I have wanted to post this for a while, and I thought today is the day to share a small triumph with everyone. As most of the forum knows, I had a bodywide SF neuropathy most likely due to a monophasic autoimmune illness. Aside from the pain aspect, and all it entails, I had very frightening autonomic issues.

I had fleeting autonomic instability such as agoraphobia, palpitations,shakes,malaise,fatigue,elevated BP,anxiety, and so forth. All of this stuff was much worse than the pain from the PN, as I felt like my life was completely out of my control.

I just wanted to say that I have had alot of improvement in this area, and haven't had a panic attack in along time now. My BP is also under control, and I am feeling alot better. Better than I have felt in 2 years. I don't know if the continuous improvement in my overall health is linked to continuous recovery in my autonomic system.

The 2 things that I have been doing different are the following;

I have had about 6 vists to the osteopath and he has eleviated alot of pressure in my neck from a bulging disc. This has helped the headcahes and flushing.

I also read Mrs. D's thread on the benefits of thiamin and I began taking 200 mg every morning.

Since the osteopath and the thiamin, I have noticed the greatest reduction in autonomic instability, and overall improvement to my health.

So I thought I would share this with the forum,as it is a small step, but has given me back "quality of life", which is something that has eluded me for so loooong!

That's wonderful news! Any improvement is good but the things you described are difficult to live with. I was diagnosed with severe anxiety so I know what it is to live with that aspect of what you were going through. It does have a massive effect on the quality of life.

sugar pie,this makes me happy,they say i step at a time,so you
took two!!! And Anxiety and panic attacks are the pits,don't forget
the fruite flys are gone as well. Keep it up,i always like good news. Sue

Yeah!! Good news is always welcome.

Glad your feeling better.

Take care, Melody

I just wanted to post that there is hope with PN,and life after PN. I was affected very profoundly by PN,as every nerve in my body malfunctioned from head to toe! The incredible pain was unremitting, but I learned to live with pain.

When the autonomic symptoms hit, I felt the true wrath of this illness. I swear to you guys I thought at times I was a gonner for sure. It was my faith in God and the support of this forum that got me to where I am today,as it gave me strength to carry forward and continue to hope.

I think it's important that those of us with marked improvement post any recovery and any tips for recovery,as there are many new members on the forum. As I read throught the posts, I recall back to my early days when I was full of questions,confused and very often frightened.

I think that any one's recovery is great hope for all of us. In my case, I have had marked improvement in my overall pain symptoms, but as I said the greatest improvement and the most noticable is the lack in autonomic dysfunction in relation to anxiety,BP issues,and malaise.

I have been equal to anything lately,and I am here to say that I survived PN.
Though I continue to try to heal and improve... it is a long road... as we know.

For all the new members... Welcome to a great forum. Please try to follow the diet and nutritional advice offered in the stickies in relation to what you should be eating, supplementation,exercise,fresh air, and avoidance of toxins and toxic people.

Don't ever loose HOPE.

Great stuff Aussie, that is fantastic news and i am so happy for you.
Your absolutely spot on, a post like this can give inspiration to others especially to the newer members that are new to all this.
all the best
Brian

It's wonderful to hear such news. Great!

None of us is guaranteed repair, but it can happen over time when the cause has gone or been removed. Even some central nervous system improvement can come over many months and years.

rose

hmmm maybe i should move to australia

for more than one reason. The improvement must really feel great - - but the kicker is that maybe you have stumbled upon the cause of your PN . . . thiamine deficiency. If so, you will keep making improvement and you will know what you need to do from here on out.

rafi

--for completely personal and selfish reasons, LOL.

I'm glad your autonomic symptoms have improved markedly. In a lot of acute onset neuropthies, the healing process recapitulates the damage process, such that what is last damaged is last to heal, and it can often feel like the original damage process; I always wondered if your autonomic symptoms were part of the process of your autnomic system attempting to re-wire itself after damage--damage you may not have noticed as much originally as you were dealing with all the OTHER symptoms. (Admittedly, this is more speculation than certainty.)


Thiamine deficiency can in some cases casue an acute neuropathy, but with the body-wide distribution of your symptoms I'd more likely suspect an autoimmune molecular mimicry process, too (especially since you did not seem to experience other symptoms of a fairly sudden thiamine loss, such as dementia/mental status changes or ataxia). Still, many times additions of appropriate supplements give our bodies more raw materials for healing, even if we were not technically deficient perviously. And if they reduce symptoms, they are well worth it.