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Chronic head/neck/face pain for 10 years and no diagnosis

Hello to all,

This is my first post in the pain area so I will describe the issues I have been dealing with. I am nearly age 54, I currently use advil and an occassional muscle relaxer. No other meds I have tried, and I have tried everrything from morphene down including anti-depressants etc, have helped improve my quality of life.
At age 23 I began having some neck pain on the leftside lower cervical spine and radiating down to the scapula area. I was very healthy, fit and active. This subtle deep pain would come and go for over the next 21 years and a few times I saw a physician and twice did some PT. No improvement but not debilitating and mostly bothered me for short periods of time. In 2005 I had my first MRI and it revealed a buldging disc at c-6. Not bad though so I did nothing further but just kept exercising. In January of 2006 it began spasming every month for about 3 weeks then would begin to heal and do it again. July of 2006 it hurt so bad that I decided to get some help. I ended up in PT with traction and strength exercises. By October of that year I began to feel something I had never felt and it was depression. In December my pain became worse as one day while steretching at home (flexion stretch) I felt a significant POP in the upper right cervical area follwed by a bi-lateral spasm from top to bottom. Wow what I thought could not get worse did. It continued to worsen over the next 2 weeks and then one day my entire head and face began to feel as though it were in a vice grip. I began puking uncontrollably and squirming in massive pain. Off to the ER. The ER ran all kinds of tests and films including a spinal tap and then my heart went into AFIB so off to the ICU due to very low BP and high HR. Two days later out of AFIB but head/neck and face still in a vice grip. Released from the hospital on day 5 no meds, I was told I now have headaches, but wait you people don't get it no one can live with this much pain. Sir, can you walk? Yes. Then it's time for you to go. One week later back to ER because of vomiting and pain for the past week. Now steroid injections, morphene, percocet and whatever else they could throw at me. MRI and head CT showed no reason for the pain I displayed. Since then I have been to many traditional doctors, Integrative specialist and spiritual healers. Nothing has made a notable difference in my pain. I became unemployeed and my married and family life was at risk of ending. For the next 6 years or so I simply sat on the sofa with ice or heat and watched TV or read a book in between doctor appointments and intense bouts of puking and crying.
Over time I think my body has adjusted some on it's own and I am not in as much pain however if someone with no pain experience felt what I feel now they would be freaking out as I did when this got intense. I have had numerous films and they have been read by numerous radiologists. Also had Prolotherapy, Prolozone, Amniotic Stem Cell injections, PT multiple times and so much more. I don't feel that this is a ligament issue but rather a tendon near the nerve cluster of C-2 or C-3 cranial nerves. I have had referred pain all over my body down to my feet including the hip, knees, lower back and mid back. This will come and go. For example about 3 months ago my right jaw (TMJ) decided to spasm and will not close to chew food sometimes. The tightness in my neck, head and face are still present just a lower intensity. In the first five years of this I planned my death three times and one of those landed me in the hands of the white coats. That was horrible. The past few years I have worked very hard on strenghtening my mind to be able to withstand the constant head pain and now occassional puking. i look for reasons everyday to keep moving forward and I don't feel depressed anymore but I am often sad for brief periods. Any guidance of how I may help this heal would be welcomed with open arms. I am looking for a better way to image the cervical spine to locate the source of injury and I do suspect that that disc buldge will need to be dealt with but only when I can see what is causing the bilateral spasming throughout. Thank you for your support.
Greg Thompson
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Comments

  • HaloKitty2332HHaloKitty2332 Posts: 4
    edited 01/28/2016 - 7:19 PM
    Wow I'm sorry :-/ I have Rheumatoid Arthritis in just about every joint in my body, so I feel your pain. Or at least understand what it's like. Are you American? Have you tried going on SSI? It's not much money, but it'll help you get by while you can't work.

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    Liz, Spine-health Moderator

  • Thank you for your reply, no human should have to live with chronic pain.
    Years ago applied for SSI and was turned down. I did not have the energy to fight with them so I never went back. Now that I can work part time I earn more than SSI and I would not qualify. My wife works and we have savings that we have beeen using to support us so fortunately money is not an issue at this time. My main interest is finding a way to heal this injury.
    Greg Thompson
  • good day
    have similiar problems as you, headaches lasting 36 hours and first nine of constant vomitting, symptoms come and go, never had proper diagnosis other than chronic pain syndrome. few weeks ago found on this site a definition of Myofascial Pain Syndrome, check it out. Can spaek from a decade of experience every single health care person and physical therapists where I live don't know squat about it, even argued with one last week who insisted it was fibromyalgia only, they never understood what I'd say about the "pain". Not suggesting this is your diagnosis but check out this myofascial pain syndrome, all physical therapy up to today has only run my body into the ground, exercise the pain away attitude. MPS causes severe muscle contraction and tightness, can screw up your nervous system, produce confusing and sporatic symptoms all over your body, only therapy is to release the muscle and "trigger points". Recently stumbled upon two techniques myself that help ALOT.
    I feel for you as I have in the last year wished I wasn't alive either, more than once all while in physical therapy, don't give up , keep fighting.
    Mine was stared with herniated disc in cervical spine, too much "muscle gaurding" over the years turned into MPS which is spreading in my upper body, mostly due to being exercised into the ground by PTs who never heard of MPS or think its the same as fibromyalgia.
    Not putting physical therapists down but they don't know everything, in my small city most only know how to treat acute injury not chronic conditions, as a result of a lack of proper diagnosis its been a decade of hell, you are not alone.
  • rtconant1rrtconant1 Posts: 348
    edited 02/03/2016 - 7:56 AM
    I have been where you are pain wise. I may not have been in it as long though. I had started mine about 6 yrs. or so now with pain in my head, neck and shoulders that seemed to always get worse without ever looking into why it was happening. I would go to the doctor and then they would send me home with anti-inflammitories and muscle relaxers and tell me to rest for a couple days. I finally got a chiropractor to listen in 2014 and found that I had a severely herniated disc in my neck. I was pretty much rushed into surgery within weeks to take the pressure off my spinal cord and fuse my C5/C6. It didn't solve my pain problems because the damage was already done. I had thought the pain was bad before and just after surgery but it was nothing once the headaches started getting really bad. I would sit and rock and hold my head and cry and pray and beg for God to take me away from the pain. I called the neurosurgeon for help and he put me back on the muscle relaxers, prescribed gabapentin, and an oral steroid which I can not take anymore due to allergy reasons. I also started seeing a physical therapist who did dry needling to try to help it ( it made it worse for me but it helps some people) and other exercises. They helped some but not for the headaches. I also started seeing a neurologist who started doing countless tests to find out why these where happening. They ruled out MS and other diseases although I don't feel they really gave it much thought. I have come close to vomiting through all of this but I will do everything I can to keep from vomiting. LOL. It makes my head hurt worse.
    It seemed like we were getting things under control for the most part until the end of August last year when I had an incident at work where a roll-up overhead door came down and hit me on top of my head. I had a bump cap on but it smashed it down on my head and left a big bruise at my crown. The whole thing was a cluster with supervisors and safety managers and I couldn't afford to fight it. I ended up with a concussion, a change in intensity and frequency of headaches and medical bills. If I didn't have kids to keep a roof over their heads and food on their heads, I would have quit and hired a lawyer to sue their butts. I'm not a sue happy person either. I have had tests since then and also a IV infusion. Now I am back to having excruciating headaches. Sometimes I can barely see. I wear sunglasses because its too bright even when the sun isn't out.
    I feel your pain and I am sorry you are going through it. I don't wish this on anyone as well.
    Tracie C
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