1. < Neuropathy

Controlling the Anger and Sadness: My Neuropathy is Overtaking Me

Posted by lorirenee1 @lorirenee1, Oct 18, 2019

One of those days today where feet are just throbbing, can't find shoes to wear, can't be without shoes, loaded up on CBD, and finally not in so much pain. Just have real sleepiness from CBD. Now folks: Is this a way to live??????? How? I am such a healthy lady without this neuropathy. But it has overtaken me. Punch drunk on CBD. So messed up. I hate this. Crying. Don't know if I will ever really learn a coping strategy, deep down. How do we do this every day? This pain warrior is exhausted. Lori Renee

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

Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 24, 2019
In reply to @jimhd "@harley22 Hmm. I seem to remember the neurologist mentioning the demyelinating. I'd forgotten about that. I..." + (show)
@jimhd

@harley22 Hmm. I seem to remember the neurologist mentioning the demyelinating. I'd forgotten about that. I will ask him about it when I see him again.

Numbness is something that never goes away for me. I don't feel any sensation of temperature or pain. I feel the cold tile floor with my heels, but not with the rest of my feet. In the shower, I don't feel it when the really hot water is hitting the tops of my feet. I had a leg muscle puncture test. They poke a large needle in four places, the first one in the thigh, and downward from there. With the needle in, I had to flex that muscle. That was really painful. Until the last one which was on the top of my foot just above my toes. I didn't feel that one at all, and asked the tech if he had done it. It's a bit scary not to feel pain. For that reason I never go barefoot. It's weird though, that the same areas are very painful from the nerves. I'm not diabetic so amputation doesn't worry me, although there are many times when I wish I could cut off my feet to stop the pain. The non stop pain factor is something that drags me down.

I'm glad that my wife and I made the commitment to love and be faithful to each other in sickness and in health in our wedding vows 47 years ago. Our spouses have to put up with more than they expected when we made those vows when we were young and healthy, and yes, naive. My wife doesn't understand everything about what goes on in my head because she's never had the same experience that I have, and I wouldn't wish it on her. I also agree with you, Marilyn, that having illnesses that aren't visible presents its own set of challenges, both at home and out in public.

Jim

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Jim,
I appreciate what you told Marilyn about marriage. My husband and I made that commitment 29 years ago. It really worries me knowing at such a young age, just becomming came empty nesters, that I am for crap! My husband is wonderful and he has been for the past 6 years since my health took a turn. It makes me so frustrated that I hold him back from doing active things that we can no longer do together. I try to focus on things we can do but very limited. Nevertheless, in sickness and in health. Amen.
Rachel

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 24, 2019
In reply to @jimhd "@harley22 Hmm. I seem to remember the neurologist mentioning the demyelinating. I'd forgotten about that. I..." + (show)
@jimhd

@harley22 Hmm. I seem to remember the neurologist mentioning the demyelinating. I'd forgotten about that. I will ask him about it when I see him again.

Numbness is something that never goes away for me. I don't feel any sensation of temperature or pain. I feel the cold tile floor with my heels, but not with the rest of my feet. In the shower, I don't feel it when the really hot water is hitting the tops of my feet. I had a leg muscle puncture test. They poke a large needle in four places, the first one in the thigh, and downward from there. With the needle in, I had to flex that muscle. That was really painful. Until the last one which was on the top of my foot just above my toes. I didn't feel that one at all, and asked the tech if he had done it. It's a bit scary not to feel pain. For that reason I never go barefoot. It's weird though, that the same areas are very painful from the nerves. I'm not diabetic so amputation doesn't worry me, although there are many times when I wish I could cut off my feet to stop the pain. The non stop pain factor is something that drags me down.

I'm glad that my wife and I made the commitment to love and be faithful to each other in sickness and in health in our wedding vows 47 years ago. Our spouses have to put up with more than they expected when we made those vows when we were young and healthy, and yes, naive. My wife doesn't understand everything about what goes on in my head because she's never had the same experience that I have, and I wouldn't wish it on her. I also agree with you, Marilyn, that having illnesses that aren't visible presents its own set of challenges, both at home and out in public.

Jim

Jump to this post

And as far as you go Jim, well...you seem like a truly wonderful man yourself. You and your wife seem lucky to have each. You're one tough dude to handle all that you do!

