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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

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.

graysea | @graysea | Apr 11, 2023

In reply to @colleenyoung "@graysea, like @julbpat, I'm glad that you are seeking help from the doctor and/or the hospital...." + (show)

I'm not sure if the last message got through. The psychiatrist/counselor is great, But he redirected me to see someone that could reduce the pain.

graysea | @graysea | Apr 12, 2023

In reply to @graysea "I'm not sure if the last message got through. The psychiatrist/counselor is great, But he redirected..." + (show)

I was seen in the ER by a compassionate team. Because of my negative reaction to medications it is tough on them. They tried their hardest. An appointment has made with my internist to see if I can get on top of the pain enough to eat and rest. Wish me luck

fala | @fala | Apr 12, 2023

Hi
I was raised to be a VERY strict Pentecostal church member.

I have Severe Peripheral Neuropathy.

My Doctor recommended Cannabis.
I tried it!
It is the only thing that has EVER worked for me!!
It took me a while to figure out the correct dose, but my pain went from unbearable to tolerable.
Best wishes!!