Anyone have neck, shoulder and back pain and no diagnosis?

My son is 14 years old and on March 10, 2014 he developed right shoulder pain and from that point it has spread to the other shoulder, in the neck and now in the lower back. Since the pain has developed we have went to his pediatrician who has sent him to an orthopedist, a neurologist, an oral surgeon to rule out TMJ and a therapist to see if this was psyhosomatic.....and it's not. He was hospitlized for a week at one of the best Children's Hospital in the country (Texas Children's) and new group of pediatricians, orthopedists and neurololgists examined him and still have no diagnosis but sent him home with about 10 medications, none of which help other than Tylenol 3 and NSAIDS which only take the edge off the pain. But one thing that might be helpful to someone who may have experienced this, is when he first came down with this pain and he went to the ER, he ran 102 fever. After running labs/tests the ER doctor said in his 30 years of being an ER doctor has never came across this before, and said it could possibly be viral or bacterial and gave us two different antibiotics and said they may help....they did not. When he was at Texas Children's one of the Neurologist, made a statement and said it could have been a virus that has compromised the immune system and in return the immune system has attacked the nervous system making it go "haywire". And he mentioned the only way to deal with this is a 3-day IV, Immune suppressant drug/therapy that he receives in the hospital, but it was a quick "no" from the head neurologist, saying that couldn't be it, but he also offered no other diagnosis. We know that is nerve pain because he can't even take a bath and definately not a shower without being in severe pain because the water only touches it, he is also very sensitive to a very light human touch and that's why the Tylenol 3 isn't very effective because it doesn't work well with nerve pain from what we have been told. I'm sorry this is so long, but it's been a long journey. If anyone has experienced anything like this could you please let me know, we could use any advice we get. Have blessed day!!

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19 Replies

  • Have they ruled out fibromyalgia? The trigger points are right where you said he has his pain.

  • Just until recently his Pediatrician mentioned it, but her like many other doctors don't know a lot about the disease and it's symptoms, but after the TMJ is ruled out from the oral surgeon (which we know he doesn't have) he will be seeing a pediatric rheumatologist. I did do a little research on the disease and its symptoms and he has a lot of them and some he does not but I know that will vary from person to person. I will let you know what the outcome of it is, because I think it's a pretty good diagnosis. And thanks for replying!!

  • There is a drug called Lyrica which is supposed to be very effective in treating fibromyalgia. While it has side effects (what drug doesn't) its benefits may out way any negatives. Good luck!

  • Have they ruled out rapid onset scoliosis that can twist the spine and the nerves in it.

  • Yes they did. It was one of the first things that was considered when he went into the hospital, and when they did their examination / tests it was ruled out. Thanks for replying Skeggy!

  • After over 20 years of excruciating neck and shoulder pain, including an 8 month stay in hospital, MRI scans, tests, physio etc, it was mentioned, in passing that I have a congenital malformation of my cervical spine. When I asked if that could be the reason for my pain, can't be touched there and all that, my new pain consultant said, "of course", almost surprised that I would ask or that I didn't know. Why I was never told about it during all those years of struggle, I cannot begin to imagine. Good luck. You must be so frustrated, no answers and your child in such pain. My thoughts are with you

  • Hello Janepepper, I am so sorry you are having to deal with so much pain for so many years. Although I can't relate fully, I surely can understand your frustration when you received your diagnosis in such a surprising way. Hopefully, we won't experience the same thing with my son and we will find answers soon. Take care!

  • Try an Alexander Teacher.

    Also look for a McTimony Chiropractor.

    I am guessing that your son has suffered some sort of damage. The damage has modified the way his muscles are behaving. There is good reason to believe that his preceptors have set themselves for a muscle tension that is wrong for good functioning of the body.

    Your son is going to have to re-learn how to use his muscles and probably use his muscles in a different way. An Alexander Teacher can help your son become more aware of how to use his muscles better. An Alexander Teacher cannot cure the problem. However they will be able to give your son the tools to manage his problem better.

    A McTimony Chiropractor will be able to look for muscles that are in cramp and help release the cramp. Many medical practitioners do not have any understanding of how muscle cramps interfere with the the body and cause pain and discomfort as well as all sorts of ills.

    Another thing to look for are the Buddhists who practice Mindfulness and meditation. Mindfulness is a tool that can helpful. Mindfulness is the new buzz word and there are many psychologists who claim to teach it but know very little about it. I have seen some very suspect books on the subject.

    The Buddhists should enable you to learn about it at a fraction of the cost that psychologists charge.

    Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf is one of the best books I have come across on practicing Mindfulness. It is a free download from

    Meditation and mindfulness will not cure pain. It can help change one's attitude to it and not make it any worse than it need be. I find from my practice of Meditation and mindfulness that I have learnt to detect the things that make my pain worse and take steps to reduce the effects of these things.

    Hope this helps

  • The first day his pain began, we took him to the chiropractor thinking he may have slept on it wrong or even somehow have possibly dislocated it. She took x-rays of it and for some reason I can't remember why she decided not to do an adjustment and after that it has been doctor after doctor. When we get a confirmed diagnosis we will definately do that if it's something the chiropractor thinks would help. My son from time to time would go to her for an adjustment because he's a black belt in karate and would have a stiff back at times and would feel better after an appointment with her. Being from the states, I'm no sure what an Alexander Teacher is, I looked it up and I'm not sure what an AT is equivalent to in the United States, but it does sound like it could be helpful in the future. Thanks for your recommendations!!

