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   Reply Reply
    Thread Tools Search this Thread
    Old 08-01-2014, 08:52 AM   #1
    Mommala
    Member
    (female)
     
    Join Date: Nov 2012
    Location: Southern New Jersey
    Posts: 68
    Mommala HB UserMommala HB User
    Small Fiber Neuropathy

    Hello, I posted on Neurology and think I should have posted on Neuropathy. My bad. I am posting my message here in hopes I may get some feedback. Thank you in advance to everyone who responds.

    I would like to hear from anyone who has been dx'ed with small fiber neuropathy ONLY or FIRST before another dx was made. I have been dx'ed with SFN and would like to compare symptoms with others for my own peace of mind. Presently, my Dr. is searching to see if there is something else going on besides the SFN but further testing for me is not until September.

    Here are my symptoms: I was finally dx'ed about 2 years ago. Since then I have had much more pain then in the beginning. My legs/thighs hurt terribly and the pain is beginning to travel to my arms. Sometimes that pain is in my upper arm; other times it's in my lower arms and other times my entire arm. It is also sometimes all over. Gabapentin does help me quite a bit but I am trying to take lower doses so that my body doesn't begin to get used to it and not work.

    So my question is: do any others of you with SFN Only have the same type of symptoms? I am due to have a second SSEP (a type of evoked potential) as my last one indicated a slight abnormality. I have a wonderful specialist who is doing my study and I am so grateful I found her.

    So, I would like to compare notes with anyone with SFN and their symptoms to see if we all "belong to the same club". Or hear from people who were FIRST dx'ed with SFN and then found to have another problem AFTER the SFN dx which is or may be contributing to the SFN. Thanks, Everyone.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 08-12-2014, 08:24 AM   #2
    still tyler
    Newbie
    (male)
     
    still tyler's Avatar
     
    Join Date: Aug 2014
    Location: Wisconsin
    Posts: 5
    still tyler HB User
    Re: Small Fiber Neuropathy

    Hello. Yes, I have been diagnosed with SFN which after a barrage of tests has been classified as idiopathic. This is quite common. There is a slight chance that mine may be hereditary but I lack enough family medical history to make that conclusive. I was diagnosed about 8 years ago.

    My symptoms started out as what felt like having my socks balled up under my feet. I kept removing my shoes to pull my socks up only to find out they were fine. I went to my GP who said I had what appeared to be PN. As the symptoms have progressed, I am now seeing a neurologist and went through an unbelieveable amount of tests, mostly to rule out other more serious causes which seems to be the case.

    I am now to the point of my feet being so uncomfortably numb and many times cold for no other reason, that it is intolerable to keep shoes on. This is a major challenge for work. The numbness is now working into the heels of my hands and my finger tips.

    I have basically been told that this cannot be cured, and basically need to manage the symptoms the best we can. I came to this message board to see if anyone else had any ideas to get more comfortable with this condition. My feet are my main problem.

     
    Reply With Quote
    Old 08-16-2014, 05:56 PM   #3
    Mommala
    Member
    (female)
     
    Join Date: Nov 2012
    Location: Southern New Jersey
    Posts: 68
    Mommala HB UserMommala HB User
    Re: Small Fiber Neuropathy

    Tyler, thanks for responding to my question. I don't have the numbness in my feet like you, rather pain in both my legs, etc. You didn't mention medication, but I take Neurontin (gabapentin) and it seems to help a lot. I am on small doses right now, but I do know that good neurologists will allow you to have up to 1200 mgs every 4 hours. That's a big dose, but my friend takes that much and she said it's been a life saver for her.

    I too had the barrage of tests like you. I finally found a specialist who did some over and found one abnormality in an SSEP (a type of evoked potential). I am having that done Sept. 12th. My specialist said this test is hard to read and wanted another. I consider the first one I had as a baseline so I am actually looking forward to the second, as it also was the least painful of them all. If I could tell you anything else that may help, its to make sure you get EVERY SINGLE TEST RESULT from your dr(s). You are entitled to them. That way if you need to see multiply doctors later (let's hope not), you will be able to give them a copy of your results so that you will not have to go through another barrage of tests, unless of course, your tests are pretty old by then. Take the time to research what you know and what you might glean from any test results you have. Knowledge is power when it comes to understanding your health and what is going on with your body. It will also give you peace of mind, even if you don't like what you find out. I was glad to know that I had SOMETHING that explained all the pain I had. Now I just need to know if anything else is going on,and if so, I will want to understand and deal with that too. Let me know how you make out. And, be aggressive! Don't take "I don't know" for an answer until you've exhausted every test out there.

