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1 year, no diagnoses

kalaniwavokkalaniwavo Posts: 4
edited 06/11/2012 - 8:50 AM in Lower Back Pain
My story can be very long winded and I've been hurried out of many doctor offices to know this, but the fact is, it has been a year of life-altering back pain and I still don't have a diagnosis...

I understand back pain can be extremely difficult to diagnose correctly. I've jumped thru the hoops, had every diagnostic test available, and been as proactive as possible in obtaining a diagnosis. I just wanted to see what you guys think. I feel like I'm coming to the end of the road (the point where many doctors give up searching for answers/solutions and just start managing the pain) Any suggestions, comments, similar stories would be greatly appreciated.

My history, I'm a 30 year old, military aviator in excellent shape. I did 5K's, swam a thousand meters a couple times a week, played sports, ate healthy etc. Then one day, out of the blue, I began having severe stabbing pain in my lower spine and excruciating lumbar spasms to the point where I could not walk. The pain was as bad as it gets. I spent many days lying flat on my back on the floor loaded on nsaids, muscle relaxers, or narcotics, all of which did nothing to relieve the extreme pain.

First 6 months-
These extreme episodes would come and go without warning and for no apparent reason over the next 6 months. Typically my pelvis would be offset to one side and my back would be crooked. The pain was very acute, sharp and stabbing with associated muscle spasms. During this time I went to 3months of physical therapy and chiropractic care. I had a lumbar MRI, CT scan, bone scan, and full lab work-up completed. All of which were normal (no indication of ANYTHING wrong with my back AT ALL) Everyone was baffled... I tried heat/cold packs, acupuncture, massage, everything you can imagine. The only thing that worked was a 60mg, 40mg, 20mg, round of prednisone for 3 weeks. I did this twice and the pain went away completely.

Last 6 months-
The last 6 months have been better and worse. My severe episodes of stabbing pain have all but stopped but the pain has become a dull, stiff, aching pain in my spine and all throughout my pelvis. I've also developed pain and tenderness in my ribs and sternum. I'm very stiff and achy in the mornings and my back and joints sound like a train wreck when they're cold. I have constant pain throughout the day (worst when sitting) and unbelievably I'm able to run 2-3 miles a day and this is when my back feels the best! Heat now helps alleviate some pain and "warm up' my back and NSAIDS don't do much but I think they take the edge off sometimes.

I've had another MRI of the pelvis, CT and bone scan. This MRI and CT scan now show severe degeneration of the sacrum, inflammation and swelling of the SI joints and arthritic changes. The bone scan also indicated active osteoarthritis of the SI joint and arthritis of the sternum (explains the chest pain)

I've also been recently diagnosed with gout of my big toe and restless leg syndrome just in my right leg. The past 2 months I've been having increasing restless leg episodes at about 4-5 nights a week.

As this drags on I get closer to accepting the fact that my life may never be the same again and my career as a military aviator may be over. I'm just having a hard time understanding why at the age of 29 I would have acute onset, extreme debilitating pain and its been AN ENTIRE YEAR and I haven't received a diagnosis. I feel like my body is falling apart on me and I have no control... If I just had a diagnosis I could move forward with my life, move on, set new goals, etc...

Like I said in the begining any advice, comments, whatever will be greatly appreciated. I know many of you with undiagnosed back pain have been here before and I sympathyze with all of you. I'm determined to find the positive in my situation and keep my PMA (positive mental attitude) and again... if you made it this far, thanks for reading!


I also have a referral with a second rhuematologist next month and am looking forward to hearing what they have to say.


  • I am so sorry for your unexplained pain Nick! I wish you all the best in finding a solution. I was going to say maybe it is stenosis but the test you had would have shown something going on. Could be tissue and or muscle damage. Keep us posted on how your doing. All my best to you.
  • wow! Not in a good wow either :(

    I would be so very very frustrated at this point if I were you - the unknown when our lives are changing is very upsetting.

    Please keep us posted what info you find out & how you are doing :)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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  • Well - welcome to Spine-Health! Nobody really wants to belong to a "Chronic Pain Club", but so many are so glad to have found and become part of this Forum. I am 3 1/2 years out with severe chronic pain that prevents me from working, and severely limits every other area of my life - and like you, I have no definitive diagnosis.

    I've seen so many Dr's eyes glaze over as I try to tell them my story - ha-ha! But I think Dr's know how to treat certain things, in certain ways - and they have a strict criteria you have to reach to be eligible for treatment (or for treatment to be successful). You either fit their criteria, or you don't. It seems to me, for example, that the Dr's can treat sciatica, or radiating pain better than axial pain. Surgeries have less successful outcomes for people with primarily axial pain, than those with symptoms down their leg (for lumbar). So - I guess our personal stories don't really help them treat us any better. They also prefer to have patients with sensory (loss of sensation) and motor (especially) defecits - people who just have pain they're not so interested in (except pain management Dr's, of course!) - not because they're mean, but because they can treat those other issues better - and I think, they have an objective measure of the defecit, and change after treatment. It's very hard - as we all know - to measure pain. They can see the sensory nerves and the motor nerves being crushed by a herniation. Still - even all that's not so accurate - look around!

