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Living with Polyneuropathy CIDP, GBS, & CMT

How do you take care of the burn? The overdrive? The static? I put some of mine here


#21

I want to hear more about Gabapentin. Will those that are on it please tell me how it is helping you, the dosage and frequency that you are taking and any side effects you have experienced? Thanx.


#22


That is a huge accomplishment! Good for you for taking care of yourself and your balance. I used to use a cane after the walker but my neurologist told me I was cured and I just thought I was clumsy. It was not til I got older that I started putting the pieces together. Having it at 17 and being completely paralyzed with tubes coming out of everywhere with no answers but them feeling accomplished and closing the books on me and my progress left me confused. I might look into that blingy cane you speak of! haha I love that you look at it as a fashion accessory rather than a sign of weakness. I'm so glad that I can finally find people to relate! Thank you for responding!


Petr said:

Neverplan
I have never fallen, an accomplishment I take some pride in. However the day will come as my right leg buckles often, but so far I have caught myself. Also, when out, I always have a cane, which helps a lot. If you don't use a cane, I recommend it. I'm too old to care what people think about using a cane. I need it therefore I use it. It helps if you can find a cane that makes a fashion statement. Mine looks like it has a lot of bling. I get comments on it all the time. More of a fashion accessory than a sign of weakness!!

#23

Neverplan, like you, I’m in the Chicago area? My diagnosis and treatment were at Rush downtown. My pain Dr. And neurologist have been very good as has been my therapy at Alexin Brothers, the Claremont, and northwest community. One positive in all this has been my oldest daughter who is an anesthesiologist at Rush and has helped me secure the best Dr.s on staff.


#24



Petr said:

I want to hear more about Gabapentin. Will those that are on it please tell me how it is helping you, the dosage and frequency that you are taking and any side effects you have experienced? Thanx.

#25

I was taking 600 gabapentin at night to calm the burning before the GBS, (for pher. neuropathy). It just calms the pain, pins and needles, and the burning. It does not make it go away thought. Only tolerable. I have had no side effects of it. The Dr's increased it to 1200 3 times a day after I got GBS. I have since cut back to 1200 only 2 times a day. I was released from rehab 5/24/14, in a wheel chair. I got back up walking after 6 weeks.


#26

Oh wow! My neurologist is at Rush and my lifesaver PCP is also there! The reason I call my pcp a lifesaver is because she has listened to me when others would look at me from the outside. I was 17 when I got GBS...mine was in 48 hours and I was completely paralyzed, was taken to McNeal, then an outstanding neurologist there saved my life. I then went to Westlake for rehabilitation.

Petr said:

Neverplan, like you, I'm in the Chicago area? My diagnosis and treatment were at Rush downtown. My pain Dr. And neurologist have been very good as has been my therapy at Alexin Brothers, the Claremont, and northwest community. One positive in all this has been my oldest daughter who is an anesthesiologist at Rush and has helped me secure the best Dr.s on staff.

#27


I was thinking about how you hold the back of the chair and stand on your toes..that's basically like when I put on heels. It's like I said before, you are giving in to the burning sensation. I always look for the nearest chair or something I can hold on to just in case! :) So much relation here...makes me feel like i'm not alone.


bosslady said:

I can hold on to the back of the chair and stand with on my toes and the tinkling and burning goes away. I use a heating pad on my back that helps calm the spasms. I also turn the heated mattress cover on medium and let the bed warm up, then I turn it off and can go to sleep rather quickly. My lower legs and feet hurt more at night when most of my day is done. I walk on concrete floors all day at work. But when I try to relax the shocking and burning begin. I take 1200mg of gabapentin twice a day.


#28

I have been taking gabapentin for 14 yrs. before that I took Percocet for a yr. I found gabapentin to be very helpful. I take 300 to 2300 mg. a day depending on weather, fatigue etc. it helps a lot with pain and stiffness. I am not aware of any side effects that I may have experienced. Give it a try


#29



Petr said:

I think my thermostat is broken, however I much prefer warmth to cold. I get the chills a lot especially after I've had something cold to drink. As for the burning sensation. My feet always feel cold, but I have a constant electrical storm going on in them. I was on a fentanyl(?) patch which helped with other pain, but not my feet. I'm currently on Lyrica, but will soon be off. Exceedingly expensive and don't seem to be that effective. I've heard about gabapentin, but have no experience. .
From sjremitz
I have been taking Gabapentin since May of 2013. In the beginning it seemed to help with the pain in my legs and back but I was also taking Percoset at the time. I no longer have pain but always the static nerve sensations in my lower legs and feet. Always related to what activity I have been doing or weather(hot or cold). Especially bothersome at night. Have tried Lyrica and other meds for RLS to no avail. My best remedy has been putting my feet on an ice packs at night until I can't feel the static any more and hopefully fall asleep before it starts again. Have received no useful help from Doctors with this problem!

#30

I was dx in 2007 with GBS. Was able to go back to work in 2012. I still have the burning, muscle spasms, jerking and weakness in my hands and lower extremities. I can walk ok but still unable to climb stairs without holding on to rails and seems like hip flexor muscles will not get stronger. Sometimes it’s just so darn frustrating. I know I’m so much stronger than I was but I guess I’ll always have these residual side effects. Wanting to vent to people who understand!!!


#31

iam late getting into to this discussion but thank you so much for going on neverplan. i am two and half years into to this crazy ride . and i to call mine good days and bad days too. thanks again


#32

Hi,

I used to get feet burns every night so The nurse used to apply this cream on my feet as well as placing a pillow underneath my legs for support. I used the heel protecter pillow for while. It was ok but my it made my feet extra hot and burning so I prefer the normal pillow to keep my feet off the bed. Please see attachment of both the cream and the heel protector.

They also made me wear hospital stakings (attached) to help the blood circulate in the legs since I wasnt moving. It give sensation and it didnt bother me.

I was also given gabapentine and claxen injections every day ( Clexane injection is used to stop blood clots forming within the blood vessels.) I stopped them all once I started walking with the crutch.

For the hands, this doesnt help the burn to go away but it helps strenthening your hands muscles. I used therapy putty (attached) with exercises. It comes in different colors and strengths.

I hope this helps.

Stay string,

Alya
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#33

Stakings image
34-image.jpg (38.7 KB)


#34

Therapy putty image
33-image.jpg (100 KB)


#35

Foot burning Cream image
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#36


is the foot burn cream by percription or over count interested i need something this burning and tingleing in feet and hands is getting to much
Alya said:

Foot burning Cream image

#37

You can buy it without perscription i think. It was provided by the hospital. I just checked out this mobile mode and i dont see the images i appliaded. the images can only be shown on the desktop mode.