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No one believes my pain from DDD

AnonymousUserAAnonymousUser Posts: 49,900
edited 06/11/2012 - 8:24 AM in Degenerative Disc Disease
Im 17 years old, and ive had ddd since 2005. at first no one would believe me that i had REAL pain. Until a bone scan proved i was right. However i see a regular Orthopedic surgeon and he doesnt do anything for me but say EVERYTHING is not a problem. I have 5 degenerativ discs that are almost gone in my back and my hips have started going out on me from a protruding disc, and he keeps saying it will all go away when i finish growing. But my family doctor says im done. Ive been put on home instruction because its got so bad i cant sit at school and still no one believes i have the pain i have. I understand its my pain and no one has to believe me, but i get critizied by everyone. It has only gotten worse and with winter coming it wont get any better. I have meds but it doesnt help, iv got to the point where my hips give out and i fall, and i cant sit down for more then 5 minutes. What do i do!!!
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Comments

  • Sorry you're going through all this. Can you find a pain management Dr. or ask your Dr. for a referral to PM Dr. Also at your young age you may need a Therapist to talk to or even the guidance counsellor at your school may help. 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
  • i hear ya about DDD being painfull and having people look down on you for being in pain. i am 27 and have had it for 3 years, but the dr wouldn't do anything about a buldging disc until june of this year.

    it totally sucks, cause pain meds don't do anything, and i couldn't even stand up straight.

    i agree with charry, try to find a pain clinic. i did, and they sucked too, but at least they tried other methods. then finaly get an appointment with a nuero surgeon.

    i really hope they figure this out, you are too young to be in pain. you don't deserve it.

    take care,

    chris
  • HIYA my names carol i do understand where you are coming from my husband as DDD and no one will help my husband they say that you get no pain with DDD but i can see the pain he is in all the time he as 3 disc that are gone meds do not help him and they wont give him a MRI he is have physo but that dont help we are in the uk doc also says that DDD is when you are older but i can see that not true as you are young but keep tell everyone that the pain is reel cause only people with DDD have to keep fighting with this till the doc see that there is pain
    hope you get the help you need soon
  • I'm sorry you have this so young. I BELIEVE your pain. Don't listen to what those ignorant people say. DDD does cause pain, and it can get severe and at times there are excrutiating flare ups. I had arthritis in all my joints, and my back hurt in my teens. Someone called me cripple once, and it really sucked. I went into remission, and was able to graduate. Seven years later I fell really ill, and 4 years later I was diagnosed with an autoimmune disease. 3 years ago my back went out and I was told I had DDD in the neck and thoracic. Then I herniated L4-S1 and had a microdiscectomy last year. At this moment, I am recovering from a 2 level fusion and am still in a lot of pain.
    Hang in there, take care of yourself, eat healthy, and try to be positive. If one doctor doesn't listen to you, go to another. Be proactive in your care and learn about your condition. Take care >:D<
  • I am so sorry to see yet another young person suffering with the very real pain of DDD. Some people actually have DDD and it causes them no pain at all. It is actually a part of the aging process and I think that is why some docs think that it can not cause pain. Is it possible to get another doc? Do you have any support at all from your family? Lots of people really do not understand chronic pain and it is hard to understand if you have not experienced it yourself. One thing that really has helped me is that I got fitted for a lumbosacral back brace. I do not wear it everyday but when I must stand, sit or walk I do wear it. You must get a really good corset style one and be fitted at an orthotics for it but maybe it would be worth a try for you. Good luck to you and please keep us posted.
  • Hi, I am very sorry to hear about your problems, I have two discs with similar problem, however, last visit to neurosurgeon he told me that in 2-3 years the discs will have completely disintegrated, the bones fused and I should have a lot less pain. At first I was disappointed but now I think -great! there is an end in sight.

    Maybe you are close to that point too?

    O:) Have a look at my other posting on pain management and suggest that your doctor sends you to a multidisciplinary pain management clinic

    There are some very good articles on this website about DDD and what helps the pain.



    Best wishes -Miriam
  • Hiya, Welcome to Spine Health >:D< Firstly you are not alone :) , we know and understand your pain :D Its difficult for people in the real world to understand the pain :''( , because they can not see what is going on ~X( . So now you have found us :) , if you want to vent out ~X( , just come here. Sweetheart you are so young to have the problems that you have >:D< , and i am sorry you are hurting >:D< , but i am familar with your pain :) . The doctors will not do any thing until you have stopped growing :? What medication are you on ? :? Do any of your family support you? :) Keep posting! :H


    angie :H
  • I know EXACTLY what you are going through. I was there 5 years ago. I had mild pain even as a child..they never did a single x-ray because I was too young for it to be serious. I finally got someone to do an MRI when I was about your age and they discovered DDD as well as stenosis, and a disc bulge. Still though I feel like they dont take me seriously. They have an MRI right in front of them and its still like "im too young" for it to be real.

