Well it's about 12 Months since I updated this thread.
No further progression with my PN since then, which is good I suppose.
I am still only taking Jarrow's Methyl B-12.
I realize my symptoms are relatively minor compared to a lot of you guys, but I'm certain staying active is helping me a lot.
I have cut down on my bike riding as the vibration wasn't helping my hands.
The carpel tunnel was being stimulated.
With the Winter coming on I have bought a "Total Gym" as recommended by Chuck Norris. This can be set up to do a variety of exercises at various levels & I use it every morning.
Also I am forcing myself to take a decent walk at least once a week.
I'm not talking about just round the block either.
There is a reasonable size hill not far away which I go to the top of.
Initially I had to force myself to do this & my feet felt terrible. Like having socks full of greasy sand. Also I was tending to stumble as my right ankle was loosing its strength. Then when I got hot my hands felt like they were inflated.
I have been experimenting with meditation & find I can now almost ignore the feet discomfort while walking.
Unfortunately I am not having the same success with my hands. If I keep them up by tucking the thumbs through my pack straps it helps a bit.
Both my little fingers are now doing their own thing. They are almost totally numb & getting very weak. They tend to stick out from the others & get in the way.
I am doing strengthening exercises on them to try & help them, but seem to be loosing the battle. It can be interesting putting gloves on.
So I just thought I would share this with you guys & if there is anyone else who is at a same or similar stage of PN, I would like to hear from you.

YOu sound like me as far as the burning and the sitting can drive me up the wall later in the day but sometimes if too long anytime of the day. So I stay moving during day as much as I can. So now you see less of it with your supplements etc? Which do you think helped the burn the most?

most recent posts on PN
 

Where Can I find the most recent psts on PN?

Ritt

This link is to the main page of PN forum. The subforum is at the very top.

http://neurotalk.psychcentral.com/forum20.html

I also have idiopathic PN in both my legs from the knee down. I have had this condition for about 6 yrs. Dr. had me on gabapantin for several years, but I never felt relief. About a yr. and 1/2 ago he put me on Lyrice. I take 50mg. 3 xs a day , and I can honestly say I am at least 70% better. It is definitely worth a try.

Gosh, looks like it's about 12 months since my last post.
I've been busy at work but have recently sold the business, so have more spare time now.
So here is an update.
I've kept up with the exercise's & have retained the muscle tone in my ankles & wrists.
I have willed myself to ignore the discomfort in my feet, but my palms & fingers are my biggest problem now. Super sensitive in some areas & almost numb in others.
My little fingers have a mind of their own, which can be interesting when typing.
If they get any worse I might have to tape them to the next fingers to keep them under control.
Fortunately I don't have pain anywhere. Occasionally I get cramp in the lower legs, so have been taking Magnesium capsules. Seems to be helping.
Only other thing I am taking is the B12. Last test results showed levels at 1393.

Nobody is underqualified!!
 

Hi: I feel your pain (literally). My PN is also idiopathic, however, I am in the states so have some options. I agree, in general, though, that general neurologists just don't know enough about it to do anything helpful. That being said, mine did start me on Cymbalta which helped my feet a great deal. Now, two years later, my arms are starting to be affected. I am having another EMG on my arms done soon. I am seriously considering going to Mayo Clinic (a bigger hospital with more specialities, tools, etc) to get everything ruled out. I think, sometimes, we may have more than one disease or problem going on and it is often missed. Good luck!! And, I hope you, like I am, are glad for sites that feature folks with similar problems!! amy

Suffering 6 years of burning in my. Body.
 

I have idiopathic neuropathy. I have been to the Mayo Clinic and they had no suggestions for me. It starts with a funny feeling in my palate. Like a pizza burn. Then my entire torso gets squeezed and feels like it's burning. Then my vaginal. Area starts pinching. Nothing helps except taking an Ambian and clonozepam and going to sleep. When I wake up it is gone. I have tried lyrics, cymbalta, and all the narcotics. I'm now on 600 gabapentin. Can't tolerate more. Marijuana doesn't do much either.

Update.
Two years since my last post.
Now 61.
My hands have got a lot worse.
Now getting pain, worse when the barometer is low.
Unable to work, so no income.
Fortunately my wife works part time.
I do all the meals.
Recently bought a cake mixer & have been getting into baking.
Just surprising what you can still do if you are able to take your time.

I'm still keeping up with the exercise.

Have been seeing a different Neurologist who appears to be taking a bit more interest in my problem.
Some recent tests including a lip biopsy have produced a positive for Sjogren's.
I was surprised at this, as I didn't have the common symptoms, ie dry mouth & eyes.
But have been told this is not always the case.
This was only yesterday, so my Neurologist has yet to decide weather to proscribe any meds.

