Small fiber neuropathy question
 

Hi,

I am new to the group and have symptoms suggestive of small fiber neuropathy. I have had the big workup including Brain, neck MRI's etc. I saw an neurologist who specialty is neuropathy and muscle disorders. He felt I had history consistent with small fiber disease but not a classic neuropathy. Have other members noted flares of symptoms after stressful events? I had two foot procedures in October which was a big stress load.

Glenn

Hi
 

Yes, yes,and yes, my neuro and well all my Drs. have let me know,
as well as my very own body stress is bad...I for one have some
stress issues and I pay for it...Why because it makes the pain,worst
so what I do is meditate..Why I think stress kills,or makes you
feel like your going to die..Focus on something you love,or a beach,
or something you would like to be doing...Throw that stress away
if you can,or come here vent let it go,be free of it...Someone
may even make you laugh...Hugs to all Sue

i have found that stress definitely increases the pain and inflammation, which may be the reason the pain increases. I know that stress increases airway inflammation and airway reactivity in the lungs.

Hey Joe
 

Sorry your not feeling well,hope you feel better soon. :hug: Sue

Yes, other Glenn--
 

--stress can certainly induce neuropathy symptom "flares", and this is not only restricted to small-fiber syndromes, although those syndromes with small-fiber involvement often produce the most neural pain.

This seems at the very least to have something to do with the release of inflammatory substances that happen in stressful situations--part of the "fight or Flight" reaction of the sympathetic nervous systems.

BTW, have you seen the interesting artciles in the Useful Websites section about small-fiber syndromes? (Look for the long list under my name--there are other as well.) Small-fiber syndromes due to diabetes or impaired glucose tolerance and vasculitis are quite common, as are "idiopathic" syndromes involving small fibers in which it is suspected autoimmune factors play a role:

http://www.neuro.wustl.edu/NEUROMUSC...ory-small.html

Hi & welcome to this forum, i agree with all the others, stress definitely aggravates damaged small fibres.

Brian :)

Agreed. Stress often causes neuropathy symptoms to worsen. It certainly affects me.

Did you have a general anaesthetic for your foot procedure? If so do you know if nitrous oxide (N2O) was used? N2O oxidises vitamin B12, so if you are B12 deficient an anaesthetic could make things a whole lot worse. Most anaesthetists think it is a minor issue and don't hesitate to use N2O in any patient. A senior anaesthetist I know who has looked into this issue told me that 2 - 4 hours of N2O anaesthetic can destroy all the stored B12 in a normal adult.

Martin

According to other posts I've read about this
(I think Rose has mentioned it),
it can also be the cause of PN !

B12
 

Hi,

I am actually an anesthesiologist who does only neurosurgery cases. I did check my B12 levels , after the surgeries and they were low normal. I have started some oral B12 supplement just in case.

I have had these strange symptoms for about 20 years off and on, with the usual megaworkups. I recently saw an expert in PN. He felt that given my normal neurological exam the chance of having a true neuropathy was small though he agreed there are symptoms of small fiber dysfunction. All of this can be quite frustrating. All the drugs out there reduce symptoms at best 50% which is better than nothing.

I recently got a book entitled Coping with peripheral neuropathy(via amazon.com). The author is a psychiatrist with CIDP who is quite disabled. It's a short book but might help some of the group member.

Thanks.

Glenn, welcome!
 

It's so hard to know where to begin to learn about neuropathy, all the neuropathies and the language that we at times speak. We've all here fumbled thru the medical diagnosis aspects...some with good docs, some not -who have had to go thru many docs to just get a diagnosis, let alone treatment. Then there is the pain? For many, trying to ignore it is the only way to deal with it; for others, varied medications, supplements and therapies are the way to go...Coping is key to dealing with it all, learning about what is going on in the 'neuropathy' processes can help deal with it?
I encourage you to read a bunch of prior posts and learn what questions have been asked before...and if there are any answers or not. The one thing I have found in common to us all - is that the WHY this happens is usually not known, the treatments-the options and what you can do to help yourself be in a better position to help those nerves heal is what we talk about here and what docs can or should be doing.
I encourage you to read the 'stickies' at the top of the page. Any highlighted blue 'link' cited there, well...just click on it and you should get a new window of reading. They aren't as organized as one new to this all would like, but learning along the way is the norm?
For starters tho I recommend the following sites:
http://www.neuroexam.com/content.php?p=2 This is a good intro as to what the basic and subsequent neuro exams look for and why.
This next site is a bit more technical, but it can help you learn about all the different factors that come into play in any diagnosis.....
http://www.aafp.org/afp/980215ap/poncelet.html
Lastly, with those as introductions...check out: http://www.lizajane.org/
These were put together by a member here, with input from many PN folks dealing with the different kinds of neuropathies.... I view this as a 'roadmap' of tests to keep track of as you go down the road...when viewed with the other two mentioned web sites, you can find your way down the right roads for diagnoses and testing. Or, just re-assure your own self that your docs are on the right track..if not the only track... LizaJane's sheets can and DO help you keep track of things...as two years down the road? You mite not remember when you took what med that didn't work, or when your last blood test was! As time goes on, these things can smush together into a terrible mess of a history! Be sure to get copies of all test results tho!
Last of all? Most important tho...no question is too simple, silly or insignificant!
Remember that nerves can die-well, rapid-fire fast! They can take months to years to heal. Less is known now about the 'healing' part than the dying parts. When nerves heal they at times feel as bad as when dying! So, try and do the best to help them, and ask questions away! Have a small :hug: to let you know that others here do understand lots, much, but not all of your pains. So many here have helped me to think differently about my pain, and how best to deal with it...I am sure they will help you as well. - j

Oh about the stress? Who wouldn't be with such pain? DUH? I am not belittling you here, it's that the pain, and the worry about that can make things worse? Put yourself on an island beach, lite breezes and soft winds, warm sun and a cool beverage in hand. I find that feeling/picture always makes me feel better and calmer. Try your own good image?

