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    Old 02-14-2009, 06:19 AM   #16
    will54
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    Re: Small Fiber Neuropathy Gang

    Hello Allie, 2morrow,FeatherMe, and the Gang,
    Hope you are all doing as best as you can. I found out why I was having such a hard time over the past few days. I have been taking some OTC cold medicines and they were effecting my regular SFN drugs. The moment I quit taking them my unusual symptoms stopped. From now on I will be a lot more careful what I mix with my SFN cocktail. Well I've got to get moving as I have a busy day planned. Take care all writers and listeners.
    Will

     
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    Old 02-15-2009, 05:08 AM   #17
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    Re: Small Fiber Neuropathy Gang

    Hello Allie and the Gang,
    Allie, I don't want to hurt your feelings, but I'm going to open another thread. No one is writing but you and I. Thanks for keeping it going.
    Will

     
    Old 02-15-2009, 07:13 AM   #18
    anwis67
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    Re: Small Fiber Neuropathy Gang

    I've noticed that too. Doesn't matter where just as long as there is some discussion on SFN that I can read. We will see what happens.
    Allie

     
    Old 02-15-2009, 04:46 PM   #19
    2morrow
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    Re: Small Fiber Neuropathy Gang

    I'm here. I check the board several times each day. I think the reason I'm not posting is because I can't seem to wrestle fear to the ground. The fear grows as my symptoms increase and continually change. If I don't write about it - it's not really happening - I guess that's denial. Perhaps others out there are the same. I don't know what happened to me last summer - I might be one of those unlucky ones, who had a very aggressive shingles virus all through my internal organs and then it infiltrated my spinal cord (that day I remember clearly). Then the months of increasing /excrutiating pain, acyclovir, clonazepam, Tylenol 3 and Advil (to mention a few of the drugs I tried). Then the dismissive or disbelieving ER doctors, walkin clinics and even my PCP - then out of desperation I agree to take the psyche drugs (anti depressant, anti anxiety, anti psychotic), this cocktail of drugs making my nervous system even more damaged with body spasms and jerking and breathing problems - then Neurontin for 72 days - another drug nightmare, and now just a month after stopping Neurontin I just endure the neuropathy popping nothing but Tylenol #3 when I think I'm going to pass out - I have numbness in my right foot, my calves and legs ache and the skin on the calves burns to the touch, pain radiates out of my spine to my stomach and chest down my arms. And the neurontin burned my brain literally so I have neuropathy in my head - can't wear earrings and my eyewear and even hats are uncomfortable. My eye hurts sometimes my teeth hurt. I feel fractured into little pieces and stay in my room (8 months now) with only the ocassional trip out of doors. I'm a skeleton. So if you don't hear from me just know that I read what your write - because you do a better job than I of describing the different ways the pain manifests. I can't think straight and when pain increases I can't speak - and I clearly can't communicate with medical practitioners because if I want diagnostics done - I have to arrange to get them done and pay for them. So I find comfort here amongst others dealing with this.

     
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    Old 02-16-2009, 06:36 AM   #20
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    Re: Small Fiber Neuropathy Gang

    I too am here. I have had a couple of bad weeks lately. The pain med. doesn't seem too be working as well as it did when I first started it, so you all know how that feels. They keep insisting I try an antidepressant because I cry everytime I go to my appt. I get such bad side effects from them and I swear that each one I try makes my neuropathy worse. I am on citralopram now for 6 days and every joint in my body hurts. I get a stabbing pain in my upper left back and the pain shoots all down my left arm, making my elbow and hand go numb. I told myself I would stay on this until I saw my PM doctor this Friday, just so they can't say I didn't give it a chance, I am also hoping it will kick in and do some help. I too am a grandmother who is missing out on the wonderful time of watching my grandkids. I miss working so much too, all of the people contact, I don't get that anymore. I try to keep doing the housework and shopping and then at the end of the day I just lay on the couch in pain. My husbad works full time and has a bad knee but he never gives up hope that something will help. I have such bad experiences with all of the usual drugs for neuropathy I don't know where to turn anymore. I just wish I knew what caused mine, maybe I could get on with my life if I only knew what I was up against. I am sitting here crying typing this, so , so much for the anti-depressant working. Please everyone, don't stop posting, sometimes you are my only human contact outside of my wonderful husband.

