Erin,



But I want to say that you have to learn how to RELAX with this stuff. Agonizing over everything isn't going to make any of it better--in fact, it'll probably make it worse. I say that as gently as I can and really hope you don't take offense to it. This disease sucks. You have to learn to roll with its punches or you're always going to be on the ground struggling to right yourself.

Yes, burning can travel. It can move from place to place. It can stay in the same place. It can get worse suddenly. It can feel better suddenly. Your skin can feel as if it doesn't want anything on it (when in actuality it can tolerate stuff quite well on it). You can feel hot and like YOU are burning up.

Have you taken your temperature to ensure you don't have a fever? If you have and you still feel hot like that, then it's probably all part of it.

Another thing--Neurontin takes a while to build up and work. You may not be at the optimal dosage for you. But you have to titrate up and you should titrate down with it. I never had any problems with it and I was on a 2400 mg dose at the max dose for me.

Now.... If you have a fever and you're feeling cruddy, then address the fever. And if you're getting sick, it might take you a bit to find out.

No pill is going to make everything go away. And stressing about all this isn't going to help you. Plus, you don't want to run right away to steroids until you KNOW that you're having a flare and that you really need them. They'd be my last choice of symptom management, but that's just me. And the on call neuro is probably right--it might just be anxiety that's affecting you too (as I said above).

You gotta relax, hon. From what I can see you're really agonizing over everything and freaking yourself right into a mess. Take a deep breath and do one day at a time with this. And if a day's too long, then take a deep breath and handle the next few minutes or hours. But roll a bit, give new drugs time to work. And I'm saying this from having gone through an almost year long flare where I was getting new symptoms all the time and was getting sicker and sicker and sicker and no one was doing anything for me until about 6 months into it when I went to my doc and told him that I knew that there were meds out there to treat the burning, pain, etc. that I was having. So it's not like I don't understand your fear and impatience and stress level.



Feel better, Erin.