Neuropathy in feet and limited toe movement?

Yes! Also, you may want to get on FB. That’s where there are so many groups and you will receive instant responses! Best wishes

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@kscott42 Thank you. Face book is a good idea. I have had many questions answered from people on face book and they are sincere also as to wanting to help. I may have friends that have neuropathy and have similiar issues and they may live right around the corner. I have a very nice group of face book friends so I am not afraid to ask some questions. In fact I heard that my neighbor a few houses down was recently diagnosed with neuropathy. If nothing else I can tell her about this group. Thank you.

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@summertime4 @lorirenee1 @phoenix0509 @johnbishop

I'm sorry, David, that you're now on the pain management track. Join the team. I don't have much support from people other than Mayo Connect, my therapist (and I think he gets tired of hearing the same story every week), and various doctors. I know my wife cares, but she is dealing with some significant pain herself, so I try to limit how much I say about mine. The same thing is true for depression and other challenges I face long term.

David, @phoenix0509 I will be having surgery for serious spinal stenosis at the lumbar/sacral connection. The neurosurgeon said that it's quite possible that surgery will reduce my pain in my feet and ankles. But she said that we wouldn't know until after surgery. I went to her with the intention to discuss a DRG stimulator implant, but she said that the stenosis is a problem that should be addressed first. All 5 of my siblings have had back surgery, and I thought I'd escaped. I'm a bit dismayed to hear your outcome.

Right now, sitting in my recliner after a fairly easy day, my feet and ankles are hurting almost as much as ever. It's gradually making its way up my legs. By the time it reaches my knees, it's usually not as bad. In the 7 years since my last nerve conduction test, I've moved from normal motor and sensory results to 50% reduction, according to the tests I had done yesterday.

So, how long, and how far can we go, trying things that are actually kind of silly, hopeful for some relief that will last longer than a few weeks or months or years. I just hope that I won't have my morphine sulfate contin taken away, because some people (who are probably healthy and have no idea what chronic intractable pain is like) have decided that our meds that were prescribed for pain aren't really pain relievers. I forgot my morning pill last week, and by evening I knew exactly how much of a pain reliever it is, even at a 15mg low dose. My PCP has already stopped allowing Percocet, so I only take it at night when the pain is at its worst, trying to make what's left last longer. Are we all destined for alternative pain killers? Even if we have to get them illegally? I guess we'll find out, probably sooner than we'd like.

Time for me to shut up and take my night time pills, even ones that are just tricking my mind into thinking that the pain in my feet isn't real.

Jim

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@jimhd @summertime4 and others, my wife is in the same boat as you guys, PN pain through the roof. She is and has always been determined not to take drugs as she is afraid of the side effects and the dead-end she feels they lead to. I don't know when she will crumble and finally succumb to taking painkillers, but not yet. The trouble is that the pain is so mercilessly relentless. It never quits. Oh, she can have a good day occasionally where her pain is at about a 4 level for both her PN and her migraine headaches, but next day it's right back at a level 8 all day! It just wears on you, no matter how stoic and strong you are, it just wears you down. The kicker is that it gradually gets worse, gradually over time. Where you are this year is a little worse than last year at this time. That is why I say, as tough as she is, I think drugs may have to be in her future. The only thing that gives her relief right now is marijuana. And she says if she does it more than about 2 or 3 times a week it starts to be less effective. And after smoking it only lasts about 3-4 hours so she tries to use it close enough to bedtime to give her an easier time getting to sleep.

As a helpless caregiver watching all of this it is truly heartbreaking. And as I read your posts I feel for every one of you guys who experience this on a daily basis as well. I don't think I could take the burden of the pain my wife suffers as well as she does, but if I could I would accept some of it from her. Or if I could take the whole load from her one or two days a week. I feel this despair you feel @summertime4 . what else can you do but feel despair. Between her chronic pain, the ridiculous lockdowns and the lawlessness in the streets, it's a discouraging time for us but especially my wife. She watches way too much news on TV, I try to avoid as much as I can.

But here's the thing. We are human, and as humans, when all else fails, we have at our disposal both philosophy and spirituality. However you may relate to the higher power, that is the endgame for a lot of us. Don't mean to be fatalistic, but isn't it the reality? After you have done everything else you can think of and the pain is still there, where do you go? My wife has contemplated suicide but I don't think she will succumb to that, especially if I have anything to say about it. I don't have any answers, but I just know that we have each other here on Connect and that is something. Sorry everyone, I get sad sometimes. But I am glad to know you're all out there, going through the same s**t my wife and I are.

And who knows, maybe miracles will happen and a breakthrough will come along that is THE ANSWER for neuropathy. Yes, life is just crazy enough that it could happen.