Have you been to a hand specialist?

There are various disorders of the tendons and fascia of the hand.
A hand specialist may be able to help you more in this regard.

Thanks your reply.

No, havent seen a hand specialist.

The neuropathy in my hands is part of the ongoing which started in my feet.
My previous posts in this thread explain my journey to this point.

Earl
 

Do yourself a big favor and order "The Re Builder on line" My wife couldn't live without her lyrica three times a day. Now, she can't live without her ReBuilder. Her numbness, tingling, pain is just about gone. Get two storage containers, one for each foot. Add electrolyte solution and that's it. Get the pads. You can treat your hands also. Read up on it. It works.

Earlyboy is referring to an EMS TENS device.

I considered getting one of those.
My neurologist told me I would be wasting my money.
I did some research into it anyway.
Results were mixed, depending on what was causing the Neuropathy.
I would have gone ahead & got one if there had been any positive results from someone with the same problem as I have.
I also got the feeling a lot of the positive feedback was from people with a financial interest in the device.

earlyboy, could I ask the nature or cause of you wifes Neuropathy?

Ok so here we are five years further on and another update to my thread.
My symptoms had been fairly constant during that time with the main increase being in my hands.
I am still keeping reasonably fit with walks & bike riding.
However a new issue is developing and I'm a bit concerned where it may lead to.
A couple of weeks ago I noticed a tender spot halfway down my spine. Felt like an area was protruding out & was sore to lean against or lie on. After another week I noticed pain across my lower back, hips, sholders & neck. Thinking I may have caused it through over exertion, I did the usual exercises but it didn’t help.
The pain got bad enough to need pain killers just to get up & dressed in the mornings.
Was ok in bed for a while, just turning over was a mision.
But last night I had to take a pain killer just to get through.
I am only using Paracetamol atm which seems to do the trick.
One every four hrs allows me to do my normal things with managable pain.
I guess I should consult my GP re this but with the covid 19 thing & the lockdown, not all that easy.

Well, no comment from you in 5 yrs...that's pretty good. Who knows what is going on. As we age and continue to be active, we end up with more wear and tear. I have that is for sure.. You don't mention your age Numbfoot.

It sounds as if this pain is gradually getting worse. I hope you can get to a doctor before long. If you wear a mask and maybe protective gloves and maintain your social distance, you should be able to do that--though some doctors may not be seeing patients just now unless it's an emergency.

In the meantime, why not go easy on the exercise?

I've had quite a few problems with back pain requiring physical therapy. One thing I was always told was to stop doing the exercise if there was pain.

Hi Numbfoot,

It sounds to me like you have a back/sport injury of some kind causing bruising of the spine, perhaps a minor herniation of a disc. The best way to treat this is with ice packs 20 minutes at a time. You can buy flat reusable ice/ heat packs on line. Lie on them. You will find instant relief though you may experience weird sensations throughout your body. Its your spine, a nerve centre. Its very easy to re injure the same place so be careful. Heat packs after 72 hours pain free encourages healing.

I suppose the reason you have posted here after many years of inactivity is that you are worried this is a further development of PN. As I say its the spine you may experience nerve like pain that trumps the pains of PN many times over.

You owe it to yourself to get this checked medically. You need to have the cause of the pain diagnosed. Without that you will not have peace of mind. I don't know what restrictions are like in NZ, but I think you'll find its easier to access a GP than you think. GP attendance in UK is low because surgeries are perceived as dangerous places. Aren't restrictions being lifted there? Even if you visit a physio, you need to do something for your own peace of mind.

By the way can't you let us win at rugby just once in my lifetime?

Proud Welshman.

Maybe I'm way off base BUT I've never been to a doctor for tests and more tests and then what, they push their drugs. It's a vicious cycle. We should know what caused the PN, can be so many issues and for me it was a messed up hip replacement 10 yrs ago. No nerve damage before that.

So much can cause this issue, and medications are a big one.

There is so much good support in the PN group here and I've talked about what helped me a lot:

Inosine
Grape Seed Extract
Topricin for Pain (homeopathic lotion)

You won't get the above info from the doctors.

A friend suffered with IN for years and finally realized it was from Statins. The doctor didn't know that????Please.....

Thank you all for the replies.
Here in NZ we get the official anouncement tomorrow, as to whether we go back to level 2 this coming Thursday. That will open up the hairdressers, physios, doctors etc
I do have a couple of damaged areas in my spine from years of abuse as a builder.
They have caused me agro in the past but nothing like this.
I will try to get a visit with my GP asap.

I was able to see my GP Last week, got some bloods taken. & a back xray is organised for tomorrow.