Hi Everyone,

Glad I was able to find this resource of information and good people. Thanks for having me!

My Story:

I have had PN in my feet since 2018. Up until this point, I only had very minor symptoms of burning pain in my sole of my feet and numbness in my toes. It would present for a day or two and then go away, sometimes for months.. Because it was so minor, I would not give it much thought, as I am very busy with work, and family/kids.

My PCP diagnosed it as PN, and checked for diabetes, which I did not have. I never had an official diagnosis however. Just said to keep an eye on it. The last time I made a note of having pain in my foot was April of this year. Did not have any symptoms at all from April until now.

I went bed Friday 9-17-20 feeling great, no problems and slept like a baby. Woke up Saturday to an entirely new reality, a nightmare more like it! Burning pain not only in both feet, but in both hands as well. Within hours this evolved to include tingling, zapping, crawling, burning sensations in my legs and arms. By the next day, this sensation (paresthesia)? had taken over my entire body, even my face.

Now on day 9, I am still having the same symptoms, which have not improved. I am noticing a pattern where my symptoms are the worse in the morning, then subside as the day goes on. During the day the symptoms can wax and wane. My feet only feel normal, not wearing shoes. If I put shoes on and start walking, they become pins and needles with burning pain. When the evening comes, the symptoms get worse again full body. When I lay down to sleep, my entire body feels like ants are crawling over it. I then start to get a burning sensation on my feet, hands, torso, arms, and face. Needless to say, I have not slept well at all. Thankfully I work from home!

So here I am, frantically researching this insidious new health problem. I have yet to wrap my mind around how quickly this all progressed. I went from feeling the best I have felt in a long time to pure suffering, and mental anguish. How can it be that nerve damage occurs so quickly over night? I thought this was supposed to be a slow progressing disease.

Anyway, I have an appointment with a Neurologist tomorrow. I am not sure what is going to happen on the road ahead, but I can't help but think about my family, being a Husband and Father. The support I provide, and all that will be required of me to fulfill my responsibilities if this is the new normal, with a prognosis of getting worse. Those are the thoughts that consume me now.

Thanks again, for letting me share my story. I am sure I will be on here frequently in the days ahead with questions and thoughts. If any members have words of wisdom or suggestions, please share. I am 48 years old.

Thanks!

HaveMercy

Well there is a LOT of help and support info here and the PN forum is loaded with supports.

Do you have any idea how the neuropathy all started.. think on this.

Alcohol, lots of sugar too much sugars can do it, foods yes.

Pharma drugs, yes some.

Surgery yes.

Mine started from hip replacement in 2010 and I've done a lot of supports to calm the burn/tingle down.

Inosine is one supplement that's helped me a lot and I post about it in PN group.

Topricin homeopathic lotion is a great pain calmer too. There are many topicals one can try and have some favorites.

I've never visited a neurologist as I do my own research and lots of help here...the MD's will slap us with their drugs...I don't want those.

HI Caroline,

Thanks for your response and support.! I was a casual drinker, but I don't drink anymore now for a year. Got to where just a couple of drinks would make me feel lousy.

I have a big sweet tooth, so yes I did eat a lot of sweets. I did not think this was a problem with normal blood sugars. As soon as this problem hit, I have cut out all sugar and carbs.. I bought a glucose meter and have been testing my blood twice a day for a week.. All normal.

I don't take any prescriptions

No surgeries

So if this was caused by sugar intake or my past moderate alcoholic intake, do you think it could be reversed by cutting all that out? If that is the cause, I must have some genetic disposition, because no one else I know has got it from that.

Thanks!

I would think it all can improve, changing what we put in our mouths....how much damage has been done, is the key now.

Like in my situation and it's 10 yrs since major surgery, I've improved but some nerves are dead forever...

HaveMercy check out the posts from glenntaj here. He had a similar bodywide presentation overnight like you did except he had no symptoms at all before that. I'm not sure how far the posts go back here on this incarnation but he has described his journey many times and is doing much better now.

Welcome HaveMercy.

Kitt

Wondering about the Grape Seed extract - what dosage is recommended to take?

I'm 80 years old with 30 years experience with this elusive, painful malady. I can relate to your experience Mercy. There seems to be little patterns to what sets it off, but I can related how it suddenly goes from everyday chronic pain to acute pain.

It was mostly in my feet until I got radiation for prostrate cancer. Afterwards I had these chronic to acute episodes. Numbing pain migrated throughout my body--face, abdomen and legs .I've found searching for causes such as radiation is a dead end. The official diagnosis is Chronic Idiopathic Polyneuropathy (CIP) In other words the idiots don't have a clue what causes it. In the USA they only know it gets worse with age. it is being researched extensively in Italy and Sweden, but not here.

I focus on the very real problem of my pain and anxiety which will get worse the longer i live. I've found some answers. I have a wonderful PCP who put me on low doses of Cymbalta which was no help and then low doses of Gabapentin also with no results/. But this elusive CIP requires higher doses, up to 800 mg 3 X a day. I'm also being treated by a psychiatrist who has prescribed Remeron at night to help me sleep and Xanax, which has really been a
Godsend.

I've tried medical marijuana. It was no help at all, but some says it has helped if you can afford it. What is working for me now is a combination of (1) Gabapentin (Neurotin) titrating up to 600 mg 3 x a day. (2) one half to one mg of Xanax when I feel it going acute; (3) A Chinese herb called Corydalis. This herb eased the pain before radiation and now I take six capsules a day (4) Daily exercises.

Am I pain free. Of course not, but prayer and mediation have helped me to accept things I can't change and change the thing I can.

Wade Senior

Welcome Wade Senior.

I feel ya. I am just checking back on this site for the first time in months. I had a similar experience in April 2020. Prior to this I had tingling in my heels for a little less than a year. Then after a few days of buzzing deep in my groin, below my genitals, I suddenly had full blown sensations over my entire body. I saw a local neurologist a couple of times over the next 3 months. THen I finally went to a specialist in Jan 2021. I had a skin biopsy, nerve conduction, multiple blood tests. NOTHING could be found. The biopsy showed "axonal" swelling. On exam, my sensation tests, pin prick tests, vibration tests were essentially normal. I feel no weakness. I am 2 years since the prickling in my heels and a good year and a half from the full blown body wide sensations. They put me on nortriptyline and GABAPENTIN (only 300 mg/day). I am maybe slightly worse...the sensations are not more intense, just more regular and simultaneous. I even get sudden irruptions of red patches all over my body. Sometimes my skin turns mottled, or red from pressure that it never did before. Stress definitely makes me notice it more and if I let it, drives me crazy, but I don't think stress makes it occur more...if that makes sense. If I am worse, it is only slightly...it's hard to know. I still get wicked depressed over it. I will see the neurologist for a follow up in Nov 2021...but deep down I believe I will just have to learn to accept this. AT the last appt, the neurologist said it could be SFN, but at a level below what their tests can confirm.