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Struggling without a diagnosis

madel-commadel-co Posts: 3
edited 12/05/2015 - 3:20 AM in Upper Back Pain, Thoracic
Hello everyone. I am new to this site although over the past few months I have been looking at other topics to see if anything seems similar to my symptoms.

For several years I have had a painful knot in the centre of my right shoulder at the back particularly after working or standin for too long. I put it down to posture and maybe because I have flat feet. Over the years the aching burning pain started to go down from this knot between my spine and shoulder blade and I then occasionally got a really sharp pain inside my right shoulder that felt like a nerve being ground between 2 bones which only went away if I stopped using my arm and shoulder completely.

A couple of years ago I was fit and healthy and exercising regularly but I started to pull the same muscle in my neck on the right side everytime I exercised so I went to see a chiropractor. It didnt really help and the pain got worse. I noticed that the muscles all the way down parallel to my spine on both sides and across my hips just above my buttocks were particularly tense. I have tried all sorts of relaxation techniques but they just won't relax and it can be unbearable to get to sleep sometimes because they are so incredibly tense. I think maybe they have been like that for a while but I have tried to keep really busy subconsciously to ignore them.

My job is very physical - lots of cleaning and lifting and I work in a school so everything is at the wrong height which exacerbated the pain. I went to see another chiro which didn't help at all

Over the summer I was trying to renovate my house and I also have a part time job hand sewing, both of which made the knot and pain worse. Then in early september I woke up to find all the muscles across my shoulders and neck strained and in spasm. I couldn't move my head in any direction wthout extreme pain. The doctor prescribed cocodomol but I had an allergic reaction. It seemed to get a little better after several days and I went back to work tentatively but after 2 days at work I woke up ad the same thing happened to the muscles - I felt a big spasm at the base f my neck under the spine. Since then I havent been able to work properly and when I start to feel better I may try something like washing up and the muscles go again and it is extremely painful and immobilising. I often can't move and regularly have burning sensations through the muscles and twinges/ muscle spasms.

The neck pain also radiates up into the base of my skull at the back and I have had one optical migraine that led into a full migraine. I had an x-ray of my cervical spine that was clear, my blood tests for auto immune were all clear apart from I am low in vitamin d and b-12. I have been taking supplements along with naproxen and paractamol for a month on Monday - I thought they may be working but the muscles went again on Thursday and I haven't been able to do anything since then as it is so painful. My neck regularly feels like it is too weak to hold my head up.

I haven't been able to work or live normally for 3 months but I have had some of the symptoms My doctor originally said it was a trapped nerve but my brother has ankylosing spondylitis so they have forwarded me to some specialists although they all think it is something different as my symptoms are not common with this illness. I have seen a physiotherapist regularly who said she can't see anything wrong and referred me back to my doctor. I have also seen a rheumatologist who said the same thing and is sending me for an MRI although she said it is unlikely anything will show up.

I have also seen several chiropractors, an osteopath and another physio, a counsellor and a mindfulness practitioner none of whom can see or feel anything unusual apart from really tense muscles. I am only 31 and can't do my job properly. I am unable to do any cleaning or anything physical at home as the muscles are too weak. Has anyone else had these symptoms or have any suggestions of what it could be? I am desperate to live a normal life again.


  • TJbergTTJberg Posts: 1
    edited 12/10/2015 - 3:30 AM
    Hi madel-co, sorry to hear about your struggles. My wife has been dealing with something similar over the past two years and she has been struggling without a diagnosis as well. She has done countless hours of physical therapy and x-rays and ultrasounds but the doctors cant find anything wrong with her. We've done tons of research and based on our findings, we think it could be Spasmodic Torticollis. Have you heard of this? This disorder is more so for muscle pain in the neck. The symptoms all match my wife's pains and struggles. It has been extremely stressful for her because she has difficulty working too, and she is only 28 years old. And unfortunately stress does not help at all as it tenses up her muscles. It has been very heart breaking watching her struggle in pain.

    I hope you are able to find some relief and some answers. My response is not necessarily providing you with any answers, but I figured I'd let you know that you are not alone. I suggest continuing to seek help from doctors. All the best...
  • SavageSavage United StatesPosts: 5,433
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