Dear Noodly Appendage,

It sounds like help might be available if the source could be defined. Sort of like having weeds in the lawn and treating with an herbicide and they persist. If the type of weed is not properly identified, the wrong herbicide is used, and the weeds persist. Until you locate the source, your treatments may be ineffective.

I spent over 30 years trying to get a diagnosis. All forms of treatment were ineffective. When the diagnosis finally came, the damage was too severe for any treatments to be effective. I spent 5 more years WITH a proper diagnosis but no treatment that would help. Then I found a doctor that was willing to try a procedure that NO ONE had ever even suggested. It is helping. It is not a cure but it has lowered my pain levels a notch or two and lessened the frequency of those 9's and 10's. My point is do not give up hope. You never know what might be just around the corner. I did not find any relief until just recently and I am happy for 7's instead of 10's. I am also very lucky that my high pain levels are not "constant". My levels vary throughout the day.

Pain will cause isolation. Who wants to be out and about with friends when they are in pain?

I hope you can find the source of your pain and get appropriate treatment. Sometimes, that is not to be had, the culprit is unknown, and then the coping skills need to be developed.

There are times when I feel like my life has been taken from me and I want it back. And then there are times when I feel very lucky that my pain, my illnesses, and other medical conditions, are not nearly as bad as many of the sufferers I have met here. When I read here about people that have whole body neuropathies, I just cringe at the thought. I have trouble coping with the areas of my neuropathies, and they are limited to specific areas. I also have spinal issues. There is seldom a day when my back does not hurt but again the intensity varies. I can't be up more than a few hours at a time before I need to lay down.

It took time, but most days, I am glad to wake up and be alive. I am pretty isolated but I have friends. They live here on NT. Let us be your friend and support. We DO understand.