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



Neuropathy Message Board

  • Small Fiber Neuropathy

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 11-13-2008, 07:34 PM   #16
    will54
    Senior Member
    (male)
     
    will54's Avatar
     
    Join Date: Oct 2008
    Location: houston,texas, usa
    Posts: 118
    will54 HB User
    Re: Small Fiber Neuropathy

    Allie and Jana
    Allie, I'm concerned that things are not right with Jana. Hope is best as can be. I hope you are doing well as I know things can get quite rough. Stress at work has sent my SFN through the roof these last few days. Since you have been diagnosed longer than I have, what can I look forward to, as far as you have experienced. I don't know if your's is progressive.

    Is there anyone else looking in that has a comment? I'm trying to live with this SFN and don't know anybody else to turn to. I've only found Allie and Jana to talk to, of which I am extremely thankful for. However I wish I could hear from others. I need some support.
    Will

     
    Sponsors Lightbulb
       
    Old 11-14-2008, 04:01 AM   #17
    janajb2
    Junior Member
    (female)
     
    janajb2's Avatar
     
    Join Date: Nov 2008
    Location: Toronto, Canada
    Posts: 15
    janajb2 HB User
    Re: Small Fiber Neuropathy

    Hi Will. I'm sorry I haven't replied in a few days. My daughter and son-in-law are moving out west next week, so we've been busy helping them get things in order.
    I'm not sure if I'm any further ahead yet. I did see the surgeon and although he was most helpful in explaining his findings, I'm still suffering the same amount of pain. He claims that my gall bladder "could" be causing the back pain, but can't explain the burning nerve pain in my abdomen. Once I have the ERCP next Thursday, if the cells still show as A-typical, they'll remove the gall bladder. I honestly believe the pain will still be there..surgery or not.
    I also saw my chiropractor yesterday, who says this could be shingles. I never developed a rash, so is that possible? As I said...I'm no further ahead.
    I'm sorry to hear that you're still suffering so much pain. Although I can't make things better for you, I do agree that having someone to talk to really does help one cope.
    All we can do is keep searching for answers. In the meantime, we have each other for support.
    I finally have an appointment with a neurologist on December 4th. Hopefully, through his findings, I might get some answers!
    I'll be quite busy this weekend, but I'll pop on Monday to see how you and Allie are getting on. I hope you have a relaxing weekend that finds you more comfortable.
    Take care, and we'll talk soon.
    Jana
    xoxo

     
    Old 11-14-2008, 06:40 AM   #18
    anwis67
    Registered User
    (female)
     
    Join Date: Jul 2007
    Location: Alabama
    Posts: 210
    anwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB User
    Re: Small Fiber Neuropathy

    Hello Will. Didn't get my email notification that you and Jana had posted, so that is why I have not posted. My neuropathy was progressive as long as I was in the hazzardous working environment. My face became numb in January and by May the numbness was pretty much all over my body. As I sought answers, I still remained in the work environment until September. When every test(multiple blood draws, CSF,Multiple MRI's of brain and complete spine with and w/o contrast, EMG,NCV,EEG,echocardiogram,etc.) came back normal, I realized that it was the chemicals that I had been in contact with for over 5 years. At that time, I sought out environmental specialist and toxicologist who totally felt that it was the chemicals too. At that time I went on FMLA until I could be place in a safer job which involved no contact with chemicals. Soon after being moved my numbness and symptoms began to stabalize and still remains at that level. I did have some recovery of feeling initially but none since then. Have you look at your environment for a cause for this? I don't know why I didn't see it sooner. My working envir. was so bad, no monitoring of the air or us. My progression was as follows:
    1. nonpainful muscle twitches
    2. balance issues and weakness
    3. Numbness of face.( considered rare and is one thing that threw doc. off)
    4. Numness of extremities(feet before hands)
    5. internal shaking episodes
    6. burning and aching of extremities
    7. muscle spasms
    9. pain
    10. loss of temperature recognition in extremities
    Hope this helps some. Allie

     
    Old 11-15-2008, 08:28 PM   #19
    will54
    Senior Member
    (male)
     
    will54's Avatar
     
    Join Date: Oct 2008
    Location: houston,texas, usa
    Posts: 118
    will54 HB User
    Re: Small Fiber Neuropathy

