I Need "Pain" Help from fellow GBS posters

    • Anonymous
      July 28, 2008 at 3:18 pm

      I need help for my fellow GBS Forum “boardies” ~!!

      There is a friend I know who is questioning the amount of medicine I am now taking to combat my post-GBS pain.

      I had never really taken any painkillers for GBS in between my onset of it back in 1995, and roughly 2006. I was paralyzed from the waist down. The nerve pain was [I]tremendous [/I]sometimes, and water hitting my legs felt absolutely excruciating. I was basically always in pain and discomfort.

      In early 2007 I found a neurologist who specializes in GBS/pain management, and she prescribed Lyrica, and Vicodin. Most recently she added Amrix (a muscle relaxer ).

      The quality of my life since then has improved dramatically with these medicines. I can walk further, carry my daughter more, do more things with her (she’s an active 2 ½ year old) and I just generally feel better and more alert, without the constant pain (it still hurts but it’s a lot better)

      This friend is convinced that I don’t need all the medicines ([B]especially[/B] Vicodin). They are sort of anti-medicine.

      Is there a particular post in one of our forums, that deals with the amount of [B]pain[/B] people can suffer from post-GBS? Or how much medication people have had to take to combat post-GBS pain? It might be helpful for this friend to read that other GBS sufferers have had to take similar medicines to combat the pain. I try telling them that nerve pain is like no other pain, but they don’t seem to believe me.

      Thanks everybody for the help ~~

    • Anonymous
      July 28, 2008 at 3:25 pm

      Please tell your friend that you value your relationship and that you would rather focus on fun positive topics rather than how many pills you take!

      If you have to take pills to improve your quality of life and be painfree so what!

      I take 23 pills a day plus 2 shots of insulin!

      My friends and I get together to enjoy each others company and they often remind me when it is time to take pills. When I am having a bad pain day and can’t walk they will even push me in a wheelchair!

      Give your friend a big hug and thank them for being so concerned about your health but you take the pills to improve how you feel 😀

      Rhonda from Canada

    • Anonymous
      July 28, 2008 at 8:43 pm

      Hi: I agree with Rhonda. I take 30 mg of oxycontin, 4800 mg neurontin, and valium as needed for pain control. My life is so much richer now that my pain is under control. I had one friend who took me out to lunch to tell me that I was probably addicted to oxycontin and should get off it no matter what. When I explained that people in pain do not normally get addicted in the way she meant, she said I was crazy and that I probably couldn’t think straight because I was on so much medication.
      People who are not in pain don’t get it. They can form judgments and make all kinds of superior comments because they simply have no idea what chronic debilitating pain is like. I know myself and I know my own mind and I told her that. I decided she was not a friend because she did not listen and I had plenty of friends that do. Tell your friend to cut or burn himself severely or have surgery and not take any pain medication. Then he could make his judments all he wanted and at least have experience behind them. NOt that I would listen then either. I have this one life and if I can spend it pain free I will take it. My life is so severely restricted by post GBS as is that I won’t tolerate any more.
      Sorry to ramble-love yourself enough to choose a richer happier life and forget anyone who doesn’t get what that choose means.

    • Anonymous
      July 28, 2008 at 11:08 pm

      Guppy, Keep on Keeping on!!! When your “friend” feels what you feel than they can give the advice, until then take what you need to take to live your life!!! Enjoy that 2 1/2 year old!!!:) Remember pain drains your energy levels!! Take care.

    • Anonymous
      July 29, 2008 at 6:51 am

      I sometimes equate the pain to having a root canal without anesthetic. Most people have at least had a cavity and so know what that kind of nerve pain feels like. Then I tell them to imagine it all over your body, some places it’s always there, others the pain comes on like a lightening bolt, unexpected and intense.

      If you haven’t felt it, you can’t understand but I do keep trying to explain when people ask.


