CIDP & Pain Mgt – Namenda?

    • Anonymous
      July 2, 2009 at 8:40 pm

      I was diagnosed with CIDP last fall and was fortunate enough to be placed right on IVIG treatments. While that has helped my energy, my pain continues to get worse. Seems like there really isn’t anything that helps much. My neurologist recently started me on Namenda … he stated it was developed in Europe for neuropathy pain but has been found to be effective in slowing down moderate to severe Alzheimer’s.

      Is anyone else using Namenda?

      Also – I can’t get over how much pain I have! I was told CIDP usually does not present with this much pain … anyone else out there having trouble getting the pain under control?


    • Anonymous
      July 2, 2009 at 8:46 pm

      hi Linda

      I have not heard of your meds but my son ryan is on neurotin he takes 900 mg 3-4 times a day. he has been having terrible nerve pain the last week. not sure why but the pain does go along with CIDP.
      I spend a lot of time stretching his legs and feet that is where most of his pain is. that seems to help some as he says his joints feel very stiff.

      Good luck I hope you get some releif soon!!

    • Anonymous
      July 2, 2009 at 8:53 pm

      Thank you Rhonda,

      I’m so sorry to hear your son has this … it’s confusing enough at my age, but can’t imagine a child going through this.

      I am also on the neurotin but for a total of 900 mg (300 at dinner and 600 at bedtime) plus a boat load of other things. I am to ramp up on the Namenda – takes four weeks before at full dose, then, if all things work well and possibly if I hold my mouth, hand, leg, whatever right, then I will be slowly weaned off the other stuff.

      I’ll post my experience – hopefully it will help someone else.



    • Anonymous
      July 2, 2009 at 9:23 pm


      I have noticed an increase in pain since getting IVIG. Thinking that the more I become able to do, the more pain I get from doing more.

    • Anonymous
      July 2, 2009 at 10:42 pm

      yes please post your experience it will help someone. I just hope you find some relief from the pain. every night when I stretch Ryan I pray over him. I just can’t imagine what he is going thru. what any of you are going thru. My heart breaks for him. He is 20 and has such a bright future and to have to now deal with this awful disease for the rest of his life totally sucks!
      tjrpt6- I see u say u have teh multifocal for of CIDP what does that mean? I have googled it but all of the medical mumbo jumbo is hard to understand. as I think there is more to my sons CIDP and I am trying to find out about what types of variants are out there.

    • Anonymous
      July 3, 2009 at 3:20 pm


      This is another Rhonda…I have CIDP and have lots of foot and leg pain.

      I take 600mg of Gabapentin three times a day. I also take nortrypline at night for pain.

      The IVIG helps but does not take away the pain.

      I use a hot rice pack to help as well.

      Take care,

    • Anonymous
      July 3, 2009 at 6:26 pm

      I have been having alot of pain in my feet and hands as well. My doctor upped my IVIG, but I still have pain. I have tried antidepressants and the only one so far that helped was the Cymbalta, unfortunately I could not take the side effects. My internist gave me Ultram for the pain, but that seems to not be working like it did, it only took the edge off of the pain. I have tried to google reasons for such pain and have had no luck. My Neuro is baffled also. My question is, could there be a different type of doctor to see for this? I do have mild osteoarthritis in my hands, but it would not cause this much pain and there is also pain in my feet. It seems to get worse near the later afternoon and night. Hope you can find an answer to your pain, I know how frustrating it is to have it and not be able to control it.
      Clare in Michigan

    • Anonymous
      July 5, 2009 at 11:27 am

      There are three neurologists where I go … between them, they treat about 30 patients with CIDP (one advantage of being in a large metropolitan area with a world renowned medical center!!!). They also have an infusion center at their clinic and so I go there to receive my IVIG treatments.

      My doctor tells me I am baffling him by all the pain I continue to experience despite all the cocktail of meds I take. I see him again tomorrow – he’s talking about running more tests to see if there is something else going on besides CIDP. [B]Clare, he did tell me that any other problems that I might have could have that pain amplified by the CIDP. But he mentioned that I might need to see a specialist for arthritis … I’ll let you know.[/B]

      I’m sorry for everyone that has this much pain – I didn’t know I could hurt so much! But after hearing from my doctor that he is not used to seeing this much pain in his patients and then hearing from y’all that you are experiencing the same thing does help me feel like it’s not all in my head!

