It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuropathy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-08-2008, 07:14 AM   #1
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Question Who has small fiber neuropathy!

I was just diagnosed with small fiber neuropathy. I am a female, age 55. I would like to hear from others with this condition so that we can be a support to each other.
Hope to hear from you soon.
Thanks,
Barb

 
Old 08-08-2008, 02:15 PM   #2
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

Hi Barb, mine was mostly small fiber damage, my neuro found the cause very early [ prediabetes ] and now every thing is pretty well back to normal again.
regards
Aussie

 
Sponsors Lightbulb
   
Old 08-08-2008, 02:28 PM   #3
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

I am having a glucose tolerance test next week but have no symptoms. I also had a biopsy done and have to wait 6 weeks for the results. They believe mine is idiopathic and he said it is usually hereditary. My brother has burning in his feet. I have burning and tingling everywhere in my body.

 
Old 08-08-2008, 03:05 PM   #4
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

I had non of the normal diabetic symptoms either, a normal fasting glucose test showed up as normal, but in my case the 3 hour glucose tolerance test did show higher than normal response to the glucose challenge.... trouble is a lot of docs who are not up to date with current neurological findings still believe you have to have full blown diabetes for years before any nerve damage happens, but this is definatly not true in all cases.
Was that a skin punch biopsy ?

 
Old 08-08-2008, 03:36 PM   #5
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

Yes it was a skin punch biopsy. They did it in three places. From everything I've read about SFN, I'm almost certain I have it.

 
Old 08-08-2008, 03:59 PM   #6
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

Yep, the burning & tingling is very typical of small fiber damage, the hardest thing now is finding the cause, i suppose that you have had all the basic workups like, Sjogrenís syndrome, Vasculitis,Lupus erythematosus, Sarcoid, Nutritional deficiencies [ b12,b6,b1 ], Celiac disease, Lyme disease, Fabry disease, Amyloidosis, Alcohol abuse, Toxins.

 
Old 08-08-2008, 04:39 PM   #7
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

Yes, I have had all the blood tests and MRI's. All normal.
When did yours start? Now that I look back, I think mine progressed slowly over the years. Do you know anyone else personally with this condition? May I ask how old you are? Do you have any other problems besides burning and tingling? Do you have flare ups? I have a very weak back and it seems like everyday I have some kind of ache or pain in addition to the burning and tingling. I can't sit for long periods. Never could for years! I think it's all part of this too. Also, I fell on my left hand two years ago and it ached for two years. No one could tell me why.
I am on Neurontin and not sure how much it is helping.
Do you live a pretty normal life with this condition?
__________________
Barb

 
Old 08-08-2008, 05:04 PM   #8
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

Mine started 5 years ago when i was 50 years old, started in the feet and progressed rather quickly up to my knee's, i was lucky though as the cause was found early and i have been healing ever since to now were its 99.9% gone.
The burning was constant & i had tingling and sharp jabbing pains as well, i had plently of flare ups, i noticed that stress is one thing that really aggravates nerves and the warmer the weather got, the worser the burning got.
i have to go out now, but will talk later if you wish to.

Aussie

Last edited by Aussie100; 08-08-2008 at 10:35 PM.

 
Old 08-09-2008, 05:14 AM   #9
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

Once they found the cause (glucose intolerance right?) what did you do to help with your symptoms? Diet? Meds?
__________________
Barb

 
Old 08-09-2008, 03:17 PM   #10
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

Yes Barb impaired glucose tolerance, no glucose lowering drugs but i went off all high sugary carbs & done exercise, started taken supplements for nerve support, multi B, plus additional b12 & b1, i took the b1- 100 mg x 3 times daily it seemed to help the burning severity some, later on i started taken R lipioc acid that also helped the burning for me anyway.

I couldn't tolerate Neurotin, it just bombed me out more than anything so my neuro put me on 300 mg slow release Tramadol x twice daily & 150 mg Endep at night & 25 mg endep in the morning, luckily these days i don't need take any of these drugs.

Aussie

 
The Following User Says Thank You to Aussie100 For This Useful Post:
sconzette (11-19-2012)
Old 08-09-2008, 03:36 PM   #11
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

Thanks so much for your responses! I am the kind of person who wants to be as educated about a disease as possible. For example, my daughter was diagnosed with Cystic Fibrosis, and since there wasn't a chapter in my city, I began the local chapter. ( removed ) Also, we are moving to Arizona and I noticed there is a neuropathy center in Phoenix. ( removed )
__________________
Barb

Last edited by moderator2; 08-22-2008 at 02:17 PM. Reason: please do not ask members to post against the rules - do not post websites except as per the rules

 
Old 08-09-2008, 04:58 PM   #12
Veteran
(male)
 
Join Date: Oct 2006
Location: OZ
Posts: 382
Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: Who has small fiber neuropathy!

I am not aware of the neuropathy association, but sounds like it could be worth checking out.

( removed )

best of luck anyway
Aussie

Last edited by moderator2; 08-09-2008 at 06:47 PM. Reason: do not direct off board searches

 
Old 08-10-2008, 07:49 AM   #13
Senior Member
(female)
 
Join Date: Jul 2007
Location: Alabama
Posts: 203
anwise67 HB Useranwise67 HB Useranwise67 HB Useranwise67 HB Useranwise67 HB User
Re: Who has small fiber neuropathy!