     
    Reply With Quote
    Old 08-18-2014, 09:57 AM   #4
    still tyler
    Newbie
    (male)
     
    still tyler's Avatar
     
    Join Date: Aug 2014
    Location: Wisconsin
    Posts: 5
    still tyler HB User
    Re: Small Fiber Neuropathy

    Hello again,

    Well, regarding meds; I was first given the option of gabapentin or a free sample of Cymbalta. Being a cheapo, I opted for the free sample. Bad choice! I had an adverse reaction to it making me extremely anxious and confused; almost like what I have read a panic attack is like. So, we stopped that and I reverted to the gabapentin. I don't recall the dosage for each capsule, but I started out with a low dosage that was gradually increased. At one point I was taking 2 capsules twice a day. But, the side effects were too much. They made me incredibly groggy, especially during my 50 minute drive to work and 50 minute drive home. It was not just like being sleepy either. The best way I can describe it is that it was like I would start drifting off or dreaming with my eyes open and would catch myself starting to vere off the road. I was seriously concerned that I would be involved in a serious accident and stopped taking them. The next drug was Lyrica. This too was gradually increased but had similar effects as the gabapentin and we have settled for only one capsule in the morning. I don't think it helps a lot, but must help a little because the foot numbness becomes a bit worse without it.
    I was also given Tramadol, which did nothing so I stopped that, then was given a low dose of hydrocodone which seemed to make the symptoms somewhat tolerable. This was then swithed for oxycodone, 5mg up to twice daily as needed. I try not to take them unless the symptoms are unbearable because I am very well aware of the dangers of taking this drug. The best results I have is to go bare foot. Period. I am the most comfortable when I do not wear shoes. This however presents problems at work, and of course living in Wisconsin doesn't lend itself well to being barefoot when it's Winter. That's my story. It's one of the only times in my life that I can remember wishing I was older, just so I can retire and not have to wear shoes as much as possible.

    Good luck to you. I hope you find relief with this miserable condition, and if you hear of anyone with SFN that effects their feet and they have come up with some magic to alleviate the discomfort, I am all ears.

    Cheers!

    Tyler

     
    Reply With Quote
    Old 08-18-2014, 01:13 PM   #5
    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. I have had SFN for 8 years. My SFN was caused from exposure to organic solvents which I encountered in my job as a chemist. I was dx with SFN after a epidermal biopsy of my thigh and ankle. I have constant numbness in my feet to knees, hands to elbows, and face. I also have the other pains that you described. My SFN has been stable for the past 4 years b/c I have learned how to control my meds. I take 400mg of Lyrica but can take an extra if I am having a bad day. I also take 75mg of Nortriptyline and a monthly B12 shot. On two occasions I have maxxed out on Lyrica and it stopped working. We have found out that I have to titrate down off of the Lyrica b/c my body adapts to it and it stops working. I have had to completely come off Lyrica twice for a couple of weeks but then start back at lower doses and it starts back working. At times I have really bad muscle spasms due to the nerve being over-excited to the muscle. My neuro adds a third med when I am having these spasms. Once I was removed from the harmful environment, the SFN has not progressed. I have migraines and Asthma but no other health problems.

     
    Reply With Quote
    Old 08-18-2014, 01:26 PM   #6
    still tyler
    Newbie
    (male)
     
    still tyler's Avatar
     
    Join Date: Aug 2014
    Location: Wisconsin
    Posts: 5
    still tyler HB User
    Re: Small Fiber Neuropathy

    Thanks for the info. I am in a conversation with my neuro to try increasing the Lyrica again. We'll see how that goes. I am curious about the spasms you mention though. Only recently, in the past few months, I have had two occations of waking up in the middle of the night with the worst Charlie Horse in on of calves. I mean the worst cramp I have ever had. Not sure if this is what you are referring to, but I was wondering if the PN had anything to do with that. The cramp was so bad, I had to physically force my foot out straight with my hand to get it to stop and for the next week, I had a pain in the same spot that felt like I damaged something. Weirdest thing I have ever experienced in the middle of a night's sleep.

