Pain, Pain, Pain, etc./Dr. Lewis

    • Anonymous
      March 11, 2010 at 3:06 pm

      It has been awhile since I posted anything. I am experiencing terrible pain in my hands and feet. I have had CIDP for about 8 years w/infusions for about 6 years. For the last few years I have experienced more pain in my hands and feet, also I have numbness. My neuro is not one to prescribe pain pills, so I get Vicodin from my Internist. My neuro is going to try giving me IVIG every week for a month and also up my dose of immunoglobulin. I have not lost weakness, but have terrible pain. He has tried antidepressents and they(Cymbalta)did work, but after awhile I had extreme sweating from them. I would take a shower and turn around and need another from sweating so bad. He has also tried Lyrica and other drugs, but nothing is helping the pain. I know the weather does not help, I am in Michigan and I swear Michigan is the most depressing state for weather, it seems we do not get much sun. I have considered Dr. Lewis for a second opionion, but my insurance is so particular that I don’t want them to stop coverage because I changed something with the IVIG, they have done this in the past, also it would be a little far for me to see him. Has anyone who has seen Dr. Lewis have him relieve your pain, if that has been an issue. I am at my wit’s end with this pain, I don’t know how much more I can take of this. Is this a normal part of the CIDP? I end up crying every day with this pain and I am so tired of it. Other than this pain my neuro has been very good with this condition. He is really hesitant about narcotics being addicting and does not want me to get hooked on them. At this point I don’t care if I do get hooked, I just want to be out of pain. Other than that, I have pretty good days.

      Clare in Michigan:(

    • Anonymous
      March 11, 2010 at 6:19 pm

      We live in a suburb of Detroit too (near the Palace) and yes, MI weather is HORRIBLE. I think we are the cloudiest state in the whole USA.

      I don’t really know anything about the pain though.


    • Anonymous
      March 11, 2010 at 7:53 pm

      Just wanted to tell you that I’m so sorry to hear you are in so much pain.
      I will keep you in my prayers. Let me know what works for you and I hope
      you find relief soon and never give up hope!
      Ms. Judy

    • Anonymous
      March 11, 2010 at 9:26 pm


      I’m so, so sorry to hear you are still fighting so much pain. It makes me sad to know that you are suffering so much.

      I’m still getting good results with the Namenda. Did you ever get to try it? I remember Regina tried it and it didn’t help her. Sigh.

      The other thing that did help me was Lyrica … but I blew up about 20 pounds in a few months from using it, so didn’t like that side effect. However, if the Namenda had not helped me, I would have gone back on it – rather be fat than in the kind of pain I used to have. I remember crying daily I hurt so much.

      I so wish I could do something for you … but if you want to at least get away from the depressing weather at home, come on down to Texas! The weather couldn’t be better right now and I have room.

      You are in my thoughts and in my prayers.

    • Anonymous
      March 11, 2010 at 11:08 pm

      My son Ryan is 21 and he suffers with that pain also. we also see Dr Lewis along with another neuro out of Grand rapids and nothng has worked for Ryan’s pain either. we tried Lyrica recently and thought that was going to work but after 2 days his pain came back and he started getting these wierd sensations. so he had to go off of it. our neuro in GR perscribed that marijuana pill marinol but it doesnt work either. so we see Dr Lewis on April 5 and we are hoping he can perscribe something for him. Ryan is always saying he wishes he could just chop his legs off so the pain would go away. I feel so bad for him but stretching helps a little not much though.we are thinking about seeking a pain management doctor. we have to do something to see if we can get rid of Ryan’s pain.
      I wish I new of a magic pill that would work for you. Hang in there. If I were you I would demand some pain meds and if your current doc wont give you something then call Dr Lewis and get a appt he will perscribe something. he is all for getting rid of pain. He told us to email him if our neuro in Gr cant find one that works. but we see him in a few weeks so we will wait if Ryan can hold out that long.

