Small Fiber Neuropathy discouraged

Posted by graysea @graysea, Jul 14 7:25am

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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Hi @graysea, You mentioned the tapering off prednisone was causing some anxiety in another discussion. Has your doctor done any blood tests to check your cortisol level? It might be something that explains how you are feeling when you are trying to taper off of prednisone.

Here's some information that explains what might be happening…
"How Long Will Withdrawal Symptoms Last?
It’s normal to feel some mild symptoms for about a week or two as you taper off prednisone. Don’t take any OTC pain medicine or prescription drugs without asking your doctor first.

Psychological withdrawal symptoms could last for 2 to 8 weeks. The doctor may give you blood tests to check your cortisol levels as you taper off prednisone. You may need to taper off more slowly or go back to your regular dose if you have severe symptoms."
— Prednisone: What to Know About Withdrawal Symptoms: https://www.webmd.com/drug-medication/prednisone-taper

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@johnbishop

Hi @graysea, You mentioned the tapering off prednisone was causing some anxiety in another discussion. Has your doctor done any blood tests to check your cortisol level? It might be something that explains how you are feeling when you are trying to taper off of prednisone.

Here's some information that explains what might be happening…
"How Long Will Withdrawal Symptoms Last?
It’s normal to feel some mild symptoms for about a week or two as you taper off prednisone. Don’t take any OTC pain medicine or prescription drugs without asking your doctor first.

Psychological withdrawal symptoms could last for 2 to 8 weeks. The doctor may give you blood tests to check your cortisol levels as you taper off prednisone. You may need to taper off more slowly or go back to your regular dose if you have severe symptoms."
— Prednisone: What to Know About Withdrawal Symptoms: https://www.webmd.com/drug-medication/prednisone-taper

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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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Ask your doctor if they can put u on Bupropn, clonazepam and Ropinirole ( at night).
Hospice put me in Bupropn and it made a world of difference in pain and my overall attitude. Clonazepam and Ropinirole I take just at night and my pain level is improved tremendously. I also use THC gummy bears and low dose (1mg) of Kratom.
Kratom took me off all the opiates and will help you with getting off the tapered medication they are trying to help you get off.
I have small fiber sensory neuropathy along with Autonomic Neuropathy ( hence hospice cause it’s killing the nerves in my heart).
Most dr. Know nothing about Kratom but it’s been helping millions of us and has no side effects and you cannot tell you are taking other then major pain relief. It’s from the coffee tree family and has been used for centuries in Asia for pain relief and opiate withdrawals.
This is what has giving me relief and hope. Please chat with your neurologist about this.
My heart goes out to you because neuropathy is a horrific disease. I hope this helps and gives you some hope.

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Thank you so much for your reply. I will ask my intenist about your suggestions. I know little about small fiber neuropathy other than after nerve testing the neurologist gave me the diagnosis and a educational link.
Thank you for being a kind soul to me.

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I dont mean to be discouraged. Its my journey, but I can't stop thinking about what life would have been like if I wasn't a walking med error. I wouldn't have small fiber neuropathy or a year and countingon prednisonewithdrawal. I was told that everybody makes mistakes, forgive and move on. I will. There is no law suit because of a med error. No one said Im sorry. I feel insignificant. I need to move forward or at least pretend to move forward. Fake it till I make it. I pray alot. Its hard being labeled an error. I just need folks to say some kind things to me for awhile. Meds will help, I see a counselor and time will help too. I just need some positive thoughts. I am tough. Life is good. I am willing to send anyone positive thoughts too.

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@graysea

I dont mean to be discouraged. Its my journey, but I can't stop thinking about what life would have been like if I wasn't a walking med error. I wouldn't have small fiber neuropathy or a year and countingon prednisonewithdrawal. I was told that everybody makes mistakes, forgive and move on. I will. There is no law suit because of a med error. No one said Im sorry. I feel insignificant. I need to move forward or at least pretend to move forward. Fake it till I make it. I pray alot. Its hard being labeled an error. I just need folks to say some kind things to me for awhile. Meds will help, I see a counselor and time will help too. I just need some positive thoughts. I am tough. Life is good. I am willing to send anyone positive thoughts too.

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Hi @graysea, From an old sailor, I wish you fair winds and following seas. It's not always easy to move on even though we can tell ourselves that's what we need to do. I find filling my head with positive thoughts is defintely the way to go. If you have a little time (about 18 minutes), this is a great video by Dr. Amit Sood that really helped me when I needed a little push.

