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3 1/2 years with severe, chronic lumbar back pain & no diagnosis

CoyoteCCoyote Posts: 120
edited 06/11/2012 - 8:49 AM in Chronic Pain
Hi - as the Subject line says - I have had chronic lumbar back pain - such that I have to severely limit my activity to 4 hrs of light activity a day; cannot work, cannot go out shopping/socialize, cannot take public transport, cannot clean my house, cannot cook - lots of things I can't do any longer.

I believe I have discogenic pain - I have DDD, a bulge and a tear at l4/l5 - it was a herniation up until 1 1/2 years ago, when the MRI shows the herniation has "resolved" (sucked up, eaten up, dried up? I don't know). My pain is all primarily in my lower back. I take oxy ER and lyrica to keep the pain at baseline, and if I exceed my 4 hour limit of activity a day, I take percocet for breakthrough pain.

I hurt my back on a very rough, rickety, fast old roller coaster. Since then, I have taken all kinds of meds - had Steroid injections in the facets, ESI's and Sacro illiac joint - all with some minor, temporary relief - but not attacking the real problem - AXIAL BACK PAIN. There is no numbness, tingling or loss of motor function - IT'S ALL PAIN, AND IT'S ALL BACK. Also, if I ignore the "4 hours of light activity" rule for a couple of days (by taking lots of breakthrough meds) - I HAVE ACUTE EPISODES FROM "HURTING MY BACK AGAIN" - IT FEELS LIKE WHEN I FIRST HURT IT ALL OVER AGAIN - MY BACK "GOES OUT" - AND IT TAKES 2-6 WEEKS TO RECOVER FROM THIS. Even though I'm very careful, I "hurt my back again" about 3 - 4 times a year.

I've been to 4 surgeons, and because I don't fit in the box, they're not really interested (although one of them seems to want to help find a diagnosis). The big problem is, the test for discogenic pain is the "DISCOGRAM" - but my discogram - although it shows the dye running out into the bulge - I HAD NO PAIN AT ALL. I think they gave me too much sedation or did not put enough pressure into my disc - I DON'T KNOW! IT'S ALL A RIDDLE THAT I'VE TRIED DESPERATELY TO SOLVE FOR THE PAST 3 1/2 YEARS.

I am so sick of steroids (now have a puffy round red face); medications, needles, MRI's, physical exams, stupid happy faces on pain scales, needles needles needles.



Any advice, kindness, any ideas, ANYONE OUT THERE WHO HAS SIMILAR PROBLEMS WHO CAN JUST SAY HI - Anything would be much appreciated.


  • I was told "there is nothing wrong with you, that we can see on the Xrays" for 25 years. Even though I was in ER about 3 times per year, and they determined that this was not in my head, at ER, but by the time I showed up at someone else's place, I was "healed".

    Yes - I have heard it too. I road the $1.5 million CTscan about 4 years ago, and then had a Dr apologized for 2 hours.

    I am still in pain, but we do control it better now.

    Know that your not alone! Take Care - David
  • Thanks, David. I know a lot of people have trouble getting a true diagnosis of their pain, even when there is clear pathology. But I'm just going so crazy over this back pain - and that's exactly what happens to me - I can't make it to the Dr's when I'm in agony - I don't want to be caught out on the street alone with my back out - I've done that a few times too many already, not by choice.

    So - they see me walk in all strong (and medicated - and clean - it's when I take my weekly shower!)- and don't realise if I did a load or two of laundry I'm done for the day - just putting clothes into a machine and then a dryer cripples me.

    But thanks for reminding me I'm not alone. Although that is depressing as well - all us poor suffering people - driven crazy by undiagnosed pain.
  • I know your frustration. I'm 21 and have had low back pain for 6 years. My MRI and everything are all "clean." None of the injections have helped at all. I've been passed around from doctor to doctor and have been told that I'm faking it and need psychological help.

    You know the most obnoxious thing though? When I tell doctors I wish something would just show up on my tests and they say "Why would you want that? You're so lucky! You're back looks perfect!"

    Ugh. So I know what you're going through. It's so frustrating, it sometimes feels like you're at a dead end and there is nothing more annoying then people telling you that you're "lucky."

    I don't really have advice, just to say you aren't alone.

    Have a good holiday!

  • Hey Coyote, I teared up whenever I read your post. I know how frustrating it is to go through the motions.
    I think these same thoughts as I get ready for my Dr appts., and I wonder if my Dr realizes how much I sacrifice to look good that day. I prepare in advance, shave the night before, get all of my clothes ready, get up *hours* before my scheduled appt so that I will look decent, take more medicine than usual incase he decides on a procedure that I am unaware of, take deep breaths and meditate hoping and praying that I remember everything and that he *hears* me..only to wait in the waiting room, then see the Dr for maybe 10 minutes - if I'm lucky.

