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Strange Neck and Shoulder pain for 8 years, what do I have?!

Posted , 9 users are following.

Rasan
Rasan

Hello Everyone, 

I have been coping with a very unusual (so it seems) condition that has had me visit every doctor where I live, and about 8 years later, I have slightly improved but I'm still always accompanied by stiffness and pain in my neck and shoulders, all the time!. 

It started when I was around 20. I would get the urge to crack my neck, accompanied by increasing pain, and a stiff stuck-like kind of feeling. It has moved around my shoulders and neck ever since, sometimes more concentrated on one side or area, but generally, pain in the whole area, felt mostly when I am tired, stressed/nervous. 

I was also extremely sensitive to cold air for a while, but that has also improved in the past few years. The punchline is I STILL don't know what condition or disease I have. After countless MRI's, tests and scans which mainly showed normal or mild results, my latest doctor has put me on skeletal muscle relaxant medication for treating Fibromyalgia, but im not really noticing a big change (almost 2 months in.)

I haven't suffered any injuries or trauma that would cause this or had hurt my neck and can't think of anything else rather than stress and computer use, but even for these reasons, my scans show normal results with one of my disks 'Mildly Dehydrated" c3-c4. Currently, my neck feels like little particles are touching the sides from within, and I can crack it in numerous directions and small hear small pops and clicks. 

This has obviously become a great problem in my life and I have had to restrict my routines in many ways. It would be really helpful if I could just find someone else who has the same problem and know what it is, and how to treat it. 

Any light shed on this issue would be of great help to me and I wish you all good health! 

 

1 like, 15 replies

15 Replies

  • kandi45473
    kandi45473 Rasan

    Posted

    I've had something similar since aug 2015 with numerous dr visits MRI Ct scan X-ray and still no answers . Only I've found is I have tmj issues and I'm a tense person , I notice I don't sit or stand with my neck relaxed which makes it worse . I've started some exercises from dr for my neck and I sleep on a heating pad on my pillow . The heat relaxes my muscles . I had such a severe stiff neck and headaches and body would shake randomly and I was tested for everything including a spinal tap to check for encephalitis and all came back negative . I do have a straight neck from bad posture and I have to lay down on my back on my bed or a table or something where I can hang my head off to relax and put curve back in my neck . Sorry I'm not much help I haven't been able to fix my pain and stiffness either I just have to work hard all day to relieve it a little !

    • amy92439
      amy92439 kandi45473

      Posted

      Wow this sounds almost exactly like me.  I hang off the bed also and use heating pad on my neck all night.  I exercise as much as possible and do stretches all day long.  I also notice when i'm working, i am def. worse than the weekends when i'm less stressed..etc.  My doctor wants me to get a 3 level fusion neck surgery to correct my curve but now i'm wondering if all this pain and my problems are not going to be fixed by this surgery.  Really don't know what to do anymore.

  • amy92439
    amy92439 Rasan

    Posted

    I have very similar issues but only for the past year now. i have seen so many doctors and had a lot of tests but mine do show a reverse curvature so most dr's are blaming that on the neck pain but most recently started see a chiropractor who says that my compalints point towards cpmputer use/stress and muscle tightness.  I just don't know anymore and tired of hurting.

  • Rasan
    Rasan

    Posted

    Wow you guys sorry I checked a few times and saw no responses to my post. I'm glad I'm checking again. @Kandi and Amy thanks for sharing your story, helpful with a solution or not, at least we now know there are others with this mysterious pain and stiffness. For what I can make out of all our 3 stories, we're all dealing with stress related pain, I must add that I'm a tense person too. I've dealt with depression a few years ago. I still can't figure out whether it was years of neck pain that lead to depression or vise versa. Either way In that aspect I'm better now and the pain is also less intense, but there is undeniable stiffness at the least in my neck joints all over. It feels like when put together my neck was rushed and now things are in the way of each other inside :P. 

    Anyway thanks again and I wish you and myself better health SOON!. (P.s my doctor who believes I have fibromyalgia says it does leave you alone around your 40's. I just turned 28.)

     

    • amy92439
      amy92439 Rasan

      Posted

      Does anyone else have pain when touching you neck, spine area?  Mine hurts so bad some days along with everything else and then on weekends sometimes it doens't hurt to touch but neck and shoulders are still tight and painful. 

      I know that work makes mine worse. i'm at computer all day long typing, by the end of the day i'm rubbing my neck and stretching to try and get relief.

      Still sleeping with heating pad and hanging off the bed.  I see a chiropractor every week and massage therapist once a month.

      Surgeon is still suggesting the 3 level surgery on my neck and says that is whats causing my pain, i just don't know and of course i'm scared to go through the surgery.

      I do feel like my pain and tightness gets worse when stressed also.  I even started taking an anxiety medicine recently but of course it's not going to help with the pain.  I've been taking gabapentine for over a year now and i do feel like that helps with the nerve pain but that's it.

      I keep hoping one day i will wake up and it's gone.

    • Rasan
      Rasan amy92439

      Posted

      Sounds a lot like mine, Amy. First they suspected a "cervical rib" but that was ruled out by several doctors laters as it did not show up on my scans. But something has to explain this stiffness and discomfort right? I've been waiting for it to be gone for a long while too now. If it is Fibromyalgia and fades away with time then so be it. But if we find out anything else thats useful about this, lets please share it here and let each other know. I will for sure. 