Greetings All!
I have another question for those of you getting IVIG........
I have been getting the infusions every week for almost 7 months now. We decided to go out of town over Thanksgiving so I missed an infusion......and man am I paying for it now! Last week after my infusion I ached SO bad and was just miserable....like after my first few infusions! Then I had another infusion yesterday and here I am in terrible achy pain again and even have buzzing.......UGH! Has this happened to anyone else after missing an infusion?? If so, how long did it last?
I hope everyone is ready for the holidays!

Roxie how many are you suppost to take,now just curious,what if Dr. or
insurance,all of a sudden said that's enough no more,I mean has that
ever happened,hmm i wasn't sure how to ask this any other way,I mean
if you felt that bad,well it's not going to happen. But that sounds awful.
It's late and i'm sleepy but spotted your post. No more ouches,feel better,
Sue

HI Sue!
I'm sure it has happened to some but hope I won't have to face it. My insurance has been paying 100% since the end of May, so I have been very lucky. Starting Jan. 1 I have to pay the first $3,000 for my insurance and then it'll pay 100% the rest of the year again...whew!
I'm sure I'd be in major pain again if I did have to stop the infusions. They are helping me, I can tell that when I missed the one over Thanksgiving.
I wish I could get the Thyroid medication problem figured out because taking that med helps my pain too.......but it really bothers my bladder because of my Interstatial Cystitis.......seems there's always one problem or another!
Happy Holidays Sue!

Roxie, between Interstitial Cystitis and neuropathy, you have been dealt one lousy hand.

I know about the agony of Interstitial Cystitis because I had all those symptoms (years ago) for over 4 years. I thought I would lose my mind.

That pressure (down there), where you feel like you have to urinate, and then you urinate just fine, but the pressure is still there.

I do not know how I survived that. But I'll never forget that one day while the hot water was showering down upon me in the shower. It all went away. After all those years. I used to use heating pads. I went to doc after doc, specialist after specialist, I took sonograms, cystoscopes, trans vaginal this and that.

They found NOTHING!!!

They believed me because they knew I was miserable. Only one time, when they gave me the uring test, did they actually find an infection, and antibiotics cleared that up, But for most of those 4 to 5 years, there was no infection, just those horrible symptoms.

I don't know how you survive all of this. My hat is off to you, please know that.

:hug:

Good Morning and Thank you Mel!
How are you today?
I totally agree about being dealt a lousy hand....with those problems you mentioned AND the Barrett's Esophagus some days are real doosies! I usually try to grin and bear it but some days....like this weekend I just look in the mirror and say "WHY ME??"
I'm having bladder surgery on the 18th and I'm hoping it doesn't send my Cystitis into a tizzy!
I hope you and Alan have a great holiday!!

Hey you 2
 

The 3 things that were the most painful that I remember having,
were Endometriosis,the IC,do either of you remember having that orange
dye injected into your urethra,and if it was put in wrong,you ended up not
being able to pee or tons of blood clots,and the pain and dying..I perfered
the orange pills and antibiotics,(they could make you sleepy).. and
polyneurathys..

I spent this morning and a few hrs. yesterday with my Neuro,she was
in India before I was in Barnes, they had been planning on this trip
for sometime..Her husband is Chief Of Pulmonary at the hospital..
2 weeks before they came home ,she had a freak fall and shattered
her leg. They finally got her back in a medicAL PLANE,AND HER HUSBAND,
CALLED AND ASKED IF I WOULD SIT WITH HER...SHE IS SO TINY
IN THAT BED AND IN A GREAT DEAL OF PAIN..wE WILL BE IN REHAB
TOGETHER..sO NOW WHEN SHE CAN STAY AWAKE,I TOLK HER I
WOULD PICK HER BRAINS...THEY HAD TO PICK ME UP THIS MORNING
ICE STORM ALL NIGHT..hER HAIR GOES TO HER WAIST THE AID DRY WASH
IT AND I MANAGED TO BRAID IT,I GUESS PAIN ESCAPES VERY FEW IN ONES
LIFE TIME..WELL HOPE YOUR FEELING BETTER ROXIE,DON'T FEEL SO GOOD
AND BIG FAMILY GET TOGETHER NEXT WEEKEND,SO WE ARE CLEANING
THIS ANTERNOON..i HAVE SOME KINDEY PROBLEMS RIGHT NOW.GOING
TO TRY AND POST SOME PICTURES OF MY GRANDSON MEL,YOU BOTH
STAY WELL AND HUGS TO ALL..sUE