I don't have a pill problem. I have a pain problem. I can live without them, it just sucks.


Things that work to help the pain:
Having my back cracked (5-30 minutes of minor relief)
Deep tissue massage (10min-3 hours of relief, depending on the day)
Regular exercise


And lastly, to describe the pain..
Most days, it is an 8 on the ever so famous pain scale. I remember thinking my back hurt worse than the ulcers, the day I was bleeding.

It's hard to describe what it feels like. It feels like the pain is a full unopened bag of potato chips, and if somebody just would step on the bag and crush all the chips - it would feel better.

I guess the best way to describe it is, if you have ever shut your hand in a car door. How your hand feels the next day, it's just feels like crunched bones (like frosted flakes inside your hand when you move it aches and grinds), and it throbs.

And sometimes, but not often, I get a sharp shooting pain. If I move just right I will get a VERY sharp pain in my lower back. It feels like, if I moved a little more in that same direction, something was going to break and I would be paralyzed. I also get this sometimes in my neck. If I am doing things with my upper body and shoulders, and I move just right, I get the same exact SHOOTING pain in my neck and it feels almost like my neck has been broken. My head gets hot instantly, and sweats. It only lasts for a few seconds, but afterwards I can feel my heartbeat in my head for several minutes and I usually have to sit down because I lose my vision. This, however, does not happen very often. It is the constant dragging aching grinding pain that I am most effected by.

(One last note, I am currently in pretty good physical shape. I exercise at least twice a week, I'll be doing more when the weather warms up a bit. 5'11", 210 pounds. I look like about 180, but I have very large leg muscles from biking.)

If there is anyone out there with a similar situation, or anyone who can lend any sort of insight into this .. I would love to hear from you. I apologize if any of he above information is fragmented or confusing, I did my best to have it all make sense.


Exercise/Strengthening Tried:
Physical Therapy (3 months, twice I believe)
Workout DVD's (Round of P90, 2 Rounds of P90X, 1/2 round of Insanity)

Doctors Seen:
Pain Management
Physical Therapist

Drugs Taken:
Muscle Relaxers

Physical things of Importance:
Grossly Overweight until adulthood
Bad head injury 1997
Broken arm and trauma to body and back 1999
Stomach and intestinal Ulcers



  • I'm not really sure where to start, but let me first say welcome to the boards. I am also a young spiney (early 20's), so your story really strikes a chord with me.

    First, the main thing that stuck out to me is that *rheumatoid* arthritis does not occur in isolated joints, so I strongly suspect that you have been misdiagnosed. If you had RA, you would likely be experiencing trouble with multiple joints, not just your spine. RA is also typically diagnosed with a blood test. Did they test your blood? Osteoarthritis is a possibility (and they would be able to see bone spurs on X-rays to make that diagnosis).

    Second, you have a very complicated history so I don't think anyone on the boards will be able to even begin to guess at what is going on with your back. I would highly recommend that you make an appointment with a specialist at a reputable hospital (which it sounds like you are thinking about doing?). I have had a lot of luck diagnostically working with a physiatrist, but a spinal orthopedist could also be a good starting point. I think to kind of start with a clean slate with somebody could be a good way to get back on track as far as figuring this out. They need to review your entire history including the GI history and head injury. Most small practice or what I call "shopping center" brand name pain clinics and orthopedic practices only schedule 15 minute patient visits- maybe 30 if you're a new patient. That will not be enough for you. When you call find out how long your new patient evaluation is scheduled for. If you are at a good spine facility, usually you can expect a 45-60 minute initial eval. Sorry, it's hard to "recommend" something when I'm not sure where you're located, but most major cities should have a good spine clinic (be it orthopedic or pain management). I think that is going to be critical for you because you need somebody to look at the big picture in all of this to try to figure it out rather than continuing to treat you symptomatically with pain medicine.

    Back pain can be very tricky to figure out, but the approach they are taking with you (just throwing pills at you) is not good pain management. A good physician will try to find out what is causing your pain before treating it. I think what you ideally need is someone to take charge of your treatment and come up with a workable plan even if they can't necessarily diagnose the problem. From reading your story I feel like you don't really have a doctor in your corner helping you navigate all this. I think if you can find someone to help you bring an end to the things you are doing that aren't working (and to perhaps sort out the misdiagnoses of RA), and start systematically going through diagnostic and therapeutic procedures that can help start bringing some control to your pain it will hopefully turn this around for you.

    A word of caution: you will likely have to wait months to get in as a new patient with a *good* spine doctor, so I'd encourage you to go ahead and start making some calls. It is hard waiting, but it is worth the wait.

