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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penn | @penn | Oct 25, 2023
In reply to @efgh1020 "To Domiha and others, Staying in the day has helped me stay away from fearing the..." + (show)
@efgh1020

To Domiha and others,
Staying in the day has helped me stay away from fearing the future and mourning over lost vigor and independence. Counseling to deal with that grief and fear also helped. My physical therapy includes Aquatherapy at a nearby university pool, along with working against gravity another day at a university clinic with my PT. Because the PN was probably an autoimmune reaction to either spinal fusion surgery for stenosis, anesthesia, or infections unrelated to the surgery, I have also been prescribed immunoglobulin infusions, and they seem to have helped along with PT. My pain has lessened over time, and for that I am grateful. I have a supportive husband, good family and friends. But it is here that we can support one another in a bewildering and “orphan” disease, with few champions of knowledge and in its infancy in research. Check out the Foundation for Peripheral Neuropathy for the best information on that research, and on help for us coping with this multi-faceted disease.

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THANK YOU SO MUCH,
I HAVE BEEN GETTING IVIG, HAD TO STOP BECAUSE IT WAS STARTING TO GET MORE AND MORE PAINFULL, PLUS BLOOD WORK PAIN, VEINS ARE SHOT GETTING A PORT.
I APOLOGIZE FOR TAKING SO LONG TO REPLY. SO MANY APPT'S TO MAKE, MEDICAL INFORMATION.

REPLY
domiha | @domiha | Oct 25, 2023
In reply to @harley22 "I can feel your pain and frustration. I too have bowel issues from my neuropathy. I..." + (show)
@harley22

I can feel your pain and frustration.
I too have bowel issues from my neuropathy.
I have no feeling when I have a bowel movement, and I need to look to see if I did.
I have to strain very hard to have a movement, no matter what I take to help.
My husband tries to help me as much as he can, but honestly no one really gets what I’m going through.
My quality of life stinks, and there’s so much I can’t do,that it’s very depressing.

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@harley22 Hello! I am SO sorry to hear of your bowel issues. It sounds as if you may be experiencing something called "cauda equina." Has your doctor given you an opinon on this? As I understand, surgery is often needed to correct the problem affecting the nerves that control bladder or bowels. I understand that you have already had several surgeries. Was the bowel issue there before the surgeries? I know this must be totally depressing. I hope that you might find a doctor who can identify and help you with this problem!

REPLY
2 replies
harley22 | @harley22 | Oct 26, 2023
In reply to @budjo611 "Wow. Couldn’t agree with you more!!!! If I don’t get up and deal with the pain..." + (show)
@budjo611

Wow. Couldn’t agree with you more!!!! If I don’t get up and deal with the pain I wouldn’t have a day at all. Pain is 24/7 and always changing. I may be out and about, but it doesn’t mean I’m feeling well. I’m just dealing with the pain. It’s ever present!!!! I do what I can do, when I can do it. Never heard of SFN until I was diagnosed. But knowing what you have doesn’t make the pain disappear. You just know why you’re in pain. It took 3 years for a proper diagnosis. Three misdiagnoses and 3 useless surgeries only made matters worse. The medical community seems clueless on how treat this disease. I’m considered idiopathic, so there are no targets for treatment. It’s all about pills!!! And nothing seems to work very well. So I deal with the pain and try to keep a smile on my face.
But it’s not easy. And it will probably just get worse in time. I haven’t given up just yet. Seeing a new neurologist in January. Appointment made in February!! Eleven months to just get a consult. But I’m told she’s the best. Time will tell.

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I feel your pain!
I too suffer from constant pain, but I try and go about my life as much as I can.
No one knows what it’s like except another person who’s got the same issues as you do.
Hoping in time I’ll find a treatment or drug that will help me,because so far, nothing I’ve had has worked for me, and it’s been a lot over the past 10 yrs.

REPLY
harley22 | @harley22 | Oct 26, 2023
In reply to @domiha "@harley22 Hello! I am SO sorry to hear of your bowel issues. It sounds as if..." + (show)
@domiha

@harley22 Hello! I am SO sorry to hear of your bowel issues. It sounds as if you may be experiencing something called "cauda equina." Has your doctor given you an opinon on this? As I understand, surgery is often needed to correct the problem affecting the nerves that control bladder or bowels. I understand that you have already had several surgeries. Was the bowel issue there before the surgeries? I know this must be totally depressing. I hope that you might find a doctor who can identify and help you with this problem!

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No none of my docs ever mentioned cauda equina.
I guess the fact that I don’t have sciatic pain, is why.

REPLY
harley22 | @harley22 | Oct 26, 2023
In reply to @domiha "@harley22 Hello! I am SO sorry to hear of your bowel issues. It sounds as if..." + (show)
@domiha

@harley22 Hello! I am SO sorry to hear of your bowel issues. It sounds as if you may be experiencing something called "cauda equina." Has your doctor given you an opinon on this? As I understand, surgery is often needed to correct the problem affecting the nerves that control bladder or bowels. I understand that you have already had several surgeries. Was the bowel issue there before the surgeries? I know this must be totally depressing. I hope that you might find a doctor who can identify and help you with this problem!

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No none of my docs ever brought it up.
Maybe it’s bea cause I do t have sciatic pain?

