[jannaw]

February marked my seventh year with idio neuropathy, it occassionaly creeps up my legs and I have carpal a bit in the arms/wrists. I thought since nothing has changed in all these years that I had dodged a bullet.
About two months ago when getting out of bed my feet feel as if I am walking on soggy marbles(my neuro gave me a raised eyeball on that)for around the first hour and I walk in a shuffle. I'm a bit unbalanced till I reach the restroom and then gradually it goes away unless I sit for more than just a few minutes. He asked me if I had balance problems or falling, I told him just in the first few minutes fo the day. Well, yesterday I took a big fall onto my wood floor, came down hard on one knee and my wrist, nothing in my way, just toppled.
Now I am scared that I will be headed toward walking assistance, crutches, walker, etc.
He indicated this change is indisputably neuropathy. Isn't too concerned about my memory problems and forgetfulness, says I am on medications that can cause this but not to worry be I appear to be a very intelligent woman. Whatever, he sees me 15 minutes! He should be here when I go to the store for milk and come home with all kinds of things and no milk.!!!
My question is that I wonder if it is normal to progress this way after seven years, I have a perfect drug regamine that I manage pain with and I can't imagine putting one more thing to this mix. In fact I was wanting to wean down on this stuff, I feel like I can't accept one more thing! I hate my feet, and my feet hate warm weather.....time to go grab a chunk of cheese to go with my wine! Thank you all for being here!

[dahlek]

I DO HOPE YOU FIND SOME HELP HERE AND 'OUT THERE'? TO HELP YOU GET BY. IT'S NEVER EASY ANY WHICH WAY ONE GOES..
JUST DONT GET SCARED? GET SMART THEN GET EVEN BY...GETTING A DIAGNOSIS! REVENGE ISN'T ALWAYS SWEET? BUT, IT CAN BE NICE IN TERMS OF SATISFACTION. HUGS AND MORE.... - j

[nide44]

Originally Posted by jannaw

........Now I am scared that I will be headed toward walking assistance, crutches, walker, etc.
.......He should be here when I go to the store for milk and come home with all kinds of things and no milk.!!!
........... In fact I was wanting to wean down on this stuff, ..........

1) There are some very elegant, hand crafted walking sticks (canes) around. Using one could be a fashion statement.

2) They made paper and post-its for just this purpose

3) Yeah, I tried to think I didn't need them either-until I skipped just one dose of my overnite meds. Woke up with the wrath of God!

[mrsD]

If you would like, PM me your medication list...so I can check to see if you are depleting any nutrients with the drugs.

Also I'd try soaking in magnesium using lukewarm water.

Things can change, and it might be a good idea to have the old thyroid checked again. Pain like that in the early morning is very familiar to me -- that is how my foot pain started with low thyroid.

[norahs]

Jannaw
I have many of the same symtoms. Sometimes my legs feel like they weigh a "ton" but once I get going then it gets much better. My balance is still not good. You mention that that your feet hate warm weather....mine too. This is something that I just figured out. I just had a 15 day vacation to a warm climate and each day I was fairly uncomfortable. Mostly with the help of med's I am fairly okay most day but I wasn't while I was there. I also want to mention that wine or any alchohol makes my feet flaming red too. I say a new doctor (pain specialist) who specializes in the total package last week and he diagnosed me with Erythromelalgia which is in addition to the Neropathy. He said sensitivity to heat and alcohol was what indicated to him this is what I have. Really really hard to come to terms with a glass of wine could possibly light my feet on fire! This may or may not be your specific issue but thought it was worth mentioning. I also just changed my medication around and my body does not like it. I switched one pill out for another and don't think the new one is working. Lessened my dose of Gabapentin from 8 pills to 6 and between the two changes am currently in quite a lot of pain. I call Gabapentin my "stupid" pills......like you I have no brain even though I am an intelligent woman by all other outward appearances. So my deduction is........I can be semi pain free and "stupid" or I can be consumed with pain. Neither choice is very good but I would rather be stupid than in pain. Very sad situation but it sounds like I am definitely not alone anymore. Thanks for listening and good luck with finding some answers. I finally feel like I am going to a good doctor who understands pain and is looking for the underlying cause. Not so with my neurologist, he just diagnosed and prescribed drugs and sent me on my way. I wrote way more than I planned hope it makes some sense. Good luck, i truly do feel your pain and frustration.