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Autonomic dysfunction and small fiber neurapathy from cervical injury

itsautonomicitsautonomic LouisianaPosts: 1,806
edited 02/16/2015 - 11:31 AM in Neck Pain: Cervical
I was asked to start a topic describing my diagnosis and issue from it so I started it here and even though some of my diagnosis will cross over it originated with a cervical neck injury. ( I previously had thoracic herniation and tear from injury). The best way for me is to just discuss it a bit and then copy over a list I was asked to make for a teaching hospital showing progression, while it may sound crazy I would just give it some time and understand the diagnosis first. It took 3 years and many doctors and eventually large teaching hospitals ranked tops in neurology to find issue and many , many tests, some very specialized and rare.

My story is I was playing with godchildren in pool and suffered neck injury, a couple hours later lost feeling in both arms, but shortly regained. The doctors now recognize that was a cord injury with swelling of some type, but as I gained feeling shortly after and had test for school next day I did not go to ER for which treatment would have been steroid infusion. Once the cervical cord is damaged or impacted it can cause things to go haywire internally in some people. This began all the symptoms I will list . The treatments I have been through ( many of these before diagnosis ) are physical therapy, multiple alternative therapies to deal with pain, multiple medications, many spine ESI, facet injections, and steroid shots, hypnotherapy, yoga, diet. The testing I have been through is 7 EMG/nerve conduction tests ( only test large fiber nerves so would never reveal small fiber issue), 2 brain MRI, muscle biopsy, QSART testing, sweat testing, punch biopsy ( measures then density of the small nerve fibers ), many MRI of spine, CT, evoked potential, fasting glucose, so much blood work couldn’t even describe each place testing same things and more than last, spinal tap and several ER visits. All MRI normal wear and tear and already existing issues we knew about, nerve conductions / EMG all normal, CT normal, fasting glucose normal, most of blood work early on normal, brain MRI normal. I have been suspected of having MS, muscle disorder,muscular dystrophy, lyme, fibromyalgia, CRPS, and all of it in my head before being diagnosed.

My official diagnosis is :

*cervical myelopahty
*sensory neuropathy ( small fiber neuropathy ) [ Diagnosed with QSART then confirmed with punch biopsy ]
*disorder of the autonomic nervous system [ diagnosed with QSART and sweat testing ]
*myelopathy due to another disorder [ suspected B6 toxicity diagnosed with blood work ]
*likely central sensitization
*herniated discs in thoracic and cervical along with annular tears in thoracic

The rare ones to spine health would be the autonomic dysfunction and small fiber neuropathy. In short autonomic nervous system is made up of the sympathetic and parasympathetic system and is in control of everything your body does autonomically ( on its own ) from muscles to glands to organs , the autonomic system controls them all. Small nerve fibers that control function in blood vessels, organs, pain sensation (sensory function) and temperature sensation to name a few. That’s a short description for complicated things to keep it short.

Autonomic dysfunction and small fiber neuropathy have no cure if no underlying reason can be found to treat, what you hope for is that an underlying issue can be treated that is causing the problem. Small fiber neuropathy normally progresses, but can be slowed with early intervention. Unfortunately there is no a great treatment for it as more studies are needed in both medical and alternative treatments. Pain management is an important component because its sensory nerves that are damaged. In the case where small fiber neuropathy is present with autonomic issues the pain management is tricky since the nerve medications act on central nervous system and in turn many times causes negative effects on already present autonomic dysfunction. Children often get autonomic dysfunction in teens known as POTS, which is a bit different than mine, but similar in many ways. I know a friend whos little girl has it from black mold exposure and there is a doctor down in florida who was highly respected doctor and lost his practice after autonomic dysfunction entered his life, he now treats part time focusing only on autonomic patients.

Every doctor that I have seen that is aware of it ( very few have treated patients with it ) has said it is very difficult to treat and even understand all the parts of it. I am told autonomic issues and small fiber issues can be present in paralyzed people due to the cord injury.

The interesting thing about small fiber neuropathy and autonomic issues is several big doctors are studying it for involvement in things such as fibro, CRPS, post traumatic stress syndrome, spinal cord injuries. Many Vietnam soldiers developed these issues after Agent Orange exposure they are finding out now as reasons for pain and wasnt fibro.