    Hello Ladies,
    Good to hear from you both. Hope you are doing your best. I have been falling asleep when I sit down for the past two days. I sit at the computer and go to sleep and wake up several minutes to awhile later. This is becoming disconcerting. Well, it's time to sleep again...talk soon.
    Will

     
    Old 11-15-2008, 10:46 PM   #20
    Aussie100
    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: Small Fiber Neuropathy

    Is there anyone else looking in that has a comment? I'm trying to live with this SFN and don't know anybody else to turn to. I've only found Allie and Jana to talk to, of which I am extremely thankful for. However I wish I could hear from others. I need some support.
    Will[/QUOTE]
    ........................................ ........................................ ........................
    ........................................ ........................................ ......................

    Hi Will, i am sorry to read that your going through such a rough time, i also had a lot of small fiber damage & some large nerve damage as well, i know it is the pits.
    I am wondering how aggressive your neuro was/is in finding the cause of your trouble, believe me, i know through my own experience with PN, some docs are clueless or just plain lazy in really investigating the known possible causes, is your neuro a neuropathy expert ? because not all neuro's are, even though they will make out they know everything about PN, but even the real pn experts can't solve all cases but at least they try real hard first.
    best of luck to you
    Aussie

    Last edited by Aussie100; 11-15-2008 at 10:47 PM.

     
    Old 11-16-2008, 08:57 AM   #21
    anwis67
    Registered User
    (female)
     
    Join Date: Jul 2007
    Location: Alabama
    Posts: 210
    anwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB User
    Re: Small Fiber Neuropathy

    Aussie, I agree with you completely. I went to 5 neurologist and thankfully the 5th one was a specialist in SFN and was able to help me. He is located 5 hours away from my home but if something is going on with my meds. or anything I can call and his nurse always calls me back. I actually only see him 2x a year so I think that you also need a good family physician that can help carry out your treatment plan. Will, I don't know what tests you have had, but it sounds like maybe you haven't had enough to narrow a cause down.
    allie

     
    Old 11-16-2008, 01:47 PM   #22
    Aussie100
    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: Small Fiber Neuropathy

    Hi allie, i am glad you are seeing a good neuro that knows what he is doing & is well worth the time it takes to see him, yes i agree with you too, a good GP that will work in with your neuro can make things a lot better for the patient, which is the way it should be really.

    In my early days of getting nerve damage, i seen one proffessor of neurology who you would think would know how to at least test for particular nerve damage, he didn't, i was complaining of severe burning in the extremities, he wanted to do a nerve conduction test which can't even test for small fiber nerves which are the ones responsible for the burning, this guy was the head of the neurological team at my local hospital, which is a large hospital, it is scary to say the least.
    To cut a long story short, i told him in front of all his student doctors that he should go back to med school and should stop trying to imitate a real neurologist

    take care
    Aussie

    Last edited by Aussie100; 11-16-2008 at 01:51 PM.

     
    Old 11-20-2008, 05:30 PM   #23
    will54
    Senior Member
    (male)
     
    will54's Avatar
     
    Join Date: Oct 2008
    Location: houston,texas, usa
    Posts: 118
    will54 HB User
    Re: Small Fiber Neuropathy

    Allie/Jana
    I hope that all is well with you and you are doing the best as is can be. I haven't written lately as have been working hard and I have let the SFN get me down. Have been unable to get appointments with the doctors due to situations at work. I believe that I will be able to do so soon. Weather is changing today and tonight and have really felt the change. Have new pains that have not had before. Must be experiencing new levels of the SFN that were not there before. I fell at work today due to a hip pain that I haven't experienced up till now. Things are changing and am afraid not for the better. I will work with this and keep going. Keep up the good fight!
    Will

     
    Old 11-21-2008, 08:22 AM   #24
    rudiraven
    Senior Veteran
    (female)
     
    Join Date: Jun 2006
    Posts: 1,348
    rudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB Userrudiraven HB User
    Re: Small Fiber Neuropathy

    Are any of you on statin drugs? These are known to cause alot of the symptoms you are experiencing although doctors don't seem to acknowledge this. I wish you all well.

