1. < Neuropathy

Dose anyone else feel like neuropathy is taking over their life?

Posted by annregister @annregister, Apr 11, 2023

I am in search of others that are in the same pain as I am. I feel like that the neuropathy has taken over my life. I have finally been diagnosed after four years, with axonal sensorimotor polyneuropathy and small fiber neuropathy. I also have Raynaud’s. Sometimes I feel like, because there’s no boo-boo or Band-Aid that people can see, others do not understand the every day every night pain that I am in. I am a first grade teacher, I love to draw I love to paint I love to be in the garden, I have a new grandbaby …. However, I can’t stand for long periods of time. I’m no longer able to drive, because of the no-feeling in my hands and feet. I can’t even hold a pencil for a long period of time, because my hands go numb and then I drop the pencil. I walk with assistance, for fear of falling, because of no longer feeling my feet. I have tried all of the go to medication‘s that my neurologist has suggested, however none have worked. Gabapentin; the worst of them all, has taken my ability to think as quickly as I need to, to be an affective first grade teacher. I am not able to process or communicate as well as I should be able to. Lyrica; was another medication that gave me dark thoughts. And, on top of those medication’s, my body does not handle narcotics very well, so I just deal with the pain day in and day out. I am just at a loss. Is anyone else out there that feels the same as me?

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julbpat | @julbpat | Aug 1, 2023
In reply to @dbeshears1 "I feel for you. My arms got so bad while sleeping that I wear long wrist..." + (show)
@dbeshears1

I feel for you. My arms got so bad while sleeping that I wear long wrist supports to bed every night, at the suggestion of folks on here, especially @johnbishop . Something turns my arms “off” very easily, and some stools (especially metal) seem to turn my legs off sometimes. It’s almost like a switch that turns the power completely off in my arms or legs, and takes a while to shake it off and get the current flowing again. It seems my nerves must be easily compressed. I can’t sit at a computer for long. It seems no matter how I position my arms, elbows, or wrists, they become unusable very quickly, and I try them out often, can’t stay on a computer more than 15 minutes at a time. My last EMG on one arm and leg for PN was 2+ years ago, and I recall a note to the effect that due to PN, carpal tunnel couldn’t be distinguished but was possible. But my fingers really affected are my pinky & ring fingers on both arms, and I know those are the ulna nerve system vs carpal. But either way, they say it’s PN and I need to live with it, so I took the advice on buying wrist/forearm supports for sleeping, and I have had a 95% improvement in not waking up with the dead, non-moving arms from compressing them while I sleep!

Jump to this post

I am currently sleeping with wrist supports, which is very annoying, but helps tremendously. I have been diagnosed with carpal tunnel in both wrists and one elbow, by EMG. I’m about to see the hand surgeon to get some steroid shots for these areas. I want to do everything before I consider carpal tunnel surgery. My overall SFN pain is a little worse right now, so it makes sense that my hands are bothering me more. Just talked to my neurologist yesterday about trying some different meds.

REPLY
harley22 | @harley22 | Aug 2, 2023

I can really sympatize with you as I have same issues as you do.
Having foot pain daily, is killing me.
Both of my feet are numb, and with pins and needles in them.
Forget my balance, I have none, and feel like a weeble.
None of the meds I have taken in the past helped with my pain and numbness.
I have seen numerous docs, and no one can help me.
All they say is that I have CIDP, cause unknown.

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1 reply
ladybird1950 | @ladybird1950 | May 25 1:29am

Ann, I am near to your medical statusand I understand where you are coming from. I am 73 & today I was Dx'd with Symetric Length-dependant Large Fibre Sensorimotor Polyneuropathy with primarily axonal physiology multimodal sensory loss. I've Ankle areflexia hypotomia Toe extensor weakness, positive Romberg-EDX. I am trying to get ahold of this. Last week I was in consult for surgery after 7 months of waiting following Epidurals of various types for L5/S1 Radiculopathy Spondylosis etc. I am healing from 3 fractures and post 5 Thoratic Comp FX's, a Right Total Hip, Illeus, Cholestoscopy, Uterine and Colon procedures and have escaped C with those. I have not driven in 8 months, in burning, numbness and spasming back, legs & feet miserable and can't do much either. I do not work as you do with the great difficulty in cognition. I feel for you
ANN. I am now down to 6 meds was at one time too many to count with terrible side effects. Thera Flex for Muscle Cramps and Nerve pain helps some. I struggle with Edema and severe bone pain from Osteopenia. I will be having a Intramuscular Subcutaneous supposed Deep Lipoma removed coming up and Cataracts. It all is overwhelming. I am a bit frightened for there is more for me with Adrenal Hyperplasia and a salivary Gland growth to be biopsyed and Imaging for my Skull and neck for Pulsatile Tinnitus. I am a complicated case they say. Ann when I saw your post I wanted to connect. You've small fibre and I Large somewhat different but we both are suffering similar as I find in your writing. I would like to stay connected. It is a hard road to travel and I hardly remember life when I could do. Maybe in some way we can help one another. I will hopefully find out if there is anything that can be done. The near to feeling I am on fire is agony. The balance issues and walking is ruff. Ann I hope to hear from you. Thanks for your reaching out. I fo alot of research and Dx's my own Scleroderma years ago verified in biopsies. We must advocate for ourselves and maintain our autonomy. God bless and thanks for your teaching, it is noble! Until next Tom Ann Goodnight with Angels guard I am smiling to have found your post to hear about you in your writing... LADYBIRD☺️

