Others understanding Peripheral Neuropathy
 

Hi,

How do you explain to your friends and family about Neuropathy?

Thanks.
BonDon

Most folks won't 'get' it...
 

even if you hit 'em over the head with a crowbar!
That said, you do the best you can?
What I did, 9 months into my agressive & progressive PN [later diagnosed as CIDP] was copy info pages from the NIH on PN and include them in my Christmas cards to immediate family. It was not subtle? But, it was good info from a super reliable source and gave family a CLUE as to why I didn't want to travel 5 hours to X for Thanksgiving visit or Y for Christmas. Still, most didn't get it, not at times, even my DH who changed his mind when he got diabetes... Thot I was either over-exaggerating or faking it. NOT!
All other that I can suggest is that YOU get and learn all about PN DOWN FLAT in your own mind so you can explain it quickly, efficiently and effectively.
This past summer I've fallen due to the 'PN' and have had to refresh too many ER docs about 'neuropathies' something I suspect they learned in Med School 101 and promptly forgot. I have felt like a broken record at times in my 'recitations' of 'neuropathy' but, I bet they went onto the 'puter, just like you are to find out 'again'?
You MUST be totally consistent in your symptoms tho to any and all docs, UNLESS something new and more uncomfortable pops up. You'll know when/if it happens, but I sure hope it doesn't. Try and keep a sort of diary of things as they happen or not.
I've found it really helped me to put together a 'medical history' sheet on one page that includes: past major surgeries or diagnosed conditions; medications taken, dosage, how often for each daily or 'as needed'; and a list of all docs I see and their specialties and phone #'s. Once you get that 'sheet' done? Fold it up and keep a current copy or two on you when you go out, Then all you've got to do is say: IT's ON THE SHEET! After all, can you recite off any/all meds you take and dosages etc rite now? Betcha if you take more than two, ya can't.
BTW? I've had to shrink the print on my history sheet, as I gotta pack LOTS of info onto it? And I mite have to go to micro print or carry a chip as it's getting bigger! Or, shrunk too small to read. Just so the info is THERE!
Hang in there tho, folks here do understand about others 'not getting it', others can't relate? Because it's nothing like anything they've experienced. I often make an analogy to having been been burned in a hot french-fry vat. Gets the image and point across.
Good luck and read the 'stickies' at the top of the forum...lots to learn from them, truly! :hug:'s - j

I guess I am lucky in many respects - I just say that I have damaged nerves in my legs, and given the way that I walk it is pretty obvious to all concerned. So I don't ever have to try and justify anything really, or explain very much because it is very obvious. I have sensori-motor neuropathy - the motor aspects being most troublesome, as the sensory part is just numbness. Most people are pretty clueless about how numb I am, but that doesn't really bother me.

It's harder to explain pain though, as there is nothing to see ....

cheers
raglet

Sometimes, you just have to stand strong, and let them think what they will. Some of us look healthy, even my own PCP always tells me I look great, and will live another 50 years. Sunday night, I tripped going up my steps..thankfully the wall stopped me from falling. My symptoms are not that noticable to others, but to me, I know they are there. The reason I tripped, I don't always pick my feet up as high as I think I am. I walk nearly every night, some nights the drop foot is very noticable to me, or sometimes, that same foot seems to drag...probably because once again, I am not picking it up like I think I am.

I have conquered most of my balance problems, yet standing close to someone, seems to throw my balance completely off, and I tip. Often times it feels like someone ripped the rug out from under me...yet, most people don't notice this either.

Then there are the little aches and pains that crop up at any time, in any area.

You explain the best you can, and leave it at that.

See the 'letter to people without chronic pain' that I posted as a separate thread in this forum.

This forum is a good place to reach out to others who do understand the pain that goes along with this condition.

Thanks for all replies.

BonDon