• Anonymous
      December 19, 2008 at 5:28 pm

      I see that a lot of people discuss medications. Is this more for pain or are there other reasons people take medicine for GBS? Any input is greatly appreciated. Thanks

    • Anonymous
      January 4, 2009 at 2:15 am

      If you have to ask this then here’s one do you or have you had gbs an if answer is yes then you wouldnt need to ask right. ok here it is place hand on table get hammer in other hand swing hard an hit ohter hand an then you will no why we take med’s sorry so straight forward but you ask…:D 😀 its the (PAIN)! and it is as i discribed .an has been for over 3yrs now.:D

    • Anonymous
      January 4, 2009 at 7:36 am

      Many us have continued pain in different places of our body, feet, legs, back, fingers, hands, arms, etc. GBS pain can be in many different forms, sharp, shooting, stabbing, burning, spasms, tingling, etc. This pain can be mild to severe in any part of the body at the same times. I could not go day after day with the different forms of pain I have from head to toe without lyrica.
      As for other reasons people take medicine for GBS, that may depend on what other parts of the body has been affected by GBS. In my case I take detrol for bladder control, stool softener, blood prressure med., and meds to control increased heart rate all because of GBS.
      Hope this gives you a better understanding on all the discussions of medication. Each case is different, one person may need the meds while another person doesn’t and if you don’t need the meds that is good for you.
      Take care

    • Anonymous
      January 4, 2009 at 8:34 am

      lh48 every person is different in how the gbs effects our bodies and we heal at different rates. Also, a big part is how you are effected daily with the pain which can be in many different forms, sharp, shooting, stabbing, burning, spasms, tingling, etc.. I had more pain at the beginning while in the hospital. It hurt for people to touch me! It hurt for the sheets to touch my body. I hurt from head to toe. I was completely paralized and even my eye balls hurt. I have a very high level to pain and there fore just asked people to not touch me unless necessary. I did not have any meds. I did have a shoulder injury and I did take meds for that, on the bad days for over 8 months. My problem was that I had good days and bad days and since the pain was not there all the time or in different places I could tollerate it better than other people. Each day was different and the type of pain was different. I refused to take medications for the pain or for depression. I fought the GBS with a possitive attitude to see what it brought to me each day. I was one of the ones that could fall asleep and rest through out the day. The fatigue was over whelming. My brain was running at a speed no computer could keep up to and my body was paralized. My eyes would not focus and for 10 weeks I could not read or watch tv due to double vision. But I could see it was night and day and I listened to the tv all day and night so I knew what time it was and when to expect visitors. Once I was put on regular food and was not relying on the feeding tube then that also helped to let me know what time of day it was by what meal I was receiving and the type of rehab I was working on each day. A routine sure helped. I knew what to expect and knew when to make sure I rested. Days when I had more visitors or tests then usual would really make the residuals kick up. Some days were intense pain. I asked for ice or heat to see if that would help before I took any medication. For the most part nothing touched the discomfort that I suffered and struggled with. Being moved slightly and held there in a different position helped with the pressure from the bed. Being on the ventilator and trache for that whole time in the hospital prevented me from laying on my side or stomach to releive the pressure sores. They also gave me a bed that constantly moved me like I was riding on a raft in a pool. While outdoors I could see it was snowing, I felt like I was riding the waves near a island resort. That constant movement also caused pain in any area that touched the bed and had to move constantly it felt like it was giving me blisters. The back of my head, arms, back, bottom and the back of my legs and heels felt like the skin was being rubbed of. All that was on top of the nerve pain and muscle spasms from the GBS. Even now over 3 years later each day is different and so is the discomfort or pain levels. The fatigue and my mobility is better so I can move or adjust so I can try to relieve the pain in some way. I really don’t know how long I can deal with this. But for right now I can only tell myself that “I could be alot worse”. From reading the message on the forums, I can confirm that is correct. I really feel for my “GBS family members” who do have to struggle with the pain and daily life from this illness. For those that are new to this situation, we can only pray that they slowly heal and find their “new normal” and can deal with the hand they have been dealt. For now, I am not able to work and I still hold on to that goal of returning to some kind of job. Until then, I try to take care of daily chores and have good support and understanding from my Husband. I still continue to get better and am able to do so much more today than I was able to do 3 years ago! I keep reminding myself of that and try not to dwell on the many things I am not able to do. Reading posts I do understand what others are saying….I just choose not to talk about them as much as talking about how happy I am to be in the reverse process of this disease or illness. Who knows where that will leave me! I have the comfort that the medications are still there for me if I need them. I do not put anyone down that made the choise to go on the meds. They listened to their bodies and know what they need. The bad thing is the number of patients that meds were taken and did not help. The process of finding what combination of meds works for you is a long road too! I also take meds like Shirley to make life easier, so my daily life can be used to live with some quality. I hope the new year brings you and your family peace, patience and health. Hope these messages help you to understand. Questions welcome!

