CIDP & Pain Mgt – Namenda?

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!!
Rhonda

Hi,

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.

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.

Linda

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,
Rhonda

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

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 too.so thats why I was wondering if it hurt.
Rhonda

Maybe we will try the roller.

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.

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

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

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.

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

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!!

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

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

Linda,

Good evening !!

sounds like things are going pretty good.

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

Dick S

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

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?
Yolanda

, 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.

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

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

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

[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.

Rocky[/COLOR]

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