Anyone here dealing with peripheral neuropathy?

I’m trying to find someone with horrible neuropathy. Shooting sharp pains in hips buttocks, down legs , shins and through both feet. Any advice would be appreciated.

I am interested in anyone with PN that also has stiffness in their feet and ankles. I have tingling, numbness and some pain that is helped by Lyrica. However, right now, the stiffness is bothering me more than any of it. Sometimes I will flex my ankle and it seems to get "stuck" and it takes me a second to get it moving again. Any experience with this and any solutions would be greatly appreciated.

I have had peripheral neuropathy for almost a year now. Recently, I was diagnosed with Mixed Connective Tissue Disease. For years I have struggled with many issues but unfortunately my initial ANA test was negative. My hematologist retested my blood and I was positive for ANA and have high levels of RNP autoantibodies.

Hello @jessf, Welcome to Connect. Sorry to hear that you have more than neuropathy going on. It can be difficult trying to manage multiple conditions. I thought you might also find the following discussions helpful:

-- Living with Neuropathy - Welcome to the group:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
-- MCTD, Fibromyalgia, Reynauds:
https://connect.mayoclinic.org/discussion/mcdt-fibromyalgia-reynauds/
What are your symptoms that cause you the most difficulty?

We sold our condo on a nice lake 5 months ago; it had an elevator that kept breaking down and our Management team was so financially inept that I was concerned my dependence on an elevator for daily living. Our search in our preferred area for an ADA home was exhaustive; 55+ communities with activities are very rare. With my handicap and a 76 yr old husband to plan for as well, we needed a smart, safe, newer home. Our searches began to include concessions we could possibly make, where we could buy something and modify for our ADA needs. The garage lift was one - it looked like a great resource for those of us in need! But wow, you’re right.. they weren’t cheap. We’re finally under contract on a perfect ADA home in a very active community, 3 hours away in SC. That state builds for retirees/disabled. (Tax friendlier too) We’re disappointed to leave here, but in the new place we’ll be more comfortable and both have many opportunities to keep us active within our limits. You’re right - our disease is expensive!

I remember the long PT process of learning to stand in place. Boy was that a balance trick., and when up on two feet, I would have to march or teeter to stay upright. They would also make me close my eyes and try to stand; finally one day I was frustrated at my inability to do so and asked “Why on EARTH would I ever intentionally stand up and keep my eyes closed???!!!” She just sweetly replied “You may want to take a shower and rinse your hair without getting shampoo in your eyes”. Well. They do seem to have all the right answers I admit. To this day, every time I rinse my hair in the shower I think of her comment (of course, I keep one hand on the shower safety bar whether I need to or not). Marching in place is a great example of what we do and how we improvise as needed as we find what positions and activities work for us individually. I hope you might get to where you can stand in place longer, with or without eyes open. Thank God for our helpful partners, I would be lost without mine.

@nj Ed We determined too, that we love our home, and that it is important to us mentally and spiritually to be able to stay here. We thought ahead at the beginning of the PN onset, and the garage was a year in the making. So, maybe consider redecorating that downstairs bedroom now. Nothing will happen overnight, and when you try it, you may like it!

I have used a shower chair for quite some time, it is so much safer and easier than trying to shower with one hand at a time.

I recently started Tegretol. I don't know yet how it will help but if you haven't tried it, you could give it a shot. I can keep my symptoms at bay for a good part of the day by massaging my feet with Voltaren gel, from the toes to the ankle then wearing warm socks and good shoes. I use the gel 3 to 4x a day.
I hope this helps

efgh1020 - You are likely right, the first floor BR makes more sense. The odd part is that the steps for me are difficult because of bad knees. The BR and bath are there, we just need to make a few adjustments. If I read your post to my wife, she will say...see!