      BTW – I fully trust my doctor, he’s wonderful! He doesn’t rush me and will spend up to an hour with me going over everything each time I see him – depends on what is going on – but I truly feel I have his full attention during my appointments. He never rushes me and we discuss everything that’s happened since the previous visit. I keep a small weekly planner in my purse and use it to track how I feel after what activities I did, what changes were made in meds/supplements/diet and when … etc. We go over that little “diary” everytime I go to see him. He also looks at it to see how my hand writing is going – sometimes it is very difficult to read because I can’t write correctly … and so we see if that is related to anything I’ve done. We look for cycles and triggers (OK – cause and effect! LoL). It’s been very helpful. His wife is also a doctor and specializes in pain mgt (mostly in children as she is a pediatrition) and he tells me they “consult” on my case! I feel God really Blessed me with my doctor!

      The Ultrim didn’t work for me either, Clare. So now I take a cocktail of stuff (posted it all in the thread “pain, pain, brutal pain) for my pain. I agree with you, Rhonda, that heat helps! So I use my hot tub a bunch as it feels soooooo good to sit in it and just let my arms and hands float as they feel the best when there is no stress on them at all. I use heating pads when in the house and at work, take supplements that I believe are helping and go to physical therapy 3 times a week. I am reading everything I can and will do everything I can to control this illness. I will not give up, but I also know this caused a permanent change in my life.

      I also am fortunate to have “reasonable accommodations” at work that allow me to continue to work. I go into my office Mon/Tues, telework from home Wed and then back in Thur/Fri. It’s nice to have the midweek break where I don’t have to get out of my PJs… I also can go in as late as 10:00 and so that has cut down on how much work I miss … but I still have those heavy pain days – hence the Namanda.

      Ryan is fortunate to have you Rhonda! The stretching is the best – I have a foam roller I got from PT that helps with the stretching. Does Ryan have one? I live alone so I have to use things I can do by myself. I do have friends that pamper me some … so that is nice … but I still have to work and take care of the daily stuff. But after reading so many of the posts, I feel really fortunate despite my challenges that I can continue to work and live alone.

      I know I’m writing lots – but it feels so good to be in contact with other people that understand.

      God Bless All,


    • Anonymous
      July 5, 2009 at 11:38 am

      no ryan doesn’t have a foam roller. we had heard about them but not tried it. we are currently in process of making a mat table for him to do his pt on since he cannot get on the floor. He doesn’t have enough strength to get up off the floor and we cannot lift him off the floor.
      Does the roller hurt to use? someone told us the roller will work u out and it hurts thats why I was wondering if it hurt.

    • Anonymous
      July 5, 2009 at 1:31 pm

      It doesn’t hurt me … it feels good. I needed help at first to get on it and keep on it because of equilibrium issues, but now I can do both without help. But I’m not as physically impaired as Ryan, so don’t know if he would get the same results. It alleviates some of my pain – straightening my spine while getting a good stretch. It’s my favorite of the exercises I can do.

      I’ve added Ryan (and you) to my prayer list,


    • Anonymous
      July 9, 2009 at 11:06 am

      Maybe we will try the roller.

    • Anonymous
      July 9, 2009 at 1:11 pm


      I hope the roller helps Ryan … I know you will have to help get him on/off because of the balance issues, so please let me know how it goes.

      On another note, I have been on the Namanda for 9 days now and I feel a lot better! I can’t wait to see if I can get off all the other stuff and just continue with Namanda. But what a difference in my pain a week has made!!!

    • Anonymous
      July 10, 2009 at 1:57 am

      My first visit to the neurologist I asked if nerve damage hurt.
      He said YES YES.
      Please see the other posts on CIDP/Nerve Pain. It can be absolutely horrible. Good post on the GBS section too. Nerve damage just isn’t numbness.
      If your doctor hasn’t had a CIDP patient with pain then that is unusual. Very.
      Our bodies are attacking and destroying the myelin sheath.

      You need a pain consult. Some meds work and some don’t. I’ve tried them all and only heavy duty prescription narcotics worked. I’d rather not be on them but I no longer go into my closet and scream till I’m hoarse.

