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Living with Polyneuropathy CIDP, GBS, & CMT

Pins and needles elsewhere


#1

Hi guys
I was wondering if any of you experience pins and needles elsewhere in your body. Or if you have a patch of burning skin?


#2

When I'm due for scheduled infusions my legs feel sensitive, itchy and like they are sunburned. Within the first hour of infusion the sensations subside. I get sharp pins and needle pains in one of my feet around my toes when I'm getting close to infusion time. This sensation only last for 5 to 20 seconds and primarily occurs when laying down and will only occur once or twice a day.


#3

I receive plasmapharesis every 10 days (and have for 2 yrs) & at any given time, I feel needles on my face, up through my arms, in my torso, etc. My “burning” is on my feet and palms of my hands several times a week-feeling as if they were dipped in hot lava.


#4

I have been doing IVIG for a month plus and I still get pins and needles sensations in my arms and legs sometimes I describe them as bugs crawling with little punchers on there feet digging into my skin as they move. I also get hot sensations in my feet and hands primarily . I was holding a cold bottles water today and I knew the hand was cold but it felt like it was on fire.


#5

I get pins and needles in my hands and feet, especially the soles of my feet. I have been on IVIG since April 2009 and have been receiving this treatment fortnightly. I sometimes get burning in the top right of my body, front. Sometimes this goes through to middle of my back. As someone here said I also get very sharp pains in the soles of my feet just prior to treatment. This can be so irritating but nothing seems to help this. Pins and needles sometimes creep up my legs and arms to above the knee and below the elbow. I have one of those foot massages that pummel your feet. I have found this can increase the pins and needles but while my feet are on it the vibration tends to mask the pain. Hope this helps :)


#6

I get pins and needles frequently a massage has helped and usually lasts for several weeks! The mmassage therapists uses suction cups some if the time and does some deep tissue massage. I have had CIDP for over 10 years almost 15 the pins and needles are annoying and painful but I keep going you cantbstop


#7

One of my first symptoms was the feeling that my feet were "going to sleep." I still get that from time to time in my feet and hands. It is annoying, but I can usually get rid of it by changing position or getting up and walking around.


#8

I get pins and needles in my feet and hands and burning sensation in feet. The closer to my treatment time the more I feel. Sometimes this can be very uncomforatable and other times not as bad.


#9

I regularly have pins and needles in hands, arms, feet and legs. I also experience complete numbness in face neck and chest all too often. I haven't determined which is worse yet. Now my new Neurologist does not think I have CIDP. She wants to send me to Neuro muscular specialist in OKC. I asked her to send records to University of Kansas center of excellence.


#10

I wake up with numb hands and feet off and on. About 6 months ago I started getting a burning patch on my elbow. It feels like I burned myself there. It never went away. Now it acts up off and on…especially when working out. Is that what you mean? What is your “burning patch like”? I just assumed it was further nerve damage.


#11

I get that feeling on my fore arm and outer wrist. But to me it feels more like frost bite. Drives me up the wall. And I hate to let my wife know that it is bothering me because she starts in about how I should go to doctor and get on pain meds.


#12

When I wake up the burning hits me like a rush of fire for up to two to five minutes. It used to go away when I could get myself to get up and move around but for the last few months it doesn’t go away. I have numbness on my left side which used to drive me crazy but these days it’s a relief! I also have some other back and neurological issues going on but the CIDP has taken the front seat for over a year. I have no doubt that the constant burning I am experiencing is a result of CIDP. The bad thing is it is really affecting my face…the muscles feel drawn and it hurts to touch my face. Even my eyes hurt.


#13

What does your Neuro think you have if not CIDP?? If your like me , the testing was brutal. I’m asking because my Neuro won’t start IVIG treatment and I am getting worse by the day!!! I am wondering if he is thinking it may be something else but just won’t say.



bteeter said:

I regularly have pins and needles in hands, arms, feet and legs. I also experience complete numbness in face neck and chest all too often. I haven’t determined which is worse yet. Now my new Neurologist does not think I have CIDP. She wants to send me to Neuro muscular specialist in OKC. I asked her to send records to University of Kansas center of excellence.