    I too have been exposed to a number of things in my life being in printing. Who knows what..... I also had a B vitamin defieciency for a time that was corrected with shots, but since, I have adjusted my diet and take a whole foods multiple vitamin and my B vitamin levels always come back very good when tested. I have seen others comment on B vitamin issues with PN as well, so there must be a link.

    Good luck! Let me know if you find the magic cure!

     
    Reply With Quote
    Old 08-18-2014, 01:42 PM   #7
    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

    Still Tyler, that is exactly what I am talking about. I can be walking down the hallway at work and get a cramp in my knee. It is crazy. I am use to the numbness but I do have problems with stumbling and I have to keep eye contact with whatever I am picking up or I'll drop it. If my B12 drops too low I start hurting more and can't get out of bed. That is when I get a reminder about this disease and how my life would be without Lyrica and the other medicines that keep me living a pretty normal life. This hit me at the age of 38 and turned my world upside down. I would bet that the chemicals you were around have something to do with your SFN. Most people don't think about environmental causes.

     
    Reply With Quote
    Old 08-22-2014, 12:34 PM   #8
    cocoa100
    Senior Member
    (female)
     
    cocoa100's Avatar
     
    Join Date: Sep 2011
    Location: PITTSBURGH PA
    Posts: 187
    cocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB User
    Re: Small Fiber Neuropathy

    wow
    while reading this post i thought i was writing it myself. the symtoms are so much like what i am going through. still tylor i can relate with the feet thing iam at the point where i hate shoes. i wish there was somthing that just stick to the bottom of the foot so there is nonthing else touching the foot. for the burning i use frozen peas on the bottom of my feet. its kind of hard to do at work and after work they burn so much it sometimes dont help but give it a try.
    __________________
    have a blessed and painfree day


    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
    Cocoa

     
    Reply With Quote
    Old 08-25-2014, 01:29 AM   #9
    Jimbo G
    Newbie
    (male)
     
    Jimbo G's Avatar
     
    Join Date: Jul 2014
    Location: Camas, Washington, USA
    Posts: 1
    Jimbo G HB User
    Re: Small Fiber Neuropathy

    Hello, I was diagnosed with idiopathic SFN one year ago. Lots of tests including MRI and they all showed negative or normal. Even an EMG showed normal nerve function.
    My symptoms include warming/burning sensations in feet, legs, hands, arms, and even in my back. My feet are the worst with alternating cold and hot with occasional sharp stabbing pains, a little bit of numbness, and just plain old soreness. Like Tyler and Cocoa I don't like shoes. I only wear them to weddings, funerals, and in extremely cold weather. My work requires shoes but I get away with wearing sandals most of the time.
    I suspect that stress has played a big part in my condition. It makes my symptoms worse and I went through 3 years of fairly intense stress before my first symptoms appeared.
    After 7 months I finally gave in to taking medication. Gabapentin at 1800 mgs a day. It took 5 weeks to build up to that dosage and I did not feel any relief until week 5 when I hit 1800. For about 5 days I had significant pain relief and then the pain came back, although I think it's still helping a little bit. I have since gone to 2400 mgs a day, the maximum my doctor says I can have, but it didn't seem to help. I think I'm going to do what Anwise did and back off and give it more time at a lower dosage.

     
    Reply With Quote
    Old 09-01-2014, 07:12 PM   #10
    Painat41
    Junior Member
    (female)
     
    Painat41's Avatar
     
    Join Date: May 2014
    Location: North Carolina
    Posts: 28
    Painat41 HB User
    Re: Small Fiber Neuropathy

    I have posted some time ago about the same symptoms, burning, numbness, random sharp stabbing pain in hands and feet, but recently dx with SFN, just dx with this in the last week after 6 months of testing, finally confirmed with skin biopsy results. I also have sensitivity to touch in my hands and feet which makes life difficult to say the least! They have also said as a secondary condition of fibromyalgia as I have intense muscle pain. I couldn't take any of the GABA or neurotic due to side effects and am only getting a little bit of relief from tramadol, only 25mg in the morning and 26 mg at night! I'm sensitive to medications and this is a very low dose! It sounds as if we are all in the Same boat with slight variations of how it presents! It's hard to work every day with pain, most people don't get it AT ALL. How could they? My question is: do any of you incorporate exercise and does this help? I'm scared to start because of the pain but have read it helps some people! If anyone has any suggestions as to what exercises that would be great! I pray for all of us to have pain free days!