    Finally, hang in there. You are not alone in this. Everyone on the boards here is so supportive and understanding, and I believe as you work on getting an accurate diagnosis and pain management plan you will find the advice and support here to be an invaluable part of getting through all of this. Welcome!
  • The first thing I would suggest is that you print out a copy of what you wrote and take it with you to any new specialist you see. It sounds like you have some complicating factors that may be confusing to some diagnosticians.

    Good for you for working so hard to take the weight off and keeping it off. We all know that is a really tough job, particularly when you are in pain.

    You have found a place where people will understand the pain from a back or neck injury/issue, and people who understand what it is like to have friends and family who cannot relate to their pain.

    If you have not done so already, I would suggest finding a fellowship-trained spinal specialist, either an orthopedic spine surgeon or a neurosurgeon who devotes his practice to issues of the back or neck. It might be a good idea to go to a spine clinic at a major university teaching hospital where you would have access to multi-specialty doctors who work cooperatively on spine issues. I would look for a doctor who specializes in spinal reconstruction and scoliosis.

    I can't comment on all your other problems, but when you say you cannot stand for more than about 15 seconds, it sounds very familiar. It may be that you have some instability known as spondylolisthesis, where one vertebra slips over the top of the adjacent one. This can result in the spinal nerve at that level getting "pinched," which causes sciatic type pain. Scoliosis can also cause the same sort of situation.

    Usually when a patient cannot stand for any period of time, he/she often has stenosis. That very well may be among your "problems." You can read up on it here: http://www.spine-health.com/conditions/spinal-stenosis/definitive-guide-lumbar-spinal-stenosis

    Sometimes we have to take a great deal of initiative in getting a problem diagnosed. If the first doctor cannot provide a diagnosis that makes sense to you, then you have to find another, and another until you get some answers.

    You mentioned your mom suggesting you go to Boston or NY for consultation. From that I am gathering you live in the Northeast. You do not necessarily have to go to a major city to find good care...and you are lucky in that there are many excellent spinal clinics in that part of the country.

    I look forward to hearing from you as you progress on this journey. Try not to be discouraged. You've been through a lot already, but that shows you have perseverance. I think if you keep looking, you will find some answers.

  • I'm actually kind of welling up right now just to know that there are people out there who actually care and know what this feels like. This truly means the world to me....

    Lala329, no he did not take a blood sample. I remember him saying that he knew I had that kind of arthritis because the 'radio frequency worked to help the pain'. That meant that for 100% certainty there was arthritis in the spine. Is that accurate? When you hear an elderly person describe what really bad arthritis feels like, that is what my pain resembles .. Constant kind of, grinding crunching "Aching". But I don't know if that is the problem =/

    Gwennie I am located in Maine. The first thing that comes to mind for me is Boston, but I don't have a clue where to start. I doubt that there is anything in Maine, but Boston is well within driving distance. To be honest, California is well within driving distance if it means the pain will go away. I don't care what I have to do or where I have to go .. I just want it to stop.

    Thank you for your help
  • Hi again redhat,

    I am not a doctor, but I do not believe that radio frequency ablation is ever diagnostic for arthritis. Also, it would really be looking at osteoarthritis rather than rheumatoid arthritis. People with osteoarthritis do tend to have bone spurs on the facet joints that can be painful, so radiofrequency ablative procedures certainly help people with osteoarthritis. But, there are other conditions that also respond well to RF procedures.

    I believe that your positive response to the RF procedure indicates that at least part of your pain is coming from the facet joints (or perhaps a spinal ligament because RF ablation also destroys the nerve that feeds some of the spinal ligaments). It is certainly possible that there is some osteoarthritis affecting your facet joints, but not definitive. The symptoms of kind of crunching and grinding do sound like osteoarthritis. I'd ask if they can see any arthritis on your X-rays. I would also guess that while that may be a contributing factor there is more going on than just a facet joint problem. But, it's a good piece of info to have :)
  • Do any of you lovely folks know of a good place in the northeast to go, where I might possibly get the best help? I don't mind waiting, and I don't mind traveling. I am located in Maine.
  • Hello and welcome to the board.
    I think the previous posters have offered some good advice. I just wanted to say that despite all you have been through, you are to be commended for not giving up the fight. Things can and will get better if you continue to believe they will.

    It is clear you know the way you are currently managing your pain is not the best approach (mixing alcohol and tylenol based products) and it takes a strong person to admit what they are doing despite knowing it is not good. It is clear you are in pain.

