Small fiber and autonomic neuropathy

[bamagairl]

Good morning. I am a 32 yr old white female who has had so man y problems the past 10 years.I have worked consistently since I was 14 and put myself through college to get my degree in Accounting.About 10 years ago I started getting horrible migrainees,waking up with jaw pain, stiff joints and it felt like I had water in my left ear.This went on for days and I continued to work.  About 6 months later I began having sore ribs and stomach problems,like nausea cramping and diarrhea-kept working. A few weeks later I started getting really tired and needed a nap on the weekends.I was running low grade fevers with chills, but they would come and go. I has swollen glands in my neck,jaw,groin and axillary areas.Later I began having "sleep paralysis" and waking up with my whole body burning like a sunburn.Finally, I was having tachycardia and dizziness when I stood up and horrible surges of tachycardia while lying down and mt feet, thighs and knees were turning a purple color when I stood up.When I finally went to the dr he did a ton of tests.All were normal except the holter moniter, sinus-tachy and ttt showed tachy while upright, but bp stayed ok. Blood work all normal except lyme ab was 2.29 w/ wb IGG showed 2 bands-31&41.Spinal tap was ok except lyme ab was increased at 1.13. I live in woody areas of AL w/ amny tick pulled off my head.To sum up, all auto-immune testing for MG,GBS,lupus , ect.. normal.I now have been dx with small fiber and autonomic neuropathy,but no-one can find the cause.No diabetes.I am so young. No fam hx.Now I am so sick I can't work. Is lyme causing this?

[CCF-Neuro-M.D.-PW]

Lyme is a difficult diagnosis to make, and often the diagnosis has to be made clinically. Antibody tests are notoriously unreliable and even when positive may just indicate exposure at some point in the past, not neccessarily linked to your symptoms.

Lyme can cause headache from a non-infectious meningitis, and joint pains, stiffness etc. The other symptoms, such as the autonomic one are less typical, but may also be related to a post-viral reaction. However, many people with small fiber neuropathy remain without a cause despite all our testing. Lyme is lesslikely without a rash on the body in the first 1-2 weeks of a tick bite.

Isolated sinus tachycardia is a common syndrome in young women, and can be further evaluated by a tilt table test. It is usally not realted to an autonomic neuropathy or neurological disease.

Other tests of automomic function to diagnose an autonomic neuropathy are available at centers for autoniomic disease such as the Cleveland Clinic - test like cardiac responses to valsalva, and breathing, tilt table testing, pupillometry, sweat tests, and skin biopsyies are available. Perhaps an opinion from a neurologist specializing in autonomic disease might answer your questions more.

Good luck

[dadio]

Hi there, I have also been diagnosed with small fibre neuropathy.  Mine started in the feet and now has spread all the way up to my lower back.  It is a burning/prickling feeling and the thighs are a deep ache.  They say there is no cause for mine and call it idiopathic which I guess just means they dont know.  It is so frustrating as I am quite young too and had plans for my future.  I also get very tired all the time but find it very hard to sleep with the pain, have constant stomach upset and frequent migraines.  Are you on any medication?  I have tried almost everything but am now on Cymbalta which has had some success with neuropathic pain.  I spent a long time in the rain forests in Australia years ago and wonder if I may also have contracted Lyme disease although they say there is no sign of it now.
Take care Pauline

[fcar]

dont know much about medicine but from doing lots of reading you can pretty much take some quesses.  I would from my gut say lyme causes quite serious problems to the immune system, especially testing postive for it.  See, another opionion becasue you may need to be put on antiboitics.  I know people who have lyme disease and  it reaks havoc on the body.

[bamagairl]

I would also like to add that I have had all auto-immune tests to rule out gbs & mg as a cause.  Also blood tests for heavy metals, thyroid and porphyrin, fat aspirate for amyloidosis.I also feel like I am drunk all of the time, kind of like when you come right out of anesthesia and are very, very groggy.  All MRI's of the brain and spine are normal.  I really would like to know what is causing small fiber and autonomic neuropathy in someone my age.  If it was a virus, for example, why am I continually getting worse? I have had these symptoms for about 10 years.  That would make me 22 when it started. Would it seem that it is progressive and will eventually effect the large fibers and immobilize me to a wheelchair? I am afraid that since the small fibers have spread to my autonomics,they have spread and damaged the blood vessels because every time I stand up, my legs and arms turn purple and blotchy.  I really can't imagine something like this happening to someone so young and it getting so out of control and noone knowing the cause. I really need help.  I am bedridden and SOO sick.

