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Neuropathy in feet and limited toe movement?
Neuropathy | Last Active: Nov 11, 2020 | Replies (150)Comment receiving replies
@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
Replies to "@summertime4 @lorirenee1 @phoenix0509 @johnbishop I'm sorry, David, that you're now on the pain management track. Join..."
@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
@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
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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