Does PN ever go away?

[Cry Tears]

I've been suffering PN for a number of years....It was much worse before I began taking the sublingual B12....but I'm not 100% cured yet.
Does it ever go completly away?
About 20 years ago, I began having very sensitive skin....like anything with a seam drove me insane. Rough clothing hurt, where material rubbed lightly on my arms it caused pain. Same with my thighs. Some times it was horrid and I'd have to walk around in extra large very lite cotton PJ's.
When I asked several doctors about this they just looked at me like I was crazy. How sad they didn't give me answers I deserved! Ubeleivable they were so stupid!
I was told by one doc that it was tied to my having Fibromyalgia.
Guess those were the good ole days before PN!
When my B12 was bottom barrel low, 232, my PN was in my face, my lips burned, my stomach skin burned, just about all over burned then. But now its gotten much better....Thank God!
What sort of pain meds are given for PN ....mine is bottom of feet the burns like I've walked barefoot on hot pavement in Texas in a heat wave high noon!
Shoulda gone to Syberia! Oh well!
Anyway...my questions.
What pain meds besides the Morontin types do they giv?
Does this ever go away?

[dahlek]

so many boards and ever so many posts...
Some folks will tell you that IF you follow THEIR 'regimen' YOU will be whole again...I liken it to 'faith-healing' preachers!
First off, those who do recover, in most cases, prefer to FORGET that it's all never happened. and don't continue to support those who are in their boat but at a later point in time. It's a reality, but true.
Secondly, the most important aspect of diagnosing many neuropathies is to keep it from progressing....to the motor functions and more important, the autonomic functions. So many neuropathies are combinations, permutations, variations of the three main impacts on the nerves: Sensory, Motor, and Autonomic, or involuntary.
Should your PN actually FIND a causeation, well, it's stated that removing the cause, will eventually eliminate the problem. Not always so. Or, if autoimmune, certain treatments can bring benefit, relief and eliminate the problem. Not always so. Other neuropathies may be genetic in cause and again therapies or treatments can bring benefit, relief or whatevers... Not always so. It IS a harsh reality. But, the more we learn or try to learn, the better we can learn to LIVE WITH it all, and all it entails....

You know that old singage of 'Xturkeys allowed'? Well IF you do lots of mind-imaging stuff, as sports champs do, it can help some....Overcoming pain on the levels PN'er's have it, IS in my book, something of OLYMPIC CALIBER! We can do lots/no heaps with how we 'set our minds' in terms of perceptions of pain and how to deal with it.

IF you've read the 'Mankowski Pain Scale' [web it up], it's clear that pain is a very personal concept. Descriptions vary, wether it be big toe, or whole body..It is really all relative to your life, what you do, how you live, and how you VIEW yourself with that pain in your life.

I also thought that you've been on some serious pain-killers....other than motrin? Am I wrong here? Did I miss a chapter during the BT down time?

Ultimately, does PN GO AWAY?- I've not really heard of it actually totally doing so. Some meds, and vitamins and enzymes do help, some, that is... Not all tho. Does a person's tolerance of pain/pains change? YES, HOW? each body is different-the subjective stuff comes in and makes it hard for docs to be truly 'analytic' and provide useful pain-scales or other indicators to those of us IN pain.

I don't think I've answered your question, maybe added some more dimensions to the initial question? I have to tell you tho, there are 'moment's' not long ones, tho-when I don't hurt...it kind of catches me off guard. When I become aware of that freedom, well, I plain old cherish it!
Hugs - j

[rose]

If you have nerve damage due to B12 deficiency, what you are dealing with it more than PN. Sometimes central nervous system damage can repair over several years. No guarantees, but it does happen.

rose

[darlindeb]

In the celiac forums you will sometimes find people who were diagnosed with PN saying that once they went gluten free, the PN reversed and they have no pain whatsoever. I wish I had been one of them, but I'm not. When I went gluten free, I do believe my PN slowed in progression, but it didn't reverse. Some gluten free celiacs will never absorb their vitamins and minerals properly again, some do, maybe that is the difference. There is much truth to the treshold of pain theory. I have a very high threshold to pain, until a migraine makes me sick to my stomach, I will continue to work, some people get a slight pain and won't go to work. It's all in how we feel it, I guess. I hurt everyday of my life, yet I go on because I know if I sit down, it will get worse for me. I read what some of you write and hurt so much for you and I thank God I am not at that point and I pray I never will be. We are a strong group of people, stronger than many healthy people, maybe not in strength, but in mind we are!

[Cry Tears]

I hope my PN is only from the B12 def....I do beleive this is the cause.
I"ve had a very long bout, 20+ years, of irritable bowels and Crohns disease.
Also small bowel resections in 2 sections.

