Absolutely. When my symptoms first came on, the came on hard. I would have delayed pain and burning after I did just about anything. It was so scary and confusing that I didn't know what to think.

A chiro did active release therapy on my leg (when we were still trying to figure out my issues at onset) and it landed me in the ER a few days later. I would get my hair cut and colored and I would wake up with burning on the back of my head. I had reactions to massages so I had to stop. I remember not sleeping for several days at a time due to all this pain. I can say that it was the worst time period of my life.

You said when this first came on it was at its worst. Has it gotten better? What are doing for pain relief?

I'm one year in and still struggling. I'm on 2400 mg of gabapentin and 10 mg nortriptyline. But when my symptoms first came on, I could barely work and almost went on disability. There was burning all over my body - especially face, back of my head, neck, and arms. My lower half is impacted as well.

Now, my body pretty much burns and buzzes every single day. But at least I can say that I sleep. The burning is very hard to deal with but it's not like it was at onset where the pain was surreal. I really have to watch the temperature of the showers that I take because they can cause me to burn later in the day.

Any bad side effects from nortriptiline? Which one is most effective for the burning pain? Have u ever tried to get off of either? Tia!

Literally head to toe burning 24/7!! Anybody else have this? Am I alone?
 

I have head to toe burnin and prickling 24/7 it never stops. I keep reading about people using creams for relief but how do put cream ALL over u! If anybody else has this type of burning what do u for pain relief? Please please respond. I'm desperate... I need help. I can't handle this much longer. Please don't just read and move on. I beg u

You cannot use the medicated compounded creams all over your body-- you are correct in that.

Typically doctors give gabapentin or Lyrica for this type of thing.

But you need to calm down too... as anxiety fuels the sensations.

Try soaking in an epsom salt bath... this provides magnesium systemically absorbed and relaxes as well. The magnesium will block some of the pain receptors. Don't over do it, and DO NOT use hot water. If you are using a hot tub, heating pad or steam room, stop it...heat makes the nerves more active.
Use about 6oz of epsom in a bathtub of luke warm water...soak for at least 20minutes to a 1/2 hr.

Hi there,

I have sfn, I am still being investigated for the cause but mine could be linked to metronidazole. I am on amitriptaline and lyrica. I had the skin biopsy by a professor in London. I didn't have pain at the start of mine,it must have been there as I had funny feeling like water drops all over my skin when out in the heat. when I was told by the neuro that it was sfn I googled it and completely panicked, after that the burning started from head to toe, I tried gabapentin but it didn't work. the other two drugs are working OK at the moment touch wood. if I panic it makes it ten times worse.

Do you know what caused your sfn?

I hope you get some relief soon.

LouLou

I've been on it over 2 years, and have more or less settled on 50mg daily. Initially it made me very jittery & I had to delay upping my dose. It kind of makes me feel run down, and constipates me a bit, but I consider it worth the relief. I think it's probably one of the easier drugs to get off of, but you'd still have to taper down, but I haven't tried to do so. It relieved the general burning covering the soles on both of my feet. I also have a different burning feeling on the sole of my left foot about the size of a quarter, which is somewhat less bothersome to me that the drug doesn't touch, at least at my present dosage.

I'd say go for it. It shouldn't take too long to get some results, but would say it took me about 2 months to receive maximum benefit from a particular dosage. My neurologist says he has people on it taking up to 150mg daily, which is regular antidepressant dosage.

I'd be more worried about getting off one of the newer drugs, such as Lyrica, Cymbalta, & Effexor. More habit forming than Nortriptylene, even in a short time.

I am also wondering what the lesser evils are in drug taking. What is the opinion on nortriptylene vs lyrica for side effects? I was told that lyrica was safer? I tend to believe peoples experiences more than what the docs say though.

Pain Management
 

If you are in a situation that demands immediate attention and you are not giving in to a panicked state of mind, get yourself to pain management. If however you think that you can take the time to try other things first, I would look to alter your carbohydrate intake. It seems whether diabetic or not that glucose control helps, not all, but many. Quit potatoes,flour gravies,any form of refined sugar(candy) snacks. Lean toward boiled or broiled whatever, not coated and deep fried. If you eat bread look for 100% whole grain and limit even that. My flare-ups are worst on potato salad. You might start a journal and when you do and try things write it in your diary. Include a number scale for your pain, dates, you get the idea. Sleep is essential, I have taken pills for sleep,pain and am still taking sleep aid but have withdrawn from two different pain pills. Don't agonize about taking pain meds, you can always withdraw later. Pain can drive people to depression so get help if your out of time. Hydrocodone will help with pain but must go to pain Dr. for that these days. Mixed reviews for Gabapentin and Lyrica some say it helps, it did not help me. I hope that you can grit your teeth and do what you have to do. If you can look around and count a blessing or two it may help with the anxiety and anger while you fight. Good Luck, Ken in Texas.