Controlling the Anger and Sadness: My Neuropathy is Overtaking Me

I’m just curious ; could you adjust your cbd dose (I’m sure you do not need to have this suggested to you , but I’m curious as to what your experience with CBD has been ).
I use a lotion form of CBD that I buy from Whole Foods . It doesn’t affect me mentally.
It seems so unfair to live with the terrible pain and dysfunction of neuropathy without some sort of relief .
I have neuropathy , but I’m on lyrica and a small fentanyl patch for other reasons . But when my patch is not changed or I have been out of my meds , my feet really start to hurt so badly and it’s in such a weird way also . I don’t know what I would do if I could not take those meds . Perhaps we need to return to some of these meds in a very controlled fashion instead of allowing people to just suffer . I have been in so much pain before that it superseded anything else in my life and being told to do breathing exercises or imagining my favorite place doesn’t cut it . I came to a place where I thought I just didn’t want to be here anymore ; I didn’t want to kill myself, but I didn’t want to be here, either . So my pain has been basically relieved by the big ole bad opioids that medicine has forsaken . And I don’t apologize for that . It is the only way I can participate in this life at all . So do know that I understand how you feel and I have been there but that I also have found some relief . I will always have a certain amount of pain , but I can pretty happily (no euphoria ) exist this way . I hope and pray you find some help - don’t give up , keep asking .

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This is some info I found out from my neighbor ~ When she tried to claim disability and unable to work it was approved only after being unable to work for 1 YEAR. If you go back to try it and find out it is too much the year starts the last day of work. FYI

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Hi Lori Renee, I am so sorry and truly empathize. I have those days too, where the SFN and autonomic neuropathy just overtake me and it always comes with so much sadness. My doctor has me on Amitriptyline which helps with the pain but it’s also an antidepressant. It’s not perfect, I still have those days but without it, I’m not sure where I’d be because I had zero coping skills in the several months, probably longer, before Amitriptyline. I hope today is a better day for you. You are not alone. ❤️

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Robyn and Debbie, and to all who have recently written here; Of course, I relate to everything you write. My feet can utterly rule my life at times, but not as bad as I was a year ago. I want to share some things that have actually helped my throbbing feet. First, I use Benfotiamine, which is a fat soluble form of thiamine (Vitamin B1) that I buy on Amazon. Low thiamine levels can cause very bad neuropathic symptoms, and yet it flies right under the radar with most doctors. I discovered using it from another person right here on Mayo Connect. Within 48 hours of taking it, my throbbing feet went from a 10 to a 5 or less sometimes, on the pain scale. Benfotiamine is widely used in Europe, but not so much in the USA. I have no idea why. It can take several months to work, but for me, it was immediate. I take a 300 mg. pill twice daily. Another thing that really helps my pain is Kratom. It is not sold in about 5 states within the USA, but I don't know which ones except for Wisconsin. The World Health Organization just evaluated it, and had thousands of letters from people who said it helped their anxiety, pain, and depression. WHO decided to leave it be, and not give it more scrutiny even though the FDA wanted it scrutinized. There is more and more solid. controlled research supporting it's use for pain. I swear by it. It is made from the leaves of SE Asian trees that resemble the coffee plant, and ground into pills. I buy the pills listed for pain at ethanaturals.com The two owners of that company are chronic pain sufferers as well. I swear by Kratom. It must be respected and treated as a medication, as this is what it is. My best to all of you. Our roads are not easy. Lori Renee

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I wish I found this group much earlier in my journey. I felt alone and in disbelief that it was possible to not know what causes something so dramatic and damaging to our bodies (and minds). I go through times when I think mean things: like neurologists must be the lowest in their medical class to graduate, lazy, choosing this field because they can easily check the “idiopathic “ box, push pills, and move to the next patient quickly. But I realize more now that it’s my anger of the situation influencing some of my ill thoughts.
We need our medical folks in a partnership with us in order to help. That’s what I am currently missing from mine. Like a lot of us here, I need compassion, I need a coach. I need a doctor who can feel my sadness of waking up weak one morning, and within 2 weeks hospitalized and starting life over in a wheelchair, like a newborn, no longer able to walk, run, bike, swim, or go to the bathroom by myself and wipe my own rear end. (I thank God for getting me to physical therapy where I can do that last thing now!) if you were in an auto accident, they’d have compassion, but since they have no clue what’s wrong, and in my opinion don’t look hard to find the cause, I feel ignored, or quickly expected to toughen up and live with the unknown. I was LIVING and doing my part to stay healthy- I was never one to knowingly do bad things to my body and expect doctors to fix things I was doing to destroy my health! I am a hard worker and will partner with them to make me better!
This group has taught me more compassion to our doctors despite my hurt. Maybe they’re as angry as we are. I strongly suspect insurance companies hold their treatment of us back, as if they won’t pay for much “exploratory “ tests unless there’s a 99% chance they’ll find something. While I’m trying to soften up and get better teamwork with me from my doctors, I admit I lay awake at night fantasizing that there’s something simple in my body causing this that can easily be fixed. Maybe a tiny little cyst on the spine somewhere, maybe a very strange vitamin deficiency of some sort, maybe one of the thousands of mosquito bites I’ve had in my life was really bad….. while I dream, I’m going to keep praying to the big Doctor above that one day we are all guided to answers to our mysteries.

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For a group that may give you more interaction with other PN sufferers join peripheral neuropathy success stories on Facebook. Over 18,000 members.

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Thanks so much Lori Renee - this is why I like this forum, we get coaching and ideas that our medical doctors don’t give! I am going to try the Benfotiamine for starts. I googled, and while articles talk specifically about it possibly helping diabetic neuropathy (which I do not have), I can’t see any harm in it. Doctors have been unable to answer my question if relief for diabetic neuropathy has similar results for idiopathic neuropathy… Since I was told 5 years ago I “may” have had a vitamin deficiency, but they don’t know which one, perhaps adding this B1 would be magical. Thanks sincerely for your input. Debbie

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