      Wishing you all well being. 

    • amy92439
      amy92439 Rasan

      Posted

      Absolutely! i am currently seeing a chiro once a week and massage therapy still. i would love to go just one day without the pain or some sort of indication that it's improving but it's not.  Dr still says i need the 3 level fusion, i'm just really scared to do it.  If i knew it would help 100%, id do it today.  My fear is doing it and then still hurting.

      I will def keep u updated if i do have any changes, etc.

      Best wishes to you as well.

  • ross29108
    ross29108 Rasan

    Posted

    I have this exact problem, I am being driven absolutely crazy with it. I am 36 and have also had this since my 20s. In the beginning it was once in a blue moon with my neck locking up and an intense pain, now I'm tackling it daily, I am now on a pre bed muscle relaxant and not really any further forward with a diagnosis other than the doctors just testing different drugs in me. I have recently been taking ibuprofen or naproxen before bed and using a hot water bottle all night which has Improved it this week. This condition rules my life now, I have 3 kids and I am having many days wasted because of this cursed pain!! 

  • amanda59745
    amanda59745 Rasan

    Posted

    Hi i know this post is a few months old but hope to get a reply. i have had neck stiffness which started  suddenly in march 2017. i had had this kind of neck thing in the past and usually resolves after a week. This left sided neck pain was like a knot  which traveled between my shoulder blades and remained like a niggle. In may 2017 i had an extremely stressful time and this niggle became a large pain even my shoulders , clavicle and jaw became tight. i was doing daily stretches but , with little improvement. I was told i have health anxiety and referred to physio. I had 3 months of physio with little improvement. Then i pulled my lower back and ended up on a cocktail of drugs as the pain was terrible but these drugs helped my neck. Now i am not on any drugs and my neck  muscle stiffness and tightness is just as bad, i continue with exercises several times daily but no help. Should i go back to my gp? 10 months of neck stiffness is wearing me down. I have also done yoga and  massage with no help. Any suggestions.  
    • ross29108
      ross29108 amanda59745

      Posted

      Hi Amanda, I am in no real position to give advice but I am still having similar issues as yourself. I also believe stress causes a lot of the issues, as everything tenses up at these times. I have good days and bad, something I have been doing recently is lying on a hard flat surface and slowly lowering my head off the edge and then having someone there to help support it slightly while you breath. It seems to stretch out any possible neck tension and it also stretches your back. I still get issues but it appears to limit my further issues with headaches/ migraines. I hope you find a remedy soon. 
  • kath46835
    kath46835 Rasan

    Posted

    Hi there, I have had neck pain, stiffness and spasms for 3 years.  It's really bad at the moment and I started to wonder whether it is fibromyalgia because I have had chronic fatigue / M.E in the past.  I am waiting to see an osteopath but I KNOW that my pain is muscles and ligaments and not bone related.  I've had an x-ray which shows nothing out of the ordinary?.  My GP sent me (Twice) for an MRI but I have claustrophobia and could not get in the machine so he has given up on that.  I take cocodamol every day for the pain, sometimes more, sometimes less.  Does anyone have any advice about how to get a diagnosis and help?  I have waited 6 months for the appointment at the hospital.  It was this morning, I went and they told me that the appointment had been changed to yesterday and they had sent me a letter (which I didn't get).  I broke down in reception.  They managed to get me an appointment for next month but I still think this appointment won't find what my problem is.  I am tense around my neck and shoulders, but you are when you are in pain.  I am on amitriptyline at night which does help prevent that horrendous migraines I used to get (Only get them around once or twice a month now) but the neck pain during the day is the same.  Does anyone have any advice?  It's good to know I'm not the only one, but it's a shame that we are all suffering like this x 

    • amanda59745
      amanda59745 kath46835

      Posted

      Hi Kath sorry you have had this 3 years , i have had neck, shoulder mid back pain 8 months now and now lower back pain. H aving weaned off amitriptyline  for the last 11 months i wondered if this was masking my pain? I am worried it is something serious but , my physio says it is tight muscles and ligaments. I have had massages, done yoga and currently having physio with no help. It is so exhausting being in pain all the time. I like you have thought is it Fibro but, i dont think mine is really, my GP says health anxiety an dit is causing tension. xx
    • kath46835
      kath46835 amanda59745

      Posted

      Hi Amanda, I tried exercise and physio, neither worked. I never have a pain free day, do you? If it was just tension it wouldn't be every single day. My GP also suggested anxiety and stress and that does play a part but not every single day. I hope you find some answers x

    • amanda59745
      amanda59745 kath46835

      Posted

      Hi Kath no i dont have a pain free  day either it is so exhausting. I have just started swimming and i hope to start doing other exercises in an attempt to sort this. x
    • swikar48522
      swikar48522 amanda59745

      Posted

      Any update regarding your health ? Iam suffering from neck stiffness since 3 months . I used to crack my neck a lot and did it for around an year. But i dont get any pain not even little , i just cant move my head and get ratchet feeling while i forcefully move it .X Ray showed that theres no any problem with my bone , doctor said its posture problem and suggested me to get a therapy which i did for around 2 weeks and then self adjustment things which iam doing till the date till the date but still not much improvement. Also , i hear many pop noise when i move my stiff neck .
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