[Healthgirl]

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.

[zkrp01]

Originally Posted by Healthgirl

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.

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.

[Healthgirl]

Originally Posted by zkrp01

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.

[janieg]

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.

[Healthgirl]

Originally Posted by janieg

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.

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.

[mrsD]

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.

[madisongrrl]

Originally Posted by Healthgirl

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.

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.

[madisongrrl]

Originally Posted by Healthgirl

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.

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!

[Healthgirl]

Originally Posted by madisongrrl

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!