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Schuermanns, Disc Degeneration etc.

Thank you very much for reading:

As you can tell by the time of posting, I'm writing this at night, in bed and truly fed up. Today was a bad day for pain.

I've lived with discomfort, eventually blossoming into full-blown chronic pain since I was 14. I'm now 19 and thoroughly tired of living like this. Like many people, I wasn't diagnosed properly with Scheurmanns until it was too late, this combined with a never ending stream of incompetent NHS administration has led me to believe I will never get better, or live a 'normal life'.

I'm sorry to rant but I need just one person to truly empathise, rather than offer some hollow support.

I'd been dependant on Codeine for about three years until February when I gave it up (and none since) because although I could still control my intake, I knew I was using it to hide from other things in my life. But now, I still take the usual ibuprofen, paracetemol and methocrbamol. Along with bouts of amitriptyline.

I have a very stable family who help, but have lost patience with me, and fail to appreciate my pain. It's not their fault, and whilst my best friend is one of the few people who truly understands, how do I continue to burden him with constant complaints? I already feel guilty when I say I can't go on a night out because standing up for too long hurts.

My brother who is a couple of years older than me loves to go to the gym and body build. I use to run long distances before the pain got too bad, and I miss that. I want to wake up early, go for a run, go to the gym and be proud of my body. Instead, I'm ashamed.

And I know this is all relative, I truly do, but when I have a bad day, I need someone to turn to, and I hope I find help on this forum.

Thank you all.


  • What doctors have you seen regarding the kyphosis? There are things that can be done to manage the pain , and possibly surgery. Have you ever consulted with a surgeon regarding treatment options?
    Unfortunately, family and friends can empathize with us, but they can't truly understand because they don't live with the condition......While almost every person on the face of the planet will , at some time experience an episode or two of back pain, unless it leads to something more significant than a pulled muscle or ddd, they won't understand.
    And we , as chronic pain members have to learn to not focus on our own situations and pain so much, as to make others not want to be around us.
    Because the pain is chronic, we have to learn to incorporate some level of pain into our lives and function as best we can, with it.......that includes not centering discussions around what we can and can't do, or what our pain is like each and every moment of the day... We need to get involved, with something that brings us joy and contentment, and make efforts to participate in things, to whatever ability we have.
    Is it easy, no, it isn't.......but there are times when all we focus on is what we have "lost", what we "can't do", what our "pain feels like".......and after a while, no one really wants to hear it.....they want to hear us talk about what we are happy about, what our goals are, what we are doing........not what we can't.
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  • As the caregiver of a kyphosis/schuermans patient, I know how debilitating it can be. I agree with the previous comments. Have you spoken with a surgeon or spine specialist about other options for your case? My husband has fusion surgery two years ago from C7 - T10. He still has a lot of pain, but we are happy that at least his curve will never get worse. We continue to try different pain management approaches, but we haven't hit the right mix just yet.

    And the previous comments are right - there is a big different between sympathy and empathy. While I feel bad for all he's been through I can't feel what he is going through on a day-to-day basis. I think you should talk to your family about the kind of support you need. It is tough for everyone involved, which is why open lines of communication are key.

    Honestly, what I would do is "go back to the beginning." I kept a notebook of every doctor we saw, the diagnosis, suggested treatment, meds that worked and didn't work, etc. Begin by listing the different doctors you have seen. Include their specialty and what they suggested. From there look for the "holes." Maybe you should see an orthopedist? Have you seen a spine surgeon that deals specifically with kyphosis? The holes in your story will help guide the way.

    I certainly wish you the best of luck. Keep your head up!

    Spine patient caregiver
    Rockaway, NJ
  • Thank you for kind and understanding comments- it was certainly an opportunity to vent! As happens, putting a couple of days in between the rant and now has given me a bit of perspective, and I appreciate it's not the end of the world.

    In terms of surgery/ seeing a doctor, the most that has been suggested is physio (useless on the NHS, as they will see you at most once a week for 30 mins, and try to get rid of you quickly!) and a facet joint injection for lower-back pain which may be cause by lordosis- compensating for kyphosis.

    I would really appreciate knowing what sort of pain injections are possible: at one point my mother had an epidural for a herniated disc, would this be a possibility?

    Thanks again for advice and sorry for the rant, but this is the first time I've sought help online, and it was well overdue.
  • And to give a quick summary of my treatment and diagnosis so far:

    Scheurmann's disease with schnorl's etc. in T6/7 area
    Kyphosis (know it's the same as Schuer.)/Lordosis


    Steroid injection in scapula (when docs still thought pain was to do with shoulder joint)


    Diagnostic facet joint injection, with a waiting time of approx. 6 month in between injections (I can't believe it either)

    Ibuprofen, Paracetamol, Methocarbamol, Codeine (not often)

    I'm lucky enough to have parents who have finally given in and agreed to private consultation this week, will post results.
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  • thanks for answering my questions. i understand needing to vent, but there are times when in order to offer you some suggestions, we need to ask questions as well....thanks for understanding that.
    as far as injections go, there are many different ones, and they are done for various reasons. some are diagnostic, meaning that they are done to confirm that an area that the doctor thinks might be causing you pain is in fact that area. some are meant to offer pain relief, and if the test injection relieves the pain, then the doctor may want to repeat them or offer the next step in procedures.......a rfa ( radio frequency ablation is one of those ).......and some are done to see if they help to reduce pain and inflammation in a specific area.
    this link might help you to check out the various injections and options......
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 06/10/2014 - 2:09 PM
    I know that the NHS can be incredibly frustrating at times. It's a wonderful, tragically flawed system. I'm pleased that you're in a position to have a private consultation...Make the most of it!

    Make a list of all of your questions & concerns, make sure that everything is covered to your satisfaction before you leave. I find appointments very hard on me, physically & mentally. Take a pad with you & make notes as you go along. I find it too easy to get lost in my pain, forget to ask, forget to remember & often spend the journey home kicking myself! It's always best to be prepared.

    Good luck! ;-)
    Osteoarthritis & DDD.
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