Living with Neuropathy - Welcome to the group

Good evening, and thank you so much for adding an important chapter to your story. I also appreciated the Skin Biopsy report. And I do see that Colleen has explained about protecting your identity.

That report is 95% longer than what I received. It looks like they have been able to add more to the test results. Mine was never shown to me. I just saw the diagnosis on my portal.

You certainly had a progressive unveiling of your idiopathic SFN. There is another category mentioned and it is "traumatic". If you have had multiple injuries and/or surgeries then the cause may be listed as "Traumatic". I have had 14 orthopedic surgeries including 3 spinal. And then there were quite a number of accidents including 2 rear-end collisions which can be damaging. Add to that falling down mountains and off of horses and I understand my SFN causes.

You have been suffering for at least two years. My symptoms have been very similar. I have had the fire in my abdomen, the 5 a.m. muscle alarm in my leg, and then the burning. Is LDN helping relieve your discomfort? Do you use any topicals?

You mentioned sleeping and dreaming issues. There are some "sleep helpers" like Nortriptyline. Have you tried any of those? My experience with dreams was frightening because they related directly to trauma in my life. They did taper off after a couple of years. Just make sure you work with your clinician so there won't be a conflict with LDN.

When is your next visit with your doctor?

May you be safe, free, and protected from inner and outer harm.
Chris

Hi Chris, I can't tell if the LDN is helping, but things are still getting worse, numbness etc now crawling up my left leg to match the right; however, if I wasn't on it, would it be worse still? In other words, I don't have a "control group" of another me! I haven't tried that Nortriptyline; I've been trying every natural aid under the sun; melatonin, valerian, L-Theonine, homeopathic (joke) so every few days I splurge on just an over the counter one, Unison. From what I understand chemical sleep aids cause rebound effects; do you use the Nor. regularly? I don't typically use topicals, since my primary problem is dead numbness, and static electricity up and down the legs, not outright pain. I have a gabapentin prescription, but haven't taken it, since that isn't going to give me back my feeling, which is the most devastating and troublesome to me. . Thanks for input! PS(By the way, I could give a hoot about protecting my privacy- what's someone going to do, steal my illness?? Go ahead, welcome to it!) haha, but I understand forums are legallybound to privacy.

Ans pps, I'm happy to hear your nightmares ebbed off, because I've been nervous that mine never will, since most people say after a couple of weeks theirs stop, but mine have been 1 1/2 years.

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

Good 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

I 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