Hello All,

Please be patient - I'm little nervous, kinda scared.

I have had advancing PN for 4 years now. (I am 56yrs). Started with small tingling in feet, advanced to feeling like I'm wearing socks, to where I am now, which is lots of tingle in feet and burn on bottom. One of my many Docs believes it comes from my back, as when I do work that involves bending, crouching down, or what is causing my most resent flareup, running a grinder for two days in my garage which vibrated my whole body, I get bad Tingle/burning. He put me on Neurontin 300mg a day.

One important thing to add - for over 25yrs I was grossly overweight, over 400 pds. When I was 44yrs I went on lowCarb diet and lost 180 pds in 16 months. I started running/working out - life was good. But then the PN started about 4 years ago. My blood sugar has always been normal, even when overweight. My A1c's have been 4.9 -5.2 since I lost the weight.

I am wondering if the years of being so overweight have taken their toll on my bones/muscles/nerves, and now I am paying the price for being so overweight. My Family Doc tells me I have already done the best I can do to help myself, which is lose the weight and keep it off. But along with everything else, I suffer from acute Panic attacks/anxiety, for which I am on medication.

I guess what I would like to know is -- What I really need to hear from folks is -- do most of you lead a "normal " life with this?? I mean, as much as possible, are you able to go on vacations, and work, or have a life? Sometimes the fear washes over me like waves crashing a boat, and I feel like my life has surrendered itself.

Please tell me that, even though a challenge, life can still be lived with this.

I am sorry for such a confusing posting. I am not at my best right now.

God bless you all.

Thanks.

Welcome to NeuroTalk.

People who lose lots of weight may become very low in essential fatty acids. This was at one time called "slimmer's paralysis".
These fats, make up the cell walls of all our cells and especially the nerves and the fatty sheaths of the axons.

Fish oil, flax oil and evening primrose may help you repair things.

I'd do 2 fish oil, one flax, and one evening primrose, with food daily. You can break them up any way you want to take at meals.

Next is a good B-complex like B-right by Jarrow. The B's are helpful for the metabolism of the good EFAs.

And next is magnesium. This is also a cofactor in the metabolism of the EFAs. You can do the new lotion for your legs and feet if you want (Morton Epsom Lotion)... at WalMart or online at Amazon. Orally SlowMag or one of the chelates (but not oxide).

I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

B12 is in the B-Right, but taking separately may help faster.
Methylcobalamin 5mg on an empty stomach...daily.

You should see improvements within 3 months. It takes time to repair.

Vibrating tools are really bad for nerves, especially those with problems.

I am not certain what you are asking, but I will do the best that I can. I have had this all of my life, but the typical neuropathy symptoms set in in my 30's. From numb toes to numb feet it has progressed until most of the symptoms are at thigh and hip level. My hands and arms are also involved, with numbness and tingling that wakes me at night, and weakness. I walk with a cane. I am 52.

The main thing is to eliminate all treatable causes, if it is related to your back issues can it be treated? If you have exhausted those avenues the next step is to get your pain under control. You will find a lot of advice here, from lifestyle modifications to supplements to medications.

Once your pain is controlled it is possible to have a very"normal" life. I keep house for 5-7 people, cook, do laundry. I have a cleaning woman for heavy jobs and we moved the washer and dryer up from the basement. Stairs are tough and I save them for going up to bed. We leveled the floors so that I don't trip at doorways.

Vacations are different. I have learned that anything that requires stopping and starting- museums, theme parks, airports, is better done with a wheelchair. I can get up and walk when I have to, but it is very important to conserve energy. It is also, paradoxically, important to exercise as tolerated. Some of us notice a definite lessening of the pain in the feet when we are walking.

The phenomena that you describe of the vibrations setting off a flare is another common experience. Riding in a car does that to me.

It does get easier, even if it gets worse. You can come to an uneasy truce with your symptoms and learn to manage them. Knowledge is power. Become as expert as you can, both about your own condition and and about the ways to treat it. Find a doctor who will work with you to maintain the best possible quality of life.

I woke up this morning feeling good. My medication is working well, I wasn't sore from yesterday's physical therapy, and the elephant that has been sitting on my chest all week seems to have lost weight. I was looking forward to playing with the dog, with a base pain level that would have kept me in bed all day ten years ago. We really can cope with an enormous amount of stress if we have to.

Keeping asking questions. People on this forum are really helpful!

Hi keweenaw, welcome.

Many of the folks here are:

1. New to PN and scared spitless; many come & go; some stay
2. Have multiple health issues—some worse than PN—some with more difficult types of PN (there are over 100)
3. In dire straights—on the "severe" side of the bell curve

So I don't know if it's accurate or fair to say that folks here lead a normal life with this, HOWEVER, I think for many—even some here—their PN is more of an inconvenience/nuisance. At the risk of it is what it is.

That said, it is certainly possible and eminently doable to live a reasonably normal life with PN. To maximize your chances, I think it's important to

1. Learn as much as you can about your health conditions
2. Keep a positive attitude & sense of humor—even about this
3. Avoid triggers—foods/activities/etc. that exacerbate your symptoms or cause flares
4. Take general care of yourself (which it sounds like you're doing)
5. Maybe take a few supplements

The items I've mentioned are those that have helped me cope with & control this thing, and (despite a few other health issues I'm dealing with) live as good/normal a life as I can.

