Hi,
I wish my peripheral neuropathy was idiopathic. Yeah, I know, I shouldn't be wishing this but I do because everybody who posts here has this type of PN & mine is a result of diabetes. I was diagnosed with type 2 diabetes in 2003. And, yes, just like many others I didn't watch my diet after that & so, in this regard I'm at fault for getting PN. But, in my defense, I had only been a diabetic for 8 years when I 1st developed symptoms (that would have been some time in 2011) & now I know that most diabetics don't have problems with PN until way after 10 or more years of having diabetes. Some may not have problems with PN until 20 or more years following diagnosis. It seems, no, it is HORRIBLY, UNFAIR!! I want to scream that again!!! IT IS JUST SO HORRIBLY, HORRIBLY, JUST TERRIBLY SO DAMM UNFAIR!!! And, you know what, in the years since the 1st symptoms appeared I know with absolute certainty that neither God nor this universe cares how much physical & emotional pain, PAIN, PAIN, I've been going through especially since Jan 2014.

I worked as a registered nurse for many years but my nursing education never never prepared me for how devasting PN could be. Today's medical literature hardly mentions it.

After a 6th month course of METANX (a pill containing Vit B12, B6 & something else), my podiatrist took a skin biopsy. When the biopsy report came back I listened so VERY calmly as he gave me the results saying the report indicated that I 'had no micro activity at all!'. I wasn't alarmed then but in time I would be. A more precise definition for my biopsy results was Small Fiber Neuropathy.

By Oct's end my PN had become really bad & I saw a neurologist for the 1st time. He prescribed Lyrica It was less effective than I hoped but worse yet I became actively suicidal within 3 weeks of starting it. This effect lingured for close to 5 solid months! While this happening the pain in my feet get worse and worse. Even though I've struggled with severe depression before, I've never know such bleak black despair. Which brings me to why I wish I wish my neuropathy was idiopathic.

It was an accident that I found the Neuro Talk website. I'd often searched the web or Google when the pain in my feet prevented me from sleeping during those cold dark nighttime hours this past winter. The painful sensations in my feet so bad that I felt I was being tortured. First I was the deathly coolness which had started in the summer months thru to the present, then the throbbing starting in my arches followed by 'Charlie horse' like cramps on each side of each foot at the same time. These cramps would wake me abruptly night after night and most after less than 3-4 hours sleep. Other pains would routinely prevent or interrupt my sleep. By March 2015 I was extremely sleep deprived. so much so that I marveled I could put a sentence together. I was lonely, panicky, way beyond feeling depressed, actively suicidal, angry & constantly feeling overwhelming helpless. I didn't want to take my life I just wanted the torture to end. I bargained with God, I pleaded, I examined every my life & catalogued every sin, begged for forgiveness & God never answered. Even if he wouldn't take the pain away couldn't he just answer. Just a small, little answer.? A sign?

Maybe finding Neuro Talk was his way of answering? Maybe not but I I was hopeful that I might find 1 or a couple kindred souls. So, I browsed a lot, introduced myself. After that each new day I've browsed & read but nowhere have I read about someone like me. Someone with a know cause of PN.

Yes I know that there's a forum for chronic pain & I get very distressed & down when I read it. I also have read the PN forum & when I do I learn that people there have painful symptoms too. I just know deep down that people who are still searching for the cause of their PN have the possibility of a cure in their future. I don't. I know that because I've seen other doctors since having that skin biopsy done who learn the results of it as well as my diabetes diagnosis & I can instinctly hear the steel doors slamming tightly shut in their minds as they quickly assess me. They won't entertain the barest possibilty of another cause for my PN & their highly educated but biased minds deny me hope. In their eyes my future is a done deal. I'm only a mere '64'. So many more years to go. But without hope I feel so deeply, unbearably discouraged. So, yes I do wish my PN was labeled idiopathic. They won't offer me a bit of hope.Maybe then, I could hope for a little 'more' of a future. Possibility my body could be healthy again. I could depend on it's & know life as I once knew it. I'm now 64 & probably more years still to live. If that could happen then I have to say that God had answered me after all.

Thanks for listening (I can't find any icon to express my feelings right now).

My heart goes out to you. But there is little that I or anyone else can say.

There must surely be others who know or are pretty sure that they know the cause of their PN. But does that really help.

Those that have no cause, have perhaps a hope that it will get better. But the pain of that hope dangling just outside your reach, is different but surely just as cruel as the knowledge that it won't improve. At least you have certainty. Not much of a positive, but something.

I wish that there was more that I could say or do.

Was your glucose levels controlled while you had the PN?
Diabetic neuropathy usually starts as the symptoms you described, burning pain in the extremeities, numbness usually proceeds, if the diabetes in uncontrolled.

Hi Maryoochi,
Don't be sad - we won't be mad at you - this is the place to come for support and to vent. You may not have found the info you've been looking for yet but keep posting and someone may turn up - even just someone like me who doesn't have diabetes (but is a potential candidate) which is why I bookmarked some of the research I've come across about diabetes. (and I hate trying to find things again later on the internet when I can only remember a fraction of what they're about!)

Re your post about: "I had only been a diabetic for 8 years when I 1st developed symptoms (that would have been some time in 2011) & now I know that most diabetics don't have problems with PN until way after 10 or more years of having diabetes."

I recently came across an article about there being a group of 'pre-clinical diabetes' people who have PN long before they show any clinical diabetes symptoms so PN may be a warning sign for some - in your case you could consider your PN as having arrived later than some. Not that I mean to diminish the agony of your PN - I walk in your shoes - have PN symptoms but no definite diagnosis - probably autoimmune caused by Addison's Disease.

