after over 10 yeasr of being a PKD support member I have never heard of this type of skin sensitivity. a dermatologist may be able to help and you should be able to get an appointment quickly. if a neurologist is needed the dermatologist may have an in to get a faster appt.
I'm sure you are tired of seeing doctors but this is not normal.

Thank you. I've heard a lot. That is one I haven't heard either. I was hoping it was one I had missed. I feel like I have all the crazy stuff... Oh well, I bet everyone feels that way.

You know, I have this, that comes and goes.... I have not talked to a doctor about it. It's been years that I have had this, and I feel as if it might be something like fibromyalgia, or herpes. I was disabled with Chronic Fatigue for years.... and really have had to work this out myself, as the doctors were of no help, other than drugs, which back then I didn't want to use because of trying to make my kidneys last longer.

Some of the things I do, besides trying hard to avoid unnecessary stress, is no sugar or processed foods, and I take L-lysine in the mornings on an empty stomach. This represses the family of herpes. I ate some no no things over the holidays, and have a very painful back, headache, and a few other places, and I will try to really clean up my diet, drink lots of water, and alkalize my system a bit.

I don't know if this is what you are dealing with, but it sure sounds similar. And I don't know if it has anything to do with PKD either.

I honestly have no idea what is going on. I have no reason to believe it is or related to the Herpes.

I realized a better description of my pain is a moderate to severe sunburn.

I had my wife look ofer all of the effected areas and there is nothing out of the ordinary about any of them. No discoloration. No raised skin. No blisters, nothing but me and my word saying that they hurt. I swear I'm going to end up in a nutty farm due to my unverifiable symptoms. Sigh.

CHeather might be right on with the herpes - which most people commonly know as shingles. If you had chickenpox as a child you cang get shingles later in life. It is supposed to be very painful. My father has had it several times. The Mayo Clinic website states that you can get the shingles pain without ever developing the rash. Shingles linger for a long time.

I've had this for many years on my upper arms, thighs. Not sure the cause but it can be painful.

Larry, I agree about the shingles, it very well could be. Do you know if you had chicken pox? more than likely you did. There is a vaccine for them now so kids don't get them. I agree with Helen, you should get yourself to a dermatologist to see whats going on, it's certainly not normal. Keep us posted.

Norma...

I did have chicken pox when I was a kid.

I was doing a bunch of reading on generic Topamax last nigh and something I ran into was a LOT of people reporting fibromyalgia like symptoms and having to switch to name brand so the symptoms would go away.

That gives me a couple of places to start.

I've already had permission to titrate down on my topomax if I want. I haven't because my kidney nerve blocks haven't been lasting very long. But to be honest, I can't tell that the topomax is doing anything. I may get off of it to see if my symptoms go away.

I'll read up on shingles to see if it is something I need to see the doctor right away for.

Thanks for your help!

Larry

BTW, I'm going to sign up for the Mayo clinic PKD nerve trial next week. Cross your fingers they accept me!

I am not a doctor, but my aunt had that and she doesn't have PKD. We thought maybe see lice ( when tiny newborn jellyfish burrow under he skin) but it was Shingles. They have medication for that and if it won't hurt you to take it maybe that would help. I hope you feel better.