     
    Old 02-17-2009, 04:05 PM   #21
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    Re: Small Fiber Neuropathy Gang

    Hello to all. I've been on my current dosages of meds since last May. The past week I have had alot more pain in my legs and feet. So much so that all I want to do is stay in a warm bed. It seems like whenever I mention that I'm doing ok, something happens. That makes me leary to share when I actually feel pretty good. For the ladies, is your pain worse during your monthly cycles? I have found this to be the case with me. Today, I just wanted to cut them off b/c they were so bad. On a good note, we rescued the cutest little dog from the shelter. Her name is Daisy and she is a cross b/w a basset hound and a border collie. She made today better for me. Now tomorrow who know's what she will be in to. Glad to hear from you both. Allie

     
    Old 02-17-2009, 07:16 PM   #22
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    Re: Small Fiber Neuropathy Gang

    Allie, I look for patterns or predictors of escalating pain. So far the only thing I notice is that I get respiratory problems - wheezing or asthma like - when pain is escalating. I haven't studied it yet but I recall reading something along the lines of pain being an inflammatory response (histamine production...). Prior to developing this pain syndrome I was not asthmatic. And yes - I agree - hormones can work for us or against us in terms of pain thresholds. On the new thread Will started - I just shared with everyone that in my desperation to wrestle pain to the ground I will be adventurous and try all kinds of different therapies. I can't seem to find a pain med that I can take with enthusiasm due to the safety profiles and side effects. So I forfeit life experiences, for now until I find a some combinations of pain management solutions that don't come with such a high pricetag.There is a painsite on the net - for grace...women in pain - about a dancer who tore a ligament and developed complex regional pain syndrome - worth reading...that and other pain mgmt sites have convinced me to try to tap into the healing powers of our bodies and minds. I listen to meditation / healing cd's and it yields pain relief (it like drugs provides a window of relief and must be repeated). I had to take a break from the acupuncture - I want to believe in it - but perhaps because I am just skin on bones - I found it difficult. The next therapy I'm going to try is reflexology. I still have to wait to see a neurologist, but I finally got an appt. with a pain specialist (at the end of March). That is a ways away yet. So much still to do on my own.

    Zoey123 - good to hear from you. I sensed you were out there, my husband too is my anchor in these stormy seas. He brings me in off the cliff over and over again. One of my greatest struggles and regrets about this pain syndrome is how I cannot help but drain my loved ones emotional and physical resources.

    Everyone here is careful about recommending or discouraging drug use. All that we can do is offer up our own experience. What I found truly disturbing was the ease with which doctors wrote Rx's for anti-depressants like Zoloft which does nothing for SFN, but has a huge impact on every other aspect of your life. I was on a totally inappropriate bundle of psych meds for 5 weeks at which point I took control back and stopped them (and suffered more pain and instability) so listen to your body - if the anti depressant seems inappropriate for you carefully taper yourself off of it.

    Last edited by 2morrow; 02-17-2009 at 08:31 PM.

     
    Old 11-04-2009, 11:56 AM   #23
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    Re: Small Fiber Neuropathy Gang

    Hello SFN Gang,

    This is my first attempt at blogging.

    I was diagnosed with Idiopathic SFN at Johns Hopkins in 1999 after 6+ months of painful testing by a multitude of specialists.

    I currently take 2700-3000mg/day of Neurontin which makes the condition "manageable."

    When I was first diagnosed at age 45, I was only the 2nd youngest Johns Hopkins had ever seen, the next youngest being 29.

    Little to No info was even available at the time online. Now there seem to be many bloggers out there with this condition.

    If I can figure out how to find this webpage again, I'll continue to contribute any info if I can be of help!