    • Anonymous
      July 13, 2009 at 4:36 pm

      Hi Linda

      You have me hopeful for the first time in four years. I was dx in May 05, but my Neurologist left the area. I have “shopped” the area for a new one, but to no avail. Tried Mayo in MN> got no relief. I have not had IVIG since 07 and now am off all meds, as nothing helped the pain. The pain is not as bad as in the beginning, but it is there 24 – 7. I talked with my druggest today about Namenda and she could not find anything about it treating Neuropathy. I am going to get an appointment with my internal med. Doc and see if I can talk him into it. Do you have an info I can direct him to regarding its use for neuropathy or perhaps he could contact you med center.
      I am always in a wheelchair, have great AFO’s but cant walk or wear shoes due to the pain. Thanks for the ray of hope. Regina

    • Anonymous
      July 13, 2009 at 8:30 pm


      I will be so excited if this helps you as much as it is helping me!!! I just completed 2 weeks and have 2 more to get to maintenance level and I am very impressed as this is the least amount of pain I’ve felt in almost a year!!!!

      Hope this helps your doctor to allow you to give it a try:


      It’s a very good article about it helping both neuropathy and alzheimers – very exciting to me (especially as I grow older 😮 ). If for some reason you can’t follow the link, let me know and I will copy the article and email it to you.

      I am so grateful for sites like this allow us to share information … I’ve only been on this website a couple of weeks and I’m loving it!

      Good luck and keep me posted!!!!!

    • Anonymous
      July 14, 2009 at 11:26 am

      Dear Linda, Bless you. I found the site and will be printing it out and get it to my Doc., he not a Neurologist, but is usually very helpful. Bad part about living in this part of the country, not much in the way of medical centers.
      I will certainly let you know what happens. Will probably be a while until I can get an appointment but here is hoping. Hey, about OLD, my “baby” is turning 40 tomorrow and I will be 70 in two weeks. Yikes, can be possible.:D
      Thank you so much… Regina

    • Anonymous
      July 14, 2009 at 8:06 pm


      I can’t wait to hear if this works for you! I realize we all need some things to be different in our treatment and have read enough on this site to see that what causes me problems, can bring someone else relief … and I know it’s still new and not being used in all the ways it can, but I am encouraged that at least the idea that neuropathy pain cannot be treated with a traditional pain approach is being studied and someone is trying to do something about the pain from pn. I don’t want to give anyone the idea that all my pain is gone as it is not, but it is reduced significantly!

      Talked to my doctor’s nurse today and starting end of this week, we are going to start weaning me off some of the other meds. I have IVIG Wed and Thur this week, so will start reducing Friday.

      Ok – you have a decade on me, but at our ages it is not that much different – just gets a little more accelerated each passing year. Congratulations!!!!! And an early Happy Birthday!!!:p

    • Anonymous
      July 15, 2009 at 12:14 pm

      I have been reading this forum for a long time, and vainly searching for anyone with very painful CIDP. I have been steadily losing my sensation over the past 20 or so years. I have been thoroughly poked, prodded, scanned, and lab tested for everything that has been known to cause neuropathy. (Not Multifocal) A sural nerve biopsy several years ago confirmed the CIDP, and I have some elevated proteins in my cerebral spinal fluid and now some findings with nerve conduction studies. Other than that, I continue to be “normal”. My reflexes are slowly deteriorating, but for the most part are not that abnormal. I am strong physically and have only recently begun noticing muscle weakness. But four years ago I broke my big toe and never felt a thing. Ended up having surgery and had to nurse that toe for many months to get it to heal. Last year I stepped on a tack through my shoe and ended up with a terrible infection in that foot that took many months to clear up. I am not diabetic — the first thing everyone asks me. From just below the knees down on both legs, I have no skin sensation — I can feel pressure but I cannot feel hot or cold or pin pricks, broken bones etc. I recently was stung by a wasp on my ankle. It was an interesting experience because I sat and watched him sting me and couldn’t feel a thing.

      This complete numbness was preceded by years of agonizing pain that no one could explain. I sustained a severe injury to the L4-L5 disc about 20 years ago and subsequently two surgeries. And even though it was mainly right-sided weakness that I had, the doctors just always attributed my bilateral neuropathy to that in original injury. About 6 years ago it started to affect my fingers and I knew then that I had something else going on. (Actually, I had known for years but could not convince the docs who just thought I was crazy)

      Currently I am suffering with that agonizing pain in my hands. I cannot bear to touch or to be touched, and I have spasms in my arms that I have determined run along the nerve paths. My fingertips are numb, and I have lost the ability to feel hot or cold in my wrists and hands. My arms ache, tingle, burn and twitch- from the neck down. Because my job requires a lot of computer work, I struggle to meet my deadlines and do the good job that I know I’m capable of. They have given me Dragon software (a hands-free dictation system) and I am still the process of learning how to use it. But that does not help with the chronic fatigue and constant ache or the unsteady gait and lack of energy to do those things that I used to find enjoyable. Some days I find the pain unendurable. My docs are free with the pain medication, but that just makes me more tired and less able to do my work. I have tried every thing anyone has ever suggested — diet, exercise, acupuncture, supplements. Biofeedback has been the best thing I have found — but it puts me to sleep-and while it relieves the pain, I certainly can’t work that way.

