Your First Symptoms and their Context
 

Hi all,

I just wondered how your IPN first started--the initial symptoms and the circumstances that may have precipitated them.

Initial Symptoms: Mine were innocuous. I developed slight tingling at the end of the fingers on my left hand. Over a few weeks/months symptoms of numbness/paresthesia spread to feet and legs.

The Context: I had started weight lifting and the tingling definitely seemed to stem from this. I was on a fitness trip and had also started taking cold showers every day.

This fitness trip followed two years of high stress-losing parents and problems at work.

The weight-lifting and the cold showers definitely seemed to be the immediate triggers for the disease-like they "stressed" the nerves in my body.

I wonder how long it takes for IPN to develop from damage into symptoms--and whether how it would have unfolded without these triggers.

P

My initial symptoms were tightness in my leg muscles, them twitching and cramping. A bit later my feet started burning and various pains like bee stings in various areas. The context was that I was going through an extremely stressful period in my life - not sure if that caused the problem, but surely didn't help. Relaxation methods are part of the regimen that has reduced the symptoms and kept them under control - although they are still there and make themselves known at least a little bit every day.

Ragtop: I'm trying to be more relaxed about life too, since there isn't much else we can actively do about the disease at the moment. The trouble is the disease very much produces its own anxiety. I do suspect chronic stress could be a trigger.

Paul

Hi Paul, I've probably told you this before, but mine crept up slowly with numbness in both toes (right toe was numb for years due to back issues). Life was pretty typical when I started noticing it. I do think your idea of chronic stress has merit, I've always been anxious and definitely noticed an uptick in symptoms with stress. For me in the last few months even slightly strenuous activity definitely makes things worse, it was cycling or lifting a little weight, now its standing too long!

Hi Paul!
 

My initial symptom was random energy surges coming from my heel and shooting toward my calf. At night especially, I felt that something was crawling on my legs. I self diagnosed as Restless Leg Syndrome. However, within 3 months I had bad chronic burning in my shins and feet, hamstring hands, etc.. I also had random stabs of pain.

I had retired 8 months prior and was able to devote much more time to what I loved: dance (I had taught ballet), spinning, hiking, etc and I believe the extra stress along with excessive wear and tear over the years to my body played a part.

I too had suffered a great deal of stress in the year presiding my 1st symptom. It started with my being mugged and ended with my brother being diagnosed with cancer. There were 3 other events in between those two, but not as critical. I do believe this was a big trigger for my ISFN.

It's really hard to get a definitive answer as to why this has happened to me. Believe me, I have tried. The best I can do is an educated guess.

Pinkynose:

Beside the chronic emotional stress I had been suffering leading up to my diagnosis, I had also been putting extra strain on my body.

I had started a weight training regime (my very first symptoms were tingling in the end of my fingers which I put down to a carpal tunnel as a result of pushing weights) but also a cold-shower regime each day--almost as if the extra stress from the very cold showers and the weight-lifting triggered the latent symptoms.

I agree that learning to relax and let things go is imperative. For two years I would be grinding my teeth away at night due to the ridiculous levels of stress I underwent . . .

I am trying to let things go.

Paul

Paul, I too had put additional stress on my lumbar spine by adding aerial yoga to my routine. It was an extremely vigorous class and hard on my lumbar spine. I was also able to add days to my weight work outs, dance classes, etc as I was retired. Basically I worked out in some form almost everyday instead of the 2 times a week I had while working. My body was already compromised and I pushed it over the edge.

If I were you I'd get an MRI of at least your cervical spine. If something is pinched or compressed it could be causing your symptoms. It could also be carpal tunnel. Just be mindful that most orthopedic surgeons make their money performing surgery. It's not a decision to jump into in my opinion.

I personally don't think cold showers play a part in this. I remember when my symptoms 1st began I questioned everything as a possible cause. It's sad we have to do the job that doctors should be doing.

Meditation is a great help for many reasons while you search for a cause and for the rest of your life.
carol

Sorry to hear about your condition. I’ve had PN for many years and I often have the feeling that I hope I kick the bucket before the pain gets worse. At least I’m 87 so time will give me relief. I’m married to a wonderful woman, she is now 85 and I’m grateful to have her support now. Keep your spirits up. Regards from the UK.