    • Anonymous
      March 12, 2010 at 1:21 am

      Can you see Dr. Lewis as a consult?? Ask his opinion/review your treatment plan and then have him send this to your usual neuro??? I did that recently to get an idea of different options and it also gave me a look at a possible new doctor in the process.
      Having pain is awful. This last week we got rain and cold-that combination for some reason does cause break thru pain.I had few days of intense unrelieved pain especially in my legs.Nothing I could do helped me sleep or any position was comfy.I ended on the sofa with a blanket over my head sobbing.
      Pain that made me think my legs were frozen.
      I’m on pain meds and wish I didn’t have to take them but nothing else worked. Cymbalta/Lyrica/none of the off label drugs worked at all.

      I go to a small pain management physician and he’s strict on prescribing. I have to have drug testing every 2 months.
      No one should live in pain and when it directly impacts your life to the point of abject misery do what needs to be done to have quality of live.

    • Anonymous
      March 12, 2010 at 8:27 am

      yes you can make an appt with Dr Lewis and take y our medical records with you and he will go over everything with you and then he will work with your neuro if your neuro is willing. if your neuuro isnt willing then he will recommend other neuros that he knows and works with.
      we see him every 3-4 months and our local neuro every month. he has Ryan email him every few weeks for an update on how he i s doing or when something is going on.
      Ryan has several doctors he see’s: Dr Lewis, our local neuro Dr Sullivan, a physical medicine doctor, Dr Bloom and a hematologist/oncologist- DR Gribben. all write perscriptions for Ryan so we have to be real careful so make sure all meds can interact well with each other. I am always telling them what ryan is already taking and then double checking with our pharmacist that they can be taken together.

      For pain Ryan takes: 4200mg neurotin daily, 75mg cymbalta daily, 100 mg tomapax daily, 4mg-8mg marinol daily, ultram as needed daily, and propoxyphene (morphine based pain med) as needed daily
      I do get nervous that he takes so much pain meds but after all of this pain meds he is still at a 8-9 on the pain scale. all the time, no relief.

    • Anonymous
      March 12, 2010 at 6:34 pm

      I live in the suburbs outside Detroit as well, Wyandotte to be exact. I also am having a lot of pain, but only in the last few days has it gotten severe. I have not had a relapse of CIDP in 11 years, but I struggle with nerve pain especially in my hands,feet, and the back of my head.

      I thought maybe it was the weather,damp and rainy! The pain also escalates in the fall when it starts to get damp and cold. It is difficult since nothing seems to work on it.
      Wish I had an answer, just wanted to let you know I understand, and send some healing energy your way.

    • Anonymous
      March 13, 2010 at 12:56 pm

      My Rehab doctor was firm that pain was never acceptable. My PCP agrees. The current pain cocktail that works for me is 600 mg of Neurotin and 5 mg of Baclofen every 6 hours and Oyxcontin 30 mgs every 12 hours. As I get towards the end of the 6 hour time frame I start to hurt – so I know this works for me.

      Please find someone who will help. Pain stops the healing process, and just shouldn’t be. The worst side effect is the constipation that Oxycontin causes – I have been on Oxy before and weaned off of it. That takes a while, but it can be done. Don’t worry about being addicted at this point – just get relief from the pain.

      This Ohio State Buckeye sends you love and hopes for a pain free future (of course, Grand Rapids isn’t Ann Arbor) 🙂

    • Anonymous
      March 13, 2010 at 3:08 pm

      It really, REALLY makes me angry when I read about doctors that are so ignorant to current opiate treatment regimens. Your neuro needs some “continuing education” in this area!

      From what I know:
      Pain = Stress
      Stress = Increased CIDP/Neuropathy Problems

      It is critical that pain be dealt with in a professional, controlled manner. Simply saying that he’s afraid you’ll become “addicted” shows ignorance and a lack of concern for your overall health, in my opinion.