    • Anonymous
      January 4, 2009 at 5:55 pm

      Sorry Jim101 if my question was so “silly” for you. Yes, I most certainly had GBS and if you read other posts by me… was a mild case. I was fortunate to be lucky, and I know (and am very thankful for) that aspect. It does not make me any less sympathetic to those who had severe cases. I am still paralyzed in my face; one month shy of one year! I still have pain, spasms, and major fatigue. My question was simply that I was never on meds and curiuous why others were. I know others had/have more severe pain, but did not know if the meds was more to not get it again or help something besides pain. Again, jim101….my apologies if you felt I was ignorant as I certainly am not; just looking for answers. Thanks and good luck to you!

    • Anonymous
      January 4, 2009 at 6:42 pm

      If you are still having pain, spasms and fatigue, you may want to talk to your Dr. about pain medication. Although I am on pain meds, I still have pain, spasms and fatigue. I am on low dose of lyrica 2 x daily, if the dosage were increased maybe I wouldn’t feel the pain as much but it is tolerable so don’t want to increase the dosage. There are no meds to keep us from getting GBS again but not over doing it with your body and getting plenty of rest helps.
      Ask all the questions you need to, it doesn’t matter how mild or severe GBS was to a person when you are searching for answers.
      Good luck

    • Anonymous
      January 4, 2009 at 9:03 pm

      My dosage of Lyrica is 2 x daily and my Nurologist told me that it is a low dosage and if i needed to i could up it. I didn’t do it, thinking it may be my silver bullet later on, what is considered a high dosage of lyrica?

    • Anonymous
      January 5, 2009 at 5:37 am

      I am very definsive over this because so many have put me down and laught at the way I walk and it bothered me cause I thought you were some one playing around like they do here. So i’m sorry see this is another prob I get definsive over stupied stuff.I have noticed mental prob’s to can’t focus on any thing long enough to read and im forget ful an only 40yrs old if i learn somthing i for get in very short time an it come’s back later but this worries me.Only thing I have’nt forgot is bible and god’s word’s this is good thing. But simple thing’s I do every day man I was going in kitchen one day for coffee an got there an toldly blanked out scary if i had not had coffee cup i’d not remmemberd.this is why i stay home and don’t drive I’M SORRY FOR JUMPING GUN JUST NEVER READ ANY POST BY YOU OR LIKE THIS AN THOUGHT SOME ONE WAS MESSING AROUND WITH US. HOPE YOU UNDERSTAND AND FOR GIVE ME I FORGIVE YOU THANK’S JIM:( OH YES IM ON PAIN MED’S BUT NEROTIN AN LYRICA I BREAK OUT BAD AN HURT WORSE AND??TOPOMAX??MADE ME SICK AN BUNCH OF OTHER’S GENIE PIG FINALLY PERC’S 10/325 WORKED AN NO SICK AND COULD MOVE WITH LITTLE PAIN. WAS AN STILL FEEL LITTLE SILLY BUT IT WORK’S AND I TOLD DOC’S THIS IS IT NO MORE GENIE PIG. JUST GIVE ME THIS AND I’LL FIGUR OUT REST WELL BEEN ON YR NOW WITH NOTHING ELSE AN NOT WORKING LIKE USE TO THANK GOD CAUSE I DON’T LIKE SILLY LAND.BUT STILL CONTROL PAIN SO HAPPY ABOUT THAT.THIS IS FUNNY FIRST NERO SAID I WAS CRAZY AN SHOULD HAVE HEALED SECOND TRYED EVERY THING AND THEN SENT ME TO INDY DR CYNTHA HINGTGIN SHE NEW WHAT WAS WRONG IN TEN MIN AN SAID YOUR NOT CRAZY BUT YOU WONT HEAL CAUSE I SHOULD HAVE BY THEN. IN 06 GOT IN AUG 05 MILD CASE BUT AFTER FIRST ATTACK SIX MONTH’S LATER GOT WORSE AND THEN STOPPED AND BEEN HERE EVER SINCE SO 05 TO 09 AN STILL MALFUNCKION JUNKTION LOL BUT HAY NOT GENEIE PIG ANY MORE AN MOST PART AS LONG AS I DONT DO MUCH IM OK.BUT STILL WAITING TO JUMP UP AN RUN AFTER KID’S AN PLAY LIKE USE TO WITH NO PAIN OR SPASIMS.SORRY SO LONG SEE YA GABBY JIM