I am still hopeful some of the underlying stuff can be treated and I may heal, but for now it’s been a really tough thing to deal with. As of now I am on nerve medication trying it out , muscle relaxers, beta blockers to increase circulation to extremities, high salt diet ( supposed to helps autonomic issues), scheduled for steroid infusion ( 4 day ), sensory rehab at spinal cord rehabilitation place in Houston , possible ketamine infusions down the road, and I am wanted to do 3 week in house pain management and coping course at teaching hospital to cope and get handle on pain with combination of stronger ones but when I do that I may have to give up my job ( safety sensitive ) and I want to explore every option before that.

Autonomic dysfunction and small fiber neuropathy can be mimics for so many things and that’s why when someone says the doctor said fibro I am about 99% sure they have not had testing for these two things and why I always ask if all testing has been exhausted.

I know its long but I have already met about 3-4 people with children with autonomic dysfunction or small fiber neuropathy here recently and I hope this may help them as I am lucky to have alot of options with my work schedule and company I work for to get to the top teaching hospitals to find out what wrong . I am very familiar with it, I spend alot of time reading , searching for things that will help and I am familiar with most of the top hospitals that deal with the autonomic testing.
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.


  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Beginning (0 – 5 months )

    1. Injury to neck ( lost feeling in both arms for about 5 min approx 2 hr after injury , had first panic attack of life cause could not move arms )
    2. Next day: Right arm numb , right side of neck in pain
    3. Pain began to increase to levels never felt before, began to feel confused on easy tasks, very emotional
    4. Start of sexual dysfunction but assumed was because depressed
    5. Neck joints felt like shift all the time and head very heavy
    6. Sitting on toilet my legs would go numb
    7. Felt like a rock stuck in lower spine cutting off circulation
    8. Shoulder seemed to almost dislocate in sleep and would be tingling in morning
    9. Started to feel tearing feeling in certain parts of body when move or stretch

    Middle ( 5 months – 2 years )
    1. Started to experience :
    • Sexual dysfunction ( ED, premature ejaculation and burning when ejaculate)
    • Vision ( shaky eyes, blurry vision )
    • Bladder/Bowel ( could not hold bladder back and several times had accidents with bowels trying to)
    • Cognative issues ( hard to do simple tasks like send email, get very frustrated and hard to concentrate or finish tasks. Seemed like drive, organizations skills and determination were gone )
    • Pain ( Increased to many parts of body, sore all the time )
    • Neurological ( numbness and tingling increasing, spasms, pulsing feeling thru body, crawling feeling in right side of neck, body sensitive to light touch)
    • Body functioning ( right arm felt as if not connected and did not work sometimes, right arm asleep when wake almost feels out of place so limp, legs felt spastic, joints felt sore/stiff and as if they rubbed when moved, hands shake, balance off, legs and arms felt very heavy )
    • Mental ( depressed and wake up with axiety/panic attack, could not breathe, hard to form sentances and speak at times )
    • Skin and nails ( nails on feet began to change, skin began to die on feet ????)


    • Pain at all time high
    • My heart hurts and feels fluttery
    • Joints feel stiff and as if they shift causing pain
    • Cognative issues affecting job horribly and the smallest tasks seem overwhelming
    • Hands and feet literally feel burnt most mornings, burning getting worse. Don’t seem to do what I want them to do.
    • Right arm and feet feel so cold
    • Fingers on fire to do anything in right hand
    • Start shaking when talking or in room that’s colder
    • Feel as if I am moving like a robot to do things
    • My body/mind just don’t feel like me they are off
    • Right arm feels dead at times and does not respond, feels so cold its hard to move hand


    • Sexual dysfunction improved, not cured
    • Balance feels improved
    • Legs feeling like want to collapse seems better
    • Morning panic attacks have gotten better
    • Vision no longer blurry, still shaky feeling behind eyes
    • Pulsing seems to be better
    • Don’t feel as spastic
    • No more accidents with bowels

