Old medicine for CIDP related pain

    • Anonymous
      August 26, 2010 at 9:11 pm

      To all who’ve asked about pain relief,

      Although still on some opioid pain relievers, the pain mgmt doc trying to come up with some solutions w/o increasing opioids, said let’s try this: prolixin, or fluphenazine. My daughter (35) is still on the major pain drugs, but by adding this it has given her relief even to the point that she actually admitted she feels better. And she does not ask or beg for additional pain meds.

      Keep in mind, she still has pain, still after 2 years + cannot walk, but at least has good movement in arms and legs (she had none), but the pain has been unrelenting. This seems to be doing something favorable.

      Prolixin, or fluphenazine, 1 mg. 3 x day. Easy to take, no adverse reaction. The docs should not be reluctant to Rx this drug only fell out of favor because the pharm. co’s do not make as much on it.

      I’ve not seen where anyone on the forum has tried it. But I think one must ask for it, since her pain doc said it is an old med (well, 50 years is a long time for a med) and some of the younger docs may not have experience with it.

      Hope this helps some or all of you.

    • Anonymous
      October 1, 2010 at 3:53 am

      Thank you for the specific information about pain meds. I have mild pain,
      that keeps me from sleeping, and the tramadol, that was prescribed, seems
      to make my feet swell. I have tried over the counter meds, and NONE of
      them significantly affect the pain. I was prescribed Tylenol #3, but it is
      the same type of drug as tramadol, and the swelling remained. I don’t know
      if the pain in my right leg, the one most affected by CIDP, is caused by the
      CIDP, but it is there only at night, and when I get up, it usually goes away.
      Doctors don’t seem to know, what is causing the swelling, or the pain, and
      since it is mild pain, I don’t understand why simple pain relievers, like tylenol
      or aspirin, don’t help much. I’ll ask my doctor about your recommendations.
      I am severely sleep deprived. It took me three days to balance my checking
      account. I kept falling asleep, and making simple mistakes, like subtracting,
      when I was supposed to be adding. It’s 4:00AM, and I haven’t had any sleep

    • October 1, 2010 at 5:14 am

      I think there should be more trials with other pain meds. Seems the only reason drs are pushing the new stuff on us is to use us as guinea pigs and make a buck. I am so sorry your dd is going through this, please send her a hug for me and prayers too.

      I know that OTC stuff does not work for me either. I have to be really bad and in tears to contemplate the “good stuff”. I have tried every cream, natural route (except acupuncture or massage), supplements I can’t afford right now, and I am beginning to wonder if the Savella is even working anymore. It might work for her though if she hasn’t tried it and can take it with her other meds. I see you have contacted a pain management doctor…so ask because even if our “pain” is invisible it is still real and needs to be addressed.

    • Anonymous
      October 3, 2010 at 4:34 pm

      I too have severe pain, mostly because of a couple of conditions in my back. I see a pain managment dr for this & he has rxed a controlled substance for my pain I take it 3 times a day,, every 6 hrs as need for pain. I have also found that with my Lyrica, Baclofen for my gbs & the pain med also help with gbs pain as well The only downside it makes me tired at times & that is a side effect. But I still have the numbness , tingling, & twitches, But pain seems to be controlled. Especially with back !!When it gets bad I have tears running down my face even if im just sittin there.
      I’m glad Nic has found a drug that helps her.
      I’m thankful that these drugs our at our accesibility to help us.
      I have also gotten cortisone shots ( Kenalog ) is the kind. in my back The last shot I got I got in my lumbar sacral area & it seemed to help pretty good , 2 down falls I could not do anything bent over in my wheelchair or anywhere , because I know the pain would be so severe. & the other down fall I’ve had 3 injections total & with all 3 they extended my menstral period anywhere from 2-3 weeks, this last shot it was a 3 weeker. Horrible !!
      HAD to go to gyn to get progesteron for 7 days to get me back on track. I have 3 days left. we’ll see how long this next one will last. I’m hoping it should be normal since I had no Kenalog shot lately.
      Bestwishes to you & nic