    Im actually waiting on a new MRI and after that I plan on writing to a bunch of surgeons, specialists, and medical centers about the lack of studies or treatment programs for young people. I feel like we need a petition or a group of cases to slap in front of them and say hey..we do exist and you need to do something about it.

    I understand that no one should live in pain..but to me it seems backwards to spend ALL resources on treating older people who are expected to have some level of degeneration etc VS. young people who this should NOT be occuring in. Maybe if they started treating young people who complain of pain, there wouldnt be so many back problems in older people. I know we arent the only group of young people with these problems, and it makes me wonderer how many OTHER children and teens are going undiagnosed. I dont think its as rare as the medical articles say. I think its ignored.

    Feel free to PM me, we can talk more about it. I for one plan to get someone to take notice of this problem.

    :)
  • Hi, you have the same name as my son =) Dif spelling.. So I am not as young as you are now, but I was about 21 when I first hurt my back, I've got DDD in 5 disks, labeled with spondy and all sorts of other things, foraminal stenosis, central canal stenosis, (side and center nerve/cord compression/pinching basically). It's not fun. Everyone for the most part on here will agree; your family, friends, everyone, they all just sort of see you as a 'human' and as such think you should be able to function like the rest of us, (them, actually), and if not, fix yourself, and then be better. The problem is that they just don't understand that for us, this really is the equivalent of cancer in many ways. It can include debilitating pain, it's a lifetime problem that usually gets worse and worse until you eventually die, from whatever cause, hopefully at a ripe old age, and you usually have to take a lot of meds, including potent narcotics for pain control.

    At your age the best thing I can suggest is to get an advocate; your mom, a sister, an aunt, someone, who can take/go with you to all or most of your appointments, especially once you are seeing a pain management specialist. GET A PAIN MANAGEMENT REFERRAL. That's priority #1. If you have medical insurance now, use it as much as you can to get MRI's done, and get situated with a Pain doc, a new surgeon, and a neurosurgeon maybe. About the advocate/support person though, you will NEED this person to be there to understand why you are doing what you do so that you can just try to live a normal life, and that you are not a junkie looking for pills, or just making up the pain. It helps a lot (it did for me) taking a family member, so they can see all of the other people in pain, see how bad some of it is and how bad it can get as time goes by, and take them in the room with you so they can hear all the Pain doc has to say. Let them ask questions if they like. Having that one person one your side %100 will help you immensely.

    Other than that, you're already taking a proactive approach to your situation with your doctor, and by registering on this site, and I think that you'll find tons of love and support from everyone here, and hopefully in your day to day life as well. Good luck, and definitely *find someone to be your sidekick* in this, and not just a best friend, you need a family member, someone who is there always and regardless. You also have countless people here who believe you, and are willing to listen to your words and give you our best advice and best wishes; you will be ok.

    Also on a sidenote, from your avatar picture you look like a very pretty young girl; this can add to to difficulty for you, if you 'look perfect' on the outside, for people getting it through their heads that part of you is broken on the INSIDE; I don't know if that's an issue or not and I'm sort of going into the psychology side of things by mentioning that, but it usually will be a very real factor in your relationships.

    Wishing you and everyone else here the best,

    JWM
  • OK so now I feel guilty. My doc also said I am "too young" for these changes to be occuring in my C Spine (while reading the MRI and looking right at it, plain as day, right in front of her) And I am TEN years older than you. I can tell you that I had an unrelated health issue in my teens that I won't get into here; but suffice it to say that many hospitals, and some insurance companies will assign a "Patient Advocate" who's job it is to walk you through any referral process that may be required by your insurance. I would ask your parents to help you get one of these people in your corner. They can be a BIG help with understanding your condition, making sure that you are not given a brush-off by any doctor that may think they can take advantage of your inexperience and provide substandard service. If part of the problem is that your parents are not being as supportive as they could be, call your Insurance company directly and ask them if they have advocates available to minors. I know it can be confusing, people will tell you to deal with it or get a second opinion, but have no advice as to how to do either. Hang in there and keep asking questions. Keep reaching out to get the support you need.
  • I'M SO SORRY TO HEAR THAT A 17 YEAR OLD IS DEALING WITH THIS CONDITION :O .THE PAIN IS REAL AND THE FEELING OF HOPELESSNESS IS REAL ALSO :O ,BUT YOU HAVE PEOPLE WHO ARE GOING THROUGH THIS LIKE YOU :-C .HERE AT THIS SIGHT. THEY WILL TALK TO YOU AND DIRECT YOU TO SIGHT'S THAT ARE VERY HELPFULL :| I HAVE HAD DDD FOR 10 YEARS NOW. :''( DON'T SIT BACK AND TAKE THE INFO YOUR DR JUST GAVE YOU.FIND OUT AS MUCH INFO AS YOU CAN, SEE A GOOD CHIOROPRACTOR,SEEK A SECOND OPINION,RESEARCH,RESEARCH,RESEARCH. MY SUGGESTION TO TRY,IV'E BEEN GOING TO A GYM THAT HAS A THERAPY POOL YOU ARE SHOWN EXERSISES THAT YOU CAN TOLORATE AND EVEN IF IT IS JUST WALKING FROM ONE SIDE TO THE OTHER,( 4 FOOT POOL ) #:S IT HELP'S ME A WHOLE LOT MORE THAN ANYTHING TO DATE.AND BELIEVE ME I HAVE BEEN PROBED,PRODDED,AND POKED :jawdrop: EVERY WHICH WAY BUT LOOSE,AND INSURANCE PAY'S FOR IT,TRY IT SKY,WHAT DO YOU HAVE TO LOSE. MAKE IT AS EASY AS YOU CAN.REMEMBER YOU HAVE FREIND'S :H JOHN B

