Pain questions…I’m so confused !

    • Anonymous
      March 8, 2007 at 10:16 pm

      Hello to all once again. It seems that my questions are endless and I’m trying to ask about the most current things that I’m going thru.

      Since I had my last Ivig treatment on Valentine’s day, (I’m now doing once a month treatment for three mos and then will do another EMG), I have been having pain. I never had pain before. The night of treatment, I had aches that would come and go in several places on my feet and legs. Since then, these aches are getting worse. Sometimes I will get real intense twinges that last maybe 20 seconds at the most but I now have the aches constantly. Some worse than others and not all in the same area. It’s like it moves. And, the aches are getting more painful. At times, it’s all I can do not to cry. Other times, it’s just very uncomfortable.

      It used to be that my left foot was the worst with numbness and not able to move my toes. Now, I can move the toes some but the right side is worse….having the same symptoms that I’d had on the left. The left still isnt good but it’s not as bad. I was worried about carpal tunnel in my hand but the aches are in both hands, wrists, forearms. It’s like I ache from the elbows down to my fingers on both hands, and my inner thighs down to my toes on both legs.
      Today I was holding my cell phone and driving…bad, I know…but I had to hang up b/c it ached so bad just to hold the phone. And typing is killing my wrist right now.
      So many talk about tingling and needle sensation for pain. That’s not what I have. It’s so hard to describe. I wish I knew what is happening to me.

      I go for another ivig next week. Is this going to stop ?
      I am scared. Trying to do my best to not let my family see me b/c I dont want them to worry. They dont understand this crazy diagnosis anyway.
      And, really, who does.

      I’d like to know if anyone else has or had this type of pain and what to do about it ?

      I dont take anything for pain.Well, ibuprofen. and it doesnt work. I did try muscle relaxers a couple times…doesnt work either. My ex-primary dr went on maternity leave and I went to a diff dr. When the primary came back, I went back to her and she insinuated I had “dr shopped” for pain meds b/c of neck pain that I had. I dont see her anymore. I wasnt dr shopping either. I’m afraid to ask the nuero for pain meds…

      Does anyone else have toes that they cant move at all ? I also have slight drop foot on the left but that seems to be better. Not normal but better.
      I dont know. I’m tired of this…the unknown.

      thanks for listening !

    • Anonymous
      March 8, 2007 at 10:53 pm


      If the aches and pains were on the night after your IVIG treatment or for only a few days after, I would say it sounds like flu-like symptoms from your IVIG infusion. Sometimes when the rate is too high or they switch brands on me I pay for it for a few days after. The best idea is to drink lots of water before, during and after your infusion to guard against dehydration. Also pre-med with tylenol and benadryl.

      If the above doesn’t apply to you then may I ask if you take Neurontin, Lyrica or similar??? You mentioned you don’t take pain killers but those aren’t really pain killers. I personally take Lyrica but also require Tramadol occasionally for severe pain. I realize they think you were doctor shopping so that is causing you problems but it seems like they should be willing to discuss alternatives.

      Another thing that has caused me a great deal of pain is muscle cramping, tonic water with quinine or quinine pills from a health food store has helped me with that.

      Sorry to write a book I just wanted to make sure I covered all the types of pain I could think of. Take care and I hope you start feeling better.


    • Anonymous
      March 8, 2007 at 11:50 pm

      First off I haven’t been able to move any of my toes for almost 5 years now, but it doesn’t prevent me from walking (with AFOs.) As for pain, I don’t believe it is from the IVIG at all, as it has been too long since your last infusion to have the kind of flu-like symptoms that Jermimy is describing. I would guess that first off you have nerve pain, which needs to be treated by either Neurontin (Gabapentin), or Lyrica. You should be on at least 1800-3600 mg of Neurontin a day.
      The second kind of pain I tend to have is what I call my muscle pain, it tends to come on suddenly & the only thing that touches it is Vicidin (Lortab.) If I get it during the day, however, I try to get by with 3 Advil, as even taking half a Vicidin knocks me for a loop. The kind of relief you need you will not get from ibuprofen, as the pain from CIDP is too intense. This is a very serious illness/syndrome & you should never be accused of seeking pain meds with CIDP, or your doctor is no good. Please ask for the help you need without feeling like you are drug-shopping…