Best to you all, Hank

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@jusfactsmon, jimhd Thank you for what you are saying. I know there are o many of us suffering from the disease. I can't even understand it, no less accept it. Did we do something to our bodies when we were young? It is so rampant in older people. Just when we are told about the "Golden Years". People who have no idea of the pain we are in or the balance problems I have don't understand why I am not doing all the fun things "Old people can now do". I hear go more places, do more things. Heck, some days getting in the bath is enough. I keep pushing with doing my own cleaning., dragging trash can down the driveway, yard work, and the other chores a home owner has to do. I do get someone ot mow the grass, but I still use my push mower afterwards because they dont do so many small areas. When I am able to complete a chore I am in so much pain I usually end up in tears and of course a pain pill comes out. Yes, the pain is very bad right now because I over did yesterday. So it goes. Do I just stop. Do I do nothing around here and just sit in a recliner with feet and legs up. My husband died 2 years ago so I must be somewhat independent. Then the depression comes in. So now an antidepressant pill. Obviously doesn't work too well -right? I was crying pretty much all day in between my chore and now only in the evening. Maybe helps a little. We are a group of tough individuals in spite of all my negativity. I have a 4 year old GREAT grandaughter who comes to visit every Sunday (can't even crawl n Monday, but thats ok) I want to leave memories for her and her Mommy so I hang in here. God bless us all.

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@summertime4 You are strong, you are brave! I hear it in you. Hang in there. Sending positive vibes for continued strength and perseverance with what life has dealt you. Dont ever give up, despite the circumstances, and continue to seek motivation. Your great granddaughter is perfect motivation! I hear you shine talking about her. 🌟

We all must keep fighting and not be defeated. 💪🏼

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You are right Rachel, "don't give up". Hey get this, and you too @summertime4 as well as all of you PN sufferers out there: After feeling a little down about the post from @summertime4 this morning for whom I feel A LOT of compassion, I went for a hike. Driving back home from the woods this song came on the radio. It gave me a boost (and a chuckle at the irony of hearing it this particular morning). Have a listen:

Maybe there should be a link to this at the top of every page on Connect. 😊

Jump to this post

You are right Rachel, "don't give up". Hey get this, and you too @summertime4 as well as all of you PN sufferers out there: After feeling a little down about the post from @summertime4 this morning for whom I feel A LOT of compassion, I went for a hike. Driving back home from the woods this song came on the radio. It gave me a boost (and a chuckle at the irony of hearing it this particular morning). Have a listen:

Maybe there should be a link to this at the top of every page on Connect. 😊

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@summertime4 @lorirenee1 @phoenix0509 @johnbishop

I'm sorry, David, that you're now on the pain management track. Join the team. I don't have much support from people other than Mayo Connect, my therapist (and I think he gets tired of hearing the same story every week), and various doctors. I know my wife cares, but she is dealing with some significant pain herself, so I try to limit how much I say about mine. The same thing is true for depression and other challenges I face long term.

David, @phoenix0509 I will be having surgery for serious spinal stenosis at the lumbar/sacral connection. The neurosurgeon said that it's quite possible that surgery will reduce my pain in my feet and ankles. But she said that we wouldn't know until after surgery. I went to her with the intention to discuss a DRG stimulator implant, but she said that the stenosis is a problem that should be addressed first. All 5 of my siblings have had back surgery, and I thought I'd escaped. I'm a bit dismayed to hear your outcome.

Right now, sitting in my recliner after a fairly easy day, my feet and ankles are hurting almost as much as ever. It's gradually making its way up my legs. By the time it reaches my knees, it's usually not as bad. In the 7 years since my last nerve conduction test, I've moved from normal motor and sensory results to 50% reduction, according to the tests I had done yesterday.

So, how long, and how far can we go, trying things that are actually kind of silly, hopeful for some relief that will last longer than a few weeks or months or years. I just hope that I won't have my morphine sulfate contin taken away, because some people (who are probably healthy and have no idea what chronic intractable pain is like) have decided that our meds that were prescribed for pain aren't really pain relievers. I forgot my morning pill last week, and by evening I knew exactly how much of a pain reliever it is, even at a 15mg low dose. My PCP has already stopped allowing Percocet, so I only take it at night when the pain is at its worst, trying to make what's left last longer. Are we all destined for alternative pain killers? Even if we have to get them illegally? I guess we'll find out, probably sooner than we'd like.

Time for me to shut up and take my night time pills, even ones that are just tricking my mind into thinking that the pain in my feet isn't real.

Jim

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@jimhd Hi Jim. I always appreciate your posts. There is a sort of calmness and stoic presence about you. I'm very sorry to hear of your recent health problems with reduction of motor and sensory nerves and your lumbar obstacles. We wonder...how much can one person take??? I give you so much credit for being a Volunteer Mentor on Connect. You are a strong, caring, determined soul and I know you will continue to persevere because that's who you are. I wish you all the best Jim and am sending positive, reinforcement vibes your way! Take care.
Rachel

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