      And then there is the electrical storm that seems to travel up and down my body. My husband reports that my body literally comes off the bed at night when I am sleeping and have what my children call “one of mom’s seizures”. It feels as if a lightning bolt hits me and travels through my body. These can occur anywhere in my body and any time of day or night. I usually can identify the starting point and the endpoint — a very strange sensation and often very painful and embarrassing when occurring in public. Sometimes we can see little spasms in different muscles — it looks like little bugs are crawling around under the skin.
      I have been treated with IVIG and methyl prednisalone every month for two days at a whack, and this seems to help for a time… but the benefit period seems to be shrinking, and the two days from work each month have eaten my sick and vacation time up. The nerve involvement is progressing steadily… lately it seems on an accelerated course of destruction. I spend my days longing for the time of day when I can curl up on my bed and sleep.

      I am waiting for my doc to complete the needed paperwork for a trial of Rituxan- recommended by a specialist in Boston. I have heard some people have had good results with that. And I am hopeful.

      currently I am also taking a coctail of medications… and still I hurt.

    • Anonymous
      July 15, 2009 at 8:28 pm

      Linda – I am really excited to know if the Namenda does help the pain and lasts a long time with no bad side effects. I still have so much pain and my neuro. is baffled, but still insists on not giving me any pain meds. I am going to see my internist and ask her if I could try the Namenda also. I do take my husband’s (he does not take them anymore) Vicodins. I usually take one a week. I use them when I have a day where I need to function without pain. I pray the Namenda works for you. Let us know your progress with it.

      Maggie – I know what you are going through with the pain. It is very frustrating and depressing. I was doing medical transcription at home and finally had to quit because of the pain and stiffness in my hands. I also have terrible pain in my feet. I sometimes get pain up my legs and arms, but not that often. Lately my pain in my feet and hands are 24/7. I have woken up at night by a big jerk in my body. My husband says sometimes I jerk alot in my sleep. (It’s probably me dreaming about hitting my neuro in the head until he comes up with an answer). If I can not get any relief from my neuro or internist, then I will go see a pain management doctor, at least he will help get me relief from the pain. I pray you get some relief soon. Keep posting, it really does help to have people to talk to who understand what you are going through. I know it makes me feel better that I am not the only one who is in such terrible pain all the time and that they know what it is like.
      Clare in Michigan

    • Anonymous
      July 15, 2009 at 11:59 pm

      Clare – you made me laugh out loud! I enjoyed your explanation of why you jerk so much at night … I know I’ve jerked myself awake from a dead sleep and now I’ll always have the vision of slapping my neuro on the back of his head! LoL!!!! As this has progressed, I’ve discovered TV programs (watched very little TV before) and am enjoying reruns of NCIS. Like the idea of that head slap move …. :p

      I’ll post how this goes – I’m on a boat load of other things right now for pain mgt and have hydrocodone for the really bad days. However, I was using 1 – 4 a day and so my neuro recommended the Namenda and I haven’t needed the hydrocodone like before since I started. I can’t believe your neuro doesn’t want to prescribe anything for your pain – he needs much more than a head slap!!!!

      I wish you the best also and thanks for a good laugh!!!:D

      Maggie – my heart goes out to you. I’ve had spells of unrelenting pain that lasted months at a time, but I have not been dealing with this as long as you have and I don’t have the injuries you have. I will be very interested in hearing how you feel with the Rituxan – I don’t know much about this med but am researching it now!

      Even with the Namenda I still have challenges with the pain in my hands but it is somewhat diminished and I am somewhat hopeful!!!

      Let’s keep each other posted!

    • Anonymous
      July 16, 2009 at 1:56 pm

      Clare, you also made me laugh out loud! And that seems to happen less and less, so many thanks to you!!

      And to the rest who responded, I truly appreciate finally talking to someone else who understands some of what I am dealing with. I have been trying to get into this forum for many months – and have had to settle with being a voyeur for some unknown reason. I got the impression (until some recent posts) that pain was not a big part of CIDP for other people… I can now ask the questions that are rumbling around my brain… but now I cannot think of them.