      You should, at least, find a reputable Pain Management Clinic in your area and start treatment through them for your pain. If they ARE reputable, it will be a drawn out process…probably take at least a month to get a prescription, and there will be a lot of conditions…urinalysis, psych review, only get opiate scrips from that doctor, etc. BUT, in the long run, it IS worth it. And, if you read up on Opiate Programs, you’ll see that the “common” school of thought is that those that are seriously in pain and in need of this treatment rarely become “addicted”. I am on an Opiate Program through a PM Clinic here in Utah; there are a LOT of conditions. For one, if I ever request an early refill, I have to start the entire process over. If I were to request a second early refill, I’m kicked out of the program for good. Plus, our state (as all states) sends reports to their office every month, detailing prescriptions, so they can make sure you’re not “doctor shopping”.

      Finally, if I were you, I’d seriously be looking for a new neuro, too.


    • Anonymous
      March 13, 2010 at 6:57 pm

      I have to, don’t like it but it’s necessary. But those stressors and exhaustion can and do take their toll.
      I have also found that most pain meds don’t really WORK for me in taking away all the pain. Only about 10-15% of it. This past summer I was hospitalized for a majory injury and was on a healthy dose of morpheine [not something one ‘wants’ to get? but you know it’s gotta be bad to be given it.]. Only took about 15% of the overall pain away unless jolted-then I’d speak up? But The opiate effects well, I simply didn’t care. Scary concept.
      That said each of us defines our pain[s] differently, there are no standardized definitions for pain, nor descriptions for it. At the worst? It is excruciating and mind-blanking, at best, a nasty pest. I sure wish I had a nasty pest? Then going further the meds for pain effect each and every one of us differently. What I do if prescribed a new pain med is to ask for samples and see how well or not they work for a few days before filling my 30-90 day prescriptions. I ‘tried’ one, once and was a zombie for four days afterwards. Gave up that one and called the doc immediately as well about the s/e’s. Then tried something else which worked well for 2+ years. BTW? Start a new med on a Sunday or Monday? That way if you get those BAD s/e’s? You can actually maybe reach your doctor’s office for advice! Hope this helps.

    • Anonymous
      March 14, 2010 at 3:05 am


      I would like to absolutely agree with you that pain stinks. I could use a few other words that the forum would blurb out. But you are right. Pain stinks.

      Now, How do we deal with it?

      Pain is a major part of my life with CIDP. I don’t care what anyone else says. Let them live in my body for a while, and then tell me I don’t hurt. I mean I get mad when someone says I don’t hurt. Anyway……

      First, I tried to classify and understand my pain. Some of it was sharp jabs, some was dull throbs, and then the burnies and tinglies. Some pains were aches, some hurt when I moved, some hurt just whenever.

      The nerve type of pains–sharp jabs, burnings and tinglies, big jolts, etc.
      The muscle type– aches, throbs,
      Tendonitis type — aches whenever you move, or move too much, but only in certain areas that don’t change.

      And so on and so forth.

      Neurontin does OK on the burning tingling but is useless on the muscle stuff.
      You get addicted to the vicodan and the “heavier” drugs, but should you live your life in pain? I don’t think so !!!

      The problem with drugs like percoset, vicodan and one’s like them, is that you build up a tolerance over time and need more of the drug to get the same pain relief. And that is not good. Only you know how much pain you are in every day. If this is an untolerable level, you need some kind of pain intervention. I take morphine. I used to take methadone. You need to read about the drugs you will be taking and decide.

      You will probably have to go to a pain management clinic. You may have to take regular drug tests, you may have to give up part of that privacy, but you can get pain relief.

      I did.

      Dick S

    • Anonymous
      March 15, 2010 at 3:49 am

      I just wanted to add that drugs in the category of Neurontin/Cymbalta/Topamax/Lamictal are being used “off label”. They did not always help with pain, even in high doses that may not be effective and have a lot of side effects. Do not let your doctors tell you these type drugs are the only ones that will help.
      For some of us only morphine based medications work. No one can tell I’m taking my needed pain medication. Please find the right combination of drugs that will help relieve your pain.
      Dick is right that there are several types on nerve pain/pain.
      No one deserves to live in pain. You need relief. It’s your right. is wonderful web support group.

