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

I feel for you, as I have similar symptoms and been dealing with them for 7 years now.
It’s as if every part of my body is involved some way or the other.
It started in my feet and now it’s in my right hand, my lips are also numb, and I too have no sensation in my pelvic area.
To be awakened in bed with nerve pain and tingling in my feet is sometimes too much to deal with.
The other mornings no it felt as if someone was ripping my calf apart.
I usually take Ibuprofen round the clock along with Gabapentin, and I’ve just been diagnosed with CIDP, and had my first round of IVIG infusions.
I was fine after day 4 of the infusions but on day 5 and 6 all hell broke loose.
I was so dizzy, couldn’t even walk straight. Felt awful, both my hands had tingling in fingers,couldn’t hold anything.
Today I’m better, but honestly it just gets overwhelming, don’t know how much more I can take.
Would like to have just 1 day free from all this garbage!

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I’m with you, been suffering now for 7 years.
My quality of life stinks, can’t do much, broke my right foot 3 times in a year,had multiple surgeries too.
If only was my foot to deal with,I might deal better, but this neuropathy is overtaking my whole body.
There are days where I too, feel hopeless, and just have enough.

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@harley22

I feel for you, as I have similar symptoms and been dealing with them for 7 years now.
It’s as if every part of my body is involved some way or the other.
It started in my feet and now it’s in my right hand, my lips are also numb, and I too have no sensation in my pelvic area.
To be awakened in bed with nerve pain and tingling in my feet is sometimes too much to deal with.
The other mornings no it felt as if someone was ripping my calf apart.
I usually take Ibuprofen round the clock along with Gabapentin, and I’ve just been diagnosed with CIDP, and had my first round of IVIG infusions.
I was fine after day 4 of the infusions but on day 5 and 6 all hell broke loose.
I was so dizzy, couldn’t even walk straight. Felt awful, both my hands had tingling in fingers,couldn’t hold anything.
Today I’m better, but honestly it just gets overwhelming, don’t know how much more I can take.
Would like to have just 1 day free from all this garbage!

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@harley22 God bless the empathy you have shown me. That helps so much. The people around me don't see that I look different, and don't check on me much. I also don't want to be burdensome. It is not easy. What is CIDP? I do not know what it stands for, but it must be intense for you to take infusions for it. Has the reason for your neuropathy ever been found? Your pain is agonizing, and I know how that is. I stopped the Gabapentin, because it did nothing helpful for me. Do take care as best you can. I have told people about Kratom. I take it, and it does relieve pain. If you want to know more, let me know. God Bless. Lori Renee

Liked by rwinney

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@harley22

I’m with you, been suffering now for 7 years.
My quality of life stinks, can’t do much, broke my right foot 3 times in a year,had multiple surgeries too.
If only was my foot to deal with,I might deal better, but this neuropathy is overtaking my whole body.
There are days where I too, feel hopeless, and just have enough.

Jump to this post

Funny you mention your foot…
Before I was diagnosed with SFN and didn't know what on earth was wrong with me, I used to wonder why I couldn't have a break or something that was clearly able to be seen and fixed. Well, now I have a diagnosis and still feel that way.

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@artscaping

@lorirenee1, In the Mayo Connect forum there is no visual or audio input. We just have words to express our sadness, our dismay, or the difference between wondering and wandering in our mind. If it were not so true, you would have certainly qualified for an academy award with that post. I hope you are feeling much better. Let's make tomorrow an up day. Do you watch the barometric pressure? Does it affect your resilence?

Before I forget, I would like to ask if your CBD comments were actual or just adding emphasis to the lament. It seems like there are a number of members researching, exploring and experimenting with CBD. Actually, CBD, as in medical cannabis, has no psychotropic capabilities. You cannot get high on pure cannabidiol (CBD). From your description, you may have encountered something other than CBD. As @jimhd wrote, be careful and do your homework. Tomorrow, may you be free of suffering and enjoy mother nature's gift of Fall color. Chris

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

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Neurological tests have confirmed that I have SFPN, primarily in my feet, though the tingling goes up above my knees. I have several other issues that could have neuropathic involvement. Esophageal dysmotility, diplopia, silent reflux, bladder and bowel and intestinal challenges, reduced sensation in my fingertips and face, disorganized motion at the back of my tongue, tinnitus, sudden loss of muscle in my left knee, delayed response from my ears to my brain stem, and the list goes on. No wonder I have clinical depression 😫

Much of life is uncertain, regardless if we're in perfect health or in a desperate condition. There are those who preach that each person has within themselves all that they need to live life successfully. Really? Some of us could probably stand to have a little more self sufficiency, but I've learned that I can't live life successfully on my own. I need community. "No man is an island" comes to mind.