    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.
  • Reading your post was very close to reading my son's medical history. He has a dysautonomia called POTS(Postural orthostatic tachycardia syndrome).
    Things started happening when he was 12. He was playing in a soccer game and was hit in the back of the neck by a soccer ball that had been kicked. It hit him hard enough to drop him to the ground. He was dazed. He had neck and arm pain. We were advised to go to the ER. A CAT Scan showed no fractures.
    After still having neck and arm pains we went to Ortho, had MRI done and it showed a small hnp but nothing significant. He was also a skateboarder so the Ortho said it was prob just strain. Not long after he developed concentration problems. He went from an A student to barely passing. Saw a nuero and he thought it was due to a concussion from the soccer ball hit.
    Then all sorts of problems started. He was having more back pains, they said he prob also injured his thoracic spine when he fell after being hit by the ball.
    2-3 months after the c-spine injury we are now seeing, a nuero, ortho, gastro, and an Endocrinologist. We were told he may have Everything from MS to Marfan's syndrome to eating disorder, and last I was told he could be on drugs. After 2 years of this I couldn't see him suffer anymore. He went from a competitive athlete with straight A's to a kid that was skin and bones and now on home schooling. I drove 1000miles to one of the largest teaching hospitals. After 5 days he was diagnosed with POTS. The believe the neck injury caused his autonomic system to go off kilter. That's why just about every system was involved after the injury. All the problems were related.
    Every symptom you listed he has had past or present. So since there is no cure it's all about treating the symptoms.
    Outside of the Qsrt and biopsy he had all the same testing. He has not been diagnosed with SFN. 10 years ago they weren't looking at that. It's only been in the past several years has that come up in the Dysautonomia world.
    Now my son is 26 he had to learn how to deal with the constant pain in his spine and arms and legs. And he had to adjust to what they call "brain fog".
    Over the years we have met many other people that have developed POTS after a c-spine injury. Most go years undiagnosed. Just in the past few years they started teaching about it in med school. There are a few institutions that are doing research but the end result is still the same ....no cure only treatment of the symptoms.
    Again I'm sorry you're going through this. And I'm glad there is a thread on a spine site about this. Because for so many that's where this all starts.
    I know my post was a little confusing but there is no easy way to explain dysautonomia. :(
    Entering Uncharted Waters
    L5-S1 Microdiscectomy & Laminectomy on 1/26/2015
    Started Physical Therapy 2/10/2015
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Sandra, I am very sorry also that you and your son have to deal with this. The amount of doctors for all the symptoms is nothing short of overwhelming, this has been by far the hardest thing I have ever faced. I would say the congnative issues are at the top of my list of worst parts of this, for me this was so dramatic as one minute I am an engineering student in last semester and the next I am struggling with simple math. For me it was like reaching into a tool box and the tools you had to do the job are gone, was and is very difficult part of it. congtributing to that is the fact that my ( and your son most likely) sympathetic/parasympathetic system does not regulate the stress response correctly normal axiety is devastating as it spirals out and makes concentration terrible .
    I am glad you posted here so that maybe our stories may help another. I can tell you have done alot of self educating on the disorder and I commend you for the support you have for your son and pushing through to find the answer to his suffering. Many don't ever get to where your son and I were diagnosed.
    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 believe paths cross for reasons. When I came on this site, it was because following back surgery I discovered my recovery was going to be more painful and longer than I anticipated.
    So I've been reading post looking for a bit of info that might help.
    Reading your post and then writing mine, reminded me that compared to all that my son has gone through and continues to battle, this is a bump in the road for me.
    He complains so little I forget sometimes the hurdles he overcomes every day.
    I can empathize with you about the cognitive issues. My son had to change his career path because he could not keep up with college. He stopped in his third year. A couple of years ago he decided to go to a technical school and become a car mechanic. After graduating he has gone through numerous employers because he makes so many mistakes.
    But he keeps trying over and over.
    He finds the only way he retains what he reads is laying flat with his legs elevated. It works.
    And the anxiety....is crazy. Thank goodness his psychologist knows it's due to his autonomic system vs normal anxiety. So his techniques are different. The thing that helps him the most is a strict schedule. Plenty of sleep, exercise as tolerated, meditation, and brain stimulation. He doesn't go out. He just works hard to get through the day. And as you mentioned the pain is tough. He can't take anything for his neck pain. All the nerve medicines are contraindicated for the autonomic symptoms.
    How do you do it? Get through the bad days?
    Deal with the brain fog and anxiety?
    Thinking about all this really does make me view my back surgery recovery in a different light.
    Entering Uncharted Waters
    L5-S1 Microdiscectomy & Laminectomy on 1/26/2015
    Started Physical Therapy 2/10/2015
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    I don't get through it, everything I have is hanging on by a thread in my life. I reached a point during the doctors can't find out what's wrong phase where I hit rock bottom, I was on fire, across my body, felt crazy, was being told it's in my head that I did things I never ever could have imagined I would have, I am thankful for finally getting diagnosed everyday , that to me saved my life. But I have failed tests for work that were easy compared to what I did in college , the axiety was enough to freeze me for hours and I was already on high doses of Xanax. It took my physc a while to understand it was autonomic as the increases of zanex did not affect me one bit good or bad she said there is no way that should be happenening but as with every doctor I see my neuromuscular doctor is amazing and she wants to speak to each one and explain my disorder so that they understand what's going on. This has helped a ton . I approached max dose in no time and choose to get off it cause I literally didn't notice any change, physc said most of my patients would not be able to function.
    It's been nothing short of embarrassing as I forget things such as names all the time and have to re-read so much to grasp things. People who don't know my condition joke all the time " how are you an engineer", it's funny but hurts since you are cognitively functioning so low.
    Honestly I could not imagine going like this the rest of my life basically living in an alien body like this but I am pretty stubborn so I am hoping we find something underlying that can help me.
    For me I am no stranger to chronic pain as I hd suffered years before neck injury with thoracic pain from injury which was very hard, but with that I still returned to school and graduated in mechanical engineering and a technical degree with many more plans to get masters degree , exercised everyday,,while raising a family ( godchild) and I remenber very clearly going into that final semester my girlfriend and I talking about how we are going to make it through this that we can make it through anything and life should only get easier from here out , then my neck injury happened and my life was turned upside down with the autonomic stuff, that 13 yr relationship ended shortly after cause I broke physically and mentally. I thought I was strong willed but this has humbled me.
    Everyday is tough, but I have a great life right outside this disorder that I want to get to so badly so I'll keep being stubborn and looking for a cure no matter how many doctors tell me I will live with this for rest of life, that is unacceptable to me. I struggle with acceptance but to accept this is to give up on so much.
    If your son ever wants to talk like we do on here there are some forums with people dealing with autonomic dysfunction out there, they are very educational since we are a small group but they are grim as this has taken a huge toll on their lives and treatment is limited. I had to leave cause it's hard to feel you will ever get better when all these people dealing with it much longer have only gotten worse, but I learned a lot.
    Your son can PM me also if ever wants to talk about any parts of it or anything, sports , etc. If I find something that works I will surely let you know. Good luck

