NeuroTalk Support Groups - feet burn horribly- please read

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- - feet burn horribly- please read (https://www.neurotalk.org/peripheral-neuropathy/115853-feet-burn-horribly-please-read.html)

When someone makes statements about meds that don't work, they should really be careful with those remarks. For some, Lyrica is a godsend. Each person reacts differently to medication. Get a good doctor and experiment with medications. A cocktail of a couple meds works well for me. Lyrica is one of those meds.
So.....please be careful with the advice....Thank you

Quote:

Originally Posted by myeamans (Post 629596)

Thank you all for the replies. It's nice to know there are so many people out there that understand. I saw the vascular surgeon Wednesday and he did a ultrasound on my legs and he wants to do an arteriogram and angioplasty. That's scheduled for the 18th. He said he's concerned maybe I have blocked arteries and the blood supply is getting cut off. My feet turn really purple and red, the other day at the doc 2 of my toes were really dark, he said it looks like a circulation thing. And yes, they swell too and get really shiny.

Its like pins and needles burning, kind of like frost bite and yes my feet change colors. They get purple and then dark red, sometimes my toes are almost black. I saw a vascular surgeon last week and they are doing a arteriogram on Friday to see if I have blockages that are cutting the blood supply off.

I did a search for peripheral artery disease here and found this thread. You know, I've been bringing up that possiblity over and over to docs, but nobody ever seemed to listen to me. Until this last Tuesday. A new doc (rehabilitation medicine specialist) is ordering that Doppler thingamabob test.

While we never got to hear what happened with the original poster of this thread, I will let you know what happens with my test.

Just hope I'm not doing the old can't-accept-idopathic-grasping-at-straws thing yet again, because it would at least explain why my legs hurt so much with even moderate exercise. And shiny skin, and hair loss, and cold feet, and stuff. You know.

.....While we never got to hear what happened with the original poster of this thread,.......

I think the original poster had vascular problems and not PN,
so s/he never came back.
The proposed angioplasty & tests were for 3/18/10
and the last post was 3/10...... so I guess we're not needed.

Quote:

Originally Posted by freeinhou (Post 629370)

Wow. I understand your frustration. I personally don't know if my feet are burning up or freezing. The pain is bad and the sensation really interferes with life.

I don't know why I have this neuropathy. I did a healthy amount of drinking and I smoked for 40 years, so I got those potentials. I was dx'ed with MS 22 years ago and PN is a known result of that. I'll say one thing - this is one sucky thing to have to live with. You really need to want to live to live with this crap. It took me a few months to adapt. I wasn't suicidal - I just wanted to kill everyone around me without this problem - people just don't understand. I would suggest you just develop a serious attitude and ignore the stupid pain and climb mountains. It seems to be working for me. You're allowed to use all sorts of expletives while doing this...

Now - to address the question at hand. Cymbalta - worked for a couple of days. Stopped taking it because I really would like my wife to stay with me (complete loss of the obvious). Lyrica - doesn't work. Gabagabagaba whatever doesn't work. There's been a few other drugs but I forget their names.

This is something you can live a normal life with. Check out the NASA channel during the next shuttle mission (launches 4/5/10). You'll see me at the back left console (GC) occasionally. Nobody knows what I'm living with...

Tom

:eek: Tom will touch a few raw nerves with this post, probably not politically correct , but I think every one can relate to some part (s) of this witty little dig at P.N :)

Quote:

Originally Posted by JoanB (Post 741679)

Hi. Mine was vascular just like nide44 said. And I think yours is too. I ended up having peripheral vascular disease and I was put on nifedipine which worked great, for a while. Then the leg pain started. I was a runner, loved to run, until a few months after starting the medicine. I got claudication whenever I ran. Even trying to walk some hurt my legs, it sucked! My advice to you is to push doctors for things, you know what your feeling and you know its not normal. I'm 35 years old, not what a heart & vascular patient should look like but along with my PVD I was in the hospital Thanksgiving morning with heart failure. I got lucky and found a vascular doctor that even though he thought, "we're not going to find anything", he tried tests anyway. Now I see a cardiologist that I love, I've gotten my medicine adjusted and for the most part I'm feeling a lot better. My feet still burn sometimes and I've noticed that when I eat a lot of sugar they get worse but its better than it was when I originally posted to this site. By the way, about the sugar thing, I was told that sugar makes your blood thicker kind of syrupy so its harder to flow and less blood flow to your feet will make your feet burn and go numb. You may want to try that.

I don't know if any of you have PN or PVD but if you have any questions about anything please let me know. I've been to neurologists, rheumatolgists, vascular surgeons, cardiologist, nutritionist, etc. maybe there's something I've discovered along the way that could help?

Dear M? I'm soo glad you kept at the docs!

The one thing about neuro issues is what 'sounds and walks like a duck' could be a 'goose'! Sometimes a 'cooked' one?
That's why 'symptoms' are soo squirrelley. So keep at it Joan B and don't give up until you get some answers that just MIGHT make SENSE!
Until you get that pesky diagnosis tho? Keep all the 'WHAT-IF' demons at bay..until you know what you are really dealing with. It's not 'good' even in the ER, to be hysterical [even when YOU ARE?] to docs! Just state facts of what you are, feel and who you've seen. Over and over and over again..consistently-with your mind as clear as it can be [inspite of pain?] until you feel you are repeating a recording! IF you say the problem[s] often enuf, and clearly enuf? Some good doc might actually LISTEN! I truly hope for this with all my heart for you. :hug::hug:'s!!!!!! - j

Oh, I'll keep at it, dahlek. As for keeping my cool, I went through cancer without even crying, so you can believe that I'm a practical-just-focus-on-getting-better kind of gal. But thank you for the encouragement. Everyone can use that.

And I will keep your experience in mind, myeamans. Even if the test tomorrow shows nothing, I'll report back that that's what it was.

Thanks everyone.

Quote:

Originally Posted by JoanB (Post 742349)

Good luck. And I agree with what dahlek said, you just have to find a doctor that is interested, a doctor that cares. When you find that they will go the extra mile for you and help you tremendously.

Well, got them to give me the preliminary after I had the test, and as far as I can tell, the ABI values are in the normal range: 1.07 and 1.06.

I know that all of you understand the slight dissappointment you feel when you get normal results. I didn't want PAD of course, but at least it would have been something I could work on and maybe keep my legs from getting worse. At least it would have been something to focus the fight on.

Thanks for listening and understanding.