    But your story is different to mine, and in your story there seem to be some pretty surprising things going on - I have some questions, but I don't think you're at the end of the line at all. (I haven't given up either.)

    The first thing I wanted to say was - I'm kind of curious why you are asking for a diagnosis - you said this most recent set of tests showed you have arthritis and all sorts of problems with your sacrum. I guess you are wondering why you should have all this arthritis at such a young age?

    I AM NOT A DOCTOR - but I really have some things I'm curious about - What did the Drs say when your test results were so suddenly different after only a period of 6 months? There was nothing - and now suddenly all this - Did the first tests get messed up? Why this sudden, widespread, rapid onset of arthritis?

    I guess those things are influenced by genetics, and how good your equipment was; I do wonder if you had some traumatic injury at some time - a fall on your bottom, or a car accident (even when you were really young). Then there's all the activity you've done and whether that has been taxing things too much; how long you'd done it. And then with you - yes - I would be seeking those holistic type people - rheumatologists and other things. So I think you still have a lot of unanswered questions - and especiallly this sudden onset - I would have thought that would get a Dr interested.

    I do wish you all the best. If you just got the test results, you're just beginning. Dr's LOVE positive test results (because it helps them treat the person). There's a lot of stuff you can research here, and read other people's posts about things you're interested in - you can do searches.
  • Thank you all for the responses! Wow, yeah I know that glazed over look well... and I get what your saying about pain is hard to quantify without definitive symptoms or test results.

    I guess I'm just wondering why my back is getting trashed at such an early age. I've never had a back injury but can attribute some wear and tear to sports and other various activities..

    As for the difference in test results I've only had one orthopedist review the results and he basically said arthritis is damaging components of my back and pelvis but he's not sure exactly why, but believes it could be related to a rhuematological condition... maybe? and then the sudden onset of sternum arthritis really through a kink in there. how do you get arthritis of the sternum!? it just seems an unlikely place for arthritis to pop up. and I am definitely looking forward to seeing a rhuematologist to get their opinion.

    I was hoping to make it to 40yrs going full throttle before I started to ease up but maybe my "equipment" needs a little TLC... I'll take some time and look thru this site to see what I can find!

  • I think you are on the right track with the rheumatology referral. The fact that the oral steroids were so effective, and the way your pain pattern improves with exercise, suggests a major type of inflammatory process and from what I understand a rheumatologist would be well equipped to investigate that. Try to gather any lab tests you had in the past such as ANA, sedimentation rate, and autoimmune tests for your rheumatologist to review. Take some spine xray films or CD with you as well. Good luck.
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  • Welcome to Spine-Health. You'll find a lot of information throughout the site and as you already probably know, the members of the forum are very helpful, knowledgeable and supportive.

    I've always had a direct diagnosis for my problems and a definitive reason why, so I'm not in your boat in the middle of the spiney ocean.

    But I agree that going to a rheumatologist is a good idea. You may have the beginnings of RA, and you need to find out if that's the deal or even just a part of it.

    You never mentioned what type of doctor ordered your MRIs and read the result to you. If it wasn't already, I'd suggest a spine surgeon or specialist, hopefully fellowship-trained - it can be an ortho or a neuro, but one that only works on spines. Oftentimes new spine patients are counting on their GPs or PCPs to find a diagnosis when they really aren't trained to deal with the complexity of spine issues Even chiros aren't trained enough in spine problems to solely rely on them. It's also been sais here before that if you suspect spine problems, going to a chiro for manipulation can make things worse, so be careful with that until you know what's happening. So, anyway, some things to think about.

    On a side note, for the gout, a holistic treatment of black cherry extract (in pill form) or cranberry pills works wonders for gout. My husband was laid up for a week, unable to wear a shoe or walk due to gout, so we went to Vitamin Cottage and talked to a very knowledgeable fella who suggested eating cherries, fresh or dried, but hubby hates cherries so he said to take the cherry extract and drink lots of water. That was about three years ago and since he's been taking them every day, he hasn't had a flair in all that time.

    Again, Nick, welcome to Spine-Health and good luck in finding a definitive diagnosis. Be sure to hang around and look throughout the site and the forums, and talk with the forum members as you travel through your journey. We'll be here for you.

    Take care,
  • I agree with the others who said that the rheumatology consult was the way to go. I hope you get some answers soon! It definitely does sound like some sort of inflammatory process going on especially with the sudden onset and the speed at which it seems to be affecting your bones. Usually in a degenerative process, the changes happen over a period of years, not weeks or months.

    I also understand your need for a diagnosis. The not knowing is the worst part! Even if the diagnosis turns out to be challenging, at least you can set a course of action. As far as your young age...it's really not too young to begin having back pain. I was only 23 when I ruptured the first disk. But then I've got degenerative disk disease with several levels affected and it's taken more than 20 years to get to where I am now. My 17 yo daughter is also beginning to show signs of DDD as well, so we just have crappy genetics. The speed at which your problem seems to have come on definitely does sound like an inflammatory or auto-immune process.

    I wish you best of luck and keep us posted!
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