    Don't underestimate back surgury, it's tough on anyone.
    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.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    That's pretty interesting about reading lying down, has to be something with blood flow to the brain since POTS typically has issues when upright don't you think?
    I definitely have some work to do with schedule, I do sacrifice days of problems to go out and have a beer with friends. I need it and I accept the consequences. But everything says avoid alcohol so I do for most part.
    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.
  • TWynnBTTWynnB Posts: 265
    edited 03/17/2015 - 4:28 PM
    I wonder if I have a mild form of dysautonomia, it's something I've been researching a bit. In November, while being evaluated by my GP when they didn't know what was wrong with me yet, my heart rate was 118. I laughed and wrote it off to just having coffee. Apparently, during my neck surgery, my heart rate never went below 120. When I mentioned the high heart rate at my 6 week recheck, my PA said I really need to get it checked out. I really didn't want to, with everything I had been through. But, I have children and a career, and I'm tired of being tired, so I guess I need to.
    I'm in a support group for my profession, and another colleague has dysautonomia/POTS, and she told me that she and I have a lot in common. And the more I look into it, the more I realize she's right. And it makes me wonder which of my symptoms are cervical myelopathy, and which aren't. I have rechecks with my surgeon and with my GP this week, I'm going to ask for a neuro referral, if nothing else to get my symptoms (tremors) treated.
    The symptoms I'm experiencing that may be related to dysautonomia (and some definite overlap with CM) include - high heart rate, fatigue, nausea with poor appetite (I am such a foodie, this is very unusual for me!), much worse in AM, cold extremities, and what annoys me most of all - my body about melts down with adrenaline. This is really difficult with my job, because I've always been good under pressure. Now I start tremoring and can have anxiety issues under pressure as well (also pretty unusual for me). I also have burning upper arms and fatigued legs, but that easily can be accountable to CM.
    I thought I'd add this in to your thread, for people that are doing research on other's experiences. It makes sense...my spinal cord was smooshed to less than 4 mm. That kinda makes it mad...

