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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Debbie | @dbeshears1 | Nov 14, 2023
In reply to @julbpat "I guess it’s just my nature, but I just cannot allow myself to sink into depression...." + (show)
@julbpat

I guess it’s just my nature, but I just cannot allow myself to sink into depression. It tries to sneak in, but I just can not go there. I am on two antipressents - Lexapro for years, and now Effexor to help with neuropathy. Along with my seizure medicine, Tegretol (for neuropathy pain) I am able to maintain a pretty level, if boring, frame of mind. The list of things I’ve given up is long, and getting longer. I live alone. I’ve learned to “ save up” some tasks that I need help with, and ask for help from a friend. I am a gardener, and have always kept my yard tidy. This weekend I managed to mulch and bag TWO bags of leaves. It took me hours, and I had to do the following: take Percocet and Aleve, stop numerous times, go inside and sit for a while,etc. My lower back felt like someone was stabbing me, and my upper back and shoulders were screaming. Two lousy bags of leaves. I felt frustrated and sad about all the rest that needed bagging, but I just shoved those feelings aside.
This is how I get through it. Wallowing isn’t allowed.

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Love the inspiration!!

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penn | @penn | Nov 14, 2023
In reply to @domiha "Yes, @penn, from what I understand, chemotherapy can sometimes cause neuropathy." + (show)
@domiha

Yes, @penn, from what I understand, chemotherapy can sometimes cause neuropathy.

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THANK YOU SO MUCH, KEEP FORGETTING TO BRING THIS UP WITH MY NEUROLOGST

CAN SOMEONE WITH PRETTY BAD SMALL FIBER NEUROPATHY AND HIP SURGERY SUFFER FROM SEVER NERVE DAMAGE GROIN, HIP, THEIGH, BACK OF HIP RT. SIDE,
THAT BURNING YOU GET FROM SFN, WALK WITH A LIMP, SITTING, CAR, DOMINO EFFECT TO KNEE ETC. CAN'T TAKE IT ANYMORE!!

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penn | @penn | Nov 14, 2023
In reply to @domiha "Hi, @penn. So sorry to hear of all you have suffered through. I had the same..." + (show)
@domiha

Hi, @penn. So sorry to hear of all you have suffered through. I had the same laminectomy, L2 to S1, no fusion, just like you. Thankfully, the surgery helped the pain in legs that was preventing me from walking. The surgeon has said that IF he were to go back in and fuse L4, L5, S1 that "MIGHT" relieve the neuropathy in my feet. But there is no guarantee and I'm not ready to jump back up on the OR table. I do see a therapist regularly, and I take meds for depression and anxiety that have been with me all my life. Bette Davis was right when she said "getting old is not for sissies." Take good care, and I hope the port will be successful and a help to you. Mike

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HELLO, I WISH I LISTENED TO MYSELF AND NOT! HAD HE FUSION!!!
NOW WITH SEVER HIP PAIN, SURGERY WAS IN APRIL 23 I'M 1OO % WORSE . WAITING FRO HIP SURGERN TO RETURN MY CALL AND TELL HIM YOU HAD TO HAV KNOWN ABOUT AOW BAD MY SFN IS AND YOU DID NOT INFORM OF THE SIDE EFFECT OF THE CHRONIC NERVE PAIN. YOU RUINED MY LIFE!!!!

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penn | @penn | Nov 16, 2023
In reply to @domiha "Hi, @penn. So sorry to hear of all you have suffered through. I had the same..." + (show)
@domiha

Hi, @penn. So sorry to hear of all you have suffered through. I had the same laminectomy, L2 to S1, no fusion, just like you. Thankfully, the surgery helped the pain in legs that was preventing me from walking. The surgeon has said that IF he were to go back in and fuse L4, L5, S1 that "MIGHT" relieve the neuropathy in my feet. But there is no guarantee and I'm not ready to jump back up on the OR table. I do see a therapist regularly, and I take meds for depression and anxiety that have been with me all my life. Bette Davis was right when she said "getting old is not for sissies." Take good care, and I hope the port will be successful and a help to you. Mike

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HI DOMIHA, NO MORE SURGERIES OR NERVE BLOCK EVERT TIME I GET WORSE!???
WHAT DO YOU TAKE FOR NERVE PAIN?
I HAVE A PAIN PUMP FOR SPINE PAIN, PAIN MANAGEMENT PUT IT IN. HELPS THE SPINE NOT NERVE PAIN.

