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I am not on here much and I miss the site helped me a lot but I can say since my injury in 2011 it's been a very tough road I am only now fully diagnosed and under proper care and beginning proper medication. When I was paralyzed for a short couple of minutes in my upper torso after the injury I had my first panic attack of my life which started a long year of waking up not being able to breath and in panic attack. My thyroid levels were way off and that was to blame for anxiety increase, but as we discovered my autonomic nervous system was damaged this all made sense since it controls heart rate and all those uncounsious things., my sympathetic nervous system was out of control. But I noticed when my pain was really at its worse and out of control I just would relive the panic attack and feeling like I could not move my arms, I would replay all the bad stuff that occurred as a result of that injury through my head over and over. The loss,, the pain , the doctors refusing to help . It was a record I could not stop and it played louder the longer I suffered and worse I felt. I then began to dream about it and talk about it uncontrollably , that day that I lost everything, I could not stop. But as pain went down so did these issues. Now that I am in good hands first order was begin to get pain under control, and based on having a lot of difficulty with comprehension of basic things I used to be good at we targeted my mental health. I went for a while to a physiologist who treated me pharmalogically , but as I began to talk about my issues she clued in on something and asked some questions and requested I be evaluated for PTSD. Now I've heard this before and thought maybe , but it was like hearing so many different things over years that are proved not to be the case. But upon evaluation, it turns out on top of all the validated , test proven medical issues , I had developed PTSD but a strange way it formed in my mind all that occurred after is linked back to the initiating event and building upon itself. I was at first embarrassed because you think soldiers when you hear PTSD, and I still wouldn't tell anyone outside my circle about the diagnosis. When you have to talk about the worst years of your life you realize shoot I lost a lot of my health, independence, a 13 year relationship, all my work in school, I tried to hang myself because Drs made me think that I was crazy that I wasn't in pain and to escape pain, I dealt with increasing worst pain I had ever felt year after year until recently, I lost touch with most of my family and godchild , lost all my friends all due to this one event in my mind., lost several of my normal bodily functions, and so much more, I call it a dehumanizing experience. It's overwhelming to live it but to talk back through and hear it is almost more overwhelming than living it. I never dealt with anxiety or feelings like this after first injury so it's hard to believe I would after another injury. But trama is cumulative I've learned. So I just wanted to put that out their for one to others who suffered traumatic injury to consider this could be involved and I always believe you need mental health to beat pain and another reason is to say that the phsycologists believe one of the largest contributors to the mental issues where they have gotten is lack of proper pain care that allowed me to spiral and the discounting of my pain that I turned into hate and guilt against myself and my body for a period. Take that for what you will it's not dr bashing it's personal experience recounted by physiologist , but I know the treatments are helping me feel human again but I can say they wouldn't work if I would not be first diagnosed properly and second the amount of pain I was in is just ever so slightly being brought under control with the option at my disposal to go where I need to for quality of life. Hope this helps someone. I was lucky enough to find a team that got to the bottom of my physical issues and offered help so then I could work on my mental ones the pain had been causing. That's my wish for all the people searching and suffering for diagnosis
Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.


  • I understand just what you mean by a multitude of different life crisis's, frustration with the medical field not listening. It becomes all too much for any human to bear. I was diagnosed with PTSD also. While there were many issues leading up to that, finally divorcing an abusive man and big problems with the medical field during my health crisis put me over the edge. What exactly are your medical issues now? And, what is the pain from?
  • Max_LeeMax_Lee New York, United StatesPosts: 269
    It really is dehumanizing when your pain is out of control. It's terrifying when you can't move, you're in pain, and no one seems to listen to you. I still have problems with replaying the night my pain was at its worst, just as you said, over and over again. I was marginalized, I was told I was faking, and my pain was barely controlled until last month. Finally asked for help, which wasn't encouraged by my family and was hard after BCT (Privates definitely face hostility asking for help, and it's funny I had trouble asking for help after begging others to ask for help when I was in) to even admit I was having problems.
     "The loneliest people are the kindest. The saddest people smile the
    brightest. The most damaged people are the wisest. All because they do
    not wish to see anyone else suffer the way they do.''-Anonymous

    My Story: http://www.spine-health.com/forum/discussion/90688/pain/neck-pain-cervical/help#latest

