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 found that Lyrica works better than gabapentin. Not a silver bullet, but better.

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I refuse to take gabapentin due to reported neurological side effects and my family history of alzheimers. Taking Lyrica but not sure it's helping. Fascial Counterstrain seems to work well on my general odd pains, but often need dry needling to calm muscle tension. My therapist uses many manual techniques: https://burkhardtpt.com/techniques/#1558470503786-b0f0d435-f4ca

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@irishlady1974

I refuse to take gabapentin due to reported neurological side effects and my family history of alzheimers. Taking Lyrica but not sure it's helping. Fascial Counterstrain seems to work well on my general odd pains, but often need dry needling to calm muscle tension. My therapist uses many manual techniques: https://burkhardtpt.com/techniques/#1558470503786-b0f0d435-f4ca

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lyrica is same as gabapentin so it may not help either

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Gabapentin withdrawal continues to be quite horrible as I live though this week on 700 mg. The vomiting has paused, but the shaking, heart racing, and insomnia continues. I looked anywhere on the internet for withdrawal education. None. Lonely. There is education for those that abuse it. Yik. I couldn't tolerate 1200 mg. And the other information says that it is that it is a breeze. Each site says how wonderful it is for absolutely every stinkin thing.How sad and misleading. The only information about and side effects is a pharmacy insert. Theses were reputable sites.It seems like it is being sold rather that patient information. Remember it was taken off of my allergy list and represcibed because it could do no harm. Patients get no information

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Gabapentin withdrawal adds a new lonliness to small fiber neuropathy. The neuropathy is through my arms and legs. I have now taken the tapor from 1200 to 600 in 22 days. The tapor was slow at first, but when I lost my job I didn't see the sense in slowing a tapor. It took two years and 19 medications to finally get here. The pain is pretty my much covered, but the last two medications that did not suit me were prednisone and gabapentin. As I will repeat until I get through withdrawal, gabapentin was taken fromy allergy list and represcibed. I have gone through this horrible experience before. The gabapentin withdrawal vomiting is better but I have constant nausea. The panic attacks and the palpitations are severe. The sweating and the heartrate racing off and on is severe. Please dont start taking gabapentin unless you discuss all side effects and are knowledgeable of withdrawals.

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Anyone here go from burning feet to unbearable leg pain in a short period of time ? 3 months for me.

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@graysea

I saw my endocrinology doctor. I have seen him onging, before I was
diagnosed small fiber neuropathy, for thyroid issues. My small fiber
neuropathy was caused by a discontinuation of a medication and not
pre-diabetes as far we can tell. I was being assessed for prednisone
withdrawal.

He ordered a myriad of blood tests. He is keeping me on 6.5 mg of
prednisone. In order to do accurate cortisol tests I would have to go off
of prednisone, which is not recommended. Also, the high dose prednisone
was masking adverse side effects of gabapentin. This being dizziness,
nausea, and overall low quality of life. Gabapentin was a page of hell for
me. As I have said previously, I had severe side effects. Then it was
represcibed, only to have those side effects again. Because of the severity
of Gabapentin side effects, Lyrica is not recommended. I will stay on 6.5
mg of prednisone until gabapentin is tapored. Other pain treatments will be
started, then more taporing of prednisone. I still only sleep between four
to five hours a night.

I walk a mile a day, do breathing exercises, and am on a low carb diet. I
pray.

I need encouragement.

Im discouraged.

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Gabapentin withdrawal is a horror story. I was on 1200 mg. and experienced very bad side effects. I have been taporing. Shame on doctors that over prescribe a medication that can cause such side effects. Shame on them for NOT counseling patients on possible side effects and withdrawal. Did anyones doctor tell them that severe depression, cardiac problems, ringing in the ears, and lower sleep quality can be reaction s to Gabapentin. I was told that I would have little to no withdrawal from the neurologist that prescribed this medication. Yet I have stopped sleeping, sweat, vomit, and have ongoing panic attacks. This is Gabapentin withdrawal. Because of the stress of the withdrawal my neuropathy pain is increased. Yes, Im on a tapor, no that doesn't take away the withdrawal symptoms. It makes me capable of putting one foot in front of another. Thank the good Lord I didn't listen to this doctor. For small fiber neuropathy it has zip pain relief, yet this drug that I was suffering from so many side effects , he wanted to just increase. It was on my allegy list. He was so convinced that this was the end all of all medications. He prescribed it from my allergy list. Im sure this is an excellent medication for many people. Yet have your doctor discuss all side effects.