Anyway here's a few of links that might be useful. If nothing else the woman in the video in the third link is so peppy she might at least make you think more positively. If I come across any more links I'll post here.

http://www.phlaunt.com/diabetes/14046782.php

http://www.phlaunt.com/diabetes/16422495.php

https://www.youtube.com/watch?v=da1vvigy5tQ


Take care and please let us know how you're doing.

cheers bluesfan

Just to add this link to a thread currently going on here which may interest you.

http://neurotalk.psychcentral.com/thread220419.html

There are a number of people here who have diabetes induced PN, it is the leading known cause of neuropathy after all. Sometimes members do not read the introductions on the main page, many of us, myself included, only read this forum most of the time so you will get more responses now.
Others here have neuropathy induced by chemotherapy, toxins, medications, injuries to the CNS, and heredity. Mine falls in the last category, I have Charcot Marie Tooth disease, CMT, a hereditary sensory motor neuropathy. I have severe pain and am slowly losing the ability to walk. My hands and arms are affected as well.
If your doctor meant that you have NO small nerve fibers left in your feet and lower legs that puts you in a small group of us with severe pain and increasing disability. It is a rough diagnosis and they can't do anything but pain management. At least with a diabetic cause you may see some improvement with very tight glucose control as a number of members here have. You may be able to keep it from getting worse.
The idiopathic folk do not always get much attention from their doctors either. They have to push for every bit of testing beyond the basics and often are left frustrated. We don't have many success stories here, but there are a few.
Welcome to the forums! Again, not everyone reads the general neurotalk pages so please don't feel that you are alone!

--we certainly do have people here who have neuropathy due to diabetes,or due to impaired glucose tolerance; the idea that one has to have had long term frank diabetes to develop neuropathy is simply not correct, and looking up posts under my name will bring you to a lot of medical literature documenting neuropathy before frank diabetes.

Be that as it may, though, there are still things you can do to possibly help besides strict glycemic control. The neuropathy in diabetes is thought to be primarily an ischemic phenomenon, with the circulatory problems common to impaired glucose tolerance causing more damage than nerve reactance to glucose levels outright. High glucose levels damage the small blood vessels which then cannot get oxygen/nutrients to the nerves or transport away metabolic wastes, and so the nerves are starved/poisoned, with the most distal nerves and smaller nerves generally damaged first. Therefore, anything that helps to promote circulation, from exercise (to tolerance) to fish oils is probably helpful (and can't hurt).

And, all diabetics should try a (supervised) round of lipoic acid -- the R-isomer preferably--for neuropathy, as well as ensuring that mineral levels, especially for magnesium and potassium, are maintained.

Admittedly, much of the treatment is likely to concentrate on symptom management. Still, there are diabetics whose neuropathy has improved, if not disappeared, with aggressive efforts. Don't feel as if there is nothing that can be tried.

Hi Maryoochi, sorry you are in torment. Many here deal with that. Your DPN diabetic periferal neurapathy is one of about a hundred or so varieties. Some things span all types. Sense of loss for instance, some posts dedicated to this subject only. Pain driving people to depression. Sleep being essential for healing. Anger-oh boy-Anger. Plus if you are prone to depression already you need to pick up some tools to help you deal with what is happening to you. The magnates here have not climbed the mountain and whipped the big bear, but they wade in every day head down and swinging. That is the help that can carry you to a different situation. Things will not always be the way they are right now. Symptoms change, move, go away, come back. Your tolerance will change also over time. Searching for difinitive diagnosis and matching symptoms in others brings comfort and a sense of accomplishment, and I am not belittling that process, but I have never heard anyone shouting about finding a cure for this brand of PN or that. IMHO I am glad that I know that my root cause was diabetes. There is at least something that needs to be addressed before I could get better. Learn to use the search function here and stay off U-Tube,(contradictatory advise), Know what your b-12 number is. I am currently withdrawing from Nicotine in hopes of getting better oxygen to my regenerating nerves. That is it's own brand of torment. Good Luck, Ken in Texas.

I was in disbelief that mine was diabetic in nature, as it progresses despite mountain moving changes in my life and care.

I have times of despondency, Nancy Kerrigan tinged "Why me", though less make up. It is a roller coaster. If you have not actively tried to reduce your sugar & carb intake it is a nice place to start.

While I was pushing myself physically I found that pulling back a bit is the better idea. Between the numbness that is symptoms and the additional Lyrica numbing was allowing me to push myself too far.

I still have fatigue, but I like to believe it has lessened. I encourage you to maintain any positive changes you decide to make. It likely will take time. 18 months eating vegan and still progressing despite decent control, weight loss and improved blood numbers.

best of luck,
Jon

Hi Mary,

I am so sorry to hear about your struggles. It is perfectly normal and understandable to feel outraged, overwhelmed and robbed. What you are dealing with is undeniably difficult. My sister has diabetic PN which struck early, it is unfortunate you had to join those ranks. I don't have PN but after three foot operations, a nerve injury and CRPS I understand the beast that is nerve pain and the loss of daily function.

I found going to a therapist who specialized in chronic illness, pain and trauma to be immensely helpful. I too went through a very dark time and could not see my way out of it. The therapist helped me grieve my losses and move forward with skills to deal with pain and stress. She also utilized hypnosis and EMDR which made a huge difference for me and sort of went in sideways around the conscious speaking part of the brain. Depression and anxiety often accompany life changing illness. It is just as important to attend to your mental health as the physical and it will help you manage your condition and feel better. I found my counselor on the Psychology Today website. They have a list of therapists by city and I just looked for someone with the right clinical interests.

I second the Vit D recommendation. It is often low (even with sun) and so important for nerve health and chronic pain. You might also check out low dose naltrexone. It has shown some utility for diabetic neuropathy. http://ldnresearchtrust.org

Take care and be kind to yourself and your body. I am sending Healing Love and prayers, Littlepaw