Pin and Needles
AnonymousJuly 6, 2006 at 1:08 pm
My wife’s first GBS symptoms presented themselves on March 12, 2006. After 13 days in the hospital and 5 doses of IVIE we were released on April 1. The Dr. rated her case as a 2.5 on a scale of 10 so we feel very fortunate that she had a “light case” …. if there is such a thing!
Anyway, question for experienced GBS’ers. What is the progression of the “pins-and-needles” sensation, and does anything help? She has tried Lyrica but it didn’t help and the side effects were unacceptable for her. Her pins-and-needles has transitioned to a numbness in hands and feet and with “electrical shock” feelings in her feet.
While I am thinking about it…….what should we expect as for as reflexes returning?
AnonymousJuly 6, 2006 at 1:43 pm
The most used drug against “Pins and Needles” is Neurontin. Perhaps your wife will tolerate this. I’ve been on 400 to 600 mg four times a day for five years now with no side effects whatsoever. Without this medication my pain would have been literally unbearable.
Good luck to you both!
AnonymousJuly 6, 2006 at 4:35 pm
I’m almost 10 years post with a ‘mild’ case and neurontin did help for years with those strange feelings… which never go away – so sorry to tell you that. Also, I still do NOT have reflexes. It affects my balance a bit, but I am a bit off balance type of person anyway so I just try to smile and go on.
I have just started taking Cymbalta and am pleased with the results. The electrical shocks are settling down and my legs don’t hurt tooo bad. I don’t know if your wife has depression or not, but my attitude is pretty good now and it can be way down as this is a very isolating illness – but she has you 😀 and that should help a lot!
AnonymousJuly 6, 2006 at 5:18 pm
I am only recently getting my reflexes back (diagnosed Dec 05) so there is hope that your wife will find improvement. I also had a fairly “mild” case of GBS – compromised breathing but no tube, paralysis but not total, and I seemed to recever fairly quickly as far as balance and reflexes. However, I still have the pins and needles/pain. Neurontin worked for me and it actually controlled my pain better, but I had some additional life threatening side affects so had to stop taking it. So far I can only take Lyrica. It has reduced my pain level but it doesn’t completely remove the pain. Hopefully, your wife will find relief with Neurontin – Just wanted to let you know that the two drugs may be in the same class but for me they had completely different side effects.
AnonymousJuly 6, 2006 at 7:06 pm
I am sorry that the Lyrica didn’t help your wife. I take Lyrica and it has been great once I got over the initial feeling of the drug. It took me a couple of weeks until the effects settled down. I still get the numbness in my feet and a burning feeling but the other pain, which was my main concern, has gone.
Best wishes and maybe she can try neurontin?
AnonymousJuly 6, 2006 at 7:32 pm
Hi Gary: I have just celebrated my one year anniversary. I was totally paralyzed below the waist and am now able to walk with a cane for short distances at a time. My reflexes returned, except for the ones in my ankles which my neuro said would never come back. I still have the pins and needles in my feet and wake up every day with them in my hands though. Neurontin was a life saver for me as well with never any side effects. Hope things improve, Jeff
AnonymousJuly 6, 2006 at 8:24 pm
Wow to be able to leave after 13 days and 5 treatments how fortunate she was….I spent over 100 days in three different hospitals. It takes time for those pins/needles to pass. I know for the first 3 weeks I did not want to be touched more than I had to be. If your mylen sheath has been eaten away you are exposing those nerves. I was totally paralyzed even after having the treatments. Today after l.5 years I still experience numbness/tingling and occasional burning pain in my feet/lower legs. Neurotin seems to work the best. I pray she is on the mend.
AnonymousJuly 6, 2006 at 10:10 pm
I also had a “so called mild case” I was’nt in the hospital, chances are I would have been had I went to the ER.
I have taken the option of no meds, I am dealen with the pain. I am going for acupunture next week. I have been told it helps some. I DO NOT RECOMEND MY PATH to anyone, its a personal choice for me. Thus far, I have been able to take it, and with the PT, and OT, its better for me to feel it, so I can deal with it. I got sick in 3/06. I have lost 54pds(needed badly) and can get out of the house for short times.
It makes me NUTS, but everyone has told me slow and easy. She needs tro listen to her body, and you need to watch. When my legs start to shake, time for me to sit, when my hands cramp up on da puter, time for me to be done. Hope that helps. 1 hint, try to do what ever you can for her. Something as simple as changen the sheets, or moppen da floores, or doing dish’s. when shes not looken, lol. Good luck
AnonymousJuly 6, 2006 at 11:52 pm
The tricyclic anti-depressants, in low doses, are also effective in many people at mitigating chronic pain. While they do have some disadvantages, in the low doses that are used for chronic pain management, they are generally minor, according to my doctor. I have just started using Nortriptyline and it seems to be helping.
AnonymousJuly 7, 2006 at 2:24 am
I came down with GBS December of 1989 (almost 17 years ago)
It seems like everyone is a little different. I was paralyzed from the neck down, on respirator for 12 days… in ICU, Six Plasmaphares (sp?) 3 months in University of Wa Hospital in Seattle. Wonderful care!!!!! I lost weight too… 35 pounds….one heck of a diet. :rolleyes: I never took anything for the pain/tingly/pins & needles… other than Tylenol.
I still have the leg and feet pain….depending on how much I over-do. Standing on my feet too long during the day…..triggers more pain in the evening. ooooooh also developed what they call trigger fingers. A couple of my fingers will lock down…and I will have to pry them up.
I have some residuals from the GVS…numb feet, swelling in legs and feet. Lung capacity was never the same after having GBS. Not sure if that was from being on the vent for 12 days….or part of the GBS residuals.
I am new to the site…..finding lots of info I did not know was available. These computers sure can be a wonderful tool. 🙂
Take advantage of all the knowledge here…..I wish I had known sooner.
My #1 suggestion……
Have a group of prayer warriors lifting you up…..
Prayer works wonders…..it baffled my Doctors 😀
God bless and keep you…
AnonymousJuly 7, 2006 at 9:16 am
A note to Gary, Jeff and all others ~ Never let a anyone tell you that a certain function will never return. No one knows that! Only time and determination will tell. I was predicted to be dead 6+ years ago!! And for the most part, I lead a blessed life ~ I am alive 🙂 I can smell the roses, hold my grandsons, And walk again!! No, it’s not easy, especially since I’ve taken a step backwards, mostly from not resting appropriately (I hear you, Gene :p ). As Liz said in another post “Never, never, give up!” 🙂
AnonymousJuly 7, 2006 at 11:28 am
Thank you all for your words of encouragement, realism (in some cases I didn’t want to hear it, but needed to), and wisdom. When we go the Dr for our next visit I will be sure to take the list of possible solutions to the Dr. to see what he has to say.
And yes ladies, I now do the laundry, dishes, cooking, etc. I did some before but not near as much as now! It is with joy that I am able to serve my wonder wife!
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