      I printed off the info on Namenda for my pain management doc… (one of my list of docs) whom I see this afternoon. We just started Methadone last month… still on a very low dose, and not sure how it will work as we creep up the dose, but I am always hopeful with new treatments. Must stay positive! (maybe that head slap thing would help with the attitude??)

      I am Blessed that I have managed to find a neuro who understands, and a pain management doc who also works with me… I have been to those “other” kinds of docs — the ones who have no answer, and make you feel as if you are not worth the time spent on finding answers… I spent close to 10 years searching for a doc who at least had an idea. She is a bit “flaky” and works only one day a week in the private sector, but is exceptionally bright and specializes in peripheral neuropathies… seemingly a rare thing. Migraines seem to be the going specialty around here…or MS.

      If I have learned anything over these years, it is that you should continue searching until you find a doc who at least validates what you’re going through. Even if we don’t have an answer, at least we can discuss the options.

      Here’s wishing you all a pain free day! Or at least a day where the happy things are more memorable than the pain!!

    • Anonymous
      July 19, 2009 at 11:30 pm

      Almost at week three of the Namenda and feeling less pain and able to do more! I really am very excited at the results so far – I really pushed myself over this past weekend doing things I haven’t done this calendar year and I am having no repercussions from all my activity!!!!! This week I start backing off one of my daytime meds – it will take about 1 1/2 weeks to get off that one completely. I can’t wait to see how that goes … but I am very encouraged!!

    • Anonymous
      July 20, 2009 at 12:03 am

      Hey Linda – It’s great to hear you are doing good on Namenda. As you can see it is midnight and I am up yet because of my pain. It has been horrible the last few days. I go see my internist tomorrow and I am hoping she will consider the Namenda. There is nothing better than to have a pain free day. I am also considering finding a new neurologist. You had a laugh from my experience with why I thought I jerked in my sleep, here is another giggle. I was sitting with my daughter (she’s 13) and my mom at the kitchen table and all of a sudden my hand cramped up and my fingers curled in except for the middle one (you know which one that is). At first we just looked at my hand and then started laughing about how it looked. I looked at my daughter and said, “I hope this doesn’t happen when I go up for communion just as the pastor puts the wafer in my hand”. We started laughing so hard. It really does help to get some humor in your life. Well, I hope your pain will be gone with the Namenda and that it has no negative side effects for you, which it does not seem to have. You must have a very good doctor. Have a good day tomorrow.
      Clare in Michigan

    • Anonymous
      July 21, 2009 at 12:51 pm


      You are a funny lady – I love reading what you post because you seem to always manage to add some humor. I know what you mean about the funny things … not too long ago I was trying to make myself a sandwich. I was standing in a corner of my kitchen counter – facing one counter with another on my left. I was trying to open the lunch meat – you know one of those pull apart packaging things. Now my kitchen scissors were right in front of me, but I was having one of my very rare (:rolleyes: yeah – right!) stubborn streaks and decided to give that lunch meat package one last big jerk to pull it apart … well, it worked, but I jerked so hard, the meat came flying out of the wrapper in one big lump, flew over my left shoulder and landed on my lunch plate! Cracked me up! I think between all of us in this forum, we have enough to write a GREAT sitcom!

      Do you ever get “phantom” senses? By that I mean that your body is telling you to feel something you know is not happening??? Not too long ago, I was sitting in my living room visiting with some friends when I had the sensation that cold water was running down my leg. I kept brushing at it until my friends asked me what was going on and I explained … then got that look … then we all laughed. That one was funny – but I also leaned against my console in my car and it suddenly felt like I had several ribs cracked/broken. 20 years ago, I cracked 3 ribs in a sail boat accident and it felt like they were broken again. That feeling lasted almost 2 weeks and it was painful (even though I KNEW there was no injury)! Have you experienced anything like this?

      And now for the drum roll – how did it go with your internist? Are you going to try the Namenda? I pray you will get some relief quickly! The rest of this post is just filler – this is the question of the hour!!!!

      I do have a very good neurologist. He is married to a pain mgt specialist and so I feel I am getting two doctors for the price of one because my doctor tells me he consults with his wife on pain mgt issues and she is the one that told him about the Namenda. What I really like is that I never feel rushed by him – when I go to see him, he usually spends anywhere from 30 to 90 minutes with me. I find that very unusal. His staff are all very bright and personable and I have a good experience every time I go – whether it be for the IVIG or for a follow-up visit, it’s the best!