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • sandra 123ssandra 123 Posts: 1
    edited 04/11/2015 - 8:12 PM
    Hi, I found your posts and I'm so frustrated with my son's illness that I could scream, although I know it wouldn't help I might feel better. Long story short...22 year old son hit his head on a ride at a water park. Didn't know about it until 2 months after. After the concussion, son had brain fog, extreme nausea, insomnia. Barely ate for two months, and lost about 20 pounds from his already slight build. This was July of last year. Hospitalized for dehydration in September. Endoscopy showed gastritis and possible gastroparesis. Saw a neurologist, MRI negative. Fast forward to 2015...just saw a GI specialist at Stanford after waiting for 7 months for the appointment. Now she thinks it's neurological and referred him to an autonomic specialist. He has diagnostic testing in May, with a follow up consultation at the end of the month. GI doctor put him on gabapentin, but son complained of stomach pain and nausea. Every type of medication he tries, he has the rarest side effects and feels sick for weeks. He was taking a PPI for the stomach, but after a week and a half of taking it, he stopped due to the flu like symptoms. Took him about 2 weeks to start feeling "better". He feels sick all the time; doesn't leave his room. Has stopped working and dropped out of college the last two semesters Now has anxiety issues and phobias he's never had before. There were a few times when it looked like he was on the mend, but during these times he started taking anti depressants, which gave him nasty side effects. It would take 2-3 weeks before he felt better, so it's been up and down. His head continues to feel foggy, and all he can say is that his stomach doesn't feel right, like a constant gnawing feeling all the time . At his last doctor visit he weighed only 101 pounds. He's 22 and 5'7". When all this started he was about 125. Always thin, but healthy. It breaks my heart to see him like this. I'm afraid he's going to give up and do something drastic. He doesn't have a life anymore and basically lives in his room. All I can do is encourage him to eat and drink to stay hydrated, until his next appointment. I don't understand how he can have 1 good day, then bad days for months following. When I see a glimpse of who my son used to be, it gives me hope...but then the hope is gone just as fast as it came. I can count his good days over the past 10 months on one hand. No one can diagnose him yet. I pray that the doctors at xxxx can give him some answers. I don't know how much more his frail body can take, as he's all skin and bones right now. I'm very scared for him.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    edited 04/12/2015 - 6:42 AM
    I'm so sorry at such a young age he is going thru that. the hospital your son goes to has a very good autonomic dr so hopefully he gets to see him. Autonomic can affect any and all parts of the body , essentially with it you are no longer you most of the time . Iit is not uncommon to have serious side effects from meds because as they may help one issue they can cause autonomic issues to increase which are usually worse than other single issue. When I take cymbalta my entire body temp drops and becomes painfully cold. It's really a terrible disorder without much in way of treatments so fingers crossed that is not it it it's caught early enough. I am here for whatever you need, questions, hospitals , websites, information. But again if the GI referred u to the autonomic dept internally in that hospital you are a step ahead of most with autonomic issues and in great hands. I suggest looking up that dept at that hospital online, pretty good write up story about a patient there.
    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.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Sometimes when you are suffering a setback you re-read earlier list or wrote up you did and realize it might not feel like it but you have come a long way.  Hard to remember and see how bad I was doing at that point. Not doing great by any means but better than I was.
    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.
  • rossrross Detroit MichiganPosts: 21
    what is the autonomic test. I think I need to take that. I dropped ten pounds after he weight lifting experience. I also had gastro problems. My left arm went limp also. 
  • rossrross Detroit MichiganPosts: 21
    Sorry I havent heard from you. I guess I was  very  depressed and probably scared you off. I am now on medication for depression. I am calmer. I took the skin biopsy at the cleveland clinic  Monday Oct 3. So I am now waiting for results. I pray that God will have mercy upon me and allow the test  to be normal. If not I will have to live with it. I do have a question. Are you able to sleep at night. Has  your ability to differentiate between  cold and hot by touching things  ocurred yet. In reading up on this, that is a area of concern for me. I will have my results no later than Oct  17
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Hey Ross, no not scared off at all.  The previous post did not send me a notification so that's why did not answer.
    Glad to hear you had the test done and you did get some help until all this mess is resolved.
    As far as sleeping, I sleep ok but do not feel rested ever.  And the hot and cold is an issue somewhat.  Cold is the real problem, increases my pain significantly.
    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.
  • Max_LeeMax_Lee New York, United StatesPosts: 88

    Oh my God, these stories mirror what happened to me so much that it's eerie. This is mine in a nutshell:

    0 weeks - dropped a 70+lb bag off a truck, caught it, & threw it. Hurt like the Dickens but didn't get help.

