There are quite a few churches with camps here. Most are tucked away in a valley surrounded by mountains. Timothy Leary had a compound here. There is a Ronald MacDonald camp for kids with cancer where my granddaughter taught horsemanship. Also the states largest Boy Scout camp and a separate one for the girls. Maybe soon they will join hands.

I take 1200 mg of Gabapentin and 50 mg of tramadol 3times a day for PN and they help but sometimes nothing helps near the end of 6to7 hours.

I’ve backed off Gabapentin from 600 mg 3/day to 300 mg 2/day after almost a year when I realized that I could deal with the pain but not the numbness in both legs and up into the groin and finding that Gabapentin did nothing for the numbness. I’m researching the possibility of having hand controls installed in my car as driving with the numbness is a dangerous nightmare. Has anyone had experience with hand controls?

Not to be alarmist, but I have had two things happen with Gabapentin. First, when my father was seeing a neuro doc for his cognitive impairment, she told him to stop taking Gab. immediately as it causes brain fog and impairs short-term memory. I was taking 4000 mg/day and weaned myself off it. I could never tell that it really helped with my pain (pancreatic), but my pain management Dr. said it would allow my opioids to be more effective, but I have noticed no difference w/out it in regards to my pain medication. I have, however, been more alert and my memory is not as fuzzy from day-to-day. This may just be the effect it had on me and my dosage was extremely high.

Been researching hand controls for 6 months, and here in Florida it’s quite a process. You have to be evaluated by a professional licenses evaluator, who then gives you a prescribed if approved. The hand controls can be installed either as temporary or permanent, but most mechanics prefer the permanent ones (which cost a bit more.) After installation you are required to take a test from DMV. I have not begun it yet, but like you my legs are dangerously numb and hand controls will be necessary to retain independence. I don’t know what the procedure is in your state…I really don’t want to sound negative or discouraging, but there are quite a few requirements in Florida. Good luck. I admire your tenacity.

First I called Kempf which seems to be the top of the line for hand controls, but when I was told that cost is usually between $9,000 and $11,000, I realized that I’d have to explore less expensive (WAY less expensive!) options. A call to United Access here in Missouri revealed a process similar to Florida’s: 1. Letter from a doctor (I said I’d wait until I saw a neurologist in St. Louis because I expect/hope that he will be more knowledgeable about small fiber polyneuropathy than most neurologists.) 2. Referral for a “Driving Evaluation” at one of the local hospital systems. No mention of a DMV test, but I suspect that’s part of the process. I asked about any insurance coverage, but he couldn’t give me anything. I’ll stay in touch with you, keeptrying, and share any further information.

@steeldove, @keeptrying, @annmayo79 — losing the ability to drive was the alarming thing for me when I started researching where my PN was going. It had gotten to just below both knees when I finally stopped ignoring it and got tested to get my diagnosis – idiopathic small fiber peripheral neuopathy. That was in March of 2016. I’m fortunate because my PN is only numbness. I’ve never had any associated pain with the PN. The discussion I had with my Mayo neurologist sent me to doing my own research. He basically told me there are no oils, creams or topicals that will make the numbness go away.

I am not a doctor, have no medical training or experience so the only thing I can tell you is my own personal experience. I found and started taking some over the counter vitamins and supplements that have helped with the numbness. I started taking the protocol of supplements and vitamins last Sept 2016 and by Dec 2016 the numbness was just above the ankles instead of just below the knees. Not much but enough to let me know it was helping and it had stopped the PN from getting any worse. There are a lot of scams out there so you really need to do you own research. If you want to more information on what has worked for me, here is a link where I shared my story with all the links and associated information.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
I would not wish PN on anyone and if yours is idiopathic, well, in the words of an 80+ year old neurologist from the University of Minnesota that I heard at the Minnesota Neuropathy Associations 20 year celebration meeting in Sept 2016 — the term idiopathic when referring to PN is named after an idiot neurologist who diagnosed it. He was my favorite speaker of the meeting. One other tidbit of information he left us with — if you live long enough, everyone gets neuropathy – nerves die. Love his humor and his research studies that he’s still working on. Interesting read if you like research — here’s the link to his lab and research project list:
http://kennedylab.med.umn.edu/project-list
John

Not wanting to be an alarmist either. Gabapentin turned me into a ferocious she dog without a conscience. Had not a clue what had happened to me. I deal with the neuropathy. Meds and I do not mix well.