    • Anonymous
      January 5, 2009 at 10:49 pm

      Dear lh48,
      Your question was a good one. It made sense to me, but I am not on any medication. Everything I do is wholistic. I had GBS twice….20 years apart. The first time was mild because I had a wholistic doctor. The second time was a lot worse. With the help of my supplements, I do not need pain medication. It amazes me that people are willing to take pharmaceuticals that have side effects, yet do not try what worked for me wholistically. If someone had a condition and is not in need of medication, I would certainy want to find out what they did or are doing and try it. But everyone has their own choice as to which path they take. And I honor that. WHen I first found this site, I had chosen to stay home instead of the hospital. I tried two ERs and they did not know what they were talking about and it scared me. Because I was living on the floor since my legs wouldn’t hold me up, someone on the site told me to stop playing martyr and get to a hospital. That really hurt. But I am so glad I didn’t go to the hospital. They are on medications and I am not. Another person berated me for starting a new thread. I had a problem figuring out how this whole site worked. PLus I was battling the GBS ALONE..I did not have friends or family for support. So I think I know how you felt when asking your simple question. Hang in there and please don’t stop asking questions you need answers to.

    • Anonymous
      January 6, 2009 at 3:48 pm

      I can relate to your pain, but for me it has been 3X longer. Jim101, we are not always nice when we are in constant pain. I have apologized a 1000 times for being short with people. Please forgive me folks, past, present, and in advance, to anyone I may do this too in the future.

      God bless,

    • Anonymous
      January 6, 2009 at 6:10 pm

      You are so right that we are not always nice when we are in constant pain.
      I find myself directing my anger to those closest to me and then give apologies and feel guillty because they were there for me day after day with this illness. They are always understanding,forgiving and still there for me.

      Hope you can find relief with your pain and have better days ahead.
      Blessings to all of you.


    • Anonymous
      January 6, 2009 at 7:40 pm

      I appreciate the sincere input from many of you! Much appreciated! I will speak to my neuro at my next visit!

    • Anonymous
      January 7, 2009 at 1:08 pm

      As to medicines for our GBS-related pain: I had GBS in 1995. I now take Lyrica 3 times a day for my “nerve-ending” pain (i.e. the sort of pain when water hits my legs, as in a shower or a swimming pool) and Vicodin as needed for “overall” leg pain.

      I didn’t start these medications until approx. early 2007. My quality of life has improved [I]dramatically[/I]. I am able to do things that would’ve simply hurt too much to do from 1995 to 2006.

      Talk to your neuro. I know some people are very anti-pain medicine but living with constant pain can impact your life in so many ways.


    • Anonymous
      January 7, 2009 at 2:51 pm

      Hey dude,
      People have replied to you about pain medications, but nothing further.
      You mention that besides pain, you have muscle spasms. Besides pain medications that I am on, I am on two drugs to help stop muscle spasms.
      Below, I will list what drugs I am on, and maybe a suggestion to your doctor for anything shown, might help you.
      (Note: my CIDP hit my autonomic system, and slowly knocked out the nerves controlling my different organs.)

      Atenolol 50mg daily, for tachycardia
      Megase 20 ml daily, to increase appetite, P.R.N.
      Levothyroxin 50mcg daily, for hypothyroidism.
      Detrol 4mg LA daily for stopping bladder spasms, (I am now on a catheter)
      Mestinon 60mg 4 times daily, for autonomic dysfunction.
      Neurontin 1200mg 3 times daily, for neuralgia.
      Flexeril 10mg 3 times daily, for muscle spasms.
      Diazepam 2mg 3 times daily for muscle spasms
      Indocin 50mg 3 times daily, for migraines.
      Zantac 150mg 3 times daily, for GI symptoms.
      Erythromyacin 250mg 3 times daily, for gastroparesis.
      Marinol 2.5mg one or two tabs up to 3 times daily, for nausea/poor appetite
      (I also find the Marinol helps with mild to medium pain.)
      Reglan 10mg 4 times daily, (after meals and at bedtime), for gastroparesis.
      Vicodin 5/500 1 to 2 tabs every 4 hours, P.R.N. for pain
      Restoril 15mg at bedtime, P.R.N. for insomnia
      Tigan 300mg p.o. every 4-6 hours, P.R.N. for nausea
      Zofran 4mg 4 times daily, P.R.N. for severe nausea
      Senacot 1 tablet daily at bedtime as needed
      CHEMOTHERAPY: Cyclophosphamide 2000mg I.V. once per month, administered with Mesna, Zofran, and Dexatrose.

      If anything would help you here and you have any questions on it, just let me know and I will answer you. When I was having very bad spasms/cramps, they put me on Flexeril. When I was still having them, they added the Valium in conjunction with the Flexeril, and THAT WORKED, and stopped the spasms.
      The Marinol is the derivative of Marijuana, and MAKES YOU FEEL GOOD 😀
      All the best,