• January 13, 2015 at 3:47 am

      I am still waiting to begin my IVIG infusions..but the last few days the pain has become unbearable. I have constant stinging, cramps, and shooting pains throughout my whole body. It seems like this went from about a 6 to a 9 in just 2-3 days. Is this possible and if so how much worse does it get than this?

    • GH
      January 13, 2015 at 9:57 am

      The scale is zero to ten, so you have left only one step. But I don’t believe your numbers.

      Everyone’s experience with pain is different. Are you taking anything for it? I was taking oxycontin for awhile, but I got off it as soon as I could. You don’t want to rely on pain meds any longer than necessary.

    • January 13, 2015 at 1:25 pm

      Wish I had never ask this question..just wanted others prospective on their pain!

    • January 13, 2015 at 2:31 pm


    • January 13, 2015 at 3:30 pm

      PeteysGrandma this forum is for the exact purpose that you intended. A pain scale does help those who help or care for us professionally or otherwise. To have a way of relating to the pain that we experience. Pain isa totally personal thing. To show what I mean. When I walked into the ER 18 months ago I felt basically pain free within an hour or so I had my face turned to the wall crying, shaking all over with what I described as a full body charley Horse the only thing that helped hold back screams was trying to avoid upsetting my wife even worse, no relief and even then I kept telling them it was an 8-9!! Since then even with meds & therapy and so on I have not had less than a 3-4. So yes the pain can be a very real thing that many have to deal with day & night! What has helped in addition to the meds is trying to help others to the degree that we can and also as your name on the forum makes me suspect that you have a grandchild or two or more that may possibility help to distract from what is clearly a number of difficult health problems. I apologize for the earlier post as I am still finding my way around. GBS may be different on some levels from cidp but I hope some of this helps. Take care

    • January 14, 2015 at 4:37 am

      I wanted to crawl out of my skin before IVIG started.. i went three months with horrible sleep, as the creepy crawlies would wake me up constantly.. I have zings and shocks and tingly pain etc.. all sorts of discomforts. I take plaquenil for the joint pains and lyrica for the nerve pains – it has helped save my sanity.. I only take it at night time so I can get some sleep.. good luck!

    • April 20, 2015 at 10:22 am

      Hello I too have so much pain , had GBS also CIDP but I have multiple other things as well . Fibromyalgia, bulging discs {MVA} Barretts Esophagus ,Lupus . I have recently had to go to a new Dr as mine retired . I was sent to pain mang . I have never been treated so badly with no compassion at all . I left there feeling hopeless , and Iam just stuck not quite knowing what to do or where to turn next . Does anyone know of a good Dr in the Cleveland area ? Beford ? By the way this Dr Hayek please don’t go there you will be treated like you just don’t matter so sad . Iam so Thankful for this site !! I don’t want to bash Drs that’s not what Iam here for as I have had some of the Best , Neros, Pt Ot , everyone at the rehab where I learned to walk ,feed self , dress ect . Iam Blessed and Grateful . Just hoping to walk into this next chapter of my life gracefuly, and hopeful . I take Lyrica , was taking Soma , also vicidon , just started Cymbalta {hopeful !!} Thanks everyone !!!! And May God Bless you All P.s. Ive had 3 series of I.V.I.G as I relapsed Iam 3 years out

    • April 20, 2015 at 4:30 pm

      The Cleveland Clinic has a top Pain Management Dept here:

      There is also the University Hospitals Case Medical Center that specializes in pain management here:

      Hope one of these can work for you.

    • April 21, 2015 at 6:29 pm

      Hey Jim-LA Thank you soo much !!am sure this will help so Grateful you took the time !!! Yes I did fail to mention that I was new to this area . And when you have lived in the same area most of your life if can be a little strange finding your way around . Thanks Again The Info . Hope you are Well