Hi All Im new
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October 16, 2009 at 1:24 pm
[COLOR=”Magenta”][B]Hi Everyone. Im New To The Board. Im So Glad I Found A Place Where There Are Other People Who Actually Went Through GBS. I Got GBS When I Was 17. I Spent 3 Months In 3 Different Hospitals, One Including A Rehab Hospital. They Say I Had A Real Serious Form Of It Because It Effected My Respiritory System Therefor I Was Put On A Breathing Tube For A Few Weeks.
I Can’t Explain It, But When Everyone Els Was In The Hospital, Did You Guys Experience That EXTREMELY uncomfortable Feeling In Yours Legs, Where You Had To Have Pillows Under Your Legs? I COULDN’T STAND IT. It Was Weird Because The Pillows Had To In The Right Position And My Legs At To Be A Certain Way Or I Would Cry.
I Really Don’t Know How I Got It. I don’t Think It Had ANYTHING to do With A Vaccine, Because I Never Got The Flu Vaccine. I Do Remember Along The Same Week Of Starting, I Felt Really Under The Weather, Almost Like I was About To Get The Flu. Now That I Think Of It, I don’t Know If That Could Of Been The Cause, Or A Part Of The Gullain. I Don’t Recall Having Any Tingling In My Feet, Like Most People Say, But I was EXTREMELY WEAK , To The Point I Couldn’t Walk, I Had To Crawl And SEVERE MUSCLE PAIN ALL OVER MY BODY.
It sucks Because Nobody Knows ANYTHING About GBS. I had Never even heard of it prior to actually getting it. Im definanetly Not Getting The Swine Flu Vaccine Because Of The Risk But I Hate Seeing All these people rushing out to get it. They Just Have NO IDEA, but Truth Is Nobody Really will Ever understand GBS Unless You’ve actually experienced it.
Just Curious If Anyone Experianced Any Of These Same Symptoms[/B][/COLOR] -
October 16, 2009 at 1:51 pm
I had pain in my legs and they would jump and move around some. Just my feet hurt a little and numb toes now.
Jaymes
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October 16, 2009 at 2:27 pm
Christina,
Welcome to the forums.
I got GBS Oct. 07. I had those feelings in my legs, they felt heavy and the tingling was there all the time. I had to have a bed pillow between my legs and under them all the time. After two years the heavy feeling and the tingling are milder but I still use a small throw pillow between the legs, don’t need one under them any longer.
You will find that a lot of people and even doctors do not know a lot about GBS.
Wishing you continued recovery.
Shirley -
October 16, 2009 at 3:30 pm
Hi……A few weeks before I became sick, I had similar symptoms as you. Felt like I was getting a cold or the flu…..then it went away or so I thought. Severe pain started a few weeks later in the small of my back, then radiated down my legs. I eventually started falling before I went to the ER.
About the pillows….aides positioned pillows between my legs for the first few weeks. I couldn’t stand the funny sensations of tingling and numbness or the bone on bone contact. My toes still experience a lot of tingling/numbness, but that continues to improve. I no longer need the pillows.
Try to keep positive about your recovery! Tom
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October 17, 2009 at 3:42 pm
Hello All,
It seems that a lot of people have residual “tingling” or pain in their feet.
I was rapid onset, paralyzed from the neck down, just four months ago. I think my recovery stopped at my feet. I know what you are going through.
The worst part of my recovery was when my legs were paralyzed and I could not shift them myself.
I remember one nurse came in and she started her routine, Take my blood pressure, temp etc. I still had a tracheotomy so I could not talk. I had a heck of a time convincing her to just move my legs; it would only take a second. But she thought she had to do things the way she was taught. More than once I was convinced that my legs were falling off the edge of the bed. I had that issue where you cannot tell where your limbs are.
I still have numbness in my feet. I have to sleep with my feet hanging over the edge of my bed because I cannot stand the pressure of my feet on the mattress and the comforter on my feet.
Welcome to the forum. -
October 17, 2009 at 4:44 pm
I Totally relate To That. I Needed The Nurse To Move My Legs SO BADLY. The Worst Was When I Was On A Breathing Tube, Because I Couldn’t Talk. They Gave Me A Sheet With Letters So I Could ” Point To Letters ” But I couldn’t hold my arms up let alone long enough to point out any letters. My fingers were all over the place. But After The Tube, The Nurses Would Do Their Routine First Not Knowing How Badly I needed My Legs Moved. That Was In The ICU But When I Moved To The Intermediate Floor, I Think The Nurses Were Much Much Better. They Were Really Attentive And Seem To Understand What I Needed And That I Needed My Pillows At A Certain Way. Each Leg Needed A Pillow And They Couldn’t Be To Close Together. So Hard To Explain To ANyone Who HASN’T gone through it. Feels Good To Talk With You Guys!
Im Assuming Everyone Here Had Plasma Pheresis ? I Had 5 Treatments. Made Me Completely Nauseated And My Body Completely Cold. Very Weird Experience. They Also Had Me On Dialudid. I Admit, I Would Say I Had A Headache Just So They Would Keep That Going. That And The Atavan Were The Only Things To Help Me Get Comfortable And Sleep, Otherwise I Wouldn’t Of Been ABle Too. However I Did Hallucinate Terribly When I First Started The Dilaudid.
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October 19, 2009 at 10:30 am
wrtrmom,
I still sleep with my feet hanging off the bed, and the heavy conforter bothers me also. My legs are ok now, just the every now and then jump while I am at rest. My feet and especially my toes bother me.
Jaymes
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October 19, 2009 at 11:17 pm
In my case, the pain and tingling in my skin was so intense that I couldn’t wear certain clothes anymore– no socks, no shoes at times, everything had to be very loose. Even standing under a shower and having the water droplets splash on my skin was like ‘the pain of a scald’. I changed mattresses because I couldn’t stand the pressure of the mattress against my body. A foam mattress was much better for me; I was often intensely cold throughout the first few months of GBS, but my body would warm up when I’d sleep on the foam mattress, and that would give me some relief and enable me to fall asleep. I’d also create a ‘tent’ over my feet, because anything touching the skin caused the agony of burning sensations through them.
My feet often tingle and burn with pain, but not like the first horrible months of this nervous system damage. I am Getting Better Slowly. I do have to watch out though, and not let my feet get chilled, not wear tight socks or shoes; I wear thick soles so it minimizes the pain of walking on sidewalk cracks or small pebbles or uneven surfaces. I still can’t step up over any inclines (such as sidewalks which have a gradient to join the street. My brain can’t seem to deal with it. I have to inch my way up these sidewalk ramps, like an inchworm or in baby steps. Once I get on a level surface again, my feet can make larger steps, and I can pull myself along by walking from my hips, which has become my ‘new-normal’ walk. If there’s a little branch on the sidewalk, I have to go around it. But the pain is definitely diminished compared to the first year, when every step was agony.
When walking, I find it helps to look up at the trees and sky, instead of always looking at the ground and at my feet nowadays. It helps to take my mind off the pain and the struggle to walk, and when I focus on the beauty of nature, I feel more relaxed and happy, and this also helps me to heal. A person’s heart can still experience joy, even with GBS. Just think of all the things we used to take for granted before this happened to us. And now every small improvement is such a wonder, relief, and blessing!
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