     
    Old 11-22-2008, 05:19 PM   #25
    anwis67
    Registered User
    (female)
     
    Join Date: Jul 2007
    Location: Alabama
    Posts: 210
    anwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB User
    Re: Small Fiber Neuropathy

    rudiraven,
    I have never taken a statin but other drugs I have taken in the past have been reviewed and are not considered the cause of my SFN. That is the hardest thing about SFN, it mimics so many other more serious conditions and all the docs are trying to rule those out.
    Will,
    I am so sadden to hear that you are having such a bad time. One thing that I have learned along the way is that there are going to be good times and bad. My problem is that I tend to overdo when I feel good. My work has been hectic also. I made it 5 days last week but I struggled. Then I spend the weekend trying to build up my strength to make it the next week. I feel like I am going to have to go back to 4 days a week b/c my meds are not working as well and this cold weather is making things worse. Anyway back to you. I got depressed about this awful illness too. Who wouldn't if they had to put up with what we go through each day. I would strongly advise that you discuss this with your doctor. I take nortriptyline which is an old antidepressant that helps with my depression and also the nerve pain. You also have to get the pain under control. It is a viscious cycle that has to be broken. My GP advises me to keep it under control by taking my meds on time and pain med when i need it. Alot of people are concerned about the dependence or addiction. I am worried about seeing my son inducted into the National Honor Society on Monday. One day at a time is all you can do. Maybe you can tell us in detail what you are doing for the neuropathy right now. allie

     
    Old 11-25-2008, 06:14 PM   #26
    will54
    Senior Member
    (male)
     
    will54's Avatar
     
    Join Date: Oct 2008
    Location: houston,texas, usa
    Posts: 118
    will54 HB User
    Re: Small Fiber Neuropathy

    Allie / Jana
    I hope all is well and Happy Thanksgiving.
    Allie, I'm only taking medication at this point. Due to change of job, for the better, I have been unable to get to the doctors. Having visited my primary recently, he does Saturdays, I have no diabetes as has shown again.Along with the SFN, I have torn rotator cuffs of both shoulders. The right for the third time. Waiting to have surgery on both. The reason for not being able to get to doctors is that I'm a warehouse manager and I have just put a warehouse in operation from the ground up. No time to leave the warehouse during the day and the doctors don't have very usefull hours to help out. I guess they like their private time. I Have had better days recently, though not sure why. Weather has been up and down, wet and dry, cool and warm. Though fatigue has become pronounced much more than in the past months.
    Jana, I hope you are doing well.
    Will

     
    Old 11-26-2008, 07:25 AM   #27
    anwis67
    Registered User
    (female)
     
    Join Date: Jul 2007
    Location: Alabama
    Posts: 210
    anwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB Useranwis67 HB User
    Re: Small Fiber Neuropathy

    hope you have a few days off coming up to get some rest. I have found that getting enough rest is so important. When I don't I am in more pain which makes me a hard person to get along with. I hope that you will soon see some kind of relief. I have been where you are with the SFN and personally know that living with this disease is difficult but it can happen. When I am having a good day I am so thankful but almost scared to say anything b/c I don't want it to end. Keeping you in my thoughts. Have a Happy Thanksgiving. Allie

     
    Old 11-26-2008, 04:07 PM   #28
    janajb2
    Junior Member
    (female)
     
    janajb2's Avatar
     
    Join Date: Nov 2008
    Location: Toronto, Canada
    Posts: 15
    janajb2 HB User
    Re: Small Fiber Neuropathy

    Hi Will and Allie. I want to wish you both a very Happy Thanksgiving!