    • Anonymous
      March 9, 2007 at 2:22 am

      Hi Stacey,
      I’m so sorry you are in pain. Have you told your neurologist about your symptoms since the IVIG treatment? If so, what did he think was the cause. I would like to know what he thinks is happening.:confused:
      I’v had CIDP for a few years now and also have chronic pain. I also suffer from bouts of trigeminal neuralgia in the face.:(
      The pain is actually a good indicator to tell me to rest up and take things easier.
      I hope you find the cause/relief for your pain soon.
      Best wishes

    • Anonymous
      March 9, 2007 at 7:54 am

      thank you all for your advice and suggestions. It helps to not feel so alone with this.

      When I do IVig, the dr has me take 40mg of prednisone that morning. After my first treatment…which was five days in a row, by the fourth night I got the severe headache and I couldnt get off the couch. I didnt go the fifth day.
      The second time I had the five day in a row treatment, I did fine with the prednisone. I just feel crummy that night and by morning am fine.

      I did tell the dr after my last infusion about the aches and new pains that were starting. That was Feb 22nd,a week after the treatment, and they werent so bad at the time.
      He just shook his head as if he agreed . I like him..I THINK he is a good dr and hope he wont let me suffer .

      Who do I ask for nuerontin ? If it’s not a pain med, how does it help ?
      Should I make an appt at a pain management place ? Will the pain go away?

      I just feel myself getting depressed. It’s almost Spring. It’s suppose to be a good time of year.

      Once you lose the ability to move toes or lift a foot, is that gone forever ?

    • Anonymous
      March 9, 2007 at 9:24 am

      Hi Stacey
      I am sorry your going through the pain and dealing with it right now. Please know that it will get better and coming here will help.
      I have CIDP and i am going for my fourth IVIG treatment next week. I am on Lyrica and Topamax. I see my neuro for everything. The Topamax helps me with my headaches. The Lyrica helps me with my nerve pain in my legs and feet and my hands. Please talk to your neuro more about everything and ask all questions you might have. It is very important to have a good neuro. I learned the hard way. And coming to this sight was a God send for me, everyone here has helped me through this. I hope everything works out for you and keep us posted. Good Luck.

    • Anonymous
      March 9, 2007 at 10:25 pm

      Your Neuro would be the one to ask about it.

      I should probably have worded it differently, Neurontin is a pain-killer in that it helps to treat nerve pain, however it isn’t the type of medication someone would Dr. shop for, as far as I know. It or another related drug such as Lyrica will usually help a great deal, it does for me. It takes sometime to build up in your body, but once you get on the proper dosage it works very well.

      [quote=ConnorZmom]Who do I ask for nuerontin ? If it’s not a pain med, how does it help ? Should I make an appt at a pain management place ? Will the pain go away? [/quote]

    • Anonymous
      March 9, 2007 at 10:34 pm

      Neurontin is a anti-seizure drug that works on blocking the pain of GBS/CIDP.

      It is not addictive like your main narcotics.

    • Anonymous
      March 10, 2007 at 1:17 am

      Thanks all for the advice. For the last week, as things started to intensify, I just kept getting more and more angry and depressed. If I talk to my mom about things, she worries and gets upset. She is going thru her own problems with breast cancer. Her and I are very close and it’s hard not to tell her everything, but what I do tell her makes her worry. I tell my sister but she doesnt understand this and gets it all mixed up when telling other people what I have . I tell my husband some, but his mother isnt well and we have been dealing with her health, too. She is in an alzheimers facility and recently had been having probs with aggression and newly found fluid on the brain. They told us to try hospice. She’s failing but not to the point of hospice. It’s so hard on my husband. His siblings are out of state so its just us here to get the calls when things arent going well. I just hate to add to his burden. And to talk to my friends..they dont really understand either. I dont look sick so it doesnt sink in to them. And, it’s not that I want anyone to feel sorry for me…b/c I dont, I just want to talk about it. It’s new and I’m trying to learn about it and accept it and deal with it.
      Today I feel better…all of the pain is still there but emotionally I feel better than I have for over a week.

