Neuropathy in feet and limited toe movement?

Posted by plbelanger @plbelanger, May 15, 2020

Just curious as I was diagnosed with peripheral neuropathy in the beginning of this year but have yet to see a neurologist about it (postponed till end of June due to COVID19). I have constant pins and needles, numbness, pain in both my feet. It's gotten worse over the years (been dealing with it for ~10 years and never went to a doctor about it due to lack of insurance) and now I can no longer even bend my big toes at all and even bending any other toes are rather difficult. Just wondering is this common...anyone else have this?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@summertime4

@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 Your soulful writing has touched me. So well written. Everything I feel, as well. Love to you. More love to you. I am here for you and listen.... Lori Renee

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@rwinney

@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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@jimhd I have to stick my two cents in. You are just the best!!!! I thought so even immediately when I first started at this sight. I follow all your health journey, and hope good things happen for you in September. Love, Lori Renee

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@jesfactsmon

@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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@jesfactsmon Hi Hank, To watch your loved one go through this, when you love so much, is beyond tough. You are such a sensitive, intelligent, caring man, and I am sure you just get worn out watching and helping your wife. I don't think care givers get the Kudos that they deserve anyway. And with Neuropathy, there is no end. It just goes on and on. Linda is so damn lucky to have picked you. What a wise lady. I am here to hear you, Hank. You are the best. Now go kiss Linda!!!! Love, Lori

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@rwinney

@jesfactsmon Hi Hank and my fellow PN sufferes. I am coming off a very bad week and weekend. Both physically and mentally. I've done my share of crying, had my little tantrum. OH, it comes and I'm not proud of it. I like to think I'm a strong person and when my health gets the best of me, I get mad and disappointed in myself for not handling it as well as I want to. This too shall pass....and it always does, but in the moment, it is miserable.

I'm feeling better and stronger this week and received good news yesterday from my EMG/NCS....I DO NOT have large fiber neuropathy or CIDP (Chronic Inflammatory Demylenating Polyneuropathy). The first test was done a few years ago and I wanted to rule out the possibility of this type of progression. I'm happy and lucky.

Thanks for the inspirational song link Hank. I have faith in how we can all pick each other up here in this forum. What a blessing to have you all. Thank you to everyone. 💕

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@rwinney Rachel, So sorry about your lousy week. How can that not happen when you feel lousy so often? It is natural, like a damn that holds too much water and just breaks...... we are not rocks, ya know? I am glad for your test results of what you don't have. You don't need any more!!!!! So; cry and scream when you must. I have, I will, I am sure. You have to let the misery out of your system. I am thinking of you Rachel. Such a good woman. Love, Lori

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@lorirenee1

@jesfactsmon Hi Hank, To watch your loved one go through this, when you love so much, is beyond tough. You are such a sensitive, intelligent, caring man, and I am sure you just get worn out watching and helping your wife. I don't think care givers get the Kudos that they deserve anyway. And with Neuropathy, there is no end. It just goes on and on. Linda is so damn lucky to have picked you. What a wise lady. I am here to hear you, Hank. You are the best. Now go kiss Linda!!!! Love, Lori

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Yes ma'am! (You sound like you're full of you-know-what and vinegar today.)

Hope Mister DRG is being good to you today. 🤞 Have a great day Lori!

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BTW, anyone have it worse in one extremity? I have it in both my feet but the left one is noticeably worse.

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@blbelanger Yes. My left foot and ankle are much worse than the right. I cannot even move my 3 toes and the swelling is bad. My right foot also is diagnosed with neuropathy and the pain is bad, but not as bad and does not look as ugly as my left foot. The top of my feet hurt so bad when ever I over due it. Right now, after trying to mow, my sugar dropped to 68 and would have kept dropping had I not come in. No, not diabetic they say, but have sugar drops often when I over do. You would think I would learn. No, I am so angry right now. I hurt so bad. Did get sugar up, but now depression and foot pain. You know when you lose a partner everyone tells you how they will be there for you for whatever you need. Well, that's not so. Can't even rely on people you pay. Guess I need grief counseling right now and not neuropathy. I sometimes feel like giving up and letting it all fall apart. Sorry folks. You don't need my negativity. I am glad your here though.