      I really had to laugh at your communion comment as that sounded like something that would happen to me!

    • Anonymous
      July 22, 2009 at 12:00 am

      Hi Linda – It does help to have some humor when we are going through so much. I did see my internist yesterday (actually she is the physician assistant to my internist) and she has not heard of the Namenda for nerve pain, but she is sending me to a pain management doctor and she said maybe he has heard of it. She did give me Vicodin and said not to take them every day. She put me back on Cymbalta, but at a lower dose. I tried it before and it helped, but the side effects were terrible. I had a lot of sweating and dry mouth with it. I see the pain management doctor at the end of the month, so I am interested in seeing what they do for the pain. I do hope your still going good with the Namenda. I’ll keep you posted about the pain docs. Hope you have a good day tomorrow and remember to laugh, it’s the best medicine. Sometimes when you are in pain, the last thing you want to do is laugh. I now have a light at the end of the tunnel, which is comforting. I watch Joyce Meyers a lot and I get a lot of chuckles from her. We need to have a format for funny stories to help lift us up. Well, that’s it for now, will keep you posted. God Bless.
      Clare in Michigan

    • Anonymous
      July 23, 2009 at 11:42 pm


      Good evening !!

      sounds like things are going pretty good.

      I am just hacking through summer. Can’t wait until it cools off.

      Dick S

    • Anonymous
      July 24, 2009 at 1:22 pm

      Well, we’ve cut my tizanidine in half so far and I’m still doing good overall pain wise … It will be another week before I am completely off the tizanidine (which has been my only daytime med to assist with pain relief). So I continue to be optimistic that the Namenda is doing what it is supposed to be doing!!!

      Dick S – I know what you mean about the summer heat! Even though it doesn’t bother me (like it does you) to use targeted heat or the hottub, I recognize that the heat and humidity of this part of Texas definitely does aggravate things! And has this ever been a scorcher of a summer! I don’t need to heat the water in my hottub anymore – some days I have to throw ice in it to cool it off enough to get in it!!! :p I pray you will feel relief soon!!!

      Clare – Joyce Meyers is funny while telling it like it is in ways we need to hear!!! LoL! When is your appt with the pain dr? Let’s hope the light at the end of the tunnel is NOT the train!:eek:

      Y’all are the best! This website/forum is giving me new hope and better understanding and, I feel, maybe some new efriends! Hope everyone is doing well ….

    • Anonymous
      July 25, 2009 at 8:34 pm

      Linda – Glad to hear you are still doing good on the Namenda. I have been on 20 mg of Cymbalta for about 4 days and the pain was getting less in the first two days and now the pain is back and I am so tired all the time. So, don’t know if this will help me. I go to the pain doctors on July 31, will let you know what they do for me. Hopefully, they will try the Namenda. About the sensations you mentioned before, I sometimes get feelings liked something is crawling up my leg and I look and nothing is there. It is a weird feeling. Will keep you posted on my appt. and I sure hope that light down the tunnel is not a train coming. LOL.
      Clare in Michigan

    • Anonymous
      July 25, 2009 at 10:05 pm

      Hi Linda
      My mother is currently on the slow uphill battle with recovery from CIDP. She often complains to me about the pain in her legs and feet. Sometimes so bad that she needs to ask for hydro-morph, which helps a to tolerate it. However she will go home this thursday for the first time after 6mnths, and not sure what she will get to control her pain. She says that the pain si so so bad, that she never thought that your body could hurt so bad. It seems the more she does the more it hurts. But she wants recovery in a bad way, so she works through it. I guess I can’t even imagine what you must go through every day. How do you find your strength to get through it all?

    • Anonymous
      July 27, 2009 at 8:47 pm


      I’m so excited I can hardly contain myself. I am off all daytime pain meds and have less pain than I’ve had all year. I love that I’m not on any narcotics or anything that fuzzes my head – I enjoy my job and want to continue with it! Weekend before last, I did some house projects/crafts/things I have not been able to do in over a year … my pain level came up only a little and was still in a tolerable range. This past weekend, I was able to work in my garden for several hours, took a nap and went dancing for several hours that night! And when I left, it was because I wanted to and NOT because I was in pain. I realize I’m fortunate that, while my muscles spasm and cramp, my CIDP is mostly sensory. However the other side is that it is extremely painful. And while I know what works for one, doesn’t always work for all … but for those of you plagued with chronic pain, I would highly recommend giving this a try!

