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.
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:
It maybe time to think about stair chairs or an indoor garage elevator to eliminate the threat of a fall up or down stairs. My neuropathy hit me severely and suddenly from my knees down, with a dropped left ankle in the mix. My husband had a stair lift put indoors and outdoors, and after deciding to stay put, eventually we built a garage with a wheelchair elevator to get me in and out of our house safely and in all weather.
This disease is expensive, despite insurance, but there are ways to get upstairs without risking a fall. Best of luck to us!
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 am lucky because I have my wife do anything that requires a step stool or ladder, and I have only one step up to enter our house and it is all on one level. When I go to the library I can manage the stairs using the hand rails. The only way I can stand in one spot without a cane is to march in place (like back when I was in basic training).
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.
efgh1020 - You have brought up very good suggestions that my wife and I have also discussed. I think the stair chair will be something we need to look into, or we might use a first level bedroom/bath now not in use. I am not at that point, yet. Both of us like our home having been here 36 years and have no interest in selling. You are 100% right about the cost of this disease, some day, I am hopeful that insurance companies will become more liberal minded in their coverages involving PN. Like yourself, whatever accommodations we may need to do will be done with safety as a priority. Our main living level is 2 steps off the ground so that is a plus. Be safe and let's all stay positive.
@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 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.
I am hoping that someone with similar symptoms could share any advice on lessening the specific pain that I experience. After a EMG test I was diagnosed with moderate neuropathy and mild radiculopathy. It seems to be confined mostly to my feet, where I have a combination of numbness (feeling cold when they are not cold), stinging or burning, soreness, and occasional jolts that are like an electrical shock. Often it is concentrated in my toes, but also affects my whole feet. Occasionally one of my feet seems to "cramp" up. Uric acid tests rule out gout. I have tried various medicines, both prescription and over-the-counter (Gabapentin, Lyrica, Motrin, Meloxicam, etc. ) I have soaked my feet in warm water, with and without Epsom salts, tried massaging them, and elevating them. If you have similar symptoms, do you have any suggestions that helped you? Thank you.
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
@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!
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!
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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.
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Helpful -
Hug
2 ReactionsI 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.
-
Like -
Helpful -
Hug
2 ReactionsI 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.
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Like -
Helpful -
Hug
1 ReactionHello @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?
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1 ReactionWe 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!
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Like -
Helpful -
Hug
3 ReactionsI 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.
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Like -
Helpful -
Hug
4 Reactions@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!
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Helpful -
Hug
1 ReactionI 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.
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2 ReactionsI 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
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Hug
2 Reactionsefgh1020 - 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!
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Like -
Helpful -
Hug
2 Reactions