    1 week - collapsed in tears in the barracks pain got so bad. Went to get help, was given ibuprofen and a sling as well as PT.

    2 weeks - Even worse pain. Went back & was given tramadol (2 weeks). In pain most of the time and tried to push through it (military mentality - no pain no gain and all that jazz).  

    5 weeks - Collapsed from leg weakness and pain during a road march (50-ish lbs of gear on my back). Taken to clinic and accused of faking to cut out of training. Psych cleared me. Went back to training, arm stopped swinging when I walked.

    7/8 weeks: Lost feeling in rt. arm/hand and lost motor function in hand during road march around km 10. Admitted it to guy in front of me...little Blue Falcon snitched to DS and I got pulled from training and again accused of lying. Placed on staff duty (overpaid janitor, basically) and investigated on charge of lying to superiors. Ordered to sign discharge process papers against my will.

    9/10 weeks: Docs decided there might actually be something & sent me to PM who did EMG &MRI, showing nerve damage, herniations, and bone spurs. Battery graduated and I was sent to another in the same battalion to continue on staff duty while being investigated and processed. Started to drop everything I touched and trip over air. Couldn't even put my hair up - someone always had to put my hair up and tie my shoes for me. 1-3 people would actually talk to me - the others would verbally/mentally abuse me and I was frequently beaten up in the barracks - found a memo in the SMGs trashcan with my name on it. I had a price on my head.

    11/12 weeks - Suddenly lost ability to walk and all feeling in my legs; and screamed for help for 20 minutes before battery figured out I was missing. Dragged (I wish it was figurative - unfortunately, I was literally dragged down 4 flights of stairs and 150-ish yards to a van - to the clinic; where I was yelled at by my 1SG (wish I was kidding about that), not given anything for the pain, and had ice put on me against my repeated pleas not to. Woke up hoping it was a dream - still haven't woken up. Wasn't given any treatment at all for a week. Couldn't sit up without someone lifting me up (and not for lack of trying), couldn't feel my legs below mid-thigh, couldn't walk, could barely pee. Pretty constant brain fog settles in, I can't concentrate on anything and can't put together a sentence well verbally or in writing for hours at a time.

    13-14 weeks? Brain fog. - Friend smuggled out a message to my family, who were furious and literally got Congress to investigate. Put in hospital and given MRI, spinal tap, blood work.

    August 24th - Took my first steps at the glorious old age of 19. Neurologist said my spinal cord may have been swollen and affected my ability to walk. Put 'exaggerated pain response' in record and did trigger point injections. Regained some use of hand in the following days, but still can't feel my fingers.

    August 31st - Returned to infirmary barracks. Still dropping things; hard to tie shoes, write, do my hair; and tripping all the time.

    October 28 - Ended constant drinking and entered PM in civilian world. Still hard to perform tasks involving fine motor skills...still tripping/falling - fell down the stairs with no one else home but the dogs... got up though.

    5 months - Worsening pain despite gabapentin and PT. Sexual dysfunction starts to creep in.

    8 months - Hospitalized for severe PTSD and depression for a week. Barely got out of bed due to pain and weakness.

    10 months - Committed to state hospital after another PTSD/Depression episode. Was put on tramadol to try and manage pain.

    1 year - Harder to know when I have to go to the bathroom - have had a few accidents at this point. Gabapentin upped. PTSD/Depression better managed.

    13 months - Put into apartment and discharged from hospital. Worsening symptoms.

    Today - Can't write legibly without taking 5 minutes on 1 sentence. Trip and/or fall at least 10 times a day. Can't sew anymore, can barely crochet and do dishes because of spasms/no feeling in hands/loss of finer motor skills/ shaking hands. Stay in bed a lot of the day because of pain, but try to venture out and go to the library (books & DVDs for loneliness & boredom), help out with the occasional class, buy food, and go to appointments; even though I get completely wiped out. My sex life is awful and it's putting a strain on my engagement. Have an accident or two per week. Almost constant brain fog (used to be able to gut, redo parts, and reprogram a computer; as well as write software - now I'm lucky to be able to type) limiting what I can do and express (It's taken me like 2 hours to do this post - a year and a half ago it would have taken me 10-30 minutes).

