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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graysea | @graysea | Apr 9, 2023

In reply to @graysea "More portal messages telling me I have no options. This is their way of saying," no..." + (show)

Pain in my thighs and legs. Pain all of the time. I have insurance, but I'm a done deal. As one nurse said, " What would Mayo Clinic do, they are not magicians " For awhile that was something on my hope list." I three the hope list away it is a stupid mechanism. I continue to use others

kerdo1888 | @kerdo1888 | Apr 10, 2023

In reply to @kerdo1888 "thanks for your reply today i feel a lot better i was so strange ,but it..." + (show)

hi sorry took so long to reply i have been coming off Gabapentin more or less cold turkey after end of JAN was on 6 300ml per day as have cervical n spinal stenosis only 1 vertebrae in neck that is not grinding ,god when i look at the floor my neck clicks forward more , also i feel as if my right ear is tugged on when move my neck must be nerves L4 AND 5 in my back are bulging reason i can hardly move my left leg in morning , so now only on 2 300ml not spoke to doctors as in Scotland no longer get appointment its over the phone , theses tablets are a nightmare i feel totally depressed every morning and when out i only want to get back home ,soon as i am home i wonder why i left visiting family , sorry for the rant ,but thanks for the reply

graysea | @graysea | Apr 10, 2023

In reply to @graysea "More portal messages telling me I have no options. This is their way of saying," no..." + (show)

I am on the floor rocking back and forth. I got in bed to cry. I'm trying deep breath. The pain is too much. Yet there is nothing anyone can do.

graysea | @graysea | Apr 10, 2023

In reply to @graysea "More portal messages telling me I have no options. This is their way of saying," no..." + (show)

I'm a through away. My life is rocking back and forth in pain

graysea | @graysea | Apr 10, 2023

In reply to @graysea "I'm a through away. My life is rocking back and forth in pain" + (show)

I wish I could give up, but I can't. I can't hurt myself. Instead I cry and rock back and forth. This will be for the rest f my life

graysea | @graysea | Apr 10, 2023

In reply to @graysea "More portal messages telling me I have no options. This is their way of saying," no..." + (show)

So much pain

graysea | @graysea | Apr 11, 2023

In reply to @graysea "I am on the floor rocking back and forth. I got in bed to cry. I'm..." + (show)

My husband has called the doctor. I am just to be in pain. We will try the hospital again. I now know why people give up

julbpat | @julbpat | Apr 11, 2023

In reply to @graysea "My husband has called the doctor. I am just to be in pain. We will try..." + (show)

You sound so depressed - I’m sure you know that, and hopefully have been treated for that. I’m glad your husband is with you and has called the doctor. Hopefully today will be the day for change. A hospital stay with some IV treatments and medical staff to offer support might help?

Colleen Young, Connect Director | @colleenyoung | Apr 11, 2023

In reply to @graysea "My husband has called the doctor. I am just to be in pain. We will try..." + (show)

@graysea, like @julbpat, I'm glad that you are seeking help from the doctor and/or the hospital. Do you also work with a psychologist, therapist or social worker already? If not, you might consider asked for a consult to help support you.