1. < Neuropathy

Psychological effects of living with neuropathy

Posted by domiha @domiha, Oct 17, 2023

This is more of a whine than a question. I get so tired, not just physically but psychologically, of living with the neuropathy and the limitations. All of us here are dealing with different combinations of symptoms and to differing degrees. Some know what caused the neuropathy, while others have no idea of the origin. But in the end, we are all in the same boat. My neuropathy appeared after a lumbar laminectomy a year ago. I had such pain in my legs for the year before my surgery that the neuropathy could have been there then and I wouldn't have been able to distinguish the difference. I was SO hoping the laminectomy would fix me... and it DID take away the leg pain that was limiting my walking. I can walk again.... though I'm a bit wobbly... and I do need to take breaks every so often. But I sometimes think the psychological toll is worse than the physical. I'm 72 and have always lived with anxiety and depression issues. How I would love to just find ACCEPTANCE of the fact that this is MY LIFE at this point.... and do what I can and the neuropathy be damned. And I do try to go and do as much as possible. But wherever I go, I take my feet with me.... and thus all the symptoms that remind me that I will never be "normal" again. As they say, "misery loves company," and I wonder how some of you deal with they psychological. Anyone else feeling like this? I see a therapist, but he can't fix my feet. I go to PT, but that seems to have reached it's peak for improvement. I know there are so many people with much worse infirmities out there.... but somehow knowing that doesn't make my situation any better. Thanks for allowing me to vent. Best to all!

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minfromtexas | @minfromtexas | Oct 31, 2023
In reply to @julbpat "I've been thinking about your frustrating situation. I have some of the same issues, and maybe..." + (show)
@julbpat

I've been thinking about your frustrating situation. I have some of the same issues, and maybe my solutions will help. I don't love telling the world about my bowel issues (sigh) but oh well, we're all helping each other, right?

So I am a retired nurse, and I tend to think of myself as my own patient. Even though your bowels are unpredictable and have nerve damage, there are some certain facts. One being, if the bowel is full, especially the end part, near the rectum, it's going to empty at some point! Not on a predictable schedule, but if that part is empty, you stand less of a chance of accidents.

lf it's been a few days since your last bowel movement, you stand a much higher chance of a sudden bowel movement. In a restaurant. During a church service (me). While walking on the streets of NY with your son (me). Of course, in that case, you go directly to a bathroom with no embarrassment, even if your son doesn't believe Walgreens will let you use their bathroom!

This is much less likely to happen if that part of the bowel is empty. So I take Colon-Max, which I read about here and buy on Amazon, every single night. If I know my bowels are too full, I also take Ex-lax or similar. Every morning I take prescription Motegrity. All this pretty much guarantees lots of time in the bathroom every morning. Sometimes 10 trips over 2 hours. But then I know it's "safer" to go out and be away from bathrooms.

This is just my way of handling bathroom emergencies. I sacrifice my mornings in order to enjoy my errands and activities later. Mornings are also when I usually struggle with vertigo, so I just get it all over with at one time!

On the flip side, if I have to go to a morning activity, I do the opposite - no Colon-Max, skip my Motegrity. Then the process starts again because my bowel gets too full, the pressure builds up, I have unpredictable bathroom trips in public places.

Oh, the fun of neuropathy! Hope this helps though.

Jump to this post

I have progressive sensory motor axonal neuropathy (say that five times fast!) and for now, at least, my symptoms neuropathy are in my legs and feet. Is it possible that my neuropathic symptoms will migrate to my bowels? I had terrible constipation with no relief from OTC nor prescribed drugs..then I started eating bran cereal and, voila!! Constipation ended. I'm so sorry to hear how much time you have to 'budget' each day for bathrooming (is that a word?). Thanks for posting. min

REPLY
julbpat | @julbpat | Oct 31, 2023

I have length-dependent small fiber polyneuropathy, which is damaged small fiber nerves. That’s different than what you have. Pain, and dysfunction of small nerve fibers, which impacts lots of autonomic functions, like digestion. Sounds like yours is more motor function. Hopefully it stays that way! I don’t know the answer to that.

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crossette | @crossette | Nov 6, 2023

I sometimes have the same irregular colon schedule. Sometimes it is reliable for months, then changes. Recently I have started drinking a half a cup of Kefir every day. This is a healthy, yogurt-like probitotic that has become very popular. The brand I get is Lifeway and it is available in most supermarkets in the yogurt section. It is available in plain (tangy with no added sugar) or different flavors with some added sugar. Unlike yogurt, this is a thick liquid, almost like a milkshake in consistency. Sometimes I add a little Hershey dark chocolate syrup to the plain. This brand contains 12 different probiotic strains which is way more than typically found in yogurt. It seems to have stablized my gut nicely. Worth a try for anyone with bowel troubles.
All about Kefir: https://en.wikipedia.org/wiki/Kefir

REPLY
2 replies
julbpat | @julbpat | Nov 7, 2023
In reply to @crossette "I sometimes have the same irregular colon schedule. Sometimes it is reliable for months, then changes...." + (show)
@crossette

I sometimes have the same irregular colon schedule. Sometimes it is reliable for months, then changes. Recently I have started drinking a half a cup of Kefir every day. This is a healthy, yogurt-like probitotic that has become very popular. The brand I get is Lifeway and it is available in most supermarkets in the yogurt section. It is available in plain (tangy with no added sugar) or different flavors with some added sugar. Unlike yogurt, this is a thick liquid, almost like a milkshake in consistency. Sometimes I add a little Hershey dark chocolate syrup to the plain. This brand contains 12 different probiotic strains which is way more than typically found in yogurt. It seems to have stablized my gut nicely. Worth a try for anyone with bowel troubles.
All about Kefir: https://en.wikipedia.org/wiki/Kefir

