It's a been a while... New symptoms and updates..
 

Hi everyone,

Just stopped by to update and get some opinions.
I hope some others have had healing and would love it to hear it so please please respond.

I have had some healing I think??... My severe burning pain has lessened a lot. I can manage it and I'm on no meds. I guess I'm used to what lingers because it doesn't reLly bother me anymore. One doc did say I wouldn't we healing but sfn would " burn itself out" and the pain would be less.

However, the sensations are incredible. I have shooting pounding electrix pulses that run from the tops of my arms and legs right down to the bottom. Like hundreds per minute all over at once. The twitching is is the same as the electric pounding shooting. Tingling is all over at once and never stops. Etc etc
My vibrating body hasn't stopped either....
My muscles and skin? Don't know which maybe both? Contact and relax millions of times all at once and I have delayed muscle relaxation. This mostly happens when using a group of muscles ( ex. In between shoulder blades when propping my body up with arms.). Or every single time I wake up... Why upon waking???!!!! Any ideas?

I've tried the diet and supplement thing last year and didn't notice one bit of difference. I'm thinking I'll give it another try but instead of a 4 month trial I'll do an 8 month trial.

Vitamins...
I was taking
R-lipoic acid
Benfothiamine
Bcomplex
Omega fish oil
Vit d
Vit c
Acetyl l carnitine
Curcumin

Anything new I should add? Anything I should take away?

Hope to hear everyone soon.

Thanks as always

Hi canagirl,

So glad to hear you're doing better. Like me, you still have a lot of weird and unpleasant symptoms, but it's not as bad as it once was.

I have a theory that the crazy things that happen upon waking has something to do with naturally high cortisol levels in the morning, and those high levels are exacerbating whatever is wrong in our nervous system. It's called the "cortisol awakening response" and is part of the "HPA Axis." This is complex reading, but if you're interested...

https://www.researchgate.net/publica..._axis_function

https://en.wikipedia.org/wiki/Hypoth...93adrenal_axis

I tried taking an expensive supplement that was supposed to help cortisol levels, but felt nothing different. Of course it could be that my coritisol levels are fine, and it's just my body doesn't respond to them properly. When my symptoms are really bad in the morning, I'll wake up with my heart pounding, and I have little doubt some stress hormone is wreaking havoc.

Did you ever get a biopsy done?

I am sorry to hear your symptoms seem to rage on, though glad to gleen some vibe that you are coping on some level.

I notedthat recently about myself while musing whether I was feeling better or not. Physically, no. Mentally and emotionally I have used the challenging 2015 to align myself in a better state.

It is as perfect as this imperfection will be for now. I continue to look for opportunities to improve and what is not working. I believe sometime this year I will adjust my diet. I won't be emaciated anytime soon, but I don't want to get there either. I've almost exhausted the enormous benefit (my feeling, of course) that eating vegan was for me.

So constant course correction, which seems to be what you are up to. Good idea. I will let the more scientific literate give you an idea on what to introduce in what order, but I think you can get some relief from the above.

Anything I take is fractional relief. Nothing has been a home run, though I will say after walking part of the zoo today with some light shoveling I appreciate tramadol and epsom lotion both a great deal.

Best of luck to you,

Jon

Very glad to hear your pain is improving, even though you still have other symptoms... positive news is positive news and it gives me hope. Thank you for sharing. :)

[QUOTE=KnowNothingJon;1193891]Did you ever get a biopsy done?

I did get my biopsy in May and it came back positive... :(

I am coping better since my burning stinging pounding pain is way better. But still having a tough go. To the people around me they think I'm " better" because on the outside I seem pretty normal again.

I've just learned that nobody really wants to know how u feel and that it's better to "fake" being happy it's just easier. I only breakdown on my own now and it's way way less than I used to.

Trying to have some semblance of a normal life ( mentally) and it is working to some degree.

I just wanted to post some positivity for anybody new here. The pain really is not an issue for me anymore. I didn't do anything to make it go away it just did.
The most bothersome pain I have these days is stiff muscles and cramp like pain that doesn't seem to let up much but I can handle that any day compared to the burning and stinging

"I've just learned that nobody really wants to know how u feel and that it's better to "fake" being happy it's just easier. I only breakdown on my own now and it's way way less than I used to. "


This is so true, after awhile when I bring this up to people they dont want to hear about it.They have no idea what PN is or do they care to find out. I am just a bother to them even talking about it, its hard. Their eyes lids start closing over their eyes..I just dont talk aboutit anymore with anybody, even my Neuro seems bored.

I hope you can turn the "faking" it into reality. 2015 really was a fork in the road as to how I was going to continue. Shingles, increased symptoms and decreased efficacy of meds I was on- I was not feeling chipper.

I am still not.

But, I decided to make changes to how I was approaching a few avenues in my life. Maybe I should have spaced it out more, but I think I have the makings of coping with progress going on. TBD, as shorthand goes.

But I don't think you should long term accept the "meh" of fake happy. I know the impossible feelings. I use a lot of mindfulness techniques and have spent so many of those nights I couldn't sleep and could get comfortable enough reading I ended up reading books by people who work through debilitating conditions.

I especially enjoyed Blindsided, by Richard M. Cohen. He has MS, but the lessons he teaches are universal. His style and tone might not be for everyone. I want to put on a pot of coffee and talk to the man for days.

I've had to put this down a few times to parent so I apologize if it is not cogent.

I hope it is. I also hope your windchill is above zero. It's cold here.


My best,

Jon

Yes, for me too. Everyone expects you to be better and it is exhausting to constantly say no. I just now say I am ok or working on it.

Unfortunately, sickness is not the norm and we all have to live in a well society compared to our illness.

I have a loving family and now I just try to go with their flow, as I do not have the energy to express the extent of my suffering.

It is a lack of understanding on their part-not excusing it, but it is true.

Heres to hoping we all get a way to adjust.

hi canagirl,

It is good to hear from you again, glad you are feeling better!

My NLD SFN has been pretty stable, I've reduced the Lyrica by half and don't feel any different so i'm not sure if mine has settled down. My neuro too said that it can burn out.

I'm waiting to hear from NHS Panel to see if IVIG has been accepted. They lost the paperwork but have re-submitted it today.

Will keep you updated. :winky:

Hi Cangirl,
Nice to hear from you! That is great news.
I have had improvements as well. Sometimes I wonder if I have just become more used to it or what, but I'm sure some things have changed.
It is fantastic that you are off all meds!
I have some days that are horrible and some nights that I do have to take meds for the muscle spasms, twitches, and stinging pain. It is during those nights that I fear relapsing to the year of absolute hell that I was in (as you were). Usually when the next day comes it is not as bad as I thought it would be, so thankful for that. I am still not accepting this and haven't given up the fight. I can't exercise because my nerves and muscles just won't let me do much besides light housework and slow walks. I'm channeling that energy to meditation and mental disciplines.

Are you able to everything normally? I'm so glad to hear that you have improved. I wonder what the heck happened to us.