Question about pain meds.

    • Anonymous
      October 29, 2007 at 4:56 pm

      Hi All,
      Since I am again minus a Neurologist for now, I wonder if anyone has found an over the counter med that relieves the terrible foot and lower leg pain. I take Lyrica and Cymbalta and that does not help. I will see a new Neurologist in Kansas City in Jan, and that seems a long way off. Hurts so, I put my walking (with walker) off and just use my Jazzy. I have some prescription pain meds, but they are addictive and I dont want to use them. Any help is appreciated and Happy Halloween Regina

    • Anonymous
      October 29, 2007 at 9:44 pm

      What about seeing a family doctor for pain meds?

      I take Gabapentin. Can’t walk without it too much pain.

    • Anonymous
      October 30, 2007 at 12:20 am

      If the opiates work for you, and give you a better quality of life then why not use them. They are intended and prescribed for people like us. I have never found any otc drugs that helped me at all for the killer leg pain, and opiates get me through it really well. If it were a choice between walking or taking narcotics, the answer is pretty simple for me. Lyrica, elavil, topamax etc. never helped me either.

    • Anonymous
      October 30, 2007 at 6:15 pm

      my family doctr prescribes my pain meds because if i had to wait for a specialist i would be in pain all the time. I take lyrica and lorecet and i have fentynal patches 75mcg i change every 72 hours. It makes it almost tolerable but i have never found anything OTC that helps at all. Good luck to you.

    • Anonymous
      October 30, 2007 at 7:10 pm

      Hi Regina,
      I’ve had gbs/cidp for 10 years now. Initially was on heavy duty narcotic medications due to the horrific burning and aching pain in arms and legs. Now I’ve been able to taper off to taking the neurontin and methadone 3 x a day. I do not feel I’m addicted as when I am doing better I reduce my methadone and have never ended up taking more than necessary. I too, would love to take something that didn’t have such a negative connotation to it, but there isn’t anything that cheap and that works that good for me anymore. I tried both cymbalta and lyrica–didn’t work, also many other pain meds don’t work for me anymore.
      I just feel that to live in so much pain just isn’t worth it, I’d rather have a better qualilty of life with pain meds than without.
      Hope this helps,

    • Anonymous
      October 31, 2007 at 10:13 pm

      but tend to save them for what I call KEY times. They can be a mixed blessing and curse as they numb things well in some aspects but too well for others. But I tend to put them on [the patches are about 4″ x6″ and I cut strips to fit the places used] in advance of anticipated pain from extra movement or situations where I might get to fidgety without this help. They are ‘restricted’ type drug patches ,but I do not think as strictly regulated as Fentynil patches or the like.
      As I said tho, sometimes they seem to work too well? in that my feet go really truly numb and as I still drive [with them] it can be a scary thing to do when you have no clue where your feet really ARE when driving?
      You have to absolutely balance the use of pain medications to what you want to do or try to do. Yes, some opiods are considered ‘evil’ in many situations, but you also have to balance your pain with whatever you are doing [not to mention your mental alertness]. IF your pain is severe enough it probably isn’t or shouldn’t be an issue, unless you are operating heavy machinery? The ‘one daily’ is not the same as several a day, is it?
      Critical for your circumstances is finding a balance with the pain medications and other medications as well as how you are trying to life and work and function. Learning your limits and then working with the medications in a constructive way is key to well, ‘getting by’. For many, just ‘getting by’ is not a bad thing to do.
      Hoping for the best in the near rather than far future.

    • Anonymous
      November 1, 2007 at 7:17 pm

      I don’t know what kind of pain some have that any ole over the counter med helps. Lisa and Jody, I agree with you completely. I will take narcotics, prescribed…I had better say that, and have some kind of life anyway. I would be dead if I did not get something to kill the pain for me. I think you can just take it so long and then something will happen…like get the med you need or kill yourself. Don’t get me wrong, I would gladly take a apsirin if it helped me with the pain, but no such luck with me. Lisa, the pain clinics use the methadone on people who are addicted to drugs and they need more and more of them. Lisa, there is nothing wrong with useing Methadone, and I am not there yet, but will use it when or if the time comes and the pain clinic thinks I need it. Ya’ll have a pain free night.
      God bless,

    • Anonymous
      November 2, 2007 at 5:51 am

      My beloved wife awoke July 17th feeling like her nerves and muscles were on fire. She continued to have muscle pain and tenderness for several weeks and then began getting weakness but not too bad. Then at the end of September she got dramatically weaker and by Oct 1 was falling.

      She saw a neruologist on Oct 12 who diagnosed CIDP (I’m a family Doc and had never heard of it, though certainly of ‘atypical GBS’). We started IVIG 2gms/kg on Oct 13. She had a repeat dose of 1gm/kg two week later (last Monday).

      She continues to get weaker and is having all kinds of wierd and painful sensations mostly in the feet , legs, hips. Her arms and hands are a bit tingly and weak too.