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Oct 25, 2019
In reply to @albiet "@artscaping is there a thread on the brands of cbd that users have from to be..." + (show)
@albiet

@artscaping is there a thread on the brands of cbd that users have from to be better than others ?

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@albiet, There Is no thread or discussion that presents brands of CBD that I have seen. Would you like to start that discussion?

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1 reply
albiet | @albiet | Nov 4, 2019
In reply to @artscaping "@albiet, There Is no thread or discussion that presents brands of CBD that I have seen...." + (show)
@artscaping

@albiet, There Is no thread or discussion that presents brands of CBD that I have seen. Would you like to start that discussion?

Jump to this post

yes i will start one shortly

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axeddie | @axeddie | Jan 15, 2022
In reply to @johnbishop "Hi @harley22 -- Here's some information on small fiber neuropathy that gives a good overview of..." + (show)
@johnbishop

Hi @harley22 -- Here's some information on small fiber neuropathy that gives a good overview of what it is. I've also listed a couple of active discussions you may want to join.

Small fiber neuropathy
-- https://ghr.nlm.nih.gov/condition/small-fiber-neuropathy

> Groups > Neuropathy > Small Fiber Neuropathy?
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

Hoping you find some relief for your pain. It's good to learn as much as you can about your condition.

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Is Small Fiber Neuropathy curable/treatable? (Mostly curable?)

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 15, 2022
In reply to @axeddie "Is Small Fiber Neuropathy curable/treatable? (Mostly curable?)" + (show)
@axeddie

Is Small Fiber Neuropathy curable/treatable? (Mostly curable?)

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I'm pretty sure there is wide consensus that the symptoms are treatable but there is no cure. I do think there are cases when neuropathy is caused by a pinched or damaged nerve it may be possible to cure if a surgery or other treatment can relieve the pressure on the pinched nerve or repair the damaged nerve...but that's just my non medical opinion. It really also depends on each persons condition or situation when talking about treatments. A lot of times there are multiple conditions or issues that are possibly causing the neuropathy and make take trying multiple treatments before finding some relief.

I keep hoping for that one magic bullet that makes it all go away 🙂

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windsorchris | @windsorchris | Jan 16, 2022
In reply to @axeddie "Is Small Fiber Neuropathy curable/treatable? (Mostly curable?)" + (show)
@axeddie

Is Small Fiber Neuropathy curable/treatable? (Mostly curable?)

Jump to this post

There are trials taking place to determine if Pirenzepine can "cure" certain neuropathies. Hope.

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jansendscards | @jansendscards | Jan 17, 2022

Lori Renee
It is hard living with neuropathy. It is hard to put life on hold. It is so hard to family not today because I hurt too much. I am with you. It is a hard way to live life.

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kenc | @kenc | Jan 17, 2022

You have not mentioned seeking advice from any pain mgt or other specialists. Then again, the only help I have rec'd so far is from my GP, who also suffers from chronic backpain resulting from a trampoline injury. The pain management specialist I am now seeing has sent me to a neurosurgeon who is discussing spinal stimulator.

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cyp238ress | @cyp238ress | Jan 17, 2022

I so empathize with the sadness and frustration that each of you feel.

28 years ago I was diagnosed with peripheral neuropathy. I was only 24, and until that day focused on starting my career and spending time with my girlfriend. The doctor left a message on the machine that they found an abnormality in my spinal fluid and to call him in the morning. Needless to say, I didn't sleep that night. What ensued was seeing various doctors, some of whom thought it was psychosomatic. It took a long time just to accept that this was really happening to me. That it wasn't a cruel joke. Doctors said "you have to learn to live with it". I thought to myself, if you could only tell me what "it" is and is caused by, I would be happy to start that process. Punch biopsy has confirmed that it's small fiber, but to this day my disease is idiopathic in terms of its cause.

Imagine for a minute being told that you have a disease but they cannot figure out why, that it's painful and there is little that can be done for you (and precious few - if any - meaningful advances in treatment over these 28 years). Oh, and now we're going to take away the drugs that people need to manage their pain effectively. All because people that aren't in physical pain want to abuse them recreationally.

That sounds like a nightmare. And it is. There is no sugar coating it. It totally sucks. Sometimes I think that when I die, there will be a small part of me that derives satisfaction knowing that these damaged nerves are dying with me. F them.

Apologies for being long winded, but perhaps you see something from your journey that is similar to mine and you will feel for one minute that you are not in this alone.

Jay

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