    Sometimes I get so tired of feeling that I'm not being taken seriously enough that I just want to scream, and I have been going through this for over 25 years. I quit going to Drs for awhile (yrs), but then you know, that is where the help is, and I can't do it myself.

    One night, feeling very frustrated and helpless, I sat down and put all of my worst thoughts on paper. It was very difficult for me as I have a hard time expressing the true nature of my pain and how it affects my life. I tried to read the letter a couple of hours later as objectively as possible, but it was hard. I mentioned in the letter that there are times that I contemplate cutting off my own foot, and whenever I read that part of the letter I tried to think how someone else might think of that. I doubt very much if anyone could take that seriously, but I wrote that letter to myself in all honesty.
    Whenever a person has pain, any type of pain, it is human nature to feel the need to have that pain validated by a person who is more knowledgeable about the situation than we are.

    I have a Dr. appt. tom. afternoon and I have most everything ready..again.
  • what about getting a new dr and a new discogram. if dr does not read it to your satisfaction, then you need to get a new one and new tests. have you had other tests besids discogram, like mri, nerve tests? get as many test as you can and go from there.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • Hi Jessy - Oh gosh you sound so sweet - I hurt my back first when I was your age - but it was never really a problem - went out a few days every few years, and then I was back on my pony - and I did everything I wanted to. I was 42 when I hurt by back on the roller-coaster. Merry Christmas/Happy Holidays to you too. Keep looking after yourself, and DO BE CAREFUL before you let a knife near your young back. I DO LIKE pretty well all the Dr's I've met (a couple of exceptions) - they all seem to be doing their best. But I think the way a lot of them deal with the complexity of the back and the complexity of all the different people they see, is by getting very narrow about their procedures - IT SURE AIN'T LIKE "HOUSE" WHERE THEY'RE DESPERATE TO FIND OUT WHAT'S WRONG WITH YOU - You either fit in their box, or you don't, and when you don't, IT'S BACK TO PAIN MANAGEMENT. UGH! DRUGS!

    Robin - You sound about as crazy with all this stuff as me. When you said the thing about writing the letter and saying you wanted to cut your foot off - it reminds me of when I'm at the Dr's and I say "If someone said they could shoot a bullet in my back and it would help the pain, I would do it". But people don't understand unless they've experienced it. I worked with people with disabilities for 20 years, and only now, that I have become disabled, do I truly understand what it's all about. You just keep looking after yourself too - BUT COME BACK HERE TO SPINEHEALTH FIRST, BEFORE YOU MAKE ANY DECISIONS ABOUT CUTTING THAT DARN FOOT OFF! It's so sad, it's making me laugh right now! I'm thinking of you in your kitchen trying to saw your foot off with a kitchen knife, and me with a shot-gun trying to shoot myself in the back - ha-ha! You have a happy holiday too, Robin.

    I want to say to all the people at Spine-Health, especially the long-suffering chronic painers - Please don't worry about what or who you used to be or what you could do for the holidays - Just see people when you can, love them, be happy for the moments of love and happiness we have - That's what counts - not whether we can cook the meals like we used to, or decorate the tree, or go out dancing and partying. Our families and friends may have liked these things, but it's really just us they love - they'll get by without our decorations and Xmas cookies. People are just glad to see us - even though they don't understand our pain. TAKE CARE OF YOUR PAIN NEEDS, and just HAVE HAPPY HOLIDAYS AS BEST YOU CAN.
  • I've had 4 MRI's - which show a bulge and a tear at l4/l5. I did have a herniation, but it "resolved". I had an EMG - I have some mild symptoms. I don't want to have another discogram, because of the risks. But you are right - I am looking for another test to better diagnose the problem - I was thinking of either getting an MRI when I've hurt my back, or trying to get a standing/sitting MRI - though they seem pretty few and far between.
    Thanks for the suggestions
  • I think that this is the most frustrating kind of post to read as a fellow spiney, and unfortunately we read them much too often. It's been said on here many times that a spiney is the only one who jumps for joy (figuratively speaking, of course) when they "get" to have surgery. That's because it means we have a diagnosis and plan of action. The alternative can be devistating.

    I have no help for you, but I also hear the despiration in your post and since you asked for even just a "Hi", I thought I'd post to let you know that I've been reading your situation and am thinking about you.

    I've been one of the lucky ones that have gotten a diagnosis almost immediately after my MRI was read by my surgeon, but not so lucky to have had two spine surgeries. But at least he knew what was wrong, not how bad it was until they got in there, but he knew what had to be done.

