I never heard of Neuropathy
 

until I met a bridge friend about 7 yrs ago. Into knowing her more, she started talking about the "idopathic" neuropathy she struggles with since 2000. She had been taking statins for 30 yrs and she and doc never put it together on all this nerve damage/pain. She is off statins pretty much too on her own, not the doctor's insistence. She had so much fear of cholesterol. And most doctors instill that fear too. Alternative/complimentary doctors are another animal.

She also deals with squamish cell cancers and was forever having them cut and burned from her legs....so more trauma.

I just talked to her and she's off neurontin/gabapentin and is probably 60% improved...she is so much improved now. She has been taking grape seed ex for at least 4 yrs maybe longer. I told her about it as I tell all people who come into my existence.

I'm sure this nerve pain issues has been around forever, but never had a name as it does today. My dad drank all his life but never talked about nerve pain issues. So I never heard about it back in my early life. He never quit drinking so maybe he was forever deadening the pain.

So I'm forever thinking about what was back then and what is today with the medical world and health issues.

I know grape seed ex has been discussed on this group and other groups on this forum but if it were me dealing with all the pain I hear about here, I'd sure get on grape seed ex....it can only help everything.

I'm at NT as I was looking for support on the Femoral Nerve Damage I ended up with from hip replacement in 2010. For the most part the burn/tingle is gone on my thigh due to inosine/sphingolin. I know many want no parts of these but they helped me. Thigh is very numb so I can only say the nerves are very damaged and probably dead.

Well, thanks for reading. I had to put down what my thinking is and it's terrible so many are in so much pain. I have pain which is mainly arthritic but I manage it and live with it. I sleep good so that is a blessing which I'm so thankful for. C

I was also dx'd with Fibro in 1999 and never believed this NEW health condition. I've addressed so much for this so called fibro: thyroid, adrenals, hormones, minerals and more. I've heard many docs don't buy into that dx. It's almost like a doctor doesn't know what to do, she you are given the Fibro dx. Oh well. Being aware and helping ourselves is so important.

Other than diabetic Neuropathy I never heard of it nor knew anyone that had it. As a matter of fact most of my doctors had to look it up. My GP sent me in the wrong direction in the beginning because he didn't know either. Although they say it's common I think it's rare, at least the SFN and other types. I wish I was more aware several years ago because maybe I could have avoided a disease that I consider the ruination of my life.

It sounds like the grape seed ex helped your friend...a 60% improvement is very encouraging.

Cliffman :)

My friend and I talked about the "old times" and she said one of her friends told her his father used to rub his feet a lot as he said they were painful.

Maybe there was always pain, could be my father had pain too but I never heard about it. I think MAYBE back then, just my guessing, a lot of diabetes went untreated or people were not aware of it. I know my family ate LOTS of sugar and carbs all my early life.

I've also thought that with so many pharma drugs being given to people, these drugs could be causing so many more problems. My parents lived into 90's with all the sugar/carbs in their bodies and anacin/bufferin/excedrin in their medicine cabinets. Considering their lifestyles, they were pretty healthy, no big bad stuff. Arthritis was very evident in my family, women's side anyway. Just thinking about it all.

I had actually heard of it. I had seen something where radio Host Glenn Beck mentioned having it and how it was keeping him from doing his radio show. Although now he claims it was actually Addison's disease? Before that i had only heard of neuralgia and fibromyalgia. What is annoying is having to explain what neuropathy is to everyone who asks what i have. Almost no one knows what it is. Small Fiber neuropathy years ago was simply labelled under the broad fibromyalgia banner. They now have a name for it because of the small punch biopsy. At least that is what 2 different neurologists told me.

I just wish more doctors would be willing to point the finger at medicines for people who have idiopathic SFN. They always act like its impossible for it to be the case. Meanwhile, the studies are out there, Statins, Chemo, Acid Reducers, the list goes on and on... It's never the medicine, its always something else. Well, if it is why can't you find what that is???

Then at the same time it would be nice if they encouraged more people to take supplements. There are many that help with this, Benfotiamine, B12, R-Lipoic Acid, Evening Primrose Oil, Acetyl l-Carnitine and more. They aren't gonna drug you into a stupor like the big 3 (lyrica, Neurontin, Cymbalta) will but they will give a reduction in pain and improvement in health overall for many (not all). Most of my Neurologists tell me, you can go ahead and take it but I don't think it's very effective.

Patrick, I wonder IF most or everyone on this forum with neuropathy have had thyroid tested and worked on. Thyroid often is missed and often undertreated. I know that one for 10 yrs I tried to get help with what I believed was sluggish thyroid. SO MANY doctors today don't want to waste their time on digging into the thyroid -- meds are so inexpensive.

I'm on a blog of the author of Stop the thyroid Madness book and asked her this question and she came back with many are not getting optimal treatment for thyroid. She is a major proponent of desiccated thyroid support.

In the olden days before labs were in existence doctors went by symptoms and today's conventional medical world go by numbers. we are not numbers.

We need more public awareness imo
 

I had heard of diabetic pain before and there are ads on TV about it, but I had never heard of having those type of symptoms for any other reason. I did not have a clue what was going on when my symptoms hit. Someone told me it was Restless Leg. I joined a RLS forum and no one there suggested my symptoms could be Neuropathy.

I am finding there are many uninformed people that are victims of this disease. When I share my situation many people know someone who suffers from this if not themselves. When I recently told my ob/gyn doctor she started questioning me in detail and then admitted she was having some similar troubling sensations. After talking she decided to go to John Hopkins or Mayo to figure it all out. Last week I went to an attorney to draw up a living will, etc and I talked to him about what prompted me to finally do this. He admitted he has a drop foot from loss of sensation. For whatever reason it seems to me people don't talk about this. Bottom line is I think more people need to share their experience and not just on these Forums.

That is unfortunate that the RLS message board wasn't more helpful. Neuropathy is one of the major causes of RLS. And if you can find the cause of the neuropathy and address that, then RLS should improve. Pinched back nerves and iron deficiency are also top causes of RLS as well. Immune dysfunction, strokes and tumors and less common causes.

I want to blame Fluoride on so much, wonder if the 6+ decades of fluoridation has a major factor in all this too. I just made a post about fluoridation and poorer health on the general health section here.

I just got off the phone with my friend who has had neuropathy for 15 yrs and she is so much improved since being on grape seed ex, she says 6 yrs, her adult daughter is taking it 2 yrs now. They are so sold. She is the one who took statins 30 yrs.

She also mentioned that she had vertigo for years before and no more since on grape seed.

She only deals with toes/feet numbness and burn is about gone. She believes due to grape seed, the burn/tingle didn't go to other areas of her body. Hope it all continues.

Patrick,

You mention acid reducers as a possible cause of SFN...is that right? Do you have any references/links? I took quite a few of those for a chunk of time.

I had never heard of any neuropathy in any context, though I had heard of nerve pain. I think I associated with MS, that's all.