#14

She is not sure, I have a follow up appointment next week with her. She is looking at all of the previous testing my old neuro did, which she has just now gotten. I have very little reflex activity below the knees, and none in the arms from the elbows down, so she is thinking neuro muscular. But that still does not explain the autonomic issues that I am having to go along with the neurapathy. That is why I want her to send me to the center of excellence at university of Kansas instead of just a neuo muscular doc in OKC. The university of Kansas has doc's for both specialties, and they can decide. I also have the increased rate of falling to deal with. Last year I fell 44 times, and I have already fallen 28 as of today. (My legs just quit working). (no dizziness or ballance issues) I really am beginning to feal like a freak.

Sunshine 58 said:

What does your Neuro think you have if not CIDP?? If your like me , the testing was brutal. I'm asking because my Neuro won't start IVIG treatment and I am getting worse by the day!!! I am wondering if he is thinking it may be something else but just won't say.

bteeter said:

I regularly have pins and needles in hands, arms, feet and legs. I also experience complete numbness in face neck and chest all too often. I haven't determined which is worse yet. Now my new Neurologist does not think I have CIDP. She wants to send me to Neuro muscular specialist in OKC. I asked her to send records to University of Kansas center of excellence.


#15



bteeter said:

She is not sure, I have a follow up appointment next week with her. She is looking at all of the previous testing my old neuro did, which she has just now gotten. I have very little reflex activity below the knees, and none in the arms from the elbows down, so she is thinking neuro muscular. But that still does not explain the autonomic issues that I am having to go along with the neurapathy. That is why I want her to send me to the center of excellence at university of Kansas instead of just a neuo muscular doc in OKC. The university of Kansas has doc's for both specialties, and they can decide. I also have the increased rate of falling to deal with. Last year I fell 44 times, and I have already fallen 28 as of today. (My legs just quit working). (no dizziness or ballance issues) I really am beginning to feal like a freak.

Sunshine 58 said:

What does your Neuro think you have if not CIDP?? If your like me , the testing was brutal. I'm asking because my Neuro won't start IVIG treatment and I am getting worse by the day!!! I am wondering if he is thinking it may be something else but just won't say.
Sunshine, I agree about the testing. I can't do IVIG, as I had complications. so until some resolution is made to my status I am effectively on hold with my current meds. And as I do not want to take narcotics for pain, (My neuro wrote me a Rx for Hyrdorcodone in January 2013, I still have half the Rx. I suppose my next level of attack whould be Plasma exchange. But again, have to wait on the doctors to come to a decision.

bteeter said:

I regularly have pins and needles in hands, arms, feet and legs. I also experience complete numbness in face neck and chest all too often. I haven't determined which is worse yet. Now my new Neurologist does not think I have CIDP. She wants to send me to Neuro muscular specialist in OKC. I asked her to send records to University of Kansas center of excellence.


#16

Bteeter: Having no reflexes is TYPICAL for CIDP. You really do need to get to a Center of Excellence. I hope you do!


#17

I will find out on the 20th where they sent my records for the referral. I gave them the referral # for the Kansas Center of Excellence. I actually had a short remission from the pins and needles that lasted about 2 - 3 months, but after starting the Tramadol, but they are returning with a vengeance now. And the falling is getting worse(up to 28 as of Saturday), and only half way into May.

Tremors are about the same, vision is changing again and still have double vision.:) Life is so good.


#18

Demyelinating diseases may also cause cross-talk between adjacent axons and lead to paresthesia. During impulse conduction some aberrant current that escaped a demyelinated axon can circulate in the exterior and depolarize an adjacent demyelinated, hyperexcitable axon. This can generate impulses conducted in both directions along this axon since no part of the axon is in a refractory state. This becomes very serious in conditions such as multiple sclerosis and Guillain–Barré syndrome.

http://en.wikipedia.org/wiki/Paresthesia

Paresthesia = "pins & needles"


#19

I have to say that I have the intense pain in my feet that feels like they are on fire. But the worst annoying thing is pins and needles in my face. Particularly my lips. It feels like they are always chapped, then licking my lips in response, which does bring on the chapped lips. So I always keep Chapstic in my pocket.


#20

My cheeks and nose do that along with the lips and chin. Of course the fun doesn't stop there, that crazy sensation travels into my neck and chest area also. (But not as often as the face.)