I am a strong woman and have forged foward despite adversity.
My feeling is, even tho I'm in pain I can only have 2 choices: Stay in bed, or get up and get going.
NO matter what choices I make the pain is still there.
Better choice is get up and get going...that takes my mind off my pain.
I try to find way to self motivate....helping others has been a blessing to me.

But when it comes to the fatigue....nothing in the world can get me up.....its then a different story.
I try my best, but it just doesn't help. I get up, feel nausueous, weak and about to faint the fatigue is that bad.
Even a car ride is exausting.
I've had to cancel many wonderful functions, vacations and gatherings.

No one can understand this type of feeling unless they've been there, done that!
Hugs to my fellow sufferers. Cheryl

[joy]

Hi Cheryl

I know exactly what you mean! I get so tired sometimes that even if I'm shopping for groceries I will have to find a box or anything to sit down on. So if it is not the pain or the muscles cramping - it is the weakness, tired, can't get my butt up feeling!

I use to love to have people over to eat but that had to stop as I could not be sure I would be up to it. Then I'd say, I had a good day so if you've not eaten, come on over. And the house is always such a mess I'd be ashamed for company to come inside anyway, lol.

Now hubby is lucky if there is anything if frig or freezer to keep from starving. Myself, I could just eat yogurt, fruit, almonds, bananas and cereal. With the occcasional single dip of Andy's frozen yougrt. That is new in town and I have a weakness for the creamy vanilla cone. It was always easy for me to avoid the ice cream when hubby would eat it in front of me but now that I have tried the Andy's, well he has a hard time passing the place cause I always want to stop! Please, no one tell me how many calories it has in it. I keep telling myself I am ONLY glucose intolerant NOT diabetic.
I need some pleasure in life! And it only costs $1.49.

[davidx]

Crytears-

I sure hope the PN goes away! The paragraph you wrote about sensitive skin almost completely describes my sensitive skin. The only difference is the areas of the body that it effects. For me it is isolated to the legs and especially the knees.

I was diagnosed with lyme (and several other tick diseases) and am being treated. I also did methylcobalamin (vit b12) shots for about 6 months. My symptoms started about 1 year ago and have gotten slightly better but there is still a ways to go.

I have seen several doctors and they have told me certain medications could help such as neurontin, lyrica, anti-depressents, etc. Also, if you have particular areas that are sensitive I find that lidocaine patches do help at least a little. I have not tried any of the meds that I mentioned though.

Do you still have the sensitive skin today?

-David

[annelb]

I understand when you say your skin is very sensitive. My legs felt that way too.

I have had great relief from my PN with a gluten free diet. I tested positive to antiglidin antibodies through www.enterolab.com I doubt my feet will ever feel totally normal as they are still quite numb. Before I started on a gluten free diet I was limping, in constant pain and had to sleep with my feet dangling off the side of the bed so nothing touched them. My PN was progressing up my legs and arms, my face was becoming numb. Now the progressing tingling has regressed, I walk without limping and I sleep with my feet under the covers. What I find interesting is that I have had foot pain since I was about 20 (I am now 63). My son, who is in his 20's, told me that all his foot pain totally disappeared with the gluten free diet. Was this early PN? I think you have to catch this problem early for complete resolution. I hope my son never goes on to develop PN.

No, a gluten free diet will not help everyone with PN, but it is certainly worth considering. You do not have to have celiac disease(flattened villi) to be damaged by gluten. Dr. Hadjivassiliou has written much about the connection between PN and gluten and ataxia and gluten. He feels that gluten directly attacks the central and peripheral nervous system. It is not just an absorption problem. I have put his articles in one place. http://brain.hastypastry.net/forums/showthread.php?t=1700 and check the second post.
Anne

[jjano]

Hi all,
This response and the poster "Crytears", seems to make a unique fit for this post. Wife Nanc, had a stroke in 01, and since that time she has not been able to "CRY". How often have we all heard the saying,""If I could only have a good cry, I would feel so much better." Well, that option is a goner.

One other recent change with her body is the amount and level of pain from her peripheral neuropathy and spinal stenosis. Both sources have caused heavy pain. Along with the fact that the right side of her body is totally numb. Neurontin was tried but the sides were to much to deal with so Lyrica was tested. She was on it for about 7 months and I can say it did the job. Both pain sources were cut off at the pass. However,numbness remains. Yet, remarkable change. But, then the Lyrica sides began to move in and when she wound up in the hospital in October, she was taken off of Lyrica. It is almost 3 months since since the cessation of Lyrica and would you believe*** the severe pain has NOT returned from either source !!!!!!!!! Don't know how long that blessing will last, but we will take as many good days as we can find. So***PN can go away, but for how long is the mystery.

Oh, the mystery of the individual body, with no two alike and a surprise around every corner. Some good and some bad. Please, just send the positive ones our way!!!!!!!

Jim