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catbeth57 | @catbeth57 | May 26 10:36am
In reply to @mayodoug "I had been in the same boat with you for many years until I was introduced..." + (show)
@mayodoug

I had been in the same boat with you for many years until I was introduced to a spine stimulator. I was using several different topical ointments that gave me some relief. The best one I have found so far is CVS' lidocaine lotion and I still use it even though I've had a stimulator implanted earlier in the year. Like you, I sometimes feel like that all I ever do is deal with PN. The condition has killed my social life except for a couple of friends and my family. I'm 77 and I've been retired for 12 years. I never thought I'd miss working until I no longer had a job. Or I should say, a paying job. Now my job is taking care of my feet and hands. I'm still waiting for my first paycheck to arrive.

Regarding narcotics, what have you tried? I'm taking a combination of 10mg of oxycodone and 5mg of methadone. Along with 3200mg of gabapentin each day, they are fairly effective at giving me some relief without making me feel like I am in some kind of stupor.

I wish you the best of success as you look for some answers.

Jump to this post

Hello, I have been taking Tramodol
100mg after dinner since 1999. I have never needed an increase. It is the ONLY thing that eliminates my pain. Believe me I have tried everything. I also use lidocaine cream. I wet white socks and freeze them. They offer instant relief ! With the Tramodol
I don’t need the GABA. It make me so dizzy.
Good luck.

REPLY
catbeth57 | @catbeth57 | May 26 10:38am
In reply to @harley22 "I can really sympatize with you as I have same issues as you do. Having foot..." + (show)
@harley22

I can really sympatize with you as I have same issues as you do.
Having foot pain daily, is killing me.
Both of my feet are numb, and with pins and needles in them.
Forget my balance, I have none, and feel like a weeble.
None of the meds I have taken in the past helped with my pain and numbness.
I have seen numerous docs, and no one can help me.
All they say is that I have CIDP, cause unknown.

Jump to this post

Try Tramodol. I have been on it for 25 years
Only medication that helps.

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1 reply
harley22 | @harley22 | May 26 10:46am

I’m also on Tramadol for my foot pain.It certainly takes the edge off when I’m in such awful pain which is daily.

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asergio714 | @asergio714 | May 26 11:43am

Neuropathy has stopped life as I know it. I woke up one day and I felt exhausted. My neuropathy went from numbness to falling all over like a drunk and dropping things. After months of testing they may have found an answer. Possibly a b12 deficiency

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raebaby | @raebaby | May 26 12:14pm

I use Voxlife Liberty patches for the neuropathy i have in my feet from chemo. They help my loss of balance and numbness in my feet by about a third. It may sound like a marketing ploy but they really work. You should call them to get details. Volife.com. Don't bother with Amazon, the product there isn't the same thing. They also sell socks, but I like the patches that work for 48 hours each for me.

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fred101 | @fred101 | May 26 1:29pm

My sympathy goes out to everyone and we ALL have to hang in there. I have severe Peripheral Neuropathy and it gets worse by the day. I have numb feet and hands and the pain has crept up from my numb feet to my waist and from my numb hands up to my arms and shoulders. I have a strong will to live and am an 80 year old Vietnam Veteran. The VA claims my problem is due to exposure from agent orange when I was way up north in Vietnam near the DMA!
I have seen 15 different doctors, done about every test one can do, and tried all the "snake oils" out there. It is a shame now so many doctors take advantage of people with their false claims and rip us off. Nearly ALL have the same "story" about finding that one ingredient in another country!!!
I am highly allergic to opiates and most meds so that is no help. I force myself to exercise and keep moving, and I use lots of Sombra and other ointments all over my body in the morning and at bedtime to help me some with the horrendous body inflammation.
Ater all my research and experience I really feel strongly that this is all the cause of things our body is lacking or something we are taking that promotes this. At this point it all seems pointless, but I keep on going with a very strong belief in God and the company of the love of my life and best friend in my lovely wife Connie. I feel very lucky that I have lived so long and just enjoy each and every day as it comes and thank God it is not worse. I can still drive and get a round so that is good.
I am in hopes someone will come up with something one day that might help us all to at least combat the pain and realize it is, unfortunately, different for each individual. Semper Fi and hang in there.

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NJ Ed | @njed | May 27 7:15am

@fred101 THANK YOU for your service! I enjoyed reading your post and wish you and your wife many more years together. My wife and I have been married 52 years so I can relate to how you feel. Keep moving, stay strong and fight on despite your PN. You ARE an encouragement to us all! Ed

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