Neuropathy in feet and limited toe movement?

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!

Jump to this post

❤

Jump to this post

@plbelanger Thank you Jim and al of you who responded to our heartfelt pleas. For a while after submitting my last post I thought you would all find me too negative and I might get berated, Thank for all the kind words to each of us from all of us. At times venting our feelings, even if they aren't directly related to the pain and neuropathy is healthy. Emotions play such an important part in regards to pain. The more distressed we are, the deeper the physical pain. Wish we could all meet together and share with each other in a face to face group. Far now, I take all your love, acceptance and feedback and cherish it.

Jump to this post

@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

Jump to this post

I'm giving out hearts today because all you guys got me feeling some type of way.

Very touching. Proud to be amongst you.

Jump to this post

@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

Jump to this post

❤

Jump to this post

@jesfactsmon This post of yours just blew me away! So well said! So thoughtful! Such depth! Thank you, Hank. Such great perspective, insight, and caring....Love to you. Lori Renee

Jump to this post

@jimhd ,Jim , I hope that you get some relief from any upcoming spinal stenosis surgery. I did get relief from my lumbar surgery (L5-S1 TLIF) I no longer had this pinched nerve, radicular left leg pain (had surgery summer 2019) . When it comes to pain control, you are the best judge as to your needs. Seek out a good pain specialist , many pain doctors focus on just giving injections and consider themselves interventional pain docs. Instead seek out a pain specialist that specializes in many oral pain meds. This moves responsibility/worry away from your primary care doc and fear that you will be cut off from your pain med to your pain med doc whose job is to keep you more pain free on a continued basis. You are doing good things for yourself and I am always humbled by your ability to share your story. It is a pilgrimage of suffering and from that find meaning. Best, David

Jump to this post