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Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
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I’m about to figure it out hopefully with my team if this is what’s causing my pains. But specifically autoimmune polyneuropathy is the one my cardiovascular expert said I should be evaluated for with specialist rheumatologist and a neurologist. I’m concerned about this cuz my pain and symptoms overall have gotten worse. I’m unable to walk, have bumps, red spots and this has honestly been very traumatic for me as I was an active pedagogy professional 🙏🏻 blessings for healing ❤️🩹
Hi all, I have just joined the group and am looking forward to reading some of the info. A car hit me when I was crossing the street and put me in the hospital for a month. This was in 1999. It took me a year to get back on my feet. Neuropathy was present from the beginning. It continues to get worse and I get dizzy when I walk. Does anyone else have that problem ?? I now use a 4 wheel walker to get around. The doctor stopped my gabapentin because it didn't work. Anyone find anything to help the burning in the feet?? Hugs to all. Annie
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2 ReactionsGood evening @peggioh, thanks for responding. Let's see where we are in our sharing and where we may be able to go from here.
About those nightmares, are you being attacked or injured? Are you attacking someone yourself? Do they always start the same way? I haven't done any dream analysis in ages so I am not confident about the causes in the first place or the reasons that they exit. I was beaten by my husband at the time and ended up in the ER on several occasions. That may be why the nightmares took so long to leave me alone. Although I remember the issues, I have never had another dream.
So....let's uncover another option to consider and one I have been actively pursuing for 10 years. After being diagnosed with SFN, one of my nurse friends introduced me to Medical Cannabis. For example, I replaced the Nortriptyline with a tincture dosage composed of 2:1 CBD/THC. Taken about 45 minutes before bedtime, it helps me fall asleep and stay asleep until morning. No longer do my SFN symptoms keep me awake at night or wake me up early in the morning.
For daytime control of the numbness and pain, I use a 1:1 CBD/THC tincture. I also use either a 1:3 CBD/THC topical for acute discomfort on my hands, wrists, and sometimes feet or a 3:1 CBD/THC for the chronic daily situation with my hands in particular.
Have you tried any medical cannabis? Do you live where it is legally and readily available?
May you be free of suffering and the causes of suffering.
Chris
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5 ReactionsI see that the cbd gummies with thc are being advertised in a newspaper ad here at a small WI town. It also covers MN so we don't know if it is only legal in MN or here as well. My kids have all warned me it is NOT legal here, while my older relatives say it has to be if it is in the newspaper. I ran it by my kids again and they said "don't do it, mom". I told my older relative that I'd have to hear it from a lawenforcement officer before I'd believe it. I'd love to not need non-natural pain relievers anymore. LOL.. kids still shaking their heads "NO" at me when I point to the ad.
Hi Annie @annie88, Welcome to Connect. It must be difficult dealing with the pain and neuropathy since getting out of the hospital in 1999. Do the doctors think that being hit by the car damaged nerves in your neck and spine?
Has anyone woke in the night with tingling in your upper body including the heart area, arms, neck, and head?
When I have had stress in the daytime I have had this in the night. It has made me wake up. This is in addition to the usual
feet and legs tingling,
Dear Chris, thank you for the insights. The nightmares usually involve a deadly pursuit of ME, but then occasionally a gory fight back From me. But even the regular dreams are painfully intense ("vivid"), so much so I wonder how much rest I'm even getting while sleeping! (Such as can't find-your-car-in-parking-lot scenarios, (2 night in a row), relationship angst, etc.)
I've never tried medical cannabis, but yes, it's legal in Massachusetts, and maybe I'll ask my doctor to prescribe some. Peggy
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1 ReactionGabapentin helps me a bit but duloxitine gave me much more relief from the pain. I still have numbness. I just started using LifeFlo magnesium lotion on my legs and feet. It is soothing but again no relief from numbness. It’s only two days so I’m hoping it will kick in to help more. In the beginning I had burning in my feet. Now it’s just pain. I try to soak them often in Epsom salts which again has magnesium in it. An old fashioned helper for pain. Hoping you find something to help you ease your pain. God bless.
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2 ReactionsAlso I find I can’t walk well in certain shoes. Skechers and crocs give support in the right places and both help me.
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2 ReactionsI wish I could say yes. But nothing works.
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