  • Was he checked for Lyme's Disease?

  • Yes he was, it was ruled out. Thanks!!

  • Alexander Teachers have no medical equivalent as far as I know. An Alexander Teacher is very dependent on how sensitive their hands are. The hands pick up muscle micro cramps which are interfering with the smooth functioning of the body as an engineering system. They teach how to improve the use of muscles and how to use muscles as they are designed to be used.

    They can improve your son's karate skills quite considerably. Good muscle usage is dependent on well functioning propioceptors which feed into the spine. Propioceptors influence muscle movements and muscle tension by means of spinal reflexes. Spinal reflexes are often outside the control of the brain.

    Hope this helps

  • After re-reading your post, I started searching to see if we had such a facility down here and we do! But, it's only a training academy to become an Alexander Teacher and appears not to be a clinic you can go to for help. But I will be doing a little more research on it, once we know what we are dealing with because it sounds like it could be extremely helpful in a lot of ways other than health issues.

  • Speak to them. They would know where to go and who is available. They would know the american network. I only know the UK network.

  • if the chiropractor decided not to do an adjustment, then accept that - in many cases "adjustments" can end up doing a whole load more damage, and a good chiro will recognise that, so hold fire until you get a definite diagnosis of what is causing the pain. If you can't find Alexander technique, Pilates may be useful, but you really do need to get to the bottom of the problem at his age, and next stop should be a paediatric rheumatologist to assess thoroughly for a juvenile inflammatory arthritis. If it is that,then the sooner you get onto treating it properly the better his long term outcome.

  • Why has he not been seen by a paediatric rheumatologist to rule out juvenile arthritis? Thats crazy that the kid has been sent all around all those other specialists and still no diagnosis. Neck, shoulder and back pain should have Juvenile spondyloarthropathy considered. At that age you really do need a paed rheumie and not an adult one though, as it does show up quite differently in children and needs a paed. specialist to sort out.

    The fact that NSAIDs do make some difference should have been a big hint to the doctors that it was an inflammatory process (i.e. spondyloarthritis should have been considered). Did he actually take NSAIDs regularly or just occasionally. Spondy really only responds well if they are taken regularly. Get a referral to a rheumatologist as soon as you can, and make sure you tell the rheumatologist that he does get some relief from NSAIDs.

  • We have an appointment set for next week, hopefully we will get some answers and a diagnosis.....even though I hope it isn't a diagnosis that will be a life long struggle with the symptoms such as fibromyalgia, at least we know what were dealing with and the best way to deal with it.

    He has been taking NSAIDS on a regular basis and it has helped by taking some by taking the edge off the pain. When he was in the hospital we know that there is inflammation and nerve issues that are both involved, but again nothing came of it. When we go see the pediatric rheumatologist, I will be sure to mention that he does get some relief from NSAIDS.

    Also what I have failed to mention in my original post was when he was in the hospital and he had an MRI that discovered that he had tethered cord syndrome. Even though he has had NO symptoms of this, and they doctors claim this had nothing to do with his neck, shoulder and back pain, he will be getting the surgery to correct the problem once we have gotten his current condition under control. Thanks for your help and advice!

  • I KNOW EXACTLY WHAT THAT FEELING IS,if my headphones touch my skin next to the area then I too feel the pain and it's no fun indeed, what I do is go for a shower and let the water spray the area and for me it soothes it a little, and I'm sorry for your son because it really is bloody sore and it is very hard to explain to people just how sore it can get, I spend most of my day praying it does not start as I can only get rid of it by lying down or sitting in my chair and press against the back of it and sometimes it pushes it back in . So Tina 1963, I realy do feel for you as that area has plagued me since I had an accident on my bike, and it started slowly and slowly it run's my life , does your son get strange feeling when he lies down, as since my accident every night I lie down it feels strange, but mine has turned frighteningly strange, so make sure he watches how he turns his neck and especially his shoulders , I now have to keep my elbows in when doing some things, hope his is not as bad, best wishes

  • Hello Alexander/everyone

    I am sooo sorry it has taken me so long to respond to your post, and I also was to let everyone know how the last appointment turned out, I've just been incredibly busy.

    UPDATE: We went to Corey's (my son) appointment with the Rheumatologist and all the tests came back negative and he had no answers also, but he said he would continue to work with us until we found an answer.....that was encouraging, but still disappointed again at the same time....still no diagnosis.

    Since we had tried ALL other options, we had decided to go to an acupuncturist as a last hope. We had always heard about what acupuncture can do for pain and knew of someone who had good results with it. After the initial consultation and the explanation of what he felt the problem was he began with the tens unit therapy and then the needle therapy, at first Corey was WAY too sensitive in areas to even touch so he just left those areas alone, but with each treatment Corey began to get better and better and better. He is almost pain free, but there is one area that seems to be aggrivating him from time to time, but the doctor feels that once he gets the surgery for the tethered cord syndrome that pain will subside.

    I don't know if you have acupuncturists in your country, but if you do I would HIGHLY RECOMMEND to see if one could help any of you who may be experiencing a similar problem. And even if you are not they help in so many other ways from migraines, fatigue, stress, back problems and many other ailments.

    Alexander, my son has never mentioned a strange feeling when he lays down, all he ever mentioned was feeling light headed or having a "cloudy feeling" but that was when he was sitting up. What do you think about seeing an acupuncturist?

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