Jump to this post

Thanks for the reminder about Kefir. Incidentally I was just reading about probiotics this week, and kefir was mentioned. So that’s two “ nudges” to put it on my grocery list!
I have spent hundreds, if not a thousand dollars on probiotics. I keep them in the fridge, so of course tend to overlook them. I was reading this week about how probiotics make it through the acidic environment of the stomach into the intestines. And how taking acid-blocking medicines changes that environment, so theoretically more of makes it through to the intestines. It was confusing to read, but thankfully kefir was mentioned as a reliable way to get the probiotics where they need to go!
I like kefir, so I’m starting a new routine this very day. I am getting lots of nudges that it’s time to get my nutrition in order. I weigh the most I have in 30 years, as my ability to exercise slowly disappears, due to the progression of my neuropathy. Time to put on my big girl panties and turn this around. Starting with kefir!

REPLY
penn | @penn | Nov 7, 2023
In reply to @crossette "I sometimes have the same irregular colon schedule. Sometimes it is reliable for months, then changes...." + (show)
@crossette

I sometimes have the same irregular colon schedule. Sometimes it is reliable for months, then changes. Recently I have started drinking a half a cup of Kefir every day. This is a healthy, yogurt-like probitotic that has become very popular. The brand I get is Lifeway and it is available in most supermarkets in the yogurt section. It is available in plain (tangy with no added sugar) or different flavors with some added sugar. Unlike yogurt, this is a thick liquid, almost like a milkshake in consistency. Sometimes I add a little Hershey dark chocolate syrup to the plain. This brand contains 12 different probiotic strains which is way more than typically found in yogurt. It seems to have stablized my gut nicely. Worth a try for anyone with bowel troubles.
All about Kefir: https://en.wikipedia.org/wiki/Kefir

Jump to this post

crossette,
Thank You, will look for it today. Pain Management Doctor gave me for Opiate Constipation
Movantik, and stool softeners.

REPLY
2 replies
2dogman | @2dogman | Nov 7, 2023

THIS IS MY FIRST POST.
I have been living with SEVERE neuropathy for about six years. My family Doc gave every prescription in the book with no luck. He finally recommend pain man doc. She did nerve conduction test and gave me opioid pain meds. Many docs are reluctant to give opoids, but they have returned my life to me. If you have severe pain do not be timid to get real releaf. It is your life!

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 8, 2023
In reply to @2dogman "THIS IS MY FIRST POST. I have been living with SEVERE neuropathy for about six years...." + (show)
@2dogman

THIS IS MY FIRST POST.
I have been living with SEVERE neuropathy for about six years. My family Doc gave every prescription in the book with no luck. He finally recommend pain man doc. She did nerve conduction test and gave me opioid pain meds. Many docs are reluctant to give opoids, but they have returned my life to me. If you have severe pain do not be timid to get real releaf. It is your life!

Jump to this post

Welcome @2dogman, Thanks for sharing. Being your own advocate when it come to your health is something we all need to do a little better since it is our life. I'm not sure if you have heard about the Patient Revolution organization but they have some great tools and suggestions on working with your doctors - https://www.patientrevolution.org/tools.

Were your doctors able to identify a cause or provide a specific diagnosis for your neuropathy?

REPLY
2 replies
julbpat | @julbpat | Nov 8, 2023
In reply to @penn "crossette, Thank You, will look for it today. Pain Management Doctor gave me for Opiate Constipation..." + (show)
@penn

crossette,
Thank You, will look for it today. Pain Management Doctor gave me for Opiate Constipation
Movantik, and stool softeners.

Jump to this post

Also look on Amazon for ColonMax, a herbal supplement for constipation. I learned about it here.

REPLY
1 reply
2dogman | @2dogman | Nov 8, 2023
In reply to @johnbishop "Welcome @2dogman, Thanks for sharing. Being your own advocate when it come to your health is..." + (show)
@johnbishop

Welcome @2dogman, Thanks for sharing. Being your own advocate when it come to your health is something we all need to do a little better since it is our life. I'm not sure if you have heard about the Patient Revolution organization but they have some great tools and suggestions on working with your doctors - https://www.patientrevolution.org/tools.

Were your doctors able to identify a cause or provide a specific diagnosis for your neuropathy?

Jump to this post

No, my neuropathy was idiopathic.
I do believe it had started shortly after a gum infection and the strong antibiotics I received. That is just a theory, but I do not have any other explanation.

REPLY
SusanEllen66 | @SusanEllen66 | Nov 8, 2023
In reply to @2dogman "THIS IS MY FIRST POST. I have been living with SEVERE neuropathy for about six years...." + (show)
@2dogman

THIS IS MY FIRST POST.
I have been living with SEVERE neuropathy for about six years. My family Doc gave every prescription in the book with no luck. He finally recommend pain man doc. She did nerve conduction test and gave me opioid pain meds. Many docs are reluctant to give opoids, but they have returned my life to me. If you have severe pain do not be timid to get real releaf. It is your life!

Jump to this post

@2dogman welcome! I also have severe polyneuropathy. My neurologist gave me Gabapentin, but I could not stand the fatigue, and dizziness so I don’t take it.
I do not tolerate most pain relievers other than Tylenol. Even that makes me sleepy! So, I grin and bear my discomfort.
I’m glad you are having success with your meditation. That’s important for you ability to get a good nights sleep!

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