Small Fiber Neuropathy discouraged

Posted by graysea @graysea, Jul 14, 2022

I had minimal health issues until the fall of 2019. My general practioner dc'd a medication cold turkey. This caused small fiber neuropathy. It took two years to diagnose and treat. I spent two years in my husbands arms screaming and crying. In February of 2021 my neurologist placed me on 40 mg of prednisone. I reacted poorly, without pain relief. He was ruling out poly rheumatatica. In June the dictor removed Gabapentin from my allergy list . The nurse stated I would not have the same response. I did. It was hell. By this time the neurologist was uncomfortable taporing me off of prednisone. I have been taporing for slmost a year. The tapor is hell. Im currently on 6 mg. I am currently being treated for pain. The prednisone tapor is suppose to last until Dec. I lost almost everything in the last 3 years. I keep on trying. I wont stop trying to feel better.

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I have contacted my internist because the Gabapentin tapor is going badly. This is my second tapor. Gabapentin is overprescribed out of desperation is my take of the situation. Gabapentin was on my allergy list. I do not have a condition Gabapentin treats. Withdrawal symptoms are very bad. In my case slowing a tapor is not as successful because the side effects were so debilitating. Maybe medical professionals should take the time to discuss this pain option. I think patient education is extremely important. I wish I would have received patient education not a titrating schedule. But a true discussion of this medication. Maybe I would have gone through this once, let alone twice.

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@graysea

I have contacted my internist because the Gabapentin tapor is going badly. This is my second tapor. Gabapentin is overprescribed out of desperation is my take of the situation. Gabapentin was on my allergy list. I do not have a condition Gabapentin treats. Withdrawal symptoms are very bad. In my case slowing a tapor is not as successful because the side effects were so debilitating. Maybe medical professionals should take the time to discuss this pain option. I think patient education is extremely important. I wish I would have received patient education not a titrating schedule. But a true discussion of this medication. Maybe I would have gone through this once, let alone twice.

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Graysea,
I went through a long-drawn-out situation with small fiber neuropathy(downward below knees) where I was given Gabapentin before I was sent to the pain clinic. It never helped me even as dosage was increased twice. The doctor at PC started me on Amitriptyline which helped right away. Dosage was increased and it brought my pain under control. I been on it ever since, now, several years.
If you haven't been tried on this, you might want to look into it.

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@artv

Graysea,
I went through a long-drawn-out situation with small fiber neuropathy(downward below knees) where I was given Gabapentin before I was sent to the pain clinic. It never helped me even as dosage was increased twice. The doctor at PC started me on Amitriptyline which helped right away. Dosage was increased and it brought my pain under control. I been on it ever since, now, several years.
If you haven't been tried on this, you might want to look into it.

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Thank you so much for responding. I need help in problem solving. My small fiber neuropathy is in my legs, arms and hands. Sometimes it will flare up in my feet. It is not diabetic related. In the fall of 2020 and winter of 2021, the neurologist titrated amytriptiline to 120 mg. It did help somewhat in my hand. He tapored this back down. This is when he started a prednisone burst 60 mg for 2 weeks, 40 mg for two weeks, then 20 mg daily. The prednisone caused me to stop sleeping, be aggitated, and just plan sob. By the time I asked for help in getting off the prednisone, his office redirected me to see an internist for a tapor. I started the tapor in September of 2019. I am on 5 mg prednisone. It is being held during the gabapentin tapor. Gabapentin did nothing for small fiber neuropathy. Gabapentin is not prescribed for this because it doesn't work.
Thank you again for reaching out. It helps me and may help others.