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domiha | @domiha | Nov 16, 2023

Hi, Penn.... I tried Gabapentin, but it made me loopy. Then I tried Lyrica, which really didn't help with the pain, but I gained 25 pounds. So now the doctor has me on Amitryptiline. In the beginning, I tried the spinal injections of steroids through a pain management doctor, but those didn't help for very long. I've read about the spinal cord stimulator that can be implanted to help with the pain.

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rllh5403 | @rllh5403 | Nov 17, 2023

WOW! I know exactly what you mean. I have SFN & PMR, plus I am dealing with a fatty liver. I have dealt with depression & anxiety most of my adult life. I am 69 yo, retired; not able to work after 2012. I retired in 2008 with 28 years of service. So I am proud of what I have accomplished, but SFN changes your whole life. I stay tired and must nap during the day. I drive very little, I've hired a housekeeper, my husband cooks. I do very little other than laundry. I am able to maintain a checking account and take care of that. But now I'm just a home body. I don't get out of the house very much. My day consists of sleep, eat breakfast, play video games, take a nap, watch TV, play more video games and go to bed. I used to never miss church; I'm not attending church now. I have no desire to do anything. I feel like a nobody, but yet like you, I know there are lots more people in worse shape than me. However, I don't know what caused my SFN; I had to go to Cleveland Clinic to even get it diagnosed. Can't find a good Neurologist. Been to psychiatrist-that didn't help. Also, been to a therapist-that didn't help either. So I know how you feel and you are not alone.

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treeh2o | @treeh2o | Nov 25, 2023
In reply to @danamw73 "I was just crying a little this afternoon. I’m one of those who has no idea..." + (show)
@danamw73

I was just crying a little this afternoon. I’m one of those who has no idea why or how I got it (after many Dr and specialists appointments). Been dealing with it for around 4-5 yrs now. I get so depressed because I turned 50 this year and feel that I am still so young with hopefully, a lot of life left to live, especially for my 12yr old son. I try so hard to focus on other things. Mom always told me that your mind can only focus on one thing at a time. But, it’s just so hard at times. So, like others have said, feel free to whine. I’m new to the group and bet it’s completely understood and relatable to all.

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Hello - I would like to connect with you. I feel I’m in the same boat as you in a way with 2 kids and a full life to live. I do not know how to move forward with this. Is there a way to message you directly?

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rca | @rca | Nov 26, 2023

I explain to taxi drivers what is happening, so they will help me properly and place the folding shopping cart in their vehicle. Friends have complained about helping me with the walker and it is strange for me as I helped my parents with their aides many times when we went out.
Some taxis will not come because it takes time for them to do all of this.
R

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2 replies
lc22002yahoocom | @lc22002yahoocom | Nov 27, 2023
In reply to @rca "I explain to taxi drivers what is happening, so they will help me properly and place..." + (show)
@rca

I explain to taxi drivers what is happening, so they will help me properly and place the folding shopping cart in their vehicle. Friends have complained about helping me with the walker and it is strange for me as I helped my parents with their aides many times when we went out.
Some taxis will not come because it takes time for them to do all of this.
R

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If you can afford it, promise an extra bonus to a taxi driver if he/she will take the time to help you load your walker into and out of their taxi. Good luck.

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1 reply
rca | @rca | Nov 27, 2023
In reply to @lc22002yahoocom "If you can afford it, promise an extra bonus to a taxi driver if he/she will..." + (show)
@lc22002yahoocom

If you can afford it, promise an extra bonus to a taxi driver if he/she will take the time to help you load your walker into and out of their taxi. Good luck.

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I have given the taxis a good tip, but apparently that doesn't always work if they get better tips on Nantucket Island, where I am visiting my cottage.

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