[cols]

I also have a small fiber neuropathy with autonomic involvement.  Mine has also been coined as idiopathic which has been very frustrating.  My problem started with Gastroparesis and then progressed to my legs with the burning, aching and abnormal sensations.  I also have constant muscle twitching all over my body.  After one year post diagnosis, I started to get severe intractable headaches, which I have had everyday for 5 months.  They have been the most debilitating yet.  Not even pain killers can take away the pain from the headaches.  Cymbalta and Lyrica are the best med combination for the neuropathy at the present time.  You can also inquire about Clonidine which also works for some people.  I have tried them all.  I am currently doing IVIG therapy and have noticed that my burning has subsided since starting those treatments.  In some cases, the small fiber neuropathy can resolve on it's own but many people will experience a leveling off of symptoms but will have some form for life.  Believe me I sympathize with you as it is a struggle everyday and the depression is unbelievable.  I am 33 years old and feel like my whole life is on hold.  Faith and prayer at times are the only things that we really have especially when the doctors don't know what caused these things to occur.  Good Luck.  You are in my thoughts and prayers.

[sally456]

could you explain in more detail what your burning and strange sensations feel like? Do you have tingling and does the burning feel like a sunburn??

Have you ever felt like some liquid was dripping inside your body?

i have all of these symptoms plus other...
bladder, and vision problems.

[cols]

The burning is intermittant and feels like a sunburn or like someone rubbed icy hot or ben gay on me.

[only30]

Hi my name is Amy. I am 30years old and have just been diagnosed with small fiber neuropathy. I have had pain in my left lower extremities since i had my first child 13years ago. It only occured during mestration time. September 2005 i woke up and was unable to stand straight up. I was put on medical leave from my job and since then i have had to make a change in positions in my job. I am a nurse so finding a job that was a desk job was hard. I have a constent pain in my left hip that radiates down my leg. In early November i noticed a pain in my heals that felt as if my foot was asleep it has progressed and now in both feet.I started to see a pain doctor in January. He didnt feel like i had neuropathy since i am not diabetic. I final convinced him to test me since my aunt who is not diabetic either has peripheral neuropathy. We just did the test and he said my large nerves looked good right now but he feels i have small fiber neuropathy. He has started my on Lyrica as well as i take Lortab for my back routinly. I am a single mother of 3 boys. I am not for sure what has caused this. I also have another concern. Last summer i started having trouble with spelling simple words.THings i know how to spell but for the life of me i cant get it out. If takes me a while. As well as i have a tendency to slur my words and sounds like jiberish. But mainly that is when it is the end of the day i am starting to get tired. I am not for sure if that is a symptom the Loratab i take. If any one has any information on what i can do or any other test i can take of any websites i can go to study this i would appreciate it. I am right now in a state of why me and why now.

Please help! I need someone who understands.

[tkstar]

Hi all,

I am 34 years old.  and have small nerve fiber neuropathy also.  I was diagnosed two years ago after having so much pain in the soles of my feet that I oculd not stand for more than 5 minutes without being in terrible pain.  I have the Herpes virus, and have had this for 8 years.  ever since I contracted this virus I have developed a series of major discomforts.  it started in my lower back, then my legs ached so much I could not sleep, the aching was deep, I had such chronic pain in the back and legs that I would usually wake up feeling as though atruck ran over me.  my whole body would be sore.  after going through several years of this, one day my right foot started hurting only when I stood on my feet, the next day the other foot.  I went to a foot doctor, who diagnosed me with plantar faciatis, but when the pain got worse, I knew I was not dealing with that.  I went to the cleveland clinic in florida, had every kind of test run, including nerve conduction tests, and all they could find was the small nerve fiber neuropathy.  but like most of you they did not know waht was causing it.  this is very scary to recieve a diagnosis with no hope or understanding of it's cause.  I am convinced that for me the Herpes virus has attacked my nervous system.  and continues to wreak havoc.  I have had severe outbreaks from the day I contracted it, so I beleive it is more than possible that I am still being affected.
the feet are still a major problem, and don't know if i should continue to look for doctors that can study my case.  if anyone has had any of these syptoms (symptoms) please let me know.
I am frightend that I will end up in a wheel chair, and no one seems to be able to help me.

