Hi JoAnne,
good to meet you.
so sorry to hear about your pain. Thanks for the responses. i guess I too need to prepare for those times. I try to add the hydrocodone when it is very bad as I dont want to build a tolerance.

For me the increase in pain seems to be a response to muscular movement, which is, after all, controlled by nerves. Hence the lowest level of pain in the morning, and increase throughout the day. My surgeon hinted at this and I have since found that when the pain is worst, I can get some relief by minimising movement for an hour or so. But generally, just have to get on with it!

Ironic I could see this question today of all days. I FINALLY saw a PN specialist today who ordered a bunch more lab work. His technician
also redid the NCV as my local neurologist couldnt get results because I
have very mild ankle edema. This technician had NO problem. Of course my EMG/NCV really didnt show anythng so will see what the lab work and the skin biospy will show. ANYHOW, back to the topic...I specifically asked him why I have increased sensitivity/pain as the day goes on and by night I am usually really miserable. When things are really bad I have to take an Ambien or I would be unable to sleep. Anyhow, his answer was at night less is going on and our brains are not on other things. I dont buy this at all because it happens before bedtime when I am just as mentally active as in the morning.
The cortisol theory is interesting. I will have to investigate this more. So far the labs he ordered are pretty much in line with LizaJane...so he seems pretty up to date on things as in comparison to my local neuro.

mrsD.

Is there a supplement or something that we can do to naturally to level out these cortisol levels?

disease states affect the normal rhythm. Cushing's syndrome
is one. When cortisol remains high all day, there are huge
negative effects on the body.

When cortisol remains elevated, memory suffers too, as hippocampal cells get over stimulated in the brain and die.

In fact at one time the drug pipeline was investigating
anti-cortisol drugs...but they must have failed, since I have not seen any press releases on them.

Is it possible our pain is worse at night simply because it's been a long day??? I don't know, just makes sense to me. Sometimes, I think when we sitdown and relax, that's when we realize the pain level. When you keep moving, your attention is on something else. Is this possible??

Deb - I'd have to say that is no longer the case for me. My feet have gotten to the point that they burn all day long. I soak them each evening in epsom salts and I do get about 2 hrs of relief after the soak, but it gradually comes back. I'm not having much luck with the patches anymore either.

I know for myself I have delayed pain so what I do during the day may hit me hours and even days later. I do feel sometimes I almost cramp at night when not moving and that sends more pain. I have no clue just some thoughts and also why I hate night time. Hard to sleep and more pain and then the anxiety around everything.

Ok, was just a thought. I get delayed pain too, when I do too much of something. So far, thankfully, my neuropathy is more pins and needles, vibrations, cold spots and the like, not much pain. I hope it stays this way!

try to get up and rotate your hand in a swimming like motion (or like vertical helicopter) see if this helps, maybe try doing other body rotating motions