    L1,L2,L3,L4,L5,L10,L11 HERNIATION,S-1 NERVE DAMAGE,DDD IN 7 DISC'S ALL IN 10 YEARS,AND I JUST TURNED 54 ... SOMA,VICODEN,CELEBREX,CYMBALTA,FLEXORIL,AND AMBEIN C/R TO HELP WITH SLEEP =))
  • Hi, I just got diagnosed with DDD through my lumbar spine and my sacrum spine yesterday and I am still a few weeks from my 17th birthday. But the major difference is that my doctors are doing everything that they can to help me. I have to start with phyiscal therapy, chiropratic adjustments, and massage therapy along with exercising to develop my muscles so they can help to support my spine. I will continue to do this and if it doesn't help in six months I will be checking in to get the spinal fusion surgery. I would say to find a doctor who will believe you. I am reading this and feel so lucky to have such a great doctor. I am really sorry you are having such a hard time with this especially because it seems you are much futher along with the DDD. I wish you all the best with this and please PM me if you want to talk. I have to say that I got an account just so I could apply to this post and I am happy that I am not the only seventeen year old going through this.
  • Hello all...i have been having DDD since i was 16. No one believed me about the pain i was experiencing, including family. i have had emg's, mri's, cat-scan's for a while now and none of them have shown anything wrong with me. i have had 4 lumber surgeries and one cervical. i have two titanium plates and 6 screws in my neck but no one is helping my lumber region, now. i have had pain where i thought i'd go crazy and numbness in my right leg where i couldn't walk. i am on a multiple of medications including vicodin, soma, neurontin and i also have to take a sleeping pill so that i stay asleep.
    I am 48 yrs old and just had my 15th surgery on my body. (lumbar, cervial, knees, foot, hand, shoulder, elbow.) there is nothing worse than having pain in your back as it makes your whole body hurt!
    When i turned 21 i had a doctor tell me that my back was as old as the people in the room, (that includes my 52 yr old mother and him...which i'm pretty sure that he was just as old as my mother.) i tell everyone now that i'm 148 yrs old because that's the time frame that my doctor gave me.
    The only time i felt somewhat normal was when i had my daughter 17 yrs ago.
    Sorry that this is so long but i've been searching for a place where others understand just what i'm going thru.
    Thank you very much for letting me vent.

    And i know that you are all brave people for living with DDD! please make sure that you find one thing in your lives that makes you feel good. mine is horseback riding. (i know that sounds weird...but it's my therapy. without it...i would lose my mind!)
    Depression is something that goes hand in hand with DDD and with no one understanding just how you feel can make you feel really lonely. that's why i said to find something that is YOUR therapy to keep your mind happy...it's very important that you don't give up. (been there...done worse!)
    And no...i didn't come to all this just over night...i've been living with DDD for 32 yrs now.

    Norma
    PS: you can write my email addy if you need to talk just make sure that you put having DDD in the subject line.
  • call or visit the center for spinal disorders and request to see Dr. William Stevens 1331 No 7th Street #140 Phoenix, AZ 85006 Sorry, I don't have his phone number but you can get it.
    I believe you!!
  • I'm 43 and started having problems at 38 after my first baby; everyone kept telling me "all new moms have back pain from all of the funky bending". However, I KNEW this was not the same. Found out 2 lumbar discs were shot. Had a posterior 2 level fusion when couldn't stand the pain anymore. Only you know what you are dealing with, get more opinions! You have to be your own advocate. The posts that mention the "domino effect" are correct; I now have 2 more discs shot below my fusion. However, I also have 3 discs shot in my neck, so it seems like this is just some craziness my body is up to. My Dr. is baffled. Good luck to you, keep up with this site, even if you just read the posts it is so helpful.
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