    • Anonymous
      March 15, 2010 at 1:37 pm

      One other thing, that hasn’t been mentioned…true “nerve” pain responds poorly to Opiates. It says that all over the web, and I’ve experienced it myself. SO…don’t “over-anticipate” the effects if you DO get on an Opiate Program.

      That said, I truly believe what Dick and others have said about the many facets of pain. Nerve pain doesn’t restrict itself to simply the nerves…it radiates outward, makes muscles tense up and stiffen, causes headaches, etc., all of which CAN be helped with opiates. But, in my experience, when my arm nerves are “roaring”, and it’s like they’re on fire…opiates won’t even help that.

      Seek pain control, but just don’t expect a “silver bullet”, if you know what I mean. At the pain clinic I go to, their definition of effective pain relief is if they can reduce a chronic pain patient’s discomfort by at least 50%. I am pain-free about 70% of the time, and I take Percocet 5-6 times a day. And, like Limekat said, no one can tell. I still work, still “with-it”; in fact, I’m a heck of a lot more “with-it” than I was “without-it”. Before pain meds, the pain was like a constant companion, over-shadowing everything. I had to concentrate every second to work beyond the pain.

      Seek help.


    • Anonymous
      March 15, 2010 at 2:38 pm

      I too am in the Detroit area and have been a patient with Dr. Lewis for a few years. I can attest to his outstanding reputation and patient care. An example of this would be his close communication with his patients. Generally, if I’m having problems, such as increased pain I can e-mail Dr. Lewis and he will respond very quickly…even when he is out of town or on weekends. This, to me is pretty amazing.

      I have had CIDP for 4 years now. It is as a result of a chronic rejection issue from an unrelated bone marrow transplant that I received after battling acute leukemia. Only in the last few months have I had to start managing my pain. The CIDP is in both of my legs, but the pain comes from my right leg as it directly involves the sciatic nerve. When it flares up the pain is so bad it brings me to my knees in tears. And, it always seems to be a problem in the middle of the night. I’m still working on what combination of drugs works for me. Currently, I’m taking 3200 mg neurotnin 3X daily, 50 mg nortryptalin at night only and vicodin as needed. The vicodin helps take the edge off, but I’ll be working with Dr. Lewis to have another option as the vicodin doesn’t always work.

      I’m in agreement with others on this in that living with this pain appears to be part of the club we’ve joined. I’ll also agree that you need to find what works for you. This is the hard part… Keep asking questions and keep inquiring about the research you do. Lewis is very keen on working with his patients in that regard.

      Best of luck to you and us all.

      Warmest regards,

    • Anonymous
      March 15, 2010 at 10:18 pm

      Thank you for all the advice on my pain. It is so good to have people to talk with that understand what you are going through, this board is a lifesaver. Our weather here in Michigan just today got cleared up and we had some sun in the afternoon, first time in a week. My pain is a little better, but I still need to take Vicodin for it. My PCP did give me a refill on the Vicodin. The Neuronton I take, 2400 – 3200 mg just does not get rid of all of it. Pain is such a debilitating part of CIDP. I told my husband I am Dr. Jekyl(in pain) and Mr. Hyde(out of pain). I told him and my daughter that when I say “I’m having a bad day”, that means I’m in pain and stay out of my way and don’t say anything to me. I hate when I take it out on them. I feel guilty enough having this damn stuff, without feeling guilty when I get in a bad mood. Thanks again for the input and I will pray for everyone and I think about all of you guys on this board. Too bad we can’t all get together to meet, but this board is second best to meeting in person.

      Linda M – Thanks for the invite, I might take you up on it if I can’t get rid of this pain.

      Linda W. – Thanks for the healing energy. Wyandotte is a nice place. I live in Garden City, kind of a bore city.