REPLY
louise67 | @louise67 | Oct 28, 2023
In reply to @harley22 "I can feel your pain and frustration. I too have bowel issues from my neuropathy. I..." + (show)
@harley22

I can feel your pain and frustration.
I too have bowel issues from my neuropathy.
I have no feeling when I have a bowel movement, and I need to look to see if I did.
I have to strain very hard to have a movement, no matter what I take to help.
My husband tries to help me as much as he can, but honestly no one really gets what I’m going through.
My quality of life stinks, and there’s so much I can’t do,that it’s very depressing.

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so sorry to know you are having trouble with this. Will it help to find someone in the same boat because I am? SFN affects both my gut and my bladder. I have nausea and cramping that was first diagnosed as IBS. I am either constipated or going without control. I had to trash a whole set of sheets from that. My GI dr has another patient with SFN so he understands. My bladder problems have gotten much worse recently so I now wear pads all the time, even in bed. The other day I was late for a fire alarm bccause I couldn't stop. You're right - it stinks. The problem is so public and I'm always worrying if I will be embarassed or ruin clothes. I don't have much advice but I wanted you to know someone else has been there. Lots of hugs.

REPLY
1 reply
harley22 | @harley22 | Oct 29, 2023
In reply to @louise67 "so sorry to know you are having trouble with this. Will it help to find someone..." + (show)
@louise67

so sorry to know you are having trouble with this. Will it help to find someone in the same boat because I am? SFN affects both my gut and my bladder. I have nausea and cramping that was first diagnosed as IBS. I am either constipated or going without control. I had to trash a whole set of sheets from that. My GI dr has another patient with SFN so he understands. My bladder problems have gotten much worse recently so I now wear pads all the time, even in bed. The other day I was late for a fire alarm bccause I couldn't stop. You're right - it stinks. The problem is so public and I'm always worrying if I will be embarassed or ruin clothes. I don't have much advice but I wanted you to know someone else has been there. Lots of hugs.

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I too wear a pad constantly and have for several years now.
I never know when I’ll leak, so I just constantly wear them.
I wear overnite with Always panties to bed because I don’t feel the urge to go when I’m asleep.
Really stinks!
Am worried that I’ll wet the bed when I’m in another bed at my kids homes or in a hotel so I just wear them even though lately I’m dry in the morning when I get up.
Funny thing is since I’m off Gabapentin and other meds, it’s seemed to keep me dryer than before.
I used to soak up a heavy pad and a depends at nite.
Now thank goodness it’s much better.
I am having stomach issues occasionally now after I eat dinner.
I will get severe cramps and violent diarrhea within 1/2 hr of eating.
Doesn’t matter what I eat, it can be a tuna sandwich one time, and then I’ll have it to eat another time and it won’t bother me.
My Gastro doc thought it might be a malabsorption issue but all the stool tests and labs came back ok.
Ruled out Celiac and Crones diseases etc.
So of course I’m afraid to go out to eat without being near my bathroom.
I’m afraid if I have an episode I’ll be in trouble, especially because I don’t feel it until it’s on its way out.
I’ll have a bad cramp and that seems to be it.
Wouldn’t want to be out in public somewhere and that happens.
Just another thing to deal with along with the rest.
Thanks for telling me your issue, seems we have that in common.

REPLY
1 reply
maggie7816 | @maggie7816 | Oct 29, 2023
In reply to @harley22 "I too wear a pad constantly and have for several years now. I never know when..." + (show)
@harley22

I too wear a pad constantly and have for several years now.
I never know when I’ll leak, so I just constantly wear them.
I wear overnite with Always panties to bed because I don’t feel the urge to go when I’m asleep.
Really stinks!
Am worried that I’ll wet the bed when I’m in another bed at my kids homes or in a hotel so I just wear them even though lately I’m dry in the morning when I get up.
Funny thing is since I’m off Gabapentin and other meds, it’s seemed to keep me dryer than before.
I used to soak up a heavy pad and a depends at nite.
Now thank goodness it’s much better.
I am having stomach issues occasionally now after I eat dinner.
I will get severe cramps and violent diarrhea within 1/2 hr of eating.
Doesn’t matter what I eat, it can be a tuna sandwich one time, and then I’ll have it to eat another time and it won’t bother me.
My Gastro doc thought it might be a malabsorption issue but all the stool tests and labs came back ok.
Ruled out Celiac and Crones diseases etc.
So of course I’m afraid to go out to eat without being near my bathroom.
I’m afraid if I have an episode I’ll be in trouble, especially because I don’t feel it until it’s on its way out.
I’ll have a bad cramp and that seems to be it.
Wouldn’t want to be out in public somewhere and that happens.
Just another thing to deal with along with the rest.
Thanks for telling me your issue, seems we have that in common.

Jump to this post

Have you tried taking Imodium before dinner? It might stop the urgency.

REPLY
harley22 | @harley22 | Oct 29, 2023

My Gastro doc made that suggestion to me, but those episodes that I have with diarrhea aren’t daily.
Sometimes it’s a week or more and honestly I’m afraid if I take Imodium regularly, then I’ll be constipated.
As it is sometimes I only go every few days.

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julbpat | @julbpat | Oct 30, 2023

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.

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