    • July 29, 2008 at 8:16 am

      Hi Guppy,
      My son has cidp (11y/o) and he does have pain. We have been lucky that ivig and aleve do the trick. However, I have pain issues with my back. I have 2 herniated discs, degenerative arthritis, and now something is up with my hip. My back is currently “out” I went to the doc yesterday she gave me more vicodin, but it also has ibuprophin in it instead of the codeine, for an anti inflamatory purpose. I also am taking soma and oral morphine for a short time. I must say, I have noticed that as time goes by (years) it is taking more vicodin to take the edge off, it worries me. I was wondering if you ever took neurotnin? You can take up to 3600mg a day and it is not addicting like the vicodin. Lyrica is supposed to be the best for nerve pain, others do the neurotnin. Is it possible you are not taking enough Lyrica?
      Since Kevin has gotton sick, I have learned one very valuable lesson, take in what others say, if it makes sense consider it, if it does not, tell them thanks for your concearn, leave it at that and follow what you know you need. People really do not understand, they unfortunateley do not know when they are crossing the line. Being that I do not have gbs/cidp, I too fall into that category, but I do try to be considerate. Good luck to you and do what you know you need to do.
      Dawn Kevies mom

    • Anonymous
      July 29, 2008 at 1:43 pm

      Cymbalta has been a great help for me for the all over pain I feel – I am on a high dose at 60mg x 2 day, but i do still have breakthrough pain on many days. Now, in some cases Cymbalta hasnt had a good effect, BUT that is the case with every medication – it has wonderful results for some and not such wonderful results for others. There are other depression meds that also have the same effect of blocking nerve pain as that of Cymbalta, its just a matter of finding the right one. MAYBE, its worth a try to get something like this and just see how things go for a couple of months. I have tried Lyrica, but it was a situation of being ‘totally out of it’ and having no pain, or dealing with the pain that is bad in my hands, arms and feet at times during the week. If i dont take my Cymbalta for a day, I can barely walk my feet and rest of my body is in so much pain.

      If you click on the [B]6th link in the blue bar on top of the screen – SEARCH[/B], type in Cymbalta and scroll down and you will find a number of topics that have pain in the heading. you can do the same with the word pain, but you are likely to have so much to wade through as I think almost every topic has pain in it
      Hope that helps.

    • Anonymous
      July 29, 2008 at 2:59 pm

      [B]Hi Guppy,

      Until your friends walk in your shoes, they have no right to tell you anything about the meds you are taking. Outsiders really don’t know the amount of pain that GBS/CIDPERS have. Everyone’s pain level is different with GBS/CIDP.
      My husband Frank was on pain killers and Neurontin from onset until he passed away. Since my fractured disc I have been on oxycontin and will continue to take it as long as I have pain. See I am a very tell you like it is person and I for one would have told the friend to mind their own business. So continue to take your meds and just don’t talk to them about your medications anymore. This is your life and you control what meds you need to feel some form of comfort.[/B]

    • Anonymous
      July 29, 2008 at 11:12 pm

      Hi Guppy,

      I have CIDP and have tried a variety of meds. Right now I am taking Neutron, Klonopin, Rpoinirol, Desyrel, and Cymbalta. They seem to doing the trick. I take a total of 25 pills per day. Some days it great and some days things are not that great.

      You friend my have all the good intentions in the world, but ask him/her to pull their lower lip over the top of their head. If he/she can do it, ask him/her if they would like some pain relief. I think their opinion about pain control might have changed.

      Just because you look great doesn’t mean you feel great. Friends and even family do not always understand. Everyone reacts differently medication. It may take sometime for the docs to find the right combination. Vicodin, like any narcotic pain med can be a double edged sword. You need to keep checking with your doc.

      Jim C

    • Anonymous
      July 30, 2008 at 10:31 am


      I also have to agree with everything that’s been said before me.

      I was one of the people who struggled with taking ANY pain medication – much less a narcotic level pain medication – OMG, I would be a criminal or something……


      I began taking different medications designed for pain reduction still in the hospital, and have finally (almost a year and a half out, this time) felt that my quality of life compares to what it was pre-GBS.