      Clare in Michigan;)

    • Anonymous
      March 16, 2010 at 11:06 pm

      The pain all of you are describing is exactly what my daughter describes. She is 34 and has now had 2 years of burning, shooting, zapping, dog bites, pain pain pain. Neuros give her neurontin, worthless. They act likethey are giving her some miracle drug. It does nothing. We have been through 3 pain management docs, now we have one trying tegretol. He would like to give her methadone. I know it worked on her pain but gave her hallucinations off the charts. Guys with machine guns at the end of the hall, scorpions on the bed. Can’t do that! So, along with the morphine, actually time release, she’s a combo of that and the tegretol, which is making her exceptionally sleepy and neurontin and baclofen. There are some other meds for something that is like schizophrenia, sleeping and a mild mood elevator. The one drug that works without lots of side effects is oxy, of course they’re all scared about their risk management insurance and are hesitant to prescribe on a regular basis. But it really worked. Can’t remember the dosage.

      Bottom line, try to get a pain managment doc and you may need to try more than one. I have to pay out of pocket for her current pain doc, $75 a month not too bad. I also have to pay for the ms chontin, insurance will not pay for it, that’s about $120 mo now, but it was as high as $500 (Walgreens’, the independent down the street ended up being $175/mo for the same med!) The other problem I had with Walgreens is that either they did not know how to count pills or someone was getting to a few out of every bottle the ones with street value.

      Life is miserable with pain, for every one. I keep saying part of a medical professional’s training should be to be locked up with a person begging for pain meds and NOT HAVE ANY WAY TO HELP. AND NOT KNOW WHEN IT’S GOING TO COME TO AN END. They all get to walk away after 45 or 30 minutes or 5 minutes. Right?

      Get to pain management. Have your neuro write a referral, or your primary wrtie a referral.

    • Anonymous
      March 17, 2010 at 9:37 pm


      You used a word that I have seen too many of us use way too often. “guilty” You feel “guilty” about this or that. and so on.

      I don’t think that anybody else wants to trade shoes with you. So, until they want your pain, don’t feel “guilty” about it. and until they want your CIDP, don’t feel “guilty” about feeling crappy from time to time.

      I feel bad, and I hurt. I get mad at myself and I get mad at others. I love my family and all of my friends, and I struggle with my life from time to time, but I stopped feeling guilty a long time ago.

      I know it is only a word, but it carries a whole lot of weight.

      Take care, and have a great day !!!

      Dick S

    • Anonymous
      March 18, 2010 at 7:41 pm

      We each describe and cope with our pain[s] differently. Some things work for some for a long time, others only a short time. Then there are those side-effects. Essentially the devil if you do, and another devil if you don’t.
      I truly like the ‘dog bite’ description tho! Is that just a bite or more of a gnaw? Mine is like a gnawing.
      Each of us is very different about taking and tolerating the slew of meds available to us. I’d just gone off of them for the most part because they didn’t work long term and others had side effects too nasty to tell about [those hallucinations? They can be whoppers!]
      I truly hope and pray that you find SOMETHING to help you get by, ideally thru the day and then able to sleep at nite!
      Don’t EVER feel guilty for getting this stuff! NEVER! It’s just one of those random odds that we as humans seem to encounter. Yes, it’s not fun, by any means. No, it won’t just go away. But we’ve got our lemons, and we must make the BEST lemonade ever imagined with what we have! [Or, lemon cookies, lemon pie..etc.] There are times when bitter can be made sweet in a way. Keep faith and keep plugging! Don’t waver from your self-feelings and keep strong! Hugs and hope!
      PS Also, how can others understand? They aren’t YOU! Never forget that and when you are angry? Do something constructive like cook stews or make some silly things or write a book about having this stuff. Who knows? One of these efforts could be your best outlet!

    • Anonymous
      March 19, 2010 at 3:25 pm

      It is nice to have someone give you encouragement. I decided to give up the guilt and got mad and decided to have a better outlook on life with this pain. I have had a good last 2 days. Today, not so good, but as far as making lemonade with lemons 🙂 , I have been hungry for a lemon meringue pie and have enough lemons to make one. I do have pain today, but it is much easier to take when you have a better outlook on life. I am going in on Tuesday to have a port put in, since it is getting harder to get my infusions, I will be glad to get that. Thanks for the sunshine that I can get here, also, my faith in God has been a comfort.

      Clare in Michigan