I don't tell people details of my problems. I walk with my walking stick, limp and that's that.

In general people make judgements, esp if you seem articulate.

I also don't complain much.

"Arthritis" is what I give back...and no details are necessary.

Last Christmas, I was on my second month of the PN symptoms and my feet were so painful - I was limping, and my skin was extremely prickly, a distant relative asked why I was limping. I said I have peripheral neuropathy and she exclaimed, "Oh, but you look healthy! You dont look sick."

I am trying to understand what the numbers mean. I will keep on re-reading them until I understand them.
I googled "McArthur protocols" but I did not find much information about the percentile.

Thank you.

People tell me that. With Chronic Fatigue Syndrome and Dysautonomia. Gets old, but it is meant to be nice.

IIRC, It's illegal for them to ask to see such. They can inspect/scan/search, and in certain specific cases (like if you have residual radiation from medical testing) they can prohibit you from boarding without producing documentation for that, but they cannot ask to see documentation/proof of any medical condition/disability.

You won't get an argument from me on that point. Scholarly articles are often written that way. That's one reason I provided criteria for searches for more 'lay-friendly' articles.

[Addition:] The article is also invaluable for the compiled list of cited references/sources, which may or may not be written in academese.

Doc

I've been compiling this list for some time. My idea (previously expressed in the SCS & Pain Pumps forum) was to pare it down to something manageable and print it up on one side of a business card. The other side would bear chronic pain awareness facts & figures.

Things NOT to Say to Someone with Chronic Pain*
(*alternate: Disabling Chronic Condition)

But you don’t look sick
But you look so good
Maybe if you just got out more
If you’d get out more
If you just got out of the house
You can learn to live with it
You’ll just have to tough it out
It’s all in your head <--- This one's the biggie, right?
You’re just having a bad day
This will pass
This too shall pass
Just get more exercise
If you’d get more exercise
You just need to exercise more (and lose some weight)
I used to have chronic fatigue too – I just got active & it went away
It can’t be that bad
You can’t be in that much pain
It must be neat not to have to work
It must be nice not having to go to work
You’re so lucky to stay in bed all day
I wish I had time to take a nap
If you got more sleep, you'd feel better
Stop being lazy and get a job
My friend has back problems and still manages to work
You just need to get a hobby to take your mind off the pain
Just be more positive
You just need a more positive attitude
It could be worse
At least it's not fatal
There are people worse off than you
Everybody gets tired
Your illness is caused by stress
It's probably just a touch of arthritis
You’re just getting older
We all get more aches and pains as we get older
You’re just depressed
You just want attention
No pain – no gain!
Just pray harder
I've heard Fibromyalgia is just a diagnosis they give when there's really nothing wrong
When I get migraines, a brisk walk outside always helps take it away
I heard/read about this new product....

Doc

--is getting more and more extensive, and the articles are certainly complex and technical, but here's one to look at to start (it's long, but well-written, adn the reference list can lead you to most of the other useful articles):

http://www.hopkinsmedicine.org/neuro...10.747-758.pdf

My pain is getting worse...

Is it possible that a Sensory Neuropathy cannot be detected when its in the early stage? Is it a disease that is "building up" before it shows in the test?

With my pain getting worse, I cannot help but think if my specimen was mixed up with someone else's.

Has there been anyone who had a negative skin biopsy but later on re-tested and was positive? In this case, how many months should be the interval before getting another test (assuming doctor and insurance will allow).

Thank you.

It is possible to go undetected in early stages. However, it would be helpful if you had the actual numbers/percentile from the skin biopsy...which I don't think you do. I didn't get the numbers from mine either so would not be able to tell if progression is occurring or not.

Being that everyone is different and the causes/progression rates vary, it would be impossible to guess at how long between testing would be appropriate.

Thank you en bloc.