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Chronic muscle cramps - Dystonia?

I have suffered for three years with tight, burning muscles in my upper back, between my shoulders, and neck.  I have seen three doctors who seem to think there is nothing wrong besides simple muscle spasms and maybe trigger points.  My muscles are not weak.  I have normal strength and tight, but normal range of motion. Physical therapy aggrivates the burning pain.  I have had some relief from Lidoderm patches and two rounds of Botox injections.

My question is could this be dystonia? Can you have dystonia without twisting or jerking? The burning pain is real, and not in my head.  Pulled muscles would have healed before now.

The pain is effecting my work and family.  
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178107 tn?1315947630
***@****
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Avatar universal
Make up any new e.mail address and post it here..I will e.mail you my openion

   Bob
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178107 tn?1315947630
Bob, thank you. Do you think this is something that may require more surgery, with the issue at C4 and C5? My doctor treats me like there is no way I should be in this much pain. He keeps saying that my MRI and xrays look great. Is there some other test that could be done that might show what is causing my pain?
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Avatar universal
You are welcome
    Bev, I'm not able to sign in (get in) to P to doctore forum?   could you cut and past your question.

     Bob
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Avatar universal
No, I meant no botox at all , because the secondary  effect only is  pain  releiving , while the primary and strong effect of botox is chemical denervation of the muscle!!! why to denervate the muscle if its clinically not proven to have any issue especially you have a neuropathic pain, as I mentioned, and you need to repeat the MRI (worsoning symptomes in 3 years ) and to do an offecial EMG (not the small box EMG for botox) which will show either signs of neuropathy or a myopathy!!
    
     Bob
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Avatar universal
Sorry Bev, I missed your post because I've been going to the patient to patient forum
  
    The right shoulder and neck buring pain sounds a clear neuropathic pain which is either to that unseen  disc?  or a complication of the multilevel anterior decompression, which is reported in the letreture (on one or both sides) due to a traction injury after improving the lordosis as well as having a better length of the cervical spinal column .
    while the postural numbness of the arms esp the 4th-5th finger which are innervated by the C8-T1 sounds more like either  a venous congestion related when lie down (something obstructing the blood flow from the area toward the heart)?...I know that a bilateral phrenic nerve (the nerve to the diaphragm) could be affected and if partial (subclinical) could decrease the breathing strength esp while lying which would rise the pressure in the chest and prevent blood flow from the neck...its all theuretical), or  simply its due to the traction issue I mentioned about C5 which is getting worse when you lie down.

   For the pain management , you will need  a proper identification of the cause before any thing then a plan to manage the neuropathic pain

  God bless
  Bob
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Avatar universal
Bob,
Thanks so much for the advice.  I should have included in the post that I had an MRI when the pain started three years ago.  The MRI revealed nothing significant or abnormal.  The Lidoderm patches are 5% and do offer some relief.  

I have had two Botox injections 10 weeks apart, but the neurologist did not use an EMG machine.  Should I be concerned that the Botox was done without the use of EMG? I have read in my research that this is important for properly locating the muscles that are in spasm.  There is a neurologist about 50 miles away from me that uses the EMG when doing Botox, but he requires a referral.  Hopefully, my current neurologist will not be offended by request for a referral.

I am going to ask the neurologist who did the Botox about a CT myelography to look at the neural foramina (the opening on each side of the vertebrae for a nerve to exit) which may not get picked by an MRI and the other things you mentioned

I am at the point of pure frustration.  The doctors that I have seen want to treat my symptoms, but not offer a real explanation or diagnoses for the burning pain. If my MRI did not reveal anything, and you do not think that I could have cervical dystonia, then why have the muscles hurt/burned for three years?
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178107 tn?1315947630
Thanks Bob, I left you another question on the other forum when you get a chance.
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Avatar universal
Hi,
Your question is could this be dystonia? No
In Neurology we divide the pain by its pathophysiology into:
1- Nociceptive type (caused by injury to body tissues meaning the muscles,  
  joints, skin, viscera..ext)
2- Neuropathic pain (Caused bay an injury or a potential early irritation of the  
   nervous system (from the peripheral nerves up the spine to the brain)
Whenever a patient mention a burning pain or electrical shock like either spontaneous or by moving  we always think of a nerve irritation, so I do agree with the post before me of doing MRI of the C spine and even it turned to be  normal  you should  do an EMG of the muscle to see if there is any sign of denervation (or at least if there is a myopathic changes , meaning its a muscle issue) which means you would need CT myelography to look at the neural foramina (the opening on each side of the vertebrae for a nerve to exit) which may not get picked by an MRI.

Can you have dystonia without twisting or jerking? yes
Dystonia is a sustained contraction of an agonist and an antgonist muscles (muscles meant to do different jobs ) at their peak simultanously, so if one contraction is stronger then the twisting occures...on exam you could easily tell the stiff (early in the course) or the  hypertrophied (late in the disease) dystonic muscle

The burning pain is real, and not in my head. Pulled muscles would have healed before now.?
Ask your doctor about apharmacological way of treating neuropathic pain (Like Gabapentin which is best tolerated, Topamax, amitriptyline...ext) before proceeding with Botox
   About topical agents:
  1-Lidocaine patch is it 5%?   benefits are moderate, and combination
    therapy with other drugs is often necessary plus should be applied to intact
    skin and to cover the most painful area...hard!.

    2-Capsaicin, the active compound in hot chili pepper (will need at least 4 to
       6 weeks to start the full desired effect). May cause coughing , Skin  
       stinging  the first week of therapy

      God Bless
      Bob
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178107 tn?1315947630
Have you ever had a MRI of your cervical spine?  Sometimes bulging or herniated disks can cause burning in your neck and shoulders.  I recently had a two level ACDF due to herniated disk and that was one of my first symptoms.Good luck.
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