      I’ve read a lot of the threads here, and have a few questions:

      I still worry that since there has been progression since starting the IVIG that the diagnosis may be incorrect. (NCS/EMG showed conduction block and some axonal damage in the legs, LP showed elevated protein, there is areflexia) It seems though from talking with now 4 different neuros, that it’s the only real possibility. Any thoughts?

      Secondly, I don’t really know what to expect from the IVIG. I’ve read that people who respond do so anywhere from 24 hrs to 6 weeks after beginning treatment. Our plan now is to tx every two weeks for the next six weeks before moving on to other treatments. It’s hard to wait though when I see her wasting away and in so much pain.

      So there it is, I’m looking forward to posting here regularly as we deal with this. As you all must know, it’s pretty awful to witness anyone’s suffering especially one’s partner.

      Thanks in advance for your responses.



    • Anonymous
      November 2, 2007 at 8:06 pm

      First, you may want to cut and paste your post into a separate new post, as that might get more attention and responses – however, I’m happy to reply here.

      For me, IVIG has never provided a rapid turnaround, however it does a reasonably good job of keeping the basic progression slowed. My case of CIDP is the Lewis-Sumner or MADSAN variant. It is somewhat slowly progressive, asymmetric and primarily motor (about 1/3 sensory) that has been marked by one very severe and acute exacerbation that lasted well over six months and has left me severely disabled for the past 18 months. This exacerbation raged despite a battery of treatments. Finally, an aggressive combination of plasma exchange and IVIG nipped it and with time I recovered strength. Give the IVIG time, as your wife’s neurologist suggests. Maybe she should receive treatment for pain as well?

      Her symptoms, and the time-frame of their development certainly sound like CIDP. I know that in more slowly progressing cases, such as mine, there is the thought of underlying malignancies of the blood or lymphatic system that may be at play, but it seems more rapidly developing cases such as hers are not as likely to be a result of that?

      Anyhow – best of luck to you and your wife.


    • Anonymous
      November 2, 2007 at 10:58 pm


      Last weekend, the Philidelphia group had a chapter meeting. The speaker was Dr. (sorry, I am going to get his name again from the foundation and post it for you)…… There were a number of CIDP patients in the group and he answered a number of questions regarding treatment, what was effective, what to do if certain treatements werent effective etc. Here are some of the notes I took from his answer and question time. ….

      # As we know, certain varients of CIDP react better to certain treatments. He said that in his experience, if the patient did not respond after 2 or 3 IVIg therapies then he added sterroids to see if there was a response.

      # next step would be (I think the IVIg would have been discontinued when following this step), High dose sterroids everyday, then change it to every other day and add Cellcept or similar (up to 3g), and then lower the sterroids more.

      # Then if that didnt work, he would try Plasmapharesis

      # consider Retuxan (sp?)

      These are from my notes, and I was trying to write them down as quickly as he was speaking. He was responding to a patient who asked him what would his treatments be if IVIg failed and what steps would he follow to find one that did work. He also mentioned a couple of treatments that may work for CIDP, but they have been removed from the market because they are so dangerous, so there is a possibility way down the line that some trials may be considered with some of these drugs, but that is still way down the line if it happens at all.

      As I said, I will get his name again and will forward it to you. Also Im sure you are well aware that whatever I have written is not medical advice, but just notes I tried to make as he was answering someones question. Doses and all other information would need to be clarified and checked with someone who is knowledgeable with CIDP.

      P.S. I KNOW THAT other CIDP patients would have a great deal of info (I’m GBS), thought the above may be of help to you.

    • Anonymous
      November 3, 2007 at 12:20 am

      I sent you a private message. When you come onto the forum, just click on the link that says Private Messages in the upper right hand corner. I also think you should post a separate new thread about your wife, as more will see it. Let us know what her current physical condition is. I would say that it is probably time to try a new treatment if IVIG hasn’t given her any improvement yet, she certainly should not be getting worse while on it. IVIG did not work for me either, but there are a lot of other treatments out there. Ali’s info was very good & up-to-date on CIDP treatments. Hope to hear more from you soon…

    • Anonymous
      November 3, 2007 at 7:48 pm

      As a follow-up to my reply, I actually do agree, after re-thinking my post, with what Pam H. suggests regarding looking NOW for an alternative/supplemental treatment to IVIG. Since your wife’s symptoms have developed fairly quickly, it seems that she should also respond quickly to IVIG if that were going to be the tx that would do the trick. IV Solumedrol might be an alternative to bring up with the specialist? I know this is a successful protocol for some. For me, it was a disaster and hastened my exacerbation in a negative way, but I believe I was out of the ordinary on that. Solumedrol evidently has fewer long-term side effects that oral Prednisone, unless you are on it for a very long time. I was only on IV Solumedrol for about 2 months, and may have received a total of 25 grams over that time period.

    • Anonymous
      November 5, 2007 at 3:12 am

      Thanks, I will post as a new thread, I appreciate your help.