    I've been diagnosed with myofacial pain syndrome, cervical radiculitis and spondylosis, herniations at C4/5 &C5/6, bone spurs, and osteoarthritis. I have nerve damage down my right arm from compression in my neck and reduced motor function and sensation in my hands. Pins and needles in pretty much every part of my body - working its ugly track from my tips into my core. I fall/trip several times a day.The pain and the abuse I had at the hands of my superiors and not getting treated have landed me with severe Depression, Anxiety, and PTSD to the point where I can barely function in 'normal' society - I always think someone is going to hurt me again.  

    Still looking for treatment - no one will touch me locally due to my age and my pain is barely controlled.

    It's so creepy reading this thread and seeing a lot of what I have in the posts.

    Kieran Lee
     "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

  • rossrross Detroit MichiganPosts: 21
    Do you mean hot and cold weather. Do you not have pain at night.  My pain is worse at night. But the lithium has  aided greatly. My pain in the day time is  level 2 or 3. My night pain  is 7 or 8 causing me not to be able to sleep.  Is your pain constant or intermittent. Also one fear  I have is becoming  paralyzed and not being able to work.   But I heard with small fiber the motor function is still in tact.  I will wait and see. Lets hope the test is negative
  • SavageSavage United StatesPosts: 5,427
    Oh my gosh, Max!
    I don't think I've ever read your ordeal spelled out so completely.
    It is absolutely shocking to hear! I can't even image the struggles and the work you put into overcoming all that.

    Wishing you the very best as you continue to recover!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • iskrageorgievaiiskrageorgieva Posts: 67
    edited 10/16/2016 - 9:24 PM
    Hi itsautonomic, I've read your posts since I joined a year ago, and have appreciated your answers before. My story is  waking up with a sore neck after yoga a year ago, and it's been a ride of ups and downs and changing symptoms. 

    As of late, I'm having stomach and heart issues, and re-reading your post makes me think it could be related to my neurological issues. 

    I'm in New York, I've seen 4 neurologists, 5 surgeons, etc. I'm not always the best about articulating my issues, they all think my c3-6 bulging/herniation is not compressing the cord enough to cause leg symptoms. My thoracic MRI mentions "normal signal allowing for a hemangioma at xxx," but my neurologist didn't think that was anything.

    Would you have an autonomic specialist or hospital to recommend in the NY area? My neurologist is an MS expert and for the longest time has been mocking me, implying it's all due to my anxiety. I think he's starting to believe me as I keep struggling, and sent me to an esteemed surgeon who said that it's not clear my symptoms are from neck and recommended against surgery at the moment.

    I hope you slowly get better and find answers, and share them here. Appreciate all you've written about coping, this has been a nightmare that is tearing up career, marriage, time with my children.

    Thank you for sharing, I'll ask for some of the autonomic tests you've mentioned. Wishing you the best.



    • My heart hurts and feels fluttery

    • Joints feel stiff and as if they shift causing pain
    • Cognative issues affecting job horribly and the smallest tasks seem overwhelming
    • My body/mind just don’t feel like me they are off

    + vibrations in my feet, numbness
    + numbness of right arm and hand (intermittent)
    + random nerve "burn" - middle finger, toe, pelvic region
    + random nerve twitching - shoulder, glutes, stomach
    + stomach pain, bloating, constipation (never had issues below, blood and ultrasound  don't show anything)

    + stiff back muscles
    + painful crunchy neck

    +depressed, confused, angry, anxiety off the charts

  • Aaron and Max, do you both have skyrocketing bloodpressure since the worsening of your symptoms? I have noticed that each doctors visit my bp is steadily climbing and nobody addresses it. Last reading a week ago it was 157/107 with a HR of 110 the time before that it was 155/105 HR of 108 that was two week prior. I know chronic pain causes a rise in bp and heart rate. I am also aware autonomic issues effect organs in time. 

    How worried should I should I be if the doctor is not? Just out of curiousity are you guys experiencing this? 
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Munk, my blood pressure is good, but those that suffer the autonomic dysfunction condition known as "POTS" do suffer with blood pressure issues.
    But pain at the level CRPS is at can certainly have effects on things like BP by itself 
    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.
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    My friend Ross here at spine health  was just diagnosed with small fiber neurapathy after earlier neurologists told her she didn't have  neurapathy.  Testing was done at teaching hospital.  You have to always keeps searching as it's better to know than not to.
    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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