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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Kay, I am sorry to hear you are suffering from it also. I have been on here for a while intially with a T6-7 disc herniation and annular tear at T5-6 from injury 15 years ago, that is under control , but as that part of my life was coming undercontrol I suffered a mild spinal cord injury that turned my life upside down, led to issues with the autonomic part of my nervous system malfunctioning, small fiber neurapthy most likely due to circulation issues from previous, and worst of all i was recently diagnosed with central pain syndrome from spinal cord injury, its same as post stroke central pain. It is something I never imagined existed a pain and feeling like this, the majority of my pain is in my lower neck where the spinal cord injury occured, my hands, and feet are the worst parts. The extremeties feel as if they are being burned off with dry ice when its at its worst, cold but burning. My skin will die and nails die during a bad flare on right side due to lack of circulation as body nervous system is messed up from the injury and creates circulation issues. Luckily i finally have the full team needed to treat this and try to give me the best quality of life possible, it only took 4.5 years a teaching hospital and a suicide attempt. I say that jokingly , but seriously at the same time as the pain and doctors ignoring my plea for help, not pills, help finding out whats wrong literally dehumanized me to that point, a point that I woke up from a dream and was attempting it felt like luckily, I didn't care , my most primal instinct said get out of pain however you can right now. I was also treating the depression brought on by pain at that point, but the pain just overtook everything and I was at a point where I said I am either crazy and I am going to live this way forever or there is something wrong with me. That weak moment I felt crazy was enough to cause me to make a stupid decision, but outside of that I trust myself that I know my body best and that has literally been one of my life savers to keep pushing. When I was finally fully diagnosed, I still would talk about my issues and end with "I know that sounds crazy". My doctor had to tell me that we now have physical proof something is wrong with you, something very serious, it only sounds crazy to the unexducated about it and there is no more doubt you have to stop talking like that. I just had done it so long because of the experience up to that point , I didn't know how to let my guard down and be understood rather than doubted or a confused look. Its just a very sad part of life for anyone with certain neurological or other things hard to diagnose in health, so many years of unanswered pain and suffering without a diagnosis just leaves you broken. I had all the best means to see the top doctors and it took that long. I have to help end this , I don't know how , but I have to do something. Because so many stories end as mine could have and they would have never known that I was right in feeling something was wrong. I hope to get my life straight and set up something that assists patients without the means, who are in the years of suffering without a diagnosis, the option to pay for them to travel/stay and go to a teaching hospital and be evaluated to help. Again don't know how , but I hope I can one day.
    I will leave you with a two statements by a very well know end stage and everyday cancer pain management doctor and advocate for proper pain management.

    "However, Dr. X did have a personal interest in physician-assisted suicide. “Throughout my career, patients who were in severe pain have asked me to end their lives. But when I relieved their pain, they no longer wanted to die. Therefore, I felt that lack of care was the main driver behind most suicide requests,” Dr.X said.

    "We frequently see patients referred to our Pain Clinic who request physician-assisted suicide because of uncontrolled pain. We commonly see such ideation and requests dissolve with adequate control of pain and other symptoms, using combinations of pharmacologic, neurosurgical, anesthetic, or psychological approaches."
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Wow. I have never heard of Central Cord Pain. You are so right in that you have to listen to your body and mind and not give up until you get some answers. I am so sorry the pain was so unbearable. I have had my share, everyday but different things. I too have spinal cord damage as I developed Cervical Myelopathy the day after an Epidural injection. I had C5-6<C6-7 herniations after a skiing fall and went through hell getting properly diagnosed. And, most of it was corruption as specialists did not want to go there because of the epidural. There are no documented cases such as mine and now I know why! I have had 3 neck injuries since my surgery in 2009 and also have Thoracic cord compression and Lumbar issues that give me leg pains. I know exactly what you mean about just feeling such despair because suffering is horrific. And, with spinal stuff you never know what's gonna pop up next. If the left side of my neck goes into spasm my Myelopathy stuff will come on full force and it's scary. No one can touch my spine!! Having no control is another problem. Letting go of that is hard! What I did with my last PTSD episode is I felt really suicidal just as you have and to get that thought "out" of my head I took a Flexeril (wanted to take the whole bottle) to sleep it off. I had to drink a few beers to get sleepy as this was the day time. I think medical issues and fighting the system for answers adds to the traumatic event you went through to begin with. There is nothing more frustrating as not being heard! Thank God you have answers and treatment. What controls your pain now and how did you injure yourself? I am impressed with your perseverance.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Yea Kay it's pretty crazy that the area of the cord damaged can cause such things. A central cord injury can paralyze arms but leave legs unaffected or less affected. Nerves are a strange thing.
    Having myopathy right after a epidural seems odd, did you have cord compression? Adhesive arachnoditis is the only thing I know that would cause myopathy after epidural injection unless mechanical injury during injection. Was this your diagnosis?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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