      I feel like a brand new person!!!!!!!

      I wish all continued success in finding the right pain mgt program and hope to get updates … hint, hint Clare, Dick S, Maggie, Rhonda, and … everyone!

      Yolanda – I am so sorry for your family, I know how difficult it is to watch someone go through a medical challenge. If you don’t mind, I would like to know your mother’s name to add her (other than “Yolanda’s mom) to my prayer list. That said, that is how I get my strength to face all of life’s challenges – by faith. I wish I could say I lived my whole life through faith, but sadly that is not a true statement. While I don’t believe my faith reduces the challenges of life, it does give me a great peace that, in the long run, it isn’t about this life and it isn’t about me. When I line myself up in relationship with God and acknowledge and appreciate that He sends me great Blessings every day, I can go through anything. In spite of all the pain and challenges, I can fill more pages with things I’m thankful for than with the things that are rotten. It’s a choice to recognize every day the things that are good and it’s a choice I make every morning when I wake up. The main thing I’ve really learned is that once I gave up the myth that I was in control of anything:eek: , everything’s been in better control:D ! I pray you and your family find that peace.

    • Anonymous
      July 28, 2009 at 10:51 am

      , Hi Linda,

      I’m wondering, do you happen to go to The Neurology Center on S. Main at the southern end of the medical center? If this is non of my business I’m sorry but it sounds like you and i are patients of the same Dr., as well as my sister, who was diagnosed about two years before me.

      I’m having a terrible time with pain and have not asked my dr. about Namenda yet, but i am taking heavy doses of hydrocodone, kadian, and tizanidine. I was taking Cymbalta, which i really liked but had to discontinue it because it raised my BP which was problematic. I also had to discontinue IvIG almost a year ago because of kidney failure so other than pain meds i am not getting any treatment at all for my CIDP.

      Because of a late diagnoses due to lack of insurance when symtoms first started, it took about a year and a half before the IvIG to begin to work on me. Except for the pain control, once the IvIG kicked in i have to say it was nothing short of a miracle how well it worked. I still have fatigue and my muscles still are not nearly as big as they should be, but my balance really improved as did my ability to climb more than one step. I walk with a cane, but at least i was able to put the walker in the closet.

    • Anonymous
      July 28, 2009 at 9:11 pm

      Hi Bill,

      No – we don’t use the same doctor, but sounds as if we both have good ones! I’m south of Houston and use a doctor close to home. I’m so sorry you can’t continue the IVIG, it really has helped me, but I’m glad you received some benefit from it before you had to discontinue.

      The pain is what I couldn’t get under control – I had NO idea I could hurt so much for so long! Until recently, I was on a cocktail of gabapentin, tizanidine, klonopin and nortriptyline for pain mgt. I also have hydrocodone for extra pain relief and was taking 3 – 4 a day. Since being on the Namenda, I haven’t taken hardly any hydrocodone and I’m off the tizanidine. We’re going to leave things where they are for another couple of weeks, then start reducing the nortriptyline and see what happens.

      I still have to be careful with how hard I push my hands/arms, but I can do a wider range of activities than I’ve been able to do this year.

      I’m having to take more treatments than originally thought also due to a lack of a timely diagnosis. I had insurance but this came on slowly for about 8 years, then wham! it went very active. I was mostly told it had to do with being in my 50s … untill I moved here and a wonderful young doctor took me seriously and sent me to a neurologist.

      I wish you the very best and please keep in touch! I’m sorry you have this but I’m glad a fellow Texan made contact!

    • Anonymous
      August 3, 2009 at 1:29 pm

      I’ve had three productive weekends in a row since starting the Namenda and am off all other daytime meds!!! I have not been able to do much of anything this entire calendar year and now I’ve been able to do household/garden projects on weekends and, recently, also a few little things in the evening after work.

      I know different things work for different people, but I am totally sold on the Namenda!!!!

      Good luck to everyone on getting what works for them. Y’all are wonderful to respond and provide additional information and advice.

      Thanks to all!!!!!!:p

    • Anonymous
      August 3, 2009 at 3:19 pm

      Linda, I am seeing my internal med doc tomorrow. Already sent him the infor you told me about along with a note asking him to check it out. Will let you know if I get it. Regina

    • Anonymous
      August 3, 2009 at 7:41 pm

      Regina – fingers crossed (and because I choose to, not because they cramped that way – LoL). I so hope you get something that helps!!!!!!!!

