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Dose anyone else feel like neuropathy is taking over their life?
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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Have you ever been checked for arachnoiditis? Sure sounds like that could be it. I had to go to Duke to get my diagnosis. I have yet to find a doctor in Louisiana who has even heard of it. Lyrica helps me tremendously. Let me know if you would like to discuss after you have checked it out through Google.
On it for awhile now
Definitely helps take the edge off but the constipation is terrible
Yes. Opioids do cause constipation. Numbs the bowels. May need an occasional laxative to push things along.
I use ducolax generic occasionally. Also Miralax for bulk. A synthetic fiber like substance. It can be mixed in anything. No taste. The real fiber drinks cause too much gas.
yes!! my whole life seems to depend on my feet and although I use a scooter, electric whee
chair( continued from above), i hurt. I can only seem to get a handle onit with an icepack under my feet, or my feet not touching anything.
Hi Linda @lindaww, I see that you joined Connect in 2020 but today is the first time you have posted so I would like to welcome you to Connect. Sorry to hear that neuropathy has been taking over your life. It can be the pits trying to find some sort of relief or something that helps on a daily basis. Not sure if you have seen the Foundation for Peripheral Neuropathy site but they have a lot of helpful information - https://www.foundationforpn.org/living-well/.
There are also a lot of different discussions on Connect for what helps neuropathy. Here's a link that shows all of the different discussions if you want to scan through them to see if there are any that might help - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps
Are you able to share a little more about your neuropathy diagnosis?
I have critical illness neuropathy. in 2020 as covid first started, i had influenza A, sepsis and pneumonia . I was the only person in fargo on a ventilator that did not have covid. 47 days later I started waking up. i thought i was in hell, as it was dark, and all i saw was what looked to me like something ready for sacrifice. The next time i woke up, it was daytime, and i realized that what i thought was sacrifices was people laying under white sheets. So of course I thought I was in a morgue. more to story but cant put it down right now. I still cry when i realize what happened to me
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