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@graysea

Thank you so much for responding. I need help in problem solving. My small fiber neuropathy is in my legs, arms and hands. Sometimes it will flare up in my feet. It is not diabetic related. In the fall of 2020 and winter of 2021, the neurologist titrated amytriptiline to 120 mg. It did help somewhat in my hand. He tapored this back down. This is when he started a prednisone burst 60 mg for 2 weeks, 40 mg for two weeks, then 20 mg daily. The prednisone caused me to stop sleeping, be aggitated, and just plan sob. By the time I asked for help in getting off the prednisone, his office redirected me to see an internist for a tapor. I started the tapor in September of 2019. I am on 5 mg prednisone. It is being held during the gabapentin tapor. Gabapentin did nothing for small fiber neuropathy. Gabapentin is not prescribed for this because it doesn't work.
Thank you again for reaching out. It helps me and may help others.

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My small fiber neuropathy was caused by a med error

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My family have sought out the internet regarding Gabapentin withdrawal. This should be easy. Yet why am I sweating, vomiting, heart races, cant sleep, spikes of pain etc. This is my second tapor and its the same thing. My doctor says 100 mg a week. Why do internet searches say I can come off of this in a week?

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@graysea

My family have sought out the internet regarding Gabapentin withdrawal. This should be easy. Yet why am I sweating, vomiting, heart races, cant sleep, spikes of pain etc. This is my second tapor and its the same thing. My doctor says 100 mg a week. Why do internet searches say I can come off of this in a week?

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@graysea, I can't imagine how difficult it is for you while you are trying to taper off of Gabapentin. Yes, it should be easy but like you have discovered, it's easier said than done. I think you mentioned going from 1200 mg down to 700 mg in one day? That seems to be a large drop. I did see a good site on tapering off of Gabapentin with a more conservative approach that might be helpful for you -- https://www.ridgefieldrecovery.com/drugs/gabapentin/gabapentin-taper/.

Also, you might want to read a post by Leonard @jakedduck1 in the following discussion for a tip he shared -- Tapering Off Gabapentin: https://connect.mayoclinic.org/comment/723961/

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Thank you! The first link is so descriptive! I am going to the second link later. Im having some difficulty sitting. I was a very poor recorder. I was on 1200 mg. My internist dropped it to 900 in one week, but it has been 100 decrease a week. I will drop to 600 next weekend. I am walking better, stopped vomiting ,my ear ringing is better. So good things are happening, but I am so weak and heart rate goes up and down . Ill get through this. This site helps me.

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@graysea

Thank you so much for responding. I need help in problem solving. My small fiber neuropathy is in my legs, arms and hands. Sometimes it will flare up in my feet. It is not diabetic related. In the fall of 2020 and winter of 2021, the neurologist titrated amytriptiline to 120 mg. It did help somewhat in my hand. He tapored this back down. This is when he started a prednisone burst 60 mg for 2 weeks, 40 mg for two weeks, then 20 mg daily. The prednisone caused me to stop sleeping, be aggitated, and just plan sob. By the time I asked for help in getting off the prednisone, his office redirected me to see an internist for a tapor. I started the tapor in September of 2019. I am on 5 mg prednisone. It is being held during the gabapentin tapor. Gabapentin did nothing for small fiber neuropathy. Gabapentin is not prescribed for this because it doesn't work.
Thank you again for reaching out. It helps me and may help others.

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Unfortunately the steroids (me Prednisone) are the ones known to really help, however, they have such bad side effects the doctors want to stay away from them, if possible. I'm on the tapering down from Prednisone, while on Mycophenolate Mofetil, that I've been on for quite some time now. Like you though, I've been so disappointed with this, I don't get my hopes too much.

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I am still taporing gabapentin. This week 700 mg. The tittinus is better. I never had this before last fall. Nobody said it is a side effect of gabapentin. In fact untrue press says it helped. I called an ENT this morning. He will check my ears after Im off of gabapentin. No one told me

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@graysea

I am still taporing gabapentin. This week 700 mg. The tittinus is better. I never had this before last fall. Nobody said it is a side effect of gabapentin. In fact untrue press says it helped. I called an ENT this morning. He will check my ears after Im off of gabapentin. No one told me

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Its a common side effect, he sees alot of patients with gabapentin infuce ringing or pain. The internet just portrays this drug as an angel.

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