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Increasingly Difficult to Accept Peripheral Neuropathy

Posted by fisbo @fisbo, Oct 10, 2022

I am finding it increasingly difficult to accept peripheral neuropathy it's all very well people coming up with suggestions but carrying them out is quite another. I am no longer who I was and think I am boring and miserable because I am now. Pain takes over and I have become fearful nervous prone to panic attacks which are awful because I start to shake with worrying about the future. I have other worries anyway but if this damned PN would go away it would help.

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pamelaz | @pamelaz | Oct 24, 2022
In reply to @pacodennis "I hear what you are saying. I am 70. I have had PN for aprox. 6..." + (show)
@pacodennis

I hear what you are saying. I am 70. I have had PN for aprox. 6 months. I just got a MRI for my cervical spine and brain. I have pain all day except for the night time med naps that last about 3 hrs. each. ( 5-6 hours sleep ). You say accept this. I am having difficulty "forgetting" the pain. Distract myself with things I am interested in. The only thing I can become interested in is stopping the pain. Ironic no? I am angry that my life has crashed into this PN illness. Self-pity is the worst, and I try my best to not wallow in it. But I am now aware that I am jealous of people who live their lives without pain. Sick no? I am chair ridden basically. If I exercise more that 20 minutes I get fatigued. I do not like this at all. I will calm down before bed and try to accept that tomorrow I will have to cope and manage this illness again. So what is the trick in accepting something you don't want?

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I agree. I can’t think of anything but the pain and how I can’t walk. Pins and needles all the time from my lower back to the toes of my feet. Cymbalta , Gabapentin, Lyrica doesn’t work. My GERD is horrible and I’m on Quetiapine to help me sleep does anyone know about Quetiapine? Is it bad for GERD. I’m starting to have facial motions I can’t stop.

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julbpat | @julbpat | Oct 25, 2022
In reply to @cyp238ress "I completely empathize with you. I developed neuropathy at 24 years of age in 1994. It..." + (show)
@cyp238ress

I completely empathize with you. I developed neuropathy at 24 years of age in 1994. It was a nuisance until I got the COVID vaccine which has ruined my life. I have a good job (but disability on the horizon), lovely wife, terrific boys, nice home. And small fiber neuropathy is so debilitating it outweighs everything.

Truth is, is has sapped my will to carry on. I’m just so tired of fighting. I’m exhausted. Tears are streaming down my face now. I want to live. I just don’t want to live like this.

As if that is not cruel enough, I’m virtually certain that my eldest son has SFN and I also suspect one of the younger ones does as well. How is a person expected to have the strength and courage to endure this themselves virtually their entire life, but also bear witness to their children suffering the same fate? It’s all too much.

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I too suspect that one of my sons is developing SFN. One of my sisters has it, but we did not develop symptoms until our 50’s. I’m sure that my Tegretol (for complex partial seizures) masked my symptoms for 25 years, until I stopped taking it in 2014.
I live near a Clinic for Genomic Research, and they were excited to hear my story and do genomic testing. Frustrated that they didn’t find any genetic variants YET. The lab still has my results, and they assured me that I could hope to one day get a phone call, as they discover more and variants. I feel like someone would be excited to test you and your sons (if they haven’t already). I visit UAB, and we are all pleased and amazed that resuming Tegretol has changed my life - literally. Probably because it works with the unknown variant that I have. Sure, my life is not anywhere near normal, and I am now on disability - but I’m interested in experimenting with my doctors.
Sending hope your way -

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cyp238ress | @cyp238ress | Oct 25, 2022

Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was planning to discuss Tegretrol with her. For whatever reason, it has a reputation of helping more genetic neuropathies than other types, so I'm hoping that she will write me an Rx. Just out of curiosity, why did you stop taking the Tegretol in 2014? Side effects?

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2 replies
kristin8 | @kristin8 | Oct 28, 2022
In reply to @njed "Fisbo - Mentor John is 100% correct, all of us with PN experience similar thoughts and..." + (show)
@njed

Fisbo - Mentor John is 100% correct, all of us with PN experience similar thoughts and feelings. I spent about 5 years figuring there has to a reason for this. I was in my mid 60's and healthy. Got to be a cause then comes the cure, isn't that the way it works? After going thru many tests at Mayo in MN and then other tests, all confirmed what Mayo said. It sort of hits you that this is how it is going to be. The discomforting effects of PN are serious. But, the acceptance for me was more difficult. My primary doc sat me down a year ago and said you can't spend your life looking in the rear view mirror, you need to look ahead - don't look at the past, look forward. Concentrate on what you can do, not what you can't. I took her advise a year ago and things slowly changed. As Mentor Jim says "learn acceptance" and it takes a while but I'm sure you will work through this. As you more accept this disease for what it is, your outlook will improve.
You will feel different, hard to explain. Wish you the best and remember...look forward and think of everything you can do and do it. Ed