     
    Old 11-05-2009, 05:36 PM   #24
    will54
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    Re: Small Fiber Neuropathy Gang

    Hello Copsmama,

    I'm Will54, (Will), Anwise67 (Allie) has stopped writing in this board. I know this because she has told me. I'll ask her if she will write again. Please continue to write as I or other people will communicate with you. I have a board "I have SFN - Do You" running at the moment. I would be glad to communicate with you as any new input is always welcome with such a disease that we have.
    Please continue to write,

    Will

     
    Old 05-19-2010, 02:55 AM   #25
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    Re: Small Fiber Neuropathy Gang

    I am currently taking gabapenton 200 mg 3 times a day and it does seem to help but I do still have the extremely sensitive skin, especially on my upper arms. There is something else I noticed: my finger tips tend to get numb, especially when I am driving. This is a recent development. I do not have this problem with my feet but my feet do burn on the bottoms and they peel.

    Sometimes the skin on the backs of my legs is very sensitive but the problem is not as severe as it is on my arms. Sometimes I have around my neck and on my back.

    I am relieved that there are other people out there with this, even though I am not sure I have SFN. I have to ask my neuro if he can take the skin test to be sure. So far, people's descriptions of their symptoms come close to my experience. I still haven't heard of anyone having the extreme sensitivity to clothing on arms.

    I am sorry for what you are all going through and it is scary that this thing progresses. My neuropathy has definitely gotten worse since this time last year.

    Last edited by CheyenneW; 05-19-2010 at 03:02 AM.

     
    Old 05-20-2010, 07:53 PM   #26
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    Re: Small Fiber Neuropathy Gang

    Quote:
    Originally Posted by CheyenneW View Post
    I am currently taking gabapenton 200 mg 3 times a day and it does seem to help but I do still have the extremely sensitive skin, especially on my upper arms. There is something else I noticed: my finger tips tend to get numb, especially when I am driving. This is a recent development. I do not have this problem with my feet but my feet do burn on the bottoms and they peel.

    Sometimes the skin on the backs of my legs is very sensitive but the problem is not as severe as it is on my arms. Sometimes I have around my neck and on my back.

    I am relieved that there are other people out there with this, even though I am not sure I have SFN. I have to ask my neuro if he can take the skin test to be sure. So far, people's descriptions of their symptoms come close to my experience. I still haven't heard of anyone having the extreme sensitivity to clothing on arms.

    I am sorry for what you are all going through and it is scary that this thing progresses. My neuropathy has definitely gotten worse since this time last year.
    CheyenneW.

    200 Gabapentin 3x/day sounds like a low dose.

    I've been taking 2,700-3,000mg/day since 1999. Re: numb fingers with driving... try wiggling your fingers & loosening your grip on the steering wheel. If you're wearing any rings on your fingers, remove them, that will relieve some pressure on your fingers.

    Re: the clothing, again I think the higher dose will relieve some of that pain as well. How long have you been on 600mg/day?

    Hoping this will help you some. This is one instance where I wish I couldn't say "I know what you're going through, been there, done that!"

    CopsMama

     
    Old 05-20-2010, 07:55 PM   #27
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    Re: Small Fiber Neuropathy Gang

    CheyenneW.

    200 Gabapentin 3x/day sounds like a low dose.

    I've been taking 2,700-3,000mg/day since 1999. Re: numb fingers with driving... try wiggling your fingers & loosening your grip on the steering wheel. If you're wearing any rings on your fingers, remove them, that will relieve some pressure on your fingers.

    Re: the clothing, again I think the higher dose will relieve some of that pain as well. How long have you been on 600mg/day?

    Hoping this will help you some. This is one instance where I wish I couldn't say "I know what you're going through, been there, done that!"

    CopsMama

     
    Old 05-20-2010, 08:40 PM   #28
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    Re: Small Fiber Neuropathy Gang

    Hi Will,

    Look how long it took me to find this website again! LOL

    How are you doing? Any changes?

    My SFN is still basically the same... I have Bad Days & Worse Days although I would like to say ...Good Days & Better Days.