      I attempted NUMEROUS times, with my Dr.’s approval to wean off my pain meds, each time making it only so far. Then I would push and try and make it farther and farther. There is no plateau of pain. I had to overcome that thought in my head. I kept thinking that I could rid myself of pain medication and then I would just have this constant level of pain (in my feet, only) and things would just go along….that never happened.

      Much like you, I too have little girls. My pain level affected my time with them. My 4-year-old asked why Daddy was mad all the time. She told me, in absolute terror, that she was scared of me one evening, while I was trying to cope with the high level of heat/pain/tingling/electrical shock/freezing/etc. that was going on in my feet.

      I made the decision to do better, no matter what. I started on my current medicine around 9 months ago, and things are going great. I still have breakthrough pain, every once in a while – I was driving nails on our new house, Monday, and that night I was SORE. Buddy, I mean sore. I didn’t hesitate grabbing a pain medicine to make me feel better.

      That’s where I’m at now, I don’t hesitate. There is something to be said for those that ABUSE pain medication. I work in the Courtroom and I see it every single day. Someone is coming through the door that was caught selling/buying/taking some medication for pain illegally. But, when you take it according to your Dr.’s prescription, and it helps you though your day, and improves your quality of life – Then that is what counts.

      Sorry, this post is long. I feel pretty passionatly about this topic, as it is one that I still have struggles with from time to time.

      Hang in there, Guppy. And be safe.

    • Anonymous
      July 30, 2008 at 11:37 am

      but would like to add…..Why should it be any of that friend’s business what meds you take? Maybe they are well intentioned, but they do NOT have to experience the pain you are in.
      It’s like asking why one goes to a particular church or buys/eats particular foods… Their being ‘anti-medicine’ is their choice. You don’t have that choice right now. Make it an ‘out of bounds’ subject. Respect their own views, but make it clear that you wish for THEM to respect YOUR views as well. End of discussion!
      Maybe the concern is that old saying ‘But, you look just fine!’. Not many people can even imagine the pain we can and do experience to different degrees.
      I simply put that the pain is like that of having your arms legs etc dipped into hot french fry oil. Severe burning, but, from the inside out. That is something many can relate to in varying degrees, usually.
      It can be touchy if they are close friends, but true friends respect or should respect certain personal boundaries.
      I have a spare cane I can lend you to thownk some sense into them if you need it. Hope this helps.

    • Anonymous
      July 30, 2008 at 11:49 pm

      Family & friends may be well meaning but ultimately it’s between you and your doc. Only you can really know what/how much you need. You’ve gotten great advice here. Good luck and God bless.

    • Anonymous
      July 31, 2008 at 10:19 am

      Hi guppy, I totaly agree with all these posts. No one can understand your pain, not a friend, family member or doc really. I have a hard time describing the pain. I take Gababentin, generic for Neurontin 600mg 3x a day for nerve pain and Alprazolam 0.5mg 3x a day for stress and muscle pain. Even these sometimes do not work all the time but help most of the time. Our dearly departed good friend here at the forum, gene, gave me the advice of the Neurontin and REST, RESt, REST (the with your feet up rest)! I talked to my neuro after that about the Neurontin and he said Good Idea, lets try it and I started out at a lower level and he increased it until I thought it was helping. Sometimes I have trouble with the resting part and then pay for it the next day. Next time your friend gets on you, tell him to walk in your shoes for a week and see what meds he’d be asking for. I understand his concern with the vicodan bc it’s addictive but you know that, you’re not abusing it, it’s pain management. Take care of yourself!

    • Anonymous
      July 31, 2008 at 10:28 am

      I, too, agree. It is hard for others to understand because on the outside we look fine. No one can know what is happening on the inside. The decision to medicate needs to be individualized and based on pain tolerance, etc. I have a high tolerance for some pain and not for others. Even my family/kids think I am a hypochondriac. I say, let ’em think what they want to. I know what I feel, and until they are ready to educate themselves on GBS residuals, they won’t change. I don’t waste my time trying to explain. It is becoming something we just don’t talk about.

      If you need to medicate…do it!!!! And politely tell them the topic is off limits.