How do you describe your PN to your Neurologist?

[SueAnn]

I will be going to my neurologist in November and I am having a hard time explaining just what it feels like so it make sense to me.   I think I must have small fiber because it is a burning sensation, but is also feels like my hands and legs from the knee down are swollen or tight feeling.  There is also pain, but I don't think it is joint pain more like an over all dull ache. 

I guess what I am wondering is how do you describe you PN to your doctor.  I guess I am looking for is a better way to describe it.  Any ideas?


SueAnn

[gold55]

Hi SueAnn,
I'm new to all this and the diagnosis but I have that swollen achey stuff in my hands, fingers mostly and when I was taking anti-inflammatories for my joints it didn't change anything in my fingers...they still felt "full" and achey.  I have that burning in my toes and taking Vit B complex helps me a lot.  I don't have a neurologist yet.....I think they are still waiting to see if I have RA/SJS or just primary SJS.  I do have osteo in my big toe joints and the end joints of my fingers but that doesn't bother me like the nerve pain does!!

[sugarbugar]

Hi SueAnn,
It's hard trying to explain Neuropathy pain. I tell him the burning pain feels like I put my legs in a fire and I can't quench the fire burning them. The pins and needles feeling is like being stabbed with a knife over and over and over...., I also say the numbness feels like there is an elephant sitting on my legs or arms and I can't move, like I have a dead weight on me. As for the general pain, I can't describe that, if you find a way let me know, it's a different pain from all other pains I have ever had. I am fortunate enough to have a few good Neuro's at the Mayo and they understand my Autonomic and SF Neuropathy real well. They also found me a Neuro where I live willing to take my case and he seems like a good Dr. too. Good luck and I hope your appt goes well!

[Shade]

Hi SueAnn,

I suggest you search on the internet for 'Pain Descriptors' to find terms for exactly what you are feeling.  Sometimes it's hard to clearly describe the type of pain we're experiencing.  Being able to put the right descriptor to your pain should help the neurologist in making a proper diagnosis.

I am so glad I decided to see a neurologist.  I went for your same reason, PN.  The testing showed so much more wrong than I ever expected.

Good Luck,

Shade

[LizPetillo]

For the past two days it has felt like a cell phone set to vibrate has been in my back pocket.  My left butt cheek has been tingling and buzzing deep inside.  This is a new spot.

In the past, when this feeling has happened, eventually I would get the numbness and/or the fire ant bites feeling.  Wondering if my left butt cheek is going to be numb soon ....

(at least it's entertaining I suppose.     ) 

[Skylar]

Hi SueAnn,

I suggest you search on the internet for 'Pain Descriptors' to find terms for exactly what you are feeling.  Sometimes it's hard to clearly describe the type of pain we're experiencing.  Being able to put the right descriptor to your pain should help the neurologist in making a proper diagnosis.

I am so glad I decided to see a neurologist.  I went for your same reason, PN.  The testing showed so much more wrong than I ever expected.

Good Luck,

Shade

Shade, that's a great idea - finding pain descriptors.

Like Shade, the neurologist found a lot more than what I realized I had - PN is more than just what we feel - it's also changes that we may not be aware of. The one good thing about most of the testing the neurologist will perform is that it's stuff you can't fake - the results are real and your doctors will have evidence of your PN beyond just your description.

[SueAnn]

Shade,

That is a great idea!  I will look it up and see what I can find.  My neurologist believes me about having PN and between him and my rheumy I believe I am being treated correctly and aggresively to keep the neuropathy in check.  I just sometimes feel that I am not able to verballize what I am feeling.   

Thank you again for the suggestion.

SueAnn