Still Battling

    • Anonymous
      April 15, 2007 at 3:34 am

      Hey guys,

      I am still struggling with my CIDP. It has been affecting my muscles lately. I have been wearing out faster, and my recoveries from doing too much have been slower. Baths (which I used to enjoy) wear me out. I get out of the tub and need a nap.

      Most days it seems like I have 10 to 12 hours. After that extreme fatigue sets in. Those 10 to 12 hours still have foot pain, muscle soreness, etc. But after the 10 to 12 hours, I am wiped out.

      I am, like a lot of us, prone to over-do it. I sometimes look at my “window” as the amount of time I have to get it all done, and I cram in as much as I can. It’s just the way I am.

      I have tried laying in bed. I have bedded until after lunch, and the result is still the same, 10-12 hours. I have tried three days in the bed 12-15 hours. The only result was that I couldn’t sleep the next night.

      I honestly don’t know where this will be taking me. Has anyone found a regimen, or a suggestion to keep me going with less pain.

      My pains are: all through the feet (tops, bottoms, muscles, tendons, tingling, burning, nerve shooting), leg muscles decreasing in mass, (2 inches in the calf) thigh as well, leg muscles tire and then ache, hands tire, fatigue, numb and pain.

      I take neurontin, methadone, and drink a stimulating mint tea(which I enjoy).

      If anyone has suggestions , let me know.

    • Anonymous
      April 15, 2007 at 3:47 am

      Dick, I’m so sorry you are having all those problems, i hate to hear that you are in soo much pain and having such a hard time of it. i wish i could help, but i’m not really sure what i could offer that you haven’t already tried. try to keep up your positive attitude, i’m sure someone will be able to offer you some advice. sending you a BIG HUG! take care.

    • Anonymous
      April 15, 2007 at 9:55 am

      Dick, I’m sorry to hear of your pain… You seem to be asking for suggestions, rather than tried and true solutions… I will tell you that when I was is such pain that I could not sleep at night, the only way I felt relief was to lie in a recliner… I had bought a heating pad that vibrated (I never used the heat part) and that seemed to help me the most… Maybe I was just making my aching muscles numb, but I would fall asleep not long into the vibrating… I know that you are not supposed to fall asleep with one of those on, but the relief was so complete, and I was so tired that I would just drift off before I could turn it off… I also found relief from sleeping on an airmatress… Everytime I moved on it it felt like I was being massaged by a gentle cloud…

      Hope this helps… I know some are extremely sensitive to touch, so this would be an anathema to them, but for me it worked… 🙂

      Hope you can find something…

    • Anonymous
      April 15, 2007 at 12:55 pm


      First let me say that I’m sorry you are having a tough time. Pain can be so draining that I often wonder if that makes the fatigue worse.

      The two suggestions I have worked for me, and might be worth a try, since both are simple.

      For quite a while during recovery from GBS, I had pain, and pins and needles sensations on the skin surrounding my knees (isn’t it amazing what crazy kinds of symptoms GBS and CIDP can present us with?). I rubbed my knees with Vicks Vaporub (the kind made for babies because it’s not greasy and rubs in). Don’t know why, but this really helped a lot.

      Another thing I find helps the deep muscle kind of pain is an electric mattress pad. It works like an electric blanket, but is much more efficient and effective, because the heat comes from below you . These pads can be set to a predetermied setting, and will maintain the temperature. Also they are available with dual controls, so your sleep partner can set their side to suit their own preference. My king size one cost about $100 and I bought it online.

      Meanwhile, hang in there, and I hope you get some relief soon.


    • Anonymous
      April 16, 2007 at 11:57 am

      I think the extreme fatigue that affects most of us is really beginning to hit you. I hate to say it, but it is not just the amount of time we rest, but what we are doing the other 12 hours that really makes the difference. Pick your battles wisely, & do not overdo the 12 hours that you are able to function. I have learned the hard way that if I go to the grocery store on one day, I cannot do much else that day. I try to do only one thing each day & make sure I get plenty of rest afterwards. I know it is not easy to hear, but if I overdo it, my pain is much worse. I am very type A, so I know how frustrating all of this can be, but we have to listen to what our bodies are telling us. I think you are just trying to do too much.

    • Anonymous
      April 16, 2007 at 12:29 pm

      My husband Alan has had neuropathy for 18 years. What works for his feet is that he puts Blue Stuff (or Blue Emu) it goes by many names!!

      He rubs it all over his toes, between his toes (it’s really bad there) and over his feet and ankles. He rubs it good.

      Now for him, it works, I have no idea why, but before he retires for the night, he rubs it in, and it takes away the burning and the pins and needles.

      Don’t know if you have tried this or have ever even heard of it but it should be available at your local drug store chain.

      Take care,

    • Anonymous
      April 16, 2007 at 12:55 pm

      Hi Dick,

      I wish I had a few suggestions for you but I don’t. Sorry you’re having a bad go at it. Maybe you are doing to much in that “window of time”.

      Are you going to therapy at all these days? Frank had lost all muscle mass
      but he did mimimal therapy because he couldn’t do to much in the way of PT.

      Wish I could take away your pain. So instead all I can do is send you big hugs.

    • Anonymous
      April 21, 2007 at 1:46 am

      I went to my GP yesterday. I sat in the office a long time (2 hours) and by the time he got in I had a lot to say.

      I probably took too long to go. We talked about pain, and pain management. We talked about breakthrough pain, and how the methadone worked.

      We worked around and came up with several things that I hope will work.. First I got some extra pain pills, percoset, for intermediate pain relief.

      The next thing was some flonase. I have been suffering from clogged up at night, and not sleeping well. I have sleep apnea, and when using the CPAP mask, iot has been difficult to keep a good seal of the mask, and get good airflow. As a result, my sleep has not been quality sleep, and I am sure that has made a diference.

      A day and a half with extra pain meds, seems better. I’ll know in a week.

      Gosh, I hope this helps.

      You guys have had some good suggestions. I like the Vicks. I let some “blow in” the CPAP. it helps I think.

      I sleep in a waterbed, and it is temp to about 90. I am close to the heater. Sometimes it gets too hot !! But I enjoy a warm bed. As to the vibration stuff. It helps my back for sure. Whenever I get my wife to help.(hard part) I will keep on trying vibration for the feet to see if the stimulation helps.

      Thanks so much for the help.