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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My heart is with you. Hugs

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@graysea

I was referred to an endocrinologist. I will see him at the end of the month. Initially, when I was prescribed prednisone 40mg, I slept very little. My thoughts were blurred. I got no pain relief. Withdrawal has been a struggle. The second month I aquired tittintus from the withdrawal .It was suspected that it eas caused by a cortisol flux.
I will see if he orders more blood work. Very sad that I have had to struggle. The tapor should have started when they ruled out the disease. But it didn't. They got "busy". I just have to forgive. I guess when a person is going through hell, dont stop, keep going. I get out sooner or later. I wish I wasn't a victim of an office being "busy"

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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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I feel the a exact same way!!!!!! I won't stop trying to feel better and get pain free!!!!! 🙏🏼

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I am saddened today. An old friend of mine edits a medical journal. She wanted to write my story. No name, address or identifying information. Just my journey. My records were going to be completely cleansed of identity. However, I was told I couldn't do this because of liability. I cant even speak of my journey. I have to just be quiet. Im not even worth a story. I never pursued legal isues because they were med errors. My two current doctors are great. They listen and make me feel self worth. They treat me like Im more than a med error or embassment. They are working very hard. Thank you for listening. Its just a rough patch. I will find another outlet. Maybe Ill draw. Right now, its time for my walk.Take care everyone

REPLY
@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.

Jump to this post

I just had a pain reaction to lyrica like a 10 in pain. Your story is helpful thanks for sharing. Hang in there. I am too adding a new drug Wellbutrin at night. tramadol in the day from the pain doc.

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@smigal

I just had a pain reaction to lyrica like a 10 in pain. Your story is helpful thanks for sharing. Hang in there. I am too adding a new drug Wellbutrin at night. tramadol in the day from the pain doc.

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Tell me how the Wellbutrin works. If it helps with your pain, I may ask my internist about it.

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@graysea

Tell me how the Wellbutrin works. If it helps with your pain, I may ask my internist about it.

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low dose cymbalta helped until I went to 30 mg. 1% can get irregular bleeding. Yep I had GI bleed so that's why I am trying something weaker. I had tube the 1% in the over 50 age group. Not giving up!

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@smigal

low dose cymbalta helped until I went to 30 mg. 1% can get irregular bleeding. Yep I had GI bleed so that's why I am trying something weaker. I had tube the 1% in the over 50 age group. Not giving up!

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I bet the Wellbutrin works for you.

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@graysea

I am saddened today. An old friend of mine edits a medical journal. She wanted to write my story. No name, address or identifying information. Just my journey. My records were going to be completely cleansed of identity. However, I was told I couldn't do this because of liability. I cant even speak of my journey. I have to just be quiet. Im not even worth a story. I never pursued legal isues because they were med errors. My two current doctors are great. They listen and make me feel self worth. They treat me like Im more than a med error or embassment. They are working very hard. Thank you for listening. Its just a rough patch. I will find another outlet. Maybe Ill draw. Right now, its time for my walk.Take care everyone

Jump to this post

You might not get published in a medical journal, but you sure can contribute on here to help others. By sharing ideas on tests, treatments, things we may be overlooking, and remedies found that help you cope and manage your situation, you’re helping so many others on here who are enduring this same vague diagnosis and trying to borrow from all the experiences out there. That helps lessen our load in trying to find what works best for us individually, and hopefully help each other get maximum comfort as soon as possible to make the best of our situations and enjoy life best we can. So keep your chin up, there’s plenty ways to help folks through this forum! Hugs

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Thank you, Maybe I will start sharing bits of my story. It's a story of of speaking and no listening. Rocking and screaming into a pillow. Being terrified because of no diagnosis. Then, everyone makes mistakes. I do not have pain free moments. Im struggling to tapor off medications. I almost lost everything, but I didn't. I work hard at living. Because life is a gift.

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