Yup…mess with the mind they do.

@johnbishop Do we still have minds? Grin…

I’m not ready or willing to give up on my mind.

I tried every medication available for neuropathy, and many others that have been helpful to some. None of them helped with the pain except Lyrica, and I ended up in the hospital because of bad reactions to it. Bummer! But since I had a spinal cord stimulator implant in June, I’m going to go back and try the meds again. I’m hoping that I’ll find one that works for me a second time around. I’m not sure if the neurologist is the one to work with, or the pain specialist. I liked the way the pain specialist went out of his way to figure out how to treat my pain. I have an appointment with the neurologist on the 14th, so I guess I’ll start with him. Wish me luck.

Jim

HI Jim. I live in Australia and the first symptoms of peripheral neuropathy I had were probably 15 years ago but very minor and not diagnosed until 3 or 4 years ago. The neurologist claims that I got it from diabetes which I didn’t have until 4 years ago. Go figure! My GP put me on Lyrica which I was on for perhaps 4 or 5 months. In the meantime my wife searched the internet for remedies and found http://www.realhealthproducts.com who do a “Nerve Support Formula” which has Vitamin D, B1, B2, B6 & B12 in it. I ordered some and they contacted me asking what medicines I took. They got right back to me when they saw I was taking Lyrica and told me to look at the side effects on drugs.com. I did and was amazed to see that some things that had recently been affecting me were due to Lyrica. I can’t remember them all but included blurred vision, large bags under my eyes and weight gain. It is also suspected of possibly causing the symptoms of Peripheral Neuropathy!! I went to see my GP and told her of these Nerve Capsules and side effects of Lyrica that I was having. She gave me her blessing to try the nerve capsules but to wean myself off the Lyrica. I did that and blow me down if the capsules gave me just as much relief as the Lyrica. I kept increasing the dosage which helped even more but got to the stage where it was costing me $170.00 Australian a month which we really could not afford. so back to my GP and she put me on Endep (Amitriptyline) 25mg and that was as good as the large dosage of the Nerve Capsules and less than $10.00 per month. It was increased to 50mg tablets 12 months ago. I take it at night because it can affect your driving.

@stuartg Do you have any side effects with Amitripyline? Here in the states Endep is an antipsychotic. Could you have meant Elavil? Any of the triptylines affect more than my driving…we are not all wired the same.

Lyrica was horrid!!! I would rather deal with the Neuropathy than turn into someone I don’t even recognize.

Hope you can find some help. Since you live in Aus. did you ever have Lyme Disease that you know about? I had Lyme in 1983 and when one thing flares it rebounds as well. Just wondering. Causes extreme nerve pain.

HI @parus. No I haven’t had any side effects at all. The only thing was being very careful not to drive after taking it. It actually did me a favour by helping me sleep. Until a couple of months ago I did long distance coach driving for three years. On average once a week I did an overnight trip of about 950kms starting at 4.30pm and getting to the destination about 6.00am the next day and back home the following night. Obviously I had to sleep during the day before and after those trips. By taking Endep before going to bed it helped me sleep for much longer during the day and consequently getting less weary driving all night.

It definitely is Endep that I take. From memory my GP said it was an antidepressant that settles your nerves.

I haven’t had Lyme Disease. In fact I have been tested for it by my eye specialist several times over the last 15 years when I have had unknown viruses give my optic nerves trouble.

@stuartg As long as it helps you sleep and you are not experiencing side effects this is a good thing. Many medications are prescribed for more than one thing. Lack of sleep can do quirky things as well.