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@summertime4

@blbelanger Yes. My left foot and ankle are much worse than the right. I cannot even move my 3 toes and the swelling is bad. My right foot also is diagnosed with neuropathy and the pain is bad, but not as bad and does not look as ugly as my left foot. The top of my feet hurt so bad when ever I over due it. Right now, after trying to mow, my sugar dropped to 68 and would have kept dropping had I not come in. No, not diabetic they say, but have sugar drops often when I over do. You would think I would learn. No, I am so angry right now. I hurt so bad. Did get sugar up, but now depression and foot pain. You know when you lose a partner everyone tells you how they will be there for you for whatever you need. Well, that's not so. Can't even rely on people you pay. Guess I need grief counseling right now and not neuropathy. I sometimes feel like giving up and letting it all fall apart. Sorry folks. You don't need my negativity. I am glad your here though.

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@plbelanger @summertime4 @jesfactsmon @rwinney @lorirenee1 and all of the people here who have become a source of strength to me.

My first therapist told me that I was the best mask wearer she'd ever seen. A lifetime of working in a caring profession had made it necessary to learn how that's done, though I think I carried it a few notches higher than was healthy.

Your kind words have touched my heart and I thank you all.

@plbelanger I started with more pain in my right foot, but it soon evened out. Then I had surgery on my left ankle a year ago, to repair all the damage in ligaments and muscle. The surgeon put in a permanent internal splint to prevent me from rolling my ankle and tearing things up again. Since then, the pain in that ankle seems different from the neuropathy pain. So, double the flavor, double the fun.

Hank, @jesfactsmon thanks for the timely tune. With the comorbidity of chronic pain and depression and PTSD and so on, I have lots of times when I want to give up. I talked with my therapist about this today. It's no longer something that's in the forefront of my thoughts, but even so, it's there, just under the surface. So, @summertime4 , you're not alone. My father drummed into me that big boys don't cry, and by teaching me that he handicapped me emotionally. But when I was in the safe facility after attempting suicide, the dam broke, and I couldn't stop crying. I have a few times since then, but I feel constricted, so the tears are like an underground stream. I have the feelings that accompany tears, but they don't surface.

I'm going to stop here before I do something that blasts my message into cyberspace, where I can't retrieve it. I'll chance it to say one more thing. I often hear myself and others apologize for being negative or down or complaining. If we can't express our real thoughts here, where so many of us have much in common, where we're heard but not judged, where else can we go? I know there are other places we can turn to, and it's good to have those resources. There are times, though, when Connect is the only available option for some. I hope we can continue to make it a safe haven in life's storms.

Love and blessings to you all.

Jim

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@jimhd

@plbelanger @summertime4 @jesfactsmon @rwinney @lorirenee1 and all of the people here who have become a source of strength to me.

My first therapist told me that I was the best mask wearer she'd ever seen. A lifetime of working in a caring profession had made it necessary to learn how that's done, though I think I carried it a few notches higher than was healthy.

Your kind words have touched my heart and I thank you all.

@plbelanger I started with more pain in my right foot, but it soon evened out. Then I had surgery on my left ankle a year ago, to repair all the damage in ligaments and muscle. The surgeon put in a permanent internal splint to prevent me from rolling my ankle and tearing things up again. Since then, the pain in that ankle seems different from the neuropathy pain. So, double the flavor, double the fun.

Hank, @jesfactsmon thanks for the timely tune. With the comorbidity of chronic pain and depression and PTSD and so on, I have lots of times when I want to give up. I talked with my therapist about this today. It's no longer something that's in the forefront of my thoughts, but even so, it's there, just under the surface. So, @summertime4 , you're not alone. My father drummed into me that big boys don't cry, and by teaching me that he handicapped me emotionally. But when I was in the safe facility after attempting suicide, the dam broke, and I couldn't stop crying. I have a few times since then, but I feel constricted, so the tears are like an underground stream. I have the feelings that accompany tears, but they don't surface.

I'm going to stop here before I do something that blasts my message into cyberspace, where I can't retrieve it. I'll chance it to say one more thing. I often hear myself and others apologize for being negative or down or complaining. If we can't express our real thoughts here, where so many of us have much in common, where we're heard but not judged, where else can we go? I know there are other places we can turn to, and it's good to have those resources. There are times, though, when Connect is the only available option for some. I hope we can continue to make it a safe haven in life's storms.

Love and blessings to you all.