    My pain continues daily, and the 75 mgs. of Lyrica twice a day just isn't cutting it anymore. Rudi...you mentioned statins. I do take 10 mgs. of Lipitor every day and have been doing so for about 5 years now. You know, there are so many what if's, and why's that it makes it hard to figure out what makes sense anymore. I am anxious to see this neurologist on the 4th of December to see what he thinks. I'm just afraid he'll say, "there's nothing I can do for you". I guess I'll just have to cross that bridge when I come to it, right?
    The good thing is that my pain has not gotten worse or spread to other areas of my body. It's just always there! It does not keep me awake though, so for this I'm thankful. I'll keep you posted and in the meantime, I wish you well.
    Jana

     
    Old 12-02-2008, 09:26 PM   #29
    biologiahombre
    Junior Member
    (male)
     
    biologiahombre's Avatar
     
    Join Date: Dec 2008
    Location: Neosho, Missouri, USA
    Posts: 14
    biologiahombre HB User
    Re: Small Fiber Neuropathy

    Hello to you three,
    I just joined this message board as I belong to several that seem to come and go and thought I would give this one a try. I have had my fare share of health issues and know my fare share as well as I am a science teacher and am getting my PhD in Epidemiology - the study of diseases. Anyway, I looked through this board and to my surprise I found a listing and post regarding Small Fiber Neuropathy! I was so excited to finally see anyone else posting and inquiring about this disorder that I read all the way through your entire postings.

    I too have SFN I was diagnosed last January, though my doctor believes that my initial symptoms began back when I was 14, I am now 32. I could say my life has been a living hell on earth but that would be complaining that just turns my stomach! I will however describe the in short the crap I have been through... no that would still take too long. Lets just say in all those years in four different states with countless doctors and unimaginable amounts of blood draws, tests, procedures, x-rays, CT's, MRI's, etc I have given up so many times told the world and doctors to shove off, the worst absolute worst part of it all .....was not knowing!!

    Now I still believe that I may have some things wrong that done fit the norm or at least what I can find in current research about it. My Neuro thinks that as well he is a research scientist at Washington University in St.Louis, Mo.

    As for my current condition well I have to live with this cloud always in my thoughts and my mind. it has always limited me ever since it started getting worse. I had to quit football, but if I hadn't I never would have discovered my talents for Art! In my religion the young men serve for two years as missionaries, because of my health my dream of going over seas never happened, but I did get to go to East LA and learn Spanish and the time I had there was amazing. I know I was supposed to go there. I also know that because of my health I had to come home early which made me very very depressed. but if I had not done so I would not have found my wife before she moved out to Washington. We met and dated and got engaged with in a week!! We have now been married for 10 years and have six children! I have been going to school practically the entire time we have been married I have only had 2.5 years off and I have been working full time the entire time as well. Life is hard but I believe that we are made of something harder!!

    I suppose this is enough for now for me to simply introduce my self and give you guys a chance to reply.

    Best wishes!

     
    Old 12-03-2008, 05:41 AM   #30
    ppanther14
    Junior Member
    (female)
     
    ppanther14's Avatar
     
    Join Date: Nov 2008
    Location: Patchogue, NY, USA
    Posts: 13
    ppanther14 HB User
    Re: Small Fiber Neuropathy

    I never thought that I could find so much help by just reading what each of you have written. Thanks to you all I am new to the site and really looking for some answers as well which I seem to find by reading here. I have been on anitritolyne and avinza and vicondine to help me will my pain and to also help me to sleep at night. I have also been getting IVIG treatments as well has any one tried this and does it help? I was wondering if any of you know that sugar per say has any kind of reaction to making the pain worse or not? I thought that I had read it some place, not sure where.

     
    Closed Thread

    Related Topics
    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 anwis67 Neuropathy 29 08-22-2010 05:56 PM
    Small Fiber Neuropathy#2 will54 Neuropathy 110 05-10-2010 11:07 AM
    Who has small fiber neuropathy! Gummybarb Neuropathy 14 10-09-2008 10:44 AM
    small fiber neuropathy dcrisp Neuropathy 5 12-02-2007 06:13 AM
    Just diagnosed with small fiber neuropathy woo97 Neuropathy 6 05-20-2007 01:26 AM
    Small Fiber Neuropathy!! Help... sianmaloney Neuropathy 6 11-17-2006 02:56 AM
    Small Fiber PN--Worse Fear Eased a Bit SarahNina Neuropathy 1 10-14-2006 09:31 AM
    I think I may have small nerve fiber neuropathy? please help??? rekha Neuropathy 1 08-20-2004 03:29 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    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




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:58 PM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!