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I too suffered with depression, anxiety, panic attacks because I lost my job due to the Peripheral Neuropathy in my feet but back then I didn’t know, that’s what it was. I managed to dig myself out of that dark hole and kept fighting to get back out in the real world. I am happy to report that I have a full time job and just bought a house last year and am engaged to an amazing man but…my PN has gotten so much worse. I’ve actually had to take yesterday and today off work because I can’t walk. I am on Lyrica, Gabapentin, T1s and vitamins. I do my stretching, wear my custom orthotics and compression socks. I don’t know what else I can do. I’m scared of losing my job because of my PN, I don’t want to end up back in that dark hole again. Any help/suggestions would be appreciated.
Just know you are not alone. Take Care,
Kristin

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1 reply
NJ Ed | @njed | Oct 28, 2022

As I mentioned before, the acceptance of this is very difficult. The medical community is unable to give many of us a reason for our PN. To me, the important thing is what to do now. It sounds like you are improving and concentrate on the positive aspects of what you are able to do. I have found it helpful to plan ahead within your abilities. We might go to Disney World in March. I will have trouble walking that place. I too wear orthotics. So, our plan is for me to rent a scooter when needed. Remain positive, do what you can, and I wish you the best.

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julkun | @julkun | Nov 1, 2022
In reply to @frattmaa "Can’t watch TV when I’m very sick. I can’t take noise or light. It over loads..." + (show)
@frattmaa

Can’t watch TV when I’m very sick. I can’t take noise or light. It over loads my nerves and make the issues worse.
I have pain all the time. Nights and mornings are always the worse. The pain is so bad at night I try to chemically knock myself out just to get a couple hours of uninterrupted sleep.

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sorry about your pain. Hope you find something, anything. I pray for you.

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1 reply
frattmaa | @frattmaa | Nov 1, 2022
In reply to @julkun "sorry about your pain. Hope you find something, anything. I pray for you." + (show)
@julkun

sorry about your pain. Hope you find something, anything. I pray for you.

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Thank you. After a night and morning of off the charts pain. I welcome death. It’s not that I don’t love life, but this is not living.

>

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julbpat | @julbpat | Nov 2, 2022
In reply to @cyp238ress "Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was..." + (show)
@cyp238ress

Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was planning to discuss Tegretrol with her. For whatever reason, it has a reputation of helping more genetic neuropathies than other types, so I'm hoping that she will write me an Rx. Just out of curiosity, why did you stop taking the Tegretol in 2014? Side effects?

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In 2014, I was 54, and had been taking Tegretol for complex partial seizures that started around age 21. At this point, I hadn’t had a seizure in many years. My neurologist had retired, and my GP was writing the Rx. I was just curious about whether I still needed it. As a nurse, I knew how to safely wean off of it. I’ve never had another seizure.
I like digging through research articles, and that’s how I put together the puzzle pieces on Tegretol. This inspires me to search again for the article that mentioned it. Again, I’m really amazed at the effect on most of my SFN pain, palpitations, sweating. Life is far from perfect - I can tell that my neuropathy is continuing to progress. But that burning pain in my toes and fingers, that had me is such despair, is gone. My skin is still overtly sensitive to minor bumps and pressure, but nothing like it was before.
Good luck!

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julbpat | @julbpat | Nov 2, 2022
In reply to @cyp238ress "Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was..." + (show)
@cyp238ress

Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was planning to discuss Tegretrol with her. For whatever reason, it has a reputation of helping more genetic neuropathies than other types, so I'm hoping that she will write me an Rx. Just out of curiosity, why did you stop taking the Tegretol in 2014? Side effects?

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Read about voltage gated sodium channels (VGSC), if you like doing research.

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2 replies
julbpat | @julbpat | Nov 2, 2022

https://journals.physiology.org/doi/full/10.1152/physrev.00052.2017#:~:text=Targeting%20Nav1.7%20Therapeutically%20to,and%20small%20molecules.
Sorry, I’m working on my IPad, so copy and paste is awkward. This is an example of a research article mentioning Tegretol (carbamapezine). I’m sure there are many more articles. I had genetic testing, and it did not find one of these known variants, but since my sister has the same symptoms, I’m sure one will be found eventually. Happy to serve as a test subject for Tegretol in the meantime! It’s really a fascinating case study.

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