Hi Barb. My name is Allie(age 40) and I have small fiber sensory polyneuropathy, non-length dependent. That is the official diagnosis from my neurologist. The symptoms(burning, twiching, tingling, stabbing pains, cramping) mainly in legs started in 2004 and were intermittent. During that time I would find myself dropping things and my balance seemed off. In Jan. of 2006 I awoke to find the left side of my face numb. I wasn't really concerned b/c I have had migraines that were preceeded with this type of numbness. I found myself preparing for the migraine but it didn't come and after two weeks I finally found myself visiting the first of five neurologist, most of whom had a wait and see approach. By May of 2006, I had constant numbness in my face,legs, and arms. At one time it did progress to my waist. In November of 2006, I found a wonderful neurologist(5 hours from my home)and at the first appointment he listened to me and decided that I was probably right about my condition. I read so many articles about SFN and I new that was my problem. He performed the skin biopsy and 1 week later I finally found out what monster I was dealing with. It was a long ride and my will to know was the only thing keeping me afloat. The numbness is most noticeable below my knees and elbows but still have numbness of my face. I also have no temperature recognition in my lower legs and lessened in my arms. Currently, The other symptoms are muted with the medicines. I take 100mg of nortriptilyne and 400mg of Lyrica for the pain. I was just recently placed on trileptal for the cramps and it has done wonders. I also take ali-flex and darvacet for breakthrough cramps and pain. I still have episodes where my feet up to mid calf turn red and burn in response to hot temp. and stress of being up on my feet too long(this is also called Mitchell's disease or erythromelalgia, secondary to SFN). Currently I feel that I am living more normal than I have since 2004. The power of knowing and dealing with this condition plus a combo of meds. that work for me. I have to adapt my life but I know my limits and I don't push b/c I know that I will pay for it later.
My neuropathy has been caused from my occupation as a chemist. At this point, doctors feel that I have a very slim chance of getting better. The key now is acceptance and adapting. I never thought I would be able to say I feel good, but I can. I hope that you find a cause now and that you sfn will be reversible. I would like to continue to talk with you as well b/c I hope that I offer some information that you need.

 
Old 08-22-2008, 03:45 PM   #14
Junior Member
(female)
 
Join Date: Aug 2008
Location: Scottsdale AZ
Posts: 42
Gummybarb HB User
Re: Who has small fiber neuropathy!

Thanks Jay!!!!!!!
__________________
Barb

 
Old 10-09-2008, 10:44 AM   #15
Newbie
(female)
 
Join Date: Oct 2008
Location: Oklahoma City
Posts: 1
micgabber HB User
Re: Who has small fiber neuropathy!

Quote:
Originally Posted by Gummybarb View Post
I was just diagnosed with small fiber neuropathy. I am a female, age 55. I would like to hear from others with this condition so that we can be a support to each other.
Hope to hear from you soon.
Thanks,
Barb
Barb,
I am so sorry about your diagnosis. This is the first time I have ever been to this site and of course probably like you searching for any answers or help. The only people I know who could possibly understand this horrible pain and the disabling nature of this are people dealing with it. Hopefully we can find support or gain answers from each other. My story I am a 46 year old female and until 7/14/06 was completely healthy. A mother of two, a physician running a busy OB/GYN practice and a cyclist. Led an extremely active life until that day I received botox injections and developed botulism from them with total paralysis. I continued to tell the physicians about the horrible pain that felt like someone was taking an electrical cord to me and shocking constantly up my legs and arms. They of course were puzzled by that but finally diagnosed also with neuropathy from all the nerve injury. It has been over two years and I am walking again but I can't begin to explain to them the disabling pain with neuropathy. I have now lost my practice and career secondary to this but still hoping I can find ways to control or endure just to be a mom at least. I have found no medicines that have helped at all. The only drug that even takes the edge off a little was tramadol. I have done all the neurontins and lyricas with no relief. I am starting accupuncture this week a little more nontraditional but hoping and praying that gives me some relief even to be able to sit through dinner. The things I have found that help me are heat. hot tubs and for some reason being in a hot dry climate is much better for me. Also pilates and yoga. I can't explain it but stretching the nerve seems to help some. Everything else I can't do yet. I used to be a runner and cyclist and all that is gone. I will say Yoga is interesting. I always thought it was bogus before but now a true believer. Hang in there. Hopefully we can all help each other get through this.
Sharla

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Hi, I am new to this forum. I have a question about small fiber neuropathy pain. Kim H Neuropathy 9 06-28-2011 07:36 AM
recently dx small fiber neuropathy LoriAllen Neuropathy 8 09-12-2010 03:34 PM
Small Fiber Neuropathy Gang anwise67 Neuropathy 29 08-22-2010 05:56 PM
Small Fiber Neuropathy#2 will54 Neuropathy 110 05-10-2010 11:07 AM
small fiber neuropathy dcrisp Neuropathy 5 12-02-2007 06:13 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



tingles (48), RisingParrot (34), Aussie100 (34), daisymaegrl (33), Ruby8 (27), captinsane1 (25), June89 (22), LasVegasgirl (10), awlright (10), jverive (9)

Site Wide Totals

teteri66 (1162), MSJayhawk (991), Apollo123 (890), Titchou (826), janewhite1 (823), Gabriel (757), ladybud (737), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 07:51 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!