Good evening @mechanicjesus, Well.....the members came to the "why bother?" party.

I am glad you are in a supportive relationship. Sometimes, it is so difficult for the caregiver to have to watch her/his loved one suffer. I have been a caregiver and it is a challenging role.

That pain level phrase is a good one. It becomes more than annoying and gets some extra respect. You mention the drugs you have used or are using. Would you feel o.k. about sharing. How is your pain being managed?

I see you got the attention of our moderator, @erikas to engage in some philosophical and medical discussions about testing. I will also look forward to understanding more about this topic.

Glad you got to meet @johnbishop. He has walked down your path.
Do you have trouble getting to sleep and then staying asleep?

May.you be content and at peace.
Chris

@mechanicjesus
Hi, your original question was "why go thru all tests, trouble and money to identify all the details when they don't help"

I think you answered that yourself when you said "When it is at a level 10 it does get some extra respect"

Many people here who are suffering from relentless, debilitating, mind-numbing pain are trying to figure out what it is that is causing this, i.e. the pain has gotten their attention, and respect as you say. For some it just gives them peace of mind to be able to identify it, what it is and what caused it. For others they feel they want to know specifically what kind of PN they have, small fiber, large fiber, autonomic, etc.

My wife has been dealing with pain from PN for 6 years. Because her PN started a day after her second chemo infusion she felt she knew immediately that it was neuropathy from the chemo and did feel any need to be tested. From that point it is more a matter of research to find out what types of things might help to reduce the pain level.

By now she has arrived at a point were she is taking a variety of supplements. Some are specifically to help the body deal with neuropathy, such as benfotiamine, berberine, d3, r lipoic acid and curcumin. Some are to help increase her energy level, such as acetyl l carnitine, niagen, Co Q10. She found that something called Penetrex helps her reduce her pain level enough to get to sleep at night. She tries to be healthy, reducing her sugar intake and eating mostly organic foods.

I would say that if you do not want testing, then, like my wife, it might be better to simply focus on trying things to see what might help you, such as when your doctor changed you to a different biologic. For most it's a life of trial and error to hit the target that none of us can see clearly. I am sorry your PN has progressed to where you need to use a wheelchair when not at home. Can you talk about other lifestyle changes you have had to make? What things do you personally do for your neuropathy? I'm glad you are happily married, that is a huge blessing!

Best to you, Hank