Autoaunomic problems
 

My pain is almost to a point that I cannot tolerate, I have full body SFN since 2011, but I have more pain and numbness now in my hands, then I have ever had before, I know that I must up my Gabapentin...but I do have another question about Autoaunomic problems...I hope I ask this question in a manner someone might be able to understand. If you have Full body SFPN and it's very severe, like mine, can your autoaunomic system still be spared? Another words, if a person only has PN in their feet for instance, do they have less of a chance of developing Autoaunomic problems then someone like me who has full body, wide spread PN? Thank you for answering this question for me. Blessings! Jan

My autonomic dysfunction began before my PN. It wasn't until the autonomic stuff worsened that I developed the terrible full body SFN. Is yours idiopathic? I am reading every book and publication on neuropathy that I can. From what I understand and from what my dr. says for many people this just remains sensory with SFN so it does not mean that whatever is attacking your peripheral nerves will also go after your whole nervous system. I also live in fear of what the progression of this thing is.

Hi Healthgirl
 

Hi Healthgirl,
My neuropathy is idiopathic, so far no cause can be found, but my Doctor does suspect that mine may be caused from a vaccine I took in July 2010. It was a Tdap vaccine. I didn't think that the numbness and tingling could get worse, but it has especially in my hands. I also feel like I'm losing strength. This is such a terrible disease, I just hope some of my other nervous system will be spared, but I might be showing signs of Autoaunomic problems. How did yours start? What Autoaunomic problems do you have? How long have you had full body SFN? Mine came on so quickly,within a matter of a few months. Thanks for answering my questions. Sorry you are going through this. Please keep me informed on any information you might find that can help this condition. I will do the same. I haven't met anyone else with full body SFN. Have a blessed day. Jan

My first symptoms were a year and a half ago. I was having a sleep disturbance that would happen just as soon as I was dozing off. All of a sudden I'd feel that peaceful feeling in the first cycle of sleep and then a surge of vibration would come up from my chest/neck and then my heart would race. I was having heart palpitations a lot. Then I started having waves of vertigo and episodes of absolute exhaustion that would come over me and then pass. The only SFN symptoms I had were my left foot and thigh and groin would go numb and tingle from certain positions and my left hand had a bit of an electrical tingling feeling at times. Sometimes my toes in both feet and hands would get numbish when it was anything under 65 degrees. A few times I had random numb spots on my body.The autonomic stuff started happening less and that was it for about 10 months and then I started having orthostatic hypotension all the time. Almost every time i got up from sitting or squatting everything was black and I was dizzy. Then I started having shooting nerve pain from my shoulders to arms to hands and I wasn't able to lift heavy weights or do as many pushups. This lasted about 3 months and kept getting worse. Then one day 6 months ago, I woke up and couldn't move my neck. I had severe muscle spasms in both sides all through my traps. I went to the e room and was given muscle relaxers and pain killers and no one including me thought it was a big deal. Was sent for MRI and orthopedist and told it was 2 cervical herniated discs. Things just kept getting worse with my neck and arm weakness and then 2 months later, I could barely swallow food, still couldn't turn my neck and the nerve pain was shooting down into my legs. Then the muscle twitches, skin burning, wet spots, cold feeling like hot, and more excruciating pain went all over... and here I am now. Right this second is not so bad though, but I did take 1/2 of an oxycodone and 1/2 of a valium to give myself a break. How exactly did yours start?

Mine started with numbness in two of my toes on my left foot, then I had burning pain in my left leg about 2 months later. I couldn't stand for very long or that pain in my left leg would get really bad. About 2 months after that the burning pain started going up into both of my arms. It was so weird, I remember sitting in a chair one night and I could feel
that burning pain traveling up both of my arms, from there things progressed very quickly, the burning stinging numbness moved up into the rest of my body, now I have it everywhere. That all started in May of 2011, I thought that things couldn't get any worse but boy was I wrong, about 4 weeks ago my hands started getting worse, more burning then before, more numbness, and I feel very weak in my hands, my right hand is worse then my left, but I can feel that my left hand is starting to feel the same as my right hand. I'm not really sure what else can be done for me. I just want a definitive answer on what's happening to me, but I wonder if I will ever truly know the answer. I think I may have to increase my pain meds. The only thing I take for this is 300mg. Of gabapentin at bedtime. This drug makes me drowsy so I can't handle it during the day. Tomorrow I am starting a strict anti inflammatory diet, and accupuncture. Am praying that this will help. I am a Christian and my hope is in The Lord, I pray everyday that he will give me an answer to this chronic pain. I will let you know how this diet works for me. Sure hope you find answers as well.

Did a doctor confirm this as a autonomic symptom? The reason I've asked I've had this off and on for YEARS. I also suffer from anxiety and panic attacks so I figured it was anxiety coming on as I was drifting off to sleep. I know several people with anxiety disorders that have this EXACT same thing.

Hi, All... I haven't posted in a while but often read other's posts. In some strange way, I feel I have friends here even though no one knows who I am... but so sadly, many of you know how I feel. "My pain is almost too much to tolerate." I'm truly sorry, Liftyourhands. That's me too. The pain and buzzing, tingling started in my toes, then my feet and lower legs... then the burning too, eventually becoming body wide within three months or so. And stunningly, Healthgirl, you describe EXACTLY the experience I feel EVERY TIME I try to go to sleep. Without medication, I would never fall asleep. I have used the word "surge" from day one with my doctor to try to describe the feeling. I felt like I was having a stroke. In the very beginning, it felt like a freight train running through me but now is this surge... like yours, at the very moment of sleep. Between the ever present burning, tingling, etc., sleeping is really difficult, and then, sadly, at the moment of waking the reality of a life changed forever begins again. Reading this is why forums like this are so very important because it's such an isolating, almost horrific experience that absolutely no one else can fathom.
I know I have had autonomic issues right from the beginning, in the form of the sleeping issues, light-headedness, terrible gastrointestinal symptoms. I lost an enormous amount of weight very fast. I couldn't eat a thing for months with significant abdominal pain. Every test on earth, including a colonoscopy, endoscopy, gastric motility... all normal. But, I couldn't eat anything. Six months or so later, things improved but have never returned to normal and I continue to never really be hungry and have daily stomach pain, though I do eat. Never once has a doctor suggested an autonomic component, and that leaves me confused because it's increasingly clear to me -- a lay person -- that at some level that's part of what's plaguing me. Maybe, fortunately, it hasn't risen to the level of tangible testing, but I worry because, along with all the burning and pain in my mouth, tongue and throat, I am now having significant trouble chewing, swallowing and with articulating my words. My tongue doesn't seem to "cooperate" like it used to, and I have to really work at speaking clearly. I often think this can't get worse; and then it does.
I guess nothing I say really helps anyone except to let you know someone else shares your experiences, affirms you and offers compassion and encouragement through the common thing that brings us here.