    • Anonymous
      August 4, 2009 at 5:23 pm

      Linda my friend, Please do me favor. Go to a mirror and check you back.:D

      Me thinks there may be some wings sprouting there.

      I GOT IT. Dr. gave me a 6 week starter kit, so will start tomorrow. He had no problem me trying it, but afraid he wont be able to get it thru Medicare, good old FDA. So thanks for the advice and I hope and pray it does as well for me, as it has for you. Might have to have Hubby drive me on down to Texas so we can hit the hot dancing spots—country I hope. Again thanks and i WILL keep you informed
      (as the pain streaks out of these old legs. Regina

    • Anonymous
      August 4, 2009 at 7:18 pm

      Regina – I’m so happy to hear you got the medicine!!! Now I can’t wait to hear if works for you. I will be waiting for you to come on down and go country dancing (is there any other kind) with me!

    • Anonymous
      August 13, 2009 at 7:38 am


      It’s been over a week since you last posted … how is the Namenda so far???

      You’re in my thoughts and prayers!!!!!

    • Anonymous
      August 13, 2009 at 6:40 pm

      Linda, You must have been reading my thoughts. I havent posted as I am still waiting. I feel no relief at this time.
      I am on the “starter kit”, so took 5 mg for a week. Yesterday I started 10mg for a week., and so forth. So, havent given up yet, as I may need to get to full strength of 10mg, 2 a day. Have to admit I was hoping for a miracle right away and not giving up yet.
      I am just afraid I may have done some very serious nerve damage when I had a bad fall 4/06…..BUT Thinking POSITIVE:D Thanks so much for caring and the hopes and prayers. Regina

    • Anonymous
      August 14, 2009 at 2:17 pm

      [QUOTE=Linda Martin]
      I am also on the neurotin but for a total of 900 mg (300 at dinner and 600 at bedtime) plus a boat load of other things.

      [COLOR=”sienna”]Linda, may I ask why 300 @ dinner and 600 @ bedtime? I’m wondering if it is to allow you to function better during the day.

      I get fuzzy-headed. It worries me. To just zap it all in the evening seems a good solution.


    • Anonymous
      August 14, 2009 at 8:52 pm


      You are correct – during the day I am relying mostly on the Namenda for pain control which allows me to be clear headed for work. I get most of my “attacks” at night and they are horrible, full body muscle cramps which curl me every what direction and can go on for hours, wave after wave of attack (it’s a mystery to me why at night???). I look like a professional contortionist and it causes me extreme pain. So my neuro was most interested in stopping that for me (yeah!). To that end, he starts me off with a smaller dose of the neurotin at dinner to get it into my system, and then adds more at bedtime (plus some other things).

      After I got up to full dose of the Namenda, he reduced/eliminated my daytime pain meds and that is working well. He is more cautious about reducing my night meds since they are for more than just pain – they are to help control the muscle seizures. However after my next appointment in Sep, he is going to try to reduce the amount of nortriptyline I take at bedtime since the Namenda has reduced (not eliminated) my 24/7 pain.

      I hope this helps!

      Regina – you are in my prayers and I hope to hear a good report from you soon!!!!!!!

    • Anonymous
      August 23, 2009 at 7:58 am

      Regina – you are in my thoughts and prayers and I was wondering if you were getting any relief from your pain? I am still loving the Namenda as I’ve been able to do much more than I could before I started it … I still am on all my night time meds but don’t want to make any further adjustments as this is the best I’ve felt since it all started. After this last round of IVIG, I actually can feel the results! Before, I would get energy from the treatments, but didn’t feel any difference in my numbness or areas affected by burning pain or pins and needles pain … but I have to say that I can actually feel my ankles again!!! I hope and pray you have less pain.

    • Anonymous
      August 23, 2009 at 5:50 pm

      Hi Linda, You are so nice, thanks for caring and asking. I am sorry to report I feel no difference. I will go on full doseage this week and see then. For some reason the pain meds just dont fix anything for me. When I was in hospital, way back, I was on Vicodine to get me thru my PT, but I am on no meds or treatments anymore, and none of the suggested meds (as in last newsletter) seem to give relief…. MUST BE BRAIN DEAD or hard headed 😀
      I really want to thank you for your encouragement, it was worth a try. as I got the free patient trial pak. One thing the Namenda does do is make me extremely tired, so you feeling so good and doing so much more, is a blessing for you. I hope you contine to do well. Maybe some other people in here may get to try it and see if it helps them. Bye for now Regina