Last night legs were on fire. Whats next?
 

I thought it couldn't get worse.:( Last night my legs from the knees down felt like they were standing dangerously close to to a camp fire. My entire body was having horrendous shooting pains and twitching throughout. I actually felt like muscles and joints are being eaten and my insides were trembling.
Can anyone tell me what happens next? I have read about the burning since I was diagnosed with SFN, but this was the first time it happened.
I almost went to the ER.

Can you say flare-up?
 

I don't mean to be funny, I know the pain is maddening. Did you eat anything out of the ordinary? Did you eat or drink to excess? If you did, write it down as there may have to be a list.Nightshade vegetables for some people, simple carbohydrates for me. This can also be interpreted as healing or getting worse. Or just a flare. I had some relief for burning and tender skin on my feet with Mortons Epsom Salts Lotion. Good hunting, Ken in Texas.

I don't think it was food that set me off. I'm on a pretty mild gluten free diet, but it could be.
In the morning that day I applied capascin to my feet and it didn't do much of anything. Then, that evening I took a warm epsom bath (which I do about 4 times a week). It usually is soothing. The bath felt strange on my feet and then shortly after when I got into bed, my legs were on fire! I'm wondering if the capascin on my feet from the morning was not a good mix with the warm water and set me off? It didn't happen last night (but I was terrified to take a bath so......) I just got the rest of the painful symptoms, but was thankful that the burning was not another permanent situation.

Are you able to exercise at all HealthGirl? I've had a few really bad days in a row, and just went out and walked three miles today for the time in a few months. I thought I'd pay for it tonight, but I actually feel pretty good.

One day does not make for a trend, but if physical activity actually helps my symptoms, I'll force myself to do it.

I have what they think is acute onset SFN in my whole body. Baths were fine at the beginning, but after a few months caused more issues. Often times I would be exposed to a stimulus (like warm/hot water) and several hours to several days later I would have high levels of pain and burning that caused me to consider going to the ER. It is debilitating for sure. And I consider myself to be a very tough woman!

Yes, I am afraid to take another bath. Terrified actually. It's very upsetting because it was the ONLY thing that was soothing to my poor hurting back and neck. To top it all off, my husband just finished installing a brand new deep soaking tub for me and I was just going to get to use it this week!

Hi Janieg,
Depending on the day and the pain, I can walk. I can't run since this happened because my hip joints hurt and feel like they go out of place. Before this happened I worked out everyday doing interval training. It made me feel so good and strong.
So now I walk on the days I can. Walking and stretching is all I can do right now. I tried to do about 10 squats one day and I paid for it. It doesn't seem that my muscles, joints, and ligaments can recover. I wish I knew why. I'm still desperately hoping its the low copper and ferritin.

People with PN should stay away from steam rooms, heating pads (no more than 10-15 minutes tops), hot baths, etc. These just overstimulate nerves. They result in more long lasting pain if used frequently.

The only neuropathy exception is RSD (CRPS)...those patients cannot tolerate cold and seek out warmth.

You can get the magnesium you need from Morton Epsom lotion used in small amounts once a day rubbed into the affected area. If you choose to soak in epsom salts instead, use only lukewarm water-- never hot.
Also don't put too much epsom salts in the water, as it can sting dry broken skin. One application to an area can last 2 or more days, so you can rotate application sites.

The nerves that register heat seem affected first in SFN...with cold sensing nerves last. That is why menthol or ice packs work well, because they block the erroneous heat sensing nerves and give temporary relief.

Capsaicin cream didn't work for me. When my burning pain hits, Biofreeze seems to bring the most relief. I can still tolerate warm epsom salt baths. About 20 mins. then I take a coolish shower.

I have used capsaicin and not felt a thing, until a day later. Then it would burn for days. I would suspect the capsaicin.

I used to be an elite level cyclist and would get in the gym to lift heavy. That part of my life is over due to this SFN. When it first came on last year, I couldn't even unload the dishwasher without having to go lay down in the middle of the job. Over several months, I started walking laps in a gym pool. I've now worked up to water aerobics 3x per week (I'm, by far, the youngest one in that class). Even then, I have days where I wake up and clearly I haven't recovered from doing little the day before. It's very hard emotionally to go from being a tremendously physical person to being able to do very little each day. I completed understand your frustrations.

It certainly seems we all have different forms of this hideous affliction. Exercise doesn't seem to negatively me. At least none of the mild stuff I've done to date.

I can tell you one thing I'm absolutely positive of right now...hormones are playing a role in the whole ebb and flow of it.

I get the burning most nights but last night mine was incredibly severe in both legs and arms. I don't know what to suggest but I find that a warm bath followed by a cold shower pointed onto my extremities seems to help a little. Commiserations anyhow. It is foul:hug:

I know what you mean about the dishwasher. The pain of such a simple task would make me nauseous and take my breath away. I actually couldn't do it for 4 months with out taking breaks in between racks. I can do it as of last month although its still painful. I could not even whisk a few eggs or chop vegetables until now with out excruciating pain and weakness. I can chop again but have to pace myself. That is also incredibly frustrating because cooking is a huge part of my life.
To be on the positive side though.... if there were things we could not do and now there are things we can, maybe we are getting better? When I look back there were things I could absolutely not do that I can now. I couldn't drive for almost 4 months because of the dizziness and my arms couldn't even turn the steering wheel. Now I can on most days. I am far from my normal self but things are not as bad as they were. The improvement day by day is almost imperceptible, but month by month there is something happening. It seems like I take two steps forward and one step back quite often with this bizarre thing. I slept last night and was only woken up by my 4 year olds nightly visit. How refreshing that was vs being awoken from pain.:)