I tried a few a couple years ago but the side effects weren't worth it and because my pain doesn't seem to be constant I decided to stop trying at the time to find something that worked (I had tried gabapentin and cymbalta). Gabapentin made me dizzy and "fuzzy" all the time and cymbalta made me almost like a zombie to the world and lose all appetite.

Yes my symptoms almost always seem triggered - cold and heat cause different symptoms. I did have a period of a couple months where I had almost on stop sunburn feeling on one side where my clothes hit. The only thing that is constant is tacchycardia which the docs think may be an autonomic problem - i have had some success with beta blockers to keep this in check.

Also as a general question - I haven't had the burning feet problem in a while and it seems to be worse the morning after exercise (but before I moved I exercised and had no burning). Why do you think my symptoms seem to come and go so much more than most people? I did just move to texas so I suppose the heat could be part of it but I wish I knew why things come and go so much.

Weakness of muscle is the constant for me. All other symptoms have evolved over time. Burning, stinging,zapping,deep pain have all changed, stopped, come back, moved around, etc. I had burning feet for six months or so and now it is not a problem.P.S. You and the other poster that get chills from external stimuli such as ghost stories or startling surprizes sounds almost like a reaction to adrenaline. I don't have that but I get the notion. Good Luck, Ken in Texas.

Hi boiler1993,

I am sorry you are experiencing so many symptoms.

You have mentioned the possibility of a sodium channel mutation.
Sodium channel mutations, channelopathies in general, can present in seemingly "odd" ways. I hope the test result on this, either way results turn out, help you to find more relief.

I, too, am going through testing for sodium channelopathies.

I hope you are more comfortable soon.


DejaVu

Ken - Yeah the adrenaline type reaction also makes me wonder what the trigger there is. Like if I do an activity with sprints or short term high exertion when I stop movement I often have a rush of stinging from head to toe...not sure what causes this but could be temperature or adrenaline. Good to know I am not the only one with fluctuating symptoms.

DejaVu – I feel very fortunate because I know that my symptoms do not compare to many people’s on this forum but answers would still be nice as I am only 22 (symptoms started at 19). Good to hear the sodium channel testing might give answers but I also was only tested for 1/3 so we will see. Did you get tested for one or several? I should have the results this week so can post what the results are when I know.

One last thing – I have experienced deep almost like bone pain in one leg a few times. No idea what is causing it but that one is very painful and makes it hard to sleep – could this be neuropathy related or something else?


Thank you guys for all your responses

what can be done if it is sodium channel problem?

Healthgirl -
What I have been told is that there are more targeted medications for these channelopathies and also it fairly new research so I would suspect that more focus on medications for these mutations may come in the future.

Boiler1993 and Healthgirl,

I have been told the same.
There are limitations to treating at this time.
This research is picking up.

Yet, it may be helpful to know. If there is a channelopathy, there may be some options to try. If there is not a channelopathy, it may be time to look for something else.

I am now awaiting DNA testing for confirmation of the type of neuromuscular disorder, also a sodium channelopathy, which is in addition to the PN diagnosis of sensorimotor axonal polyneuropathy.

Boiler, I hope you don't have any of the channelopathies. However, if you do, knowing this will likely give you and your doctors some guidance in what to watch for systemically, any co-occurring conditions, etc.

To Our Health,


DejaVu

I think variability is pretty much the norm with PN. My symptoms started with burning feet, which lasted a year then went away for 7 years. Then started up again, followed by a series of paresthesias. One would start and be prominent for weeks or months, then become sporadic as a different unpleasant sensation would become prominent for a while. I don't think there is any typical or predictable progression with this.

I've been having leg pains for over a year; they begin after I get in bed, and feel like butcher knives stabbing deep into my legs. The location is variable, in one or both legs, sometimes in one place, sometimes moving all around. (Before I started using medical marijuana, I would be unable to sleep, and worthless the next day.) Now my bloodwork shows actual muscle damage and I hope to find out how that is happening after some upcoming neurologic testing.