And for that reason, I'm glad to be part of the Connect community. And other communities, as well. Thanks to each of you who are encouragers, thanks to you who share your personal wisdom, and thanks to you who voice your struggles. Synergy is a good word.

Jim

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@jimhd

Neurological tests have confirmed that I have SFPN, primarily in my feet, though the tingling goes up above my knees. I have several other issues that could have neuropathic involvement. Esophageal dysmotility, diplopia, silent reflux, bladder and bowel and intestinal challenges, reduced sensation in my fingertips and face, disorganized motion at the back of my tongue, tinnitus, sudden loss of muscle in my left knee, delayed response from my ears to my brain stem, and the list goes on. No wonder I have clinical depression 😫

Much of life is uncertain, regardless if we're in perfect health or in a desperate condition. There are those who preach that each person has within themselves all that they need to live life successfully. Really? Some of us could probably stand to have a little more self sufficiency, but I've learned that I can't live life successfully on my own. I need community. "No man is an island" comes to mind.

And for that reason, I'm glad to be part of the Connect community. And other communities, as well. Thanks to each of you who are encouragers, thanks to you who share your personal wisdom, and thanks to you who voice your struggles. Synergy is a good word.

Jim

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Ahhh, Jim…you bring a tear to my eye. Thank you for being you.
Rachel

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@lorirenee1

@harley22 God bless the empathy you have shown me. That helps so much. The people around me don't see that I look different, and don't check on me much. I also don't want to be burdensome. It is not easy. What is CIDP? I do not know what it stands for, but it must be intense for you to take infusions for it. Has the reason for your neuropathy ever been found? Your pain is agonizing, and I know how that is. I stopped the Gabapentin, because it did nothing helpful for me. Do take care as best you can. I have told people about Kratom. I take it, and it does relieve pain. If you want to know more, let me know. God Bless. Lori Renee

Jump to this post

Good morning Lori,
Just read your response and you’re absolutely right, no one wants to be a burden, but on the other hand, no one really knows what you’re going thru, certainly my family and friends.
I’ve been told I don’t look that sick, that’s why no one really gets how hard it is for me.
My poor husband has been my primary caregiver past few years, and I really feel sorry for him.
All he does is drive me to doctor appointments, and he even has to help me shower, even though I’ve started doing this myself,but let me tell u, something that simple is a real chore for me.
CIDP is also known as Chronic Inflammatory demyelinating polyneuropathy.
After 6 neurologists, I finally have a diagnosis. They think it’s an autoimmune thing, destroying the protective nerve coverings surrounding my nerves.
The numbness and nerve pain can be awful at times, so I take Ibuprofen round the clock, along with Gabapentin 3 times a day.
I thought the Gabapentin wasn’t helping much, but one thing it is doing is spacing out the electrical jolting pain I get in my feet and ankles sporadically.
Sometimes I feel like someone is stabbing me or pulling my toes with a pliers.
This morning I woke up with pain and numbness in both legs and feet, which is a horrible way to start the day.
What is Kratom, I know you said it helps you with your pain.
You take care, and I look forward to communicating with you again soon! Marilyn M

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@rwinney

Funny you mention your foot…
Before I was diagnosed with SFN and didn't know what on earth was wrong with me, I used to wonder why I couldn't have a break or something that was clearly able to be seen and fixed. Well, now I have a diagnosis and still feel that way.

Jump to this post

What is SFN?
I feel the same often,just wish I could have one good day every now and then.

Liked by rwinney

REPLY
@jimhd

Neurological tests have confirmed that I have SFPN, primarily in my feet, though the tingling goes up above my knees. I have several other issues that could have neuropathic involvement. Esophageal dysmotility, diplopia, silent reflux, bladder and bowel and intestinal challenges, reduced sensation in my fingertips and face, disorganized motion at the back of my tongue, tinnitus, sudden loss of muscle in my left knee, delayed response from my ears to my brain stem, and the list goes on. No wonder I have clinical depression 😫

Much of life is uncertain, regardless if we're in perfect health or in a desperate condition. There are those who preach that each person has within themselves all that they need to live life successfully. Really? Some of us could probably stand to have a little more self sufficiency, but I've learned that I can't live life successfully on my own. I need community. "No man is an island" comes to mind.