There's a lot to be learned on this site, and a lot of experience & wisdom available for the asking (and very often asking is not required )

Doc

God bless those who have responded. All good words of guidance and advice -- I am so grateful. I understand Dr. Smith's words that some of the new folks are "Scared-spitless", believe me, that includes me. And I have read other posts here-- there is a lot of good information. I plan to hang around this "Neighborhood".
What makes it more scary is, not only don't I know what is going on, the Doctors themselves Don't really know.
The greatest source of hope for me comes from what I have read from others on this forum -the simple truth that, yes, I have it, and yes, it is a problem, but life goes on, you adapt as best you can, and keep moving forward. Don't stop trying to go to work, be with family, go on vacation, go to Church, exercise,...Hearing that others still can, gives me hope that my life is salvageable.

God Bless You All,
Keweenaw

I have some question about this being related to your weight loss, as there appears (if my math is correct) to be a 6 year gap between losing the weight and onset of PN symptoms.

Is one side worse than the other? Has there been any imaging (x-ray, MRI, etc) to support the theory that it's related to your back? Back related problems usually affect one side more than the other, but it's not unheard of to affect both sides equally.

Do you know what your A1c's were before losing the weight?
What kind of work have you done?

Has any other testing been done (B12, D)?

The supplements I'd suggest (depending on testing, and because they're pretty much what I'm taking, and seem to be working for me) would be:

Balanced B (within reason-watch out for too much B6)
Benfotiamine 100 mg/day
B12 (methylcobalamin) 1000-5000 mcg/day; empty stomach
D3 5000 IU/day
C 500-1000 mg/day

R-Lipoic Acid (stabilized) 100 mg/day
B5 250-500 mg/day (these two work together; if RLA doesn't work, B5 may not)

These last two, if they work for you, may get you off the gabapentin (that would be my hope anyway)

I don't disagree with other suggestions. There's wisdom in trying one thing at a time to figure out if something works or not. OTOH, I know how it feels to want to stop/reverse this thing as quickly as possible, and some things aren't a bad idea to take anyway (within reason) if they support healthy nerves. My philosophy on this is If it can't hurt to try it, then it can't hurt to try it.

We have a lot in common— ~age±, age of onset, normal a1c, progression & timeline of symptoms... Feel free to send me a PM.

Doc

Dr Smith,
Thank you for your kind response. You are correct -- there were a number of years between the weight loss and the PN. I do indeed have it in both feet. Back in the 80's I was hospitalized and put in traction because of bulging disks in my back -horrible pain. Have had Sciatica and leg pain whole life. It was about 8 years ago I took a tumble and bumped my head, and at the hospital they took an x-ray of my back just to make sure I didn't damage anything. The Doc who read my x-ray was amazed I was not having back trouble, because he said there were quite a few "hooks" and spurs growing out.
Been lucky most of my life to work in an office type setting, so did not have a job that stressed my back. I now have a part time job working in a museum as a guide.
About the "B" supplements. I asked my Doc at my January bloodwork visit and he said my "B level was fine" -- But I think I will push the matter with him a bit this coming week. Either way, I started today taking a B Complex. I will take all info with me and talk it over with my Doc later this week. I think there will be more tests in my immediate future.
But most of all, thank you so much for your input and interest. Fighting this is one thing, and to do it with Panic/Anxiety attacks just puts everything over the top. But the kindness I have found here gives me strength, and even optimism, to go forward.
Once again, Thank you, and God Bless,
Keweenaw

The labs in US still use the outdated B12 ranges which go down
to 200 or so, and that is low enough to have neuro symptoms.

The new approved clinical low is 400pg/ml...so get your exact results of the testing to see where you really are.

This is our B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

No.

No I do not feel I live a normal life. Most of my thoughts center around my PN in one way or another, from every bite I eat to what shoes to wear to what items to carry in my purse for flares. BUT, it is MY life now and I make the best of it, as it could be worse.

So, this is my normal. now.

You will find a way to make this new way of life, your normal.

Hi and welcome to Neurotalk!

I can relate to the wave of fear that you speak of but then I remind myself that whatever the progression of my SFN is I am doing whatever I can to help my situation.

I am a nurse and did have to stop working last November. However, I had a job that was very busy and I was on my feet all day. I did love my job and it was extremely hard to give up. I've had SFN for 6 1/2 years so I was able to work for 5 years with it. Please remember I am only 1 example. There are others here that are able to work.

I try to do as much as I can everyday. I enjoy vacation at a slower pace. Being at a slower pace is not always the worse thing that can happen to a person. You get use to it. I lived my life running around. Often I think god gave me SFN to slow me down. I pay more attention to my husband and family. I was headed for divorce before this happened. I was shocked by how good my husband can be.

Trust me I wish I didn't have this but you learn (or at least I have) to look for the blessings and live your life as it is. I've was blessed with two beautiful grandchildren after I became sick. Not working now I have the time for them.

I guess what I'm trying to say is most of us here try to make lemons from lemonade. This site is how I learned to do that. Keep coming around there are great people, and information here.