    Last edited by Administrator; 11-11-2014 at 09:11 PM.

     
    Reply With Quote
    Old 09-01-2014, 09:40 PM   #11
    sparky445
    Newbie
    (male)
     
    sparky445's Avatar
     
    Join Date: Sep 2014
    Location: Escondido, California, USA
    Posts: 3
    sparky445 HB User
    Re: Small Fiber Neuropathy

    First of all, I know exactly how you feel, regarding people around you not getting what you are going through. I have lived with neuropathy pain for 30 years, when I originally went to the doctors, he didn't believe me., since then they have developed tests. I finely went back to the neurologist, the previous Dx was 2003. It has been months waiting to get tested, I got a nerve conduction study a month ago, came back normal, I get my skin punch biopsy next month to test for SFN. Previously I was dx'ed with Herditary Neuropathy as my father and mother had it also, but my new doctor was baffled that I was diagnosed hereditary, as I do not have the symptoms for CMT.
    I have tried Gabapentin, couldn't take the fog, then Lyrica max dose, didn't do a thing, I guess the next will be Cybralta, it is like they are poking it with a stick in the dark, these doctors are pretty clueless. I have recently got a possible Dx of Lupus, so that might explain some of the pain...

     
    Reply With Quote
    Old 09-03-2014, 05:44 AM   #12
    still tyler
    Newbie
    (male)
     
    still tyler's Avatar
     
    Join Date: Aug 2014
    Location: Wisconsin
    Posts: 5
    still tyler HB User
    Re: Small Fiber Neuropathy

    Yep. Everyone has the same (albeit slightly different) story. No one gets it. Meds only make your head foggy or crazy and a lack of shoes is the answer. Too bad I live in Wisconsin. Shoeless only works half the year. I am at a loss with this thing. I seem to have settled in with one Lyrica cap in the morning and one at night. The brain fog is present but somewhat tolerable. It seems to help a bit with the burning and leaves me with a somewhat more "comfortable" numbness. I am at a loss as to what else to do. I did try exercise, which is good for you anyway, but did not have the take away that it helped the neuropathy pain. I am still waiting for a miracle. Hang in there everyone.

     
    Reply With Quote
    Old 09-03-2014, 07:39 AM   #13
    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

    Sometimes it takes a combination of drugs to help with the relief. I take Lyrica(200mg) morning and (200mg) at night. I also take Nortriptyline (75mg) in am. At times I thought that the Nortriptyline didn't help but I came off of it for several days and realized it did. I have taken Trileptal before for the muscle spasms and it worked but I didn't do well with the side effects. As for exercise, it is hard to get motivated about walking b/c of the pain it causes. I have used a recumbant bike on and off for years and I guess that is better than nothing.

     
    Reply With Quote
    Old 09-03-2014, 10:32 AM   #14
    cocoa100
    Senior Member
    (female)
     
    cocoa100's Avatar
     
    Join Date: Sep 2011
    Location: PITTSBURGH PA
    Posts: 187
    cocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB Usercocoa100 HB User
    Re: Small Fiber Neuropathy

    You are right about it takes a combination. I am currently on 75mg lyrica twice a day and 1000mg kappra three times a day. The lyrica works best but i can not take more than 75mg twice a day because of the side affects are too bad and for the same reason can not take gab.. I try walking a little every day but after of day of working on and off my feet its hard. i also use a vitamin called r-alpha lipoid(sp?) it helps with the burning, when first start it seems like its not working but when i stoped i noticed the difference
    __________________
    have a blessed and painfree day


    To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.
    Cocoa

     
    Reply With Quote
    Old 09-03-2014, 11:06 AM   #15
    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

    I also get a monthly B12 injection and I can tell a difference in the pain and fatigue if I don't get it.

     
    Reply With Quote
    The Following User Says Thank You to anwis67 For This Useful Post:
    Mommala (09-05-2014)
    Reply Reply




    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 05:42 PM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!