And for that reason, I'm glad to be part of the Connect community. And other communities, as well. Thanks to each of you who are encouragers, thanks to you who share your personal wisdom, and thanks to you who voice your struggles. Synergy is a good word.

Jim

Jump to this post

Hi Jim,
I also have similar symptoms as you, even though I’ve been diagnosed with CIDP.
I’m with you, we need to be able to connect with others who are going thru similar issues, and it certainly helps to be able to vent, as they say,without seeming like a whiner!
God Bless, Marilyn M

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@harley22

What is SFN?
I feel the same often,just wish I could have one good day every now and then.

Jump to this post

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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@harley22

Good morning Lori,
Just read your response and you’re absolutely right, no one wants to be a burden, but on the other hand, no one really knows what you’re going thru, certainly my family and friends.
I’ve been told I don’t look that sick, that’s why no one really gets how hard it is for me.
My poor husband has been my primary caregiver past few years, and I really feel sorry for him.
All he does is drive me to doctor appointments, and he even has to help me shower, even though I’ve started doing this myself,but let me tell u, something that simple is a real chore for me.
CIDP is also known as Chronic Inflammatory demyelinating polyneuropathy.
After 6 neurologists, I finally have a diagnosis. They think it’s an autoimmune thing, destroying the protective nerve coverings surrounding my nerves.
The numbness and nerve pain can be awful at times, so I take Ibuprofen round the clock, along with Gabapentin 3 times a day.
I thought the Gabapentin wasn’t helping much, but one thing it is doing is spacing out the electrical jolting pain I get in my feet and ankles sporadically.
Sometimes I feel like someone is stabbing me or pulling my toes with a pliers.
This morning I woke up with pain and numbness in both legs and feet, which is a horrible way to start the day.
What is Kratom, I know you said it helps you with your pain.
You take care, and I look forward to communicating with you again soon! Marilyn M

Jump to this post

@harley22 Hi Marilyn, The description of what you go through is so hard on the soul. I ache for you and I. Toes being pulled by pliers, really got me, because my toes are regularly pulled by pliers. What a perfect description. I want you to know about Kratom. Kratom is a product that comes from SE Asian tree leaves. It is ground into a powder, and added to water. You take about two or three teaspoons, to about 3 ounces of water, and chug it down Take pain away. Please. If you want to know more about it, let me know. It is relaxing without a high, and takes away pain very well. I think there is nothing that works better for that. I have to go for now, but please, get back to me. Meeting a friend for lunch. Lori Renee

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@harley22

What is SFN?
I feel the same often,just wish I could have one good day every now and then.

Jump to this post

I'm sorry, it's Small Fiber Neuropathy.

REPLY
@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.

Jump to this post

Thanks for helping John.

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@harley22

Good morning Lori,
Just read your response and you’re absolutely right, no one wants to be a burden, but on the other hand, no one really knows what you’re going thru, certainly my family and friends.
I’ve been told I don’t look that sick, that’s why no one really gets how hard it is for me.
My poor husband has been my primary caregiver past few years, and I really feel sorry for him.
All he does is drive me to doctor appointments, and he even has to help me shower, even though I’ve started doing this myself,but let me tell u, something that simple is a real chore for me.
CIDP is also known as Chronic Inflammatory demyelinating polyneuropathy.
After 6 neurologists, I finally have a diagnosis. They think it’s an autoimmune thing, destroying the protective nerve coverings surrounding my nerves.
The numbness and nerve pain can be awful at times, so I take Ibuprofen round the clock, along with Gabapentin 3 times a day.
I thought the Gabapentin wasn’t helping much, but one thing it is doing is spacing out the electrical jolting pain I get in my feet and ankles sporadically.
Sometimes I feel like someone is stabbing me or pulling my toes with a pliers.
This morning I woke up with pain and numbness in both legs and feet, which is a horrible way to start the day.
What is Kratom, I know you said it helps you with your pain.
You take care, and I look forward to communicating with you again soon! Marilyn M

Jump to this post

@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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