    I find if I do any amount of walking.. grocery store, mall, etc My right leg which gives me the most trouble seems aggravated. Here in Maryland, our constantly changing weather also aggravates the SFN. Neurontin/Gabapentin & bed rest absolutely help!

    There's no question this is a progressive disease. I guess the longer I live with it, the more I get used to living with & coping with it. What I miss the most is being able to schedule anything. I must admit I'm envious of folks who pull out their calendars & "schedule things in the future!" Oh, the good old days, when I was one of those folks.

    I'm going to Bookmark this page, so I can find it again (sooner than 6-7 months!)

    Copsmama

     
    Old 08-21-2010, 12:57 PM   #29
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    Re: Small Fiber Neuropathy Gang

    I had surgery in May 2010.10 Days later i started to feel really ill..pretty much got bed ridden..all kinds of terrible sensations going on inside me. Then my feet started to burn. I,m at a menopausel age(51) so everybody just told me i was having a hard time.I knew it couldnt be ..it was just to harsh..numerous ER trips, Doc appointments..everything showing normal except B12 low (225) This is how ive done my own research.i really believe the surgery and the B12 deficiency bought this on. Now all these months later and more tests by a neurologist (EMG) which was normal and sending me away with anti depressents and ive had to really find out for myself whats going on. The skin on my body started to get tight..body stocking feeling, worse in my legs and arms,feet and hands. My skin is sore and looks different.. kinda shiney in some places, old looking..like very small wrinkles...like its just drying up day by day. I also feel really ill. I wake up now and my joints really hurt. I,m going back to the neuro and telling him i want a skin biopsy.I dont know why he didnt suggest it after i told him my skin was sore and didnt feel right. I,m really scared to have to think i have to live like this.All these months of Doctors just blowing me off..telling me i was depressed.All the while i am slowly getting worse day by day.

     
    Old 08-22-2010, 05:56 PM   #30
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    Re: Small Fiber Neuropathy Gang

    Hi, I've just been reading some posts and have known it is not unusual for doctors to treat women poorly, especially when they can't help them. It is much easier to blame it on a woman's mental health than to try and find an answer.

    I started with polyneuropathy. Then the tingling turned to burning feet and burning hands with painful calves and forearms. The burning turned to the worst , most painful, coldness. Now the numbness has become greater and is extending up my legs while it remains mostly just in my hands,not moving up my forearms. The warm weather has been great but the hot weather has done me in with my autonomic neuropathy. I am not looking forward to the cold Northeast weather. My Raynaud's was triggered by this rainy day in the low 60's!

    It took two skin biopsies (one at the ankle and one at the thigh)to prove to these unbelievers that I had SFN and even with that they were not sure. I was dx with conversion disorder because the doctor had never seen anything like the stiffening episodes I have before in his life! How's that for science?

    A sense of humor is needed for survival. I have been on crutches for six years, have had three foot surgeries on the same thing, and have been left unable to walk without pain. I wear AFOs to help with foot drop and to help the foot that was fused at the wrong angle. I can't get anyone to sue the offending doctor because of his reputation and the group he belongs to so I have gone back to him just to bug him every six weeks. I'm hoping he will eventually break down and come up with a decent solution. Just in case he doesn't, my knee doctor from another practice has set me up with the foot specialist there. Legally I have to sue within 2 and a half years of not seeing this offending doctor - another reason for going back just in case I find a qualified and compassionate lawyer, if such a person exists!

    My faith keeps me from depression and pity parties and keeps me active in helping others. I do not do well with drugs so I reserve them for the times when I simply need a break. I love gardening but, even with sitting on a garden bench, my left knee and my right foot get nasty about the whole thing. I just pursue, giving in only when I absolutely can't tolerate it any more. The pleasure I get from my flowers and vegetables outweigh the pain. Now I don't feel the same way about housework however! I do have a power chair I use in the house so that helps me out a bit to do chores that are on the bottom of my favorites list.

    I hope you find some joy, something fun in your life today and every day.
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