Living with Neuropathy - Welcome to the group

Happy Friday!
This week I went to my wonderful neurosurgeon. This is the doctor who, with surgery, was able to make me pain free for the first time over a decade; but that is another story.
Over the last few months, he has been trying to figure out why my legs have gotten weak and why I have developed neuropathy (with my big toe on my right foot not working at all). He has sent me to all sorts of doctors for all sorts of tests. As a last resort, he had me take a brain scan to see if I either had a stroke somewhere along the line or if I have something going on in my brain that would contribute to this. I AM THRILLED TO SAY THAT NONE OF THOSE SCENARIOS ARE HAPPENING. MY BRAIN IS HEALTHY!!!! (Lucky none of you know me personally because the comics would really get off on those statements.)
He suggested the last time we saw him (prior to this), that he could do surgery near my last one, and do some additional work, but he said he really didn't know if it would help. In addition, he could not guarantee that the pain I experienced for all those years wouldn't come back. My hubby and I discussed this and decided that neither of us is willing to take the chance of the pain returning. So, I will continue to use a cane, walk slowly and go for some PT for balance. If the neuropathy and/or legs become MUCH worse or painful, then I will reconsider my options.
I gave the doc a big hug and thank you and we said "good-bye".
I am not thrilled with this outcome, but I am content (for now).
Ronnie (GRANDMAr)

I have not heard surgery - yet. My pain is exactly as you say. My last three toes, across top of my foot and ankle. Neurologist will discuss more on next visit. Do your toes foot and ankle swell along with the pain? Thank you for sharing this with me as I do not want surgery. I had carpel tunnel surgery years ago but as I said, years ago.

@gmaw4 You give us all hope!!!

I'm about finished. I'm at the point where the pain is intolerable. The Pain Doctor increased my medicines, I took it for a few days and could not wake up - I lost 2 days of what's left of my life. I had to retreat to the previous dose - it's still inadequate and my life isn't worth waking up for. Is Euthanasia legal yet? Anywhere? Peggy

Hello Peggy @pfbacon, I know it must really be hard for you to deal with the pain. You mentioned that you had to retreat to the previous dose and it's still not adequate. When your pain doctor increased the dose and you took it a few days do you mean you didn't have any pain or that you slept for 2 days? I would talk with the pain doctor and see if they have some suggestions on the dosage and maybe lowering it somewhere in between what it was and what you went back to taking.

Hoping you have some relief from the pain soon.

@pfbacon Peggy, I imagine that all of the people on this forum at one time have wanted to give up because of the situations they are in. I have thought about it. I have been though the stages of grief that are normal, and I think people who are diagnosed with some incurable disease go through the anger, the grief, the "why me," the sadness, the fight, the flight, and then may reach the point of just wanting to give up. When I feel this way, I stop and think that there are so many people who have situations more severe than mine. We don't know why we get a disease or have severe pain when other people are enjoying life. What I have come to realize and accept is that there are problems in our lives that we have no control over. I am not saying that we accept the pain, but we seek information from those who are also trying to find help. Can you go to another doctor and get another opinion? Don't let yourself give up. A professor I had used to love to say "Keep on, keeping on. I know you have read posts on the Mayo Connect site from people who are in the same pain situation you are in. I have diabetes and have such pain in my feet that yesterday I thought I would not be able to walk at all. I elevated my feet and messaged them and eventually the pain was less---not great but better. Small baby steps sometimes help enough to give relief. Just allow yourself a chance to read more posts and see if someone can give you suggestions. I haven't found anything that helps, but I haven't been to a pain dr. and I haven't told my endocrinologist. I want to be strong and try to learn as much as I can. Just don't give up on yourself. I will look through and find others who may have some suggestions.
If you need to write any time there is a Neuropathy group and a Just Want to Talk group. Also I am on the diabetes group, and I will do anything I can to help.
Carol

@gmaw, Thank you for this information. This appears to be a reliable strain. It also looks like you have done your experimenting and chosen your medical cannabis safety net.

I have small fiber neuropathy (sfn). I use both topicals and have recently mastered the sublingual dosing. Just a few minutes held under your tongue so it goes through the membrane quickly.....3 times a day. Then come the topicals for hands, wrists, and feet.

Congratulations to you for being pain med free. That also means that you are probably free of fear and anxiety about the pain. Since fear and anxiety cause more pain, you have chosen a significantly more effective path.

Please share significant changes and new knowledge. Have a joyful day. Chris

I am so, so sorry for all that your are going through. I am sure the combination of pain, meds and frustration is taking its toll!
Please do not do anything harsh that you might regret later. Speak with your doctor and try to come up with a plan that might work better for you!

You are in my prayers!
Ronnie (GRANDMAr)

I feel your pain. Thanks be to God, I've had no broken bones but four fusions and eight knee operations put me in your league of polyneuropathy. I lived on Oxycontin, Lyrica, Baclofen, and Amitriptyline. The side effects of the abuse of Oxy have made life a living hell here in the State of TN. It was bad enough that my GP was forced to discontinue prescribing Oxycontin by my state, but now they are forcing pain clinics to close or jump through a maze of hoops to stay in business. I had a manageable quality of life until May 8th when the State of TN forced the closure of my last pain clinic. I am now on a two-year waiting list just to get into another clinic. All of that time without the Oxycontin that I was living on.

Thank you all. I'm not depressed, just can't take the pain any more. When military prisoners are tortured, they look for something sharp to cut their veins with when they can't take the pain any more. That's just what humans do. The pain must be stopped when it can no longer be endured. I wish politicians would think about this before they made draconian laws restricting what doctors can do for their patients. I had a good life, I don't have young children or grandchildren. I have friends and a husband but they are not dependent on me. I still need to know about euthanasia. I knew Doctor Kavorkian's cousin, Chevalia, but they have both passed away. PS I understand about the difficulty of getting medicine. The whole country seems to have gone kookoo about opiates - everyone who says the word 'pain' is considered to be an addict and a criminal until they prove themselves innocent. Peggy