Jim

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@jimhd

@plbelanger @summertime4 @jesfactsmon @rwinney @lorirenee1 and all of the people here who have become a source of strength to me.

My first therapist told me that I was the best mask wearer she'd ever seen. A lifetime of working in a caring profession had made it necessary to learn how that's done, though I think I carried it a few notches higher than was healthy.

Your kind words have touched my heart and I thank you all.

@plbelanger I started with more pain in my right foot, but it soon evened out. Then I had surgery on my left ankle a year ago, to repair all the damage in ligaments and muscle. The surgeon put in a permanent internal splint to prevent me from rolling my ankle and tearing things up again. Since then, the pain in that ankle seems different from the neuropathy pain. So, double the flavor, double the fun.

Hank, @jesfactsmon thanks for the timely tune. With the comorbidity of chronic pain and depression and PTSD and so on, I have lots of times when I want to give up. I talked with my therapist about this today. It's no longer something that's in the forefront of my thoughts, but even so, it's there, just under the surface. So, @summertime4 , you're not alone. My father drummed into me that big boys don't cry, and by teaching me that he handicapped me emotionally. But when I was in the safe facility after attempting suicide, the dam broke, and I couldn't stop crying. I have a few times since then, but I feel constricted, so the tears are like an underground stream. I have the feelings that accompany tears, but they don't surface.

I'm going to stop here before I do something that blasts my message into cyberspace, where I can't retrieve it. I'll chance it to say one more thing. I often hear myself and others apologize for being negative or down or complaining. If we can't express our real thoughts here, where so many of us have much in common, where we're heard but not judged, where else can we go? I know there are other places we can turn to, and it's good to have those resources. There are times, though, when Connect is the only available option for some. I hope we can continue to make it a safe haven in life's storms.

Love and blessings to you all.

Jim

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Jim, thanks for this post. I really hear you about your dad. Mine was a caring loving person but he also had that attitude so prevalent in the WWII generation of stiff upper lip (for boys) and don't indulge in emotion. You are absolutely correct in identifying how it affected us, their kids. To this day I usually feel ashamed of showing emotion outwardly, while knowing intellectually that there is nothing wrong with it. Thanks WWII fathers!

Connect has been an unexpected surprise to me. I am keeping up with it first and foremost to stay abreast of info regarding PN on behalf of my digitally and cyber challenged spouse. So no, I do not suffer directly from chronic pain. But Connect is a real learning experience for me. I am very private as well as very independent, to the point where I don't generally confide much in others, which includes family, most of whom see life very differently from myself. I do seem to connect with many people on this forum though (Connect, pretty apt name, eh?). I think it's partly because people who live in dire pain every day see life in a different context, from a different perspective. What they are grateful for are things most people don't give a second thought about because they have never dealt with horrid pain every day and every night. You are all members of a very special, dare I say elite, group. You do not wish to be members, didn't ask to be inducted, but here you are.

I feel a genuine sense of privilege to be able to sit among you who share this alternate reality of suffering which is inhabited by only a few. You'd give up being a member of this pain sufferer "club" in a heartbeat, but since you are in it and must endure the consequences that membership entail, you reap the rewards as well. What rewards, you ask? Okay, without getting metaphysical or religious or talking about a purpose for you in this life, etc, etc, I will just give you my opinion. A reward for living with pain as your constant companion is that you gain insights into life and a perspective on life that most other people in the world have no idea about. You may occupy the same world physically, but you live in a different word mentally and emotionally. And the fact that it (pain) exists for you and no matter what you do it will not go away, ultimately it humbles you. OK, you might not feel humble today, maybe you are just angry. Today. But you can only be angry for so long. Eventually you have to put that ego aside and say (to the universe?) "Okay, so what's the plan?".

Humility is a quality that is not freely available to most people. But it is a quality that does bring out your better self ultimately. I would say that when faced with a fact of life that you obviously can not change, it's time to accept it. Be humble and enjoy that humility. It's at least something you have and have earned. Yeesh, I am sorry if this sounds preachy or something. I don't mean it to. I just have so much respect for you Pain Warriors. I live with one. I know it seems like nothing you'd ever ask for (i.e. this life of pain you inhabit) but since you are here, try to be aware of things that you are being given in addition to the pain. OK, enough. If you are still reading this, Jim and others, thanks. It's an honor. Really!

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