    I am in the northeast. There are people on here that can Private Message you some suggestions on places to start.

    It seems you are probably not near a major city in Main so Massachusetts, CT, or NY may be a good starting point to get some help. You don't have to use a major city but if you are in the remote part of Maine, it may be worth the travel to get closer to a city.

    Keep asking questions and I'm sure folks here can help guide you to the right help that you are looking for.

    Many of us here understand chronic pain. We are all here to support eachother.

  • What a journey! I live in NY on Long Island and I went to Dr. Rafael Davis he is out of Stony Brook Hospital and ranked top 10 Neuro Surgeon.
  • I applaud you in not giving up after all these years. Like you I have stomach problems and pretty bad back pain as well. Like you I'm pretty young at 31. A good start and I mean this in a supportive way and please correct me if I am wrong in my deduction, drugs and alcohol do not mix for us on pain meds and with stomach problems it may help in the short term but the long term effects will hurt you more I've seen them. The others were right do some research and if need be find that doc who is the best in their field and wait to see them. Remember take it one day at a time tomorrow can worry about itself. I hope the best for you. Please keep us updated on your progress.
    Live one day at a time and do it with no regrets. I hold my head up high with pride to the fact that i wont let my injury beat me.
    Lumbar surgery 2009
    Cervical fusion C4 to C7 2009
    Neurostimulator 2010
    Heart ablation 2011
    Lumbar fusion L4 to S1 2012 and now L1 2 3 and 4 are split and bulging.
  • Osteochondrosis

    I went to an Osteopathic surgeon, who looked at all my old MRI's and said my problem was osteochondrosis of the ... (vertebral endplates? I don't remember exactly - paperwork is down at my parents house). Basically he showed me my MRI, and said that this particular disease causes the blood flow in the pads (between the vertebrae in my back) to stop flowing. i.e. the cushions no longer do their job - causing pain. He said this disease is very common, 80% of people have it in 1-2 places ... but my back has it between every single vertebrae, except 2... 2 of the pads are working properly, the rest are not.

    The one spot i have between my shoulder blades (that rarely hurts) is where the MRI showed 2 pads in white, lit up like they are supposed to be. Every other pad in my back, from the top of my neck down to the lower spine was pitch black - every place I experience pain.

    Does this sound right? Can this really be my problem? After all these years, finally, an answer?! Im not finding a ton of information out there regarding treatment options, if this truly is what has caused my pain for all these years..

  • Hi, I'm so sorry to hear that. I read your story and you are a true battler, I have a lot of respect for u. I'm 29 years old and recovering from an op for back pain.

    First thing I'd do is get a second opinion just to rule anything else out.

    I'm sorry to hear the diagnosis. If every disc in your back is degenerated to osteochondrosis there's not a whole hell of a lot they can do afaik.

    I dunno what you're doing for pain management atm but I'd chase up a proper clinic and get a program going. Along with the usual pacing techniques and medication, u might find facet nerve ablation, even a spine stim something to consider.

    I don't post here much but there are a few forums around if you want a bit of support.

    Best wishes to ya,
  • Thanks for your feedback chris. I'm really hoping this isn't the answer because, like you said, as far as I can tell there isn't much they can do about it .. but on the other hand I'm sort of glad that I finally 'have' an answer. I can't tell you how discouraging my journey has been .. so many doctors telling me I'm making up the pain or 'just looking for drugs'.. I'd love it if I never had to take a single pill again as long as I live!

    As far as pain management .. I began having problems with the Oxycontin I was taking... I talked with my doctor, and I'm on methadone for the time being. It doesn't work as well for the pain, but it lasts all day. My doctor has been great. If the methadone doesn't end up working out for me, he said we will work at it until we find something that does.. he's one of the few doctors that I've come across who cares and is actually working with me.
  • Hey there...like I said in my PM, I'm not strong reader (I get tired easily and have to re-read things twice)...well, I finally did and realize your udpate was lower down.

    The disease they are mentioning is Osgood Schlatter's disease. I have to do more research but my sister had it in her knees. Apparently it's when joints are growing too fast for the body and is VERY painful. My understanding is that most kids grow out of it once their body's catch up to the joint/bone growth.

    What's encouraging is that you have doctors that are looking beyond the typical adult back issues and looking at all issues including joint and childhood diseases.

    Let me poke around on the internet to see if I can find anything. I think it is at least one possible answer.

    Thanks for coming back to post...
  • Ok, quick search and found this link for Osteochondrosis of the spine (also known as Scheurmanns Disease). Maybe you already found this but I never realized this can happen to the back


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