[only30]

I understand the fear TKSTAR. I to have the same fear. I was told back in September i needed to find a different career or else a different position in job because of my back problems. Being a nurse it is hard to find a desk job. Shortley after i found a non nursing job I started with the pain in my feet that was in November. April i was diagnosed with small fiber neuropathy.I have a fear of not being able to walk. I am a very independent person and the fear that i may not be able to walk is a very real fear. As well as i am a single mother of 3 VERY active boys whose father has chosed not to be part of their life.So what do we do then? My aunt was diagnosed with peripheral neuropathy and within a year she was in a nursing home. It took over her body. Neither one of us are diabetic or have any illness that would cause neuropathy. I have a fear of ending up like her. I have noticed that i am starting to lose strength in my hands. I am also losing sensation in them. So i think is it spreading to my hands? I hope not since Now I am in a nursing postion that is a desk job i rely on my hands for paper work. If i cant hold a pen then how am i going to work? I am scared and I dont have anyone to talk to that understands. my aunt is so depressed she wont hardly talk to anyone so i cant talk with her for any kind of support. I hide my fears well i dont want to burden my kids with my fears then know what i have and what the worse out come can be. They have been extra helpful at home since they know when i am tired it is worse. But they are kids and shouldnt have to do this. Just wish i could find a support group who i can talk to. I am starting counciling though. That is the best i could do for support.

[javi11]

I everyone. I have also been diagnosed with small fiber peripheral neuropathy. It started about a year and a half ago in my feet and calves. The pain has been consistent but recently I have noticed the numbness, weakness and tingling beginning in my arms and pinky fingers. I have also noticed that upon standing recently my feet and legs get blotching and blue/gray or bright red. Does anyone know what the progression in my arms and/or blotchy legs is about? Is there a way to stop the blotchiness? I am seeing a specialist in peripheral neuropathy but he doesn't have the best bed-side manner and isn't very good at explaining things to me. I am too am very young for all of this - only 27. They have tested me for so many things but can't seem to figure out what is causing it. I feel so helpless, any advice you could offer or a direction to point me in would be so great.

[javi11]

I everyone. I have also been diagnosed with small fiber peripheral neuropathy. It started about a year and a half ago in my feet and calves. The pain has been consistent but recently I have noticed the numbness, weakness and tingling beginning in my arms and pinky fingers. I have also noticed that upon standing recently my feet and legs get blotching and blue/gray or bright red. Does anyone know what the progression in my arms and/or blotchy legs is about? Is there a way to stop the blotchiness? I am seeing a specialist in peripheral neuropathy but he doesn't have the best bed-side manner and isn't very good at explaining things to me. I am too am very young for all of this - only 27. They have tested me for so many things but can't seem to figure out what is causing it. I feel so helpless, any advice you could offer or a direction to point me in would be so great.

[KitKats]

I can relate to tkstar...today I was diagnosed with small fiber neuropathy...I am 38 and have had the Herpes virus for about 10 years.  It has caused much grief in my everyday life and now this.  I am still in testing for the burning and numbness in my foot because I was born with cerebral palsy in my legs only.  I was lucky enough to have surgery when I was very small and they corrected most of my CP problems...however, I do have the jumping, jerking legs in the night that cause me not to sleep.  Now I have this burning in my foot that keeps me awake as well.  As of now I am taking Neurotin and Klonopin, it helped for about a week but not anymore.  I am in the early stages of this diagnosis but it seems from the forum that I have a LONG uncomfortable road ahead of me.

[gonnagetbetter]

I had a nerve conduction test done for some of the same symptoms that you describe.  I would encourage everyone to consider looking at the yahoo news group for Erythromelalgia where there are a lot of articles about it.  EM as it is known is related to small fiber neuropathy.  

Personally, I am taking a medicine called Effexor, which makes life manageable for me, and I take Colazepam.  Both are antidepressants.  I do think this is a nervous condition that is exacerbated by stress.  But the medicing makes life more bearable for me.  I still cannot be on my feet for more than an hour and a half without feeling pain, and I elevate my feet at home on a large foam cushion at home and in bed (I even traveled with it to DC).

I had or have lyme disease and this could be related, but doctors who are experts are hard to find. The most preeminent doctor so far is named Louise Oaklander.  Google her name and you'll find many articles.

Good luck.  I intend to get better.  I have changed my diet (vegan with fish), and do feel better.  I listen to music more and try to be calm (I work for myself so don't have the stress of trying to go to work, but I have to make a living, which is also stressful.

My advice:  stay calm, meditate (I don't do it yet, myself, but I'll get there, eventually).  Eat healthy and check to see when you get the electric jolts, when you get them (I've taken out wheat, corn, white flour for a month, just to see how my body feels without it -- feels much better and I'm overweight so I'm feeling good about my weight loss overall.

good luck everyone.