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@graysea

Gabapentin withdrawal is a horror story. I was on 1200 mg. and experienced very bad side effects. I have been taporing. Shame on doctors that over prescribe a medication that can cause such side effects. Shame on them for NOT counseling patients on possible side effects and withdrawal. Did anyones doctor tell them that severe depression, cardiac problems, ringing in the ears, and lower sleep quality can be reaction s to Gabapentin. I was told that I would have little to no withdrawal from the neurologist that prescribed this medication. Yet I have stopped sleeping, sweat, vomit, and have ongoing panic attacks. This is Gabapentin withdrawal. Because of the stress of the withdrawal my neuropathy pain is increased. Yes, Im on a tapor, no that doesn't take away the withdrawal symptoms. It makes me capable of putting one foot in front of another. Thank the good Lord I didn't listen to this doctor. For small fiber neuropathy it has zip pain relief, yet this drug that I was suffering from so many side effects , he wanted to just increase. It was on my allegy list. He was so convinced that this was the end all of all medications. He prescribed it from my allergy list. Im sure this is an excellent medication for many people. Yet have your doctor discuss all side effects.

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,...what a horror story. I was put on zoloft and clonazepam over 15 years ago and was never ever told by that dr nor the 2 following doctors that it was habit-forming; nor by the pharmacist or anyone else. After taking so long I was not even feeling the effects but when tried to get off it! Twice I got off the Zoloft myself with no help; but the Clonazepam no way and am still on it years later.... I totally agree and someone tried to sue a dr here in Ontario Canada for not advising him just for six weeks that patient would have difficulty getting off the drug and I was on it for many years - originally given to me as sleep aid and no one told me otherwise! Neither I nor my family has ever sued anyone but really maybe medication providers should be taken to task for not explaining the implications of starting a certain medication; although now with first prescription you can get page/s of information from pharmacy.... however, it is usually about side effects NOT stopping the meds, correct? I feel for you... and not only on tapor but perhaps a local agency who has social workers for support getting off medications - its not only those taking street drugs who suffer from withdrawal but as you explain, regular patients just taking what their dr. orders. Not to condemn all drs, but takes ten minutes to explain what might happen when patient stops taking the meds; best wishes and I hope you can get more support...this is why drs. do what they did to me, leave the person on the drug as its easier than providing support to get off??? Even cigarettes, some smokers can just give it up after years and some never lose the addiction or have major withdrawal ,... we are all different. Take care. J.

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@lacy2

,...what a horror story. I was put on zoloft and clonazepam over 15 years ago and was never ever told by that dr nor the 2 following doctors that it was habit-forming; nor by the pharmacist or anyone else. After taking so long I was not even feeling the effects but when tried to get off it! Twice I got off the Zoloft myself with no help; but the Clonazepam no way and am still on it years later.... I totally agree and someone tried to sue a dr here in Ontario Canada for not advising him just for six weeks that patient would have difficulty getting off the drug and I was on it for many years - originally given to me as sleep aid and no one told me otherwise! Neither I nor my family has ever sued anyone but really maybe medication providers should be taken to task for not explaining the implications of starting a certain medication; although now with first prescription you can get page/s of information from pharmacy.... however, it is usually about side effects NOT stopping the meds, correct? I feel for you... and not only on tapor but perhaps a local agency who has social workers for support getting off medications - its not only those taking street drugs who suffer from withdrawal but as you explain, regular patients just taking what their dr. orders. Not to condemn all drs, but takes ten minutes to explain what might happen when patient stops taking the meds; best wishes and I hope you can get more support...this is why drs. do what they did to me, leave the person on the drug as its easier than providing support to get off??? Even cigarettes, some smokers can just give it up after years and some never lose the addiction or have major withdrawal ,... we are all different. Take care. J.

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Thank you so much for your reply. It makes my situation less lonely.

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Gabapentin will probably soon be regulated. At this junction a team approach and teaching will most likely happen. It is grossly overprescribed for off label causes and when it is not effective,

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