    My thoughts and prayers are with you during this time and I hope that the new year brings new help - diagnosis and finally treatment. I loved your attitude in the last paragraph of your #5 post and it's a good sentiment. For you to be able to post that among the many problems your facing tells me that you're a very strong woman and I admire that. You fit right in here with all the other strong spineys that get by, even if it's just day by day.

    Take care and I hope you have a good holiday. When a new year comes it always give me new hope and a renewed spirit, and I hope it does with you as well.

  • Thanks so much for your kind words, Cathie. You seem like such a sweet and gentle woman to me! And very strong too. The New Year does bring hope. My husband is very sick as well, so I have really learned to live day-by-day and learned to appreciate - I don't know - just everything I have been given. I really work on not letting the little things get me down. I try to roll over the disappointments as quickly as possible - why be unhappy/upset because - you know - dinner was burnt again (simple as it was!); or so and so didn't call, or whatever. Whenever I'm annoyed with my husband because he didn't listen to me, or said the wrong thing, I just remember how lucky I am to have him with me.

    And like you said - Spine-Health is really a special place - I've been around for about 1 1/2 years - I was feeling like - "I don't really belong" because of my unclear diagnosis, I haven't had surgery and no Dr has seen me in any way as an urgent case. But I'm in chronic pain, like so many others, so regardless of the cause, I've realised we all have a bonding here. And no one can understand like another spiney!

    Happy New Year! I hope you get lots of goodies in 2011 (and you're starting off the year so great - with your niece!).
  • I loved your paragraph in post #5 too, it was just so nice.. and put everything so neatly in it's proper perspective, but wow did I laugh a little further up.....lmao. What a vivid image! Well, I made it through my Dr appt. today, and he was really nice. Just thought I'd let you know..... :))(

    I really REALLY pray that you get a Dx soon.
  • Me too, Robin. I'm glad your Dr was nice today - I have a PM Dr who is the ONLY one that ever listens and helps me - so I hope your Dr helps you, or at least listens.

    Re: the gruesome image on #5 - guess that's my macabre sense of humor - I kind of wanted to take it back after I'd written it, because - well - others may not "get it". It is kind of funny though - so I'm glad YOU got it. Take care.
  • C. you might want to look into Prolotherapy because your problem is similar to mine and Prolo has helped me. Lamestream (mainstream) doctors often overlook ligament laxity which causes a hypermobile SI joint which then produces pain. Prolo can strengthen ligaments and eliminate pain. It worked for me.
    You can search on "Prolotherapy Lecture" at youtube for some info. If you need more info then PM me.
    Good luck
  • I know what you mean I used to have a L5-S1 herniated disc and annular tear with disc material in contact with the exiting nerve so I had an excuse for the sciatica to my leg and foot. Now my second MRI showed DDD throughout my lumbar spine and no mention of a HD but still have the same pain and sciatica and the PM Dr told me there must be nerve irritation with the sciatica.

    Also my second MRI they didn't do weighted exam and I had my legs on a pillow on the second MRI so wonder if that could have something to do with it? The only thing that says I have nerve compression on the EMG at L4-L5 which other than not being able to walk far or stand I was able to get Government disability. I'm going for a repeat EMG Jan. 12 so will see how the nerve is doing or if it's worse then my Dr. will do another MRI. After seeing 3 surgeons there's nothing that can be done for me so far.

    So I'm out here too and you're not alone and the others who posted as well who are in the same situation. I hope they come up with more sensitive tests that can pinpoint the pain generator.

    Merry Christmas and Happy holidays and I'm thinking of you and saying a prayer. Take care. Charry
    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
  • Thanks, Charry. I have been reading a lot of interesting things lately - mostly that the back architecture is very complex (well - we knew that!). But one thing that I read is that it is not just physical structures (e.g. like herniations) pressing on the nerves that cause nerve pain, but also chemicals, such as from the nucleus, that can cause the nerves to get going as well.

    Also - with regards to "resolution" of herniations, it doesn't necessarily resolve the problems, especially if you had the herniation for a while - even if it dries up, or whatever, the symptoms can persist. I was surprised that "resolutions" occur more often than people realise - sometimes quick, sometimes slow. Mine took somewhere between one year and two years to resolve.

    I just really feel that this tear is causing the problems for me - and descriptions of the building of pain when you have DDD - they just sound like me - the pain that's killing me is the pain that builds up whenever I do any activities.

    But you're right about the need for sensitive tests - DDD just looks like a dark blur to me on an MRI. I guess I'll see the one orthopedic surgeons who seemed interested in helping me, and see if I can get a positional MRI somewhere, as some people seem to have had some success with that.

    Merry Christmas to you too, Charry - all the best for the New Year and with your back battles.
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