Happy Brain: How to Overcome Our Neural Predispositions to Suffering | Amit Sood, MD | TEDxUNI

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@johnbishop

Hi @graysea, From an old sailor, I wish you fair winds and following seas. It's not always easy to move on even though we can tell ourselves that's what we need to do. I find filling my head with positive thoughts is defintely the way to go. If you have a little time (about 18 minutes), this is a great video by Dr. Amit Sood that really helped me when I needed a little push.

Happy Brain: How to Overcome Our Neural Predispositions to Suffering | Amit Sood, MD | TEDxUNI

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Ok, had try cry a bit. But it was heart tears. Thank you. You'll never know how much it helps. Im going to settle down a bit and watch the video you suggested.

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@graysea

I dont mean to be discouraged. Its my journey, but I can't stop thinking about what life would have been like if I wasn't a walking med error. I wouldn't have small fiber neuropathy or a year and countingon prednisonewithdrawal. I was told that everybody makes mistakes, forgive and move on. I will. There is no law suit because of a med error. No one said Im sorry. I feel insignificant. I need to move forward or at least pretend to move forward. Fake it till I make it. I pray alot. Its hard being labeled an error. I just need folks to say some kind things to me for awhile. Meds will help, I see a counselor and time will help too. I just need some positive thoughts. I am tough. Life is good. I am willing to send anyone positive thoughts too.

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@graysea Hello there. You tugged at my heart strings. I'm so sorry for your misfortunes and very much so relate to your feelings of "what would life be like if…" ? My "if" may be different than yours, but I sure do understand the feelings of anger, disappointment and grief, and going down rabbit holes.

Fake it til you make it is going to take time. You've got the right mindset and know what you should be doing and feeling, but it's hard to do.

Here's what I learned while attending the Mayo Clinic 3 week Pain Rehabilitation program…

Write a letter to your doctor to tell them exactly how you feel about their mistake and how angry you are that your life has changed. Get it all out on paper, but DO NOT mail the letter.

Give yourself grace and time, learn to forgive (but not forget), and come to terms by putting it behind you.

I learned that constantly reading or talking about your problem or conditions can keep you focused on what is wrong and what you have lost, rather than your abilities and positive features of your life. I keep a daily gratitude journal and it helps me to visually see what I still have and what is good in life. Find your blessings.

I hope you feel my positive thoughts coming your way. I believe in you and your ability to heal your mind so you can better assist your body. Keep your chin up, my friend.

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Thank you, you and others are so wise. My journey has been like a bad country western song. After two and a half years it was told to us small fiber neuropathy was a medication error, my prednisone withdrawal was going bad, and I couldn't be taken off of gabapentin yet. But please don't talk about the cause at appointments or therapy for pain etc. I feel very ashamed of my condition. So a solitary letter feels just lonely. My shame needs to be private. I just wish I didnt have to deal with taking a medicine that I never needed to take. I need to deal with that anger. But quietly.
The only way I think I can make it is with positive steps. When you and others wrote positive idea or statements I wrote them down. You kindheartedness helped me take a few more steps.
I joined the chat group to learn, but it was selfish. I was filling a need. My pain partner was awesome. I made the best friend. We sent positive statements, prayers etc. She died recently, so I tried a chat group.
You are right its I will focus outward. The journey goes on.

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@graysea

Thank you, you and others are so wise. My journey has been like a bad country western song. After two and a half years it was told to us small fiber neuropathy was a medication error, my prednisone withdrawal was going bad, and I couldn't be taken off of gabapentin yet. But please don't talk about the cause at appointments or therapy for pain etc. I feel very ashamed of my condition. So a solitary letter feels just lonely. My shame needs to be private. I just wish I didnt have to deal with taking a medicine that I never needed to take. I need to deal with that anger. But quietly.
The only way I think I can make it is with positive steps. When you and others wrote positive idea or statements I wrote them down. You kindheartedness helped me take a few more steps.
I joined the chat group to learn, but it was selfish. I was filling a need. My pain partner was awesome. I made the best friend. We sent positive statements, prayers etc. She died recently, so I tried a chat group.
You are right its I will focus outward. The journey goes on.

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Do you have horrible neuropathy? I’m on Cymbalta and Gabapentin but the horrible pain is still there. I am now having my foot wobble and go out of control.

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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"

Jump to this post

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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