      As so many say and as I have said, this forum helps alot. Whether I am asking questions, getting answers or reading other threads, it so helps to know that while we are behind a computer screen…it’s a place I can come to and not feel alone.
      It sure could be alot worse and I am so glad it isnt.

      I will ask my neuro about neurontin or lyrica. I looked it up on the net and it mentions drowsiness…curious about how long that takes to adjust to and if it’s really so bad ? Is it expensive ?
      oh, and weight gain ? Is that part true ?

      I hope everyone has a great weekend. Here in Nebraska, the weather is finally getting better and we are looking at more spring like temps. 52 degrees tomorrow and maybe 70 on Tuesday. Time to get the shorts out and show off my pasty- white -short- fat -numb legs and work on my tan! 😮
      Just kidding , no shorts yet.

      One more question ? for those that cannot feel your toes, are any of them curling or bent at all ?


    • Anonymous
      March 10, 2007 at 10:16 am

      Wow Stacey! Your life couldn’t be much fuller 😮 The only thing I have to offer is I care. Just keep coming here so that “The Family” can listen, offering you a safe and understanding place to be heard.

      I have a curling toe on the right foot and it’s very annoying. When I walk my sock tends to bunch up under it and it hurts. The damage from the GBS is more pronounced on my right side. This is an annoying, tiring disease ~ pun intended!

    • Anonymous
      March 10, 2007 at 12:29 pm

      I haven’t been able to feel or move my toes for over 5 years now & they are not curling up at all. I do wear AFOs, & make sure that I buy my shoes longer than normal. As for the neurontin, it went generic a year or two ago & the generice form, gabapentin, is pretty reasonable. Some believe it makes you gain weight, but I know now that the 80# I gained back in 2003-2004 was caused by the steroids I was on then. And by using Weight Watchers, I was able to get back to my pre-CIDP weight. I know what you mean about complaining to others about CIDP, as no one but the people on this forum can really understand what you are going through.

      My husband is an only child & his mother now has dementia, so we are the sole caretakers for her, although we have managed to keep her in an apt. She has a cleaning woman, Meals on Wheels, we call in her Rx, pick them up & fill her pill container, etc. It is so hard to care for all of her needs. We also have a son living in an apt. 4 blocks away who is a paraplegic, so my husband must take out his garbage, take him grocery shopping, etc. I try to get over there & help him get his wash done, vacuum, wash dishes, dust, etc.

      Then there is my 82 year old mother living 4 blocks from us, still in her house. In two weeks time, her pipes froze, her water heater went, her valves under her sink had to be replaced, & her TV set went. We had to help her with all of it. Normally she is pretty self-sufficient, but Feb was just a terrible month for her. She has been a widow for 30 years, & my two siblings don’t live nearby. Sometimes it is all so overwhelming for us. My husband just retired, but we spend the majority of our time taking care of others.

      I hate when people say, “Why don’t you go south for the winter?” The are so clueless, especially of the fact that I am ill. If they only knew how much sleep I need. Anyways, I so understand what you are going through! That is why I come to this forum, where people understand what it is like to have CIDP, & we can vent. But I do stronly recommend you get on gabapentin ASAP, I could not live a day without it. BTW I am only 53. Just hang in there, things will get better when you get the right pain meds; and please get lots of rest.
      Blessings. Pam

    • Anonymous
      April 9, 2007 at 11:28 pm

      I am in Norfolk, NE. I see a neurologist at Creighton University Medical Center. She put me on Neurontin 3000 mg everyday and it helps tremendously! I know this cold weather here doesn’t help the pain either. Good luck and take care,

    • Anonymous
      April 9, 2007 at 11:36 pm

      I forgot to mention it sounds like you may be getting what is called “foot drop”. I never used to be able to feel anything in my feet except pain and couldn’t even lift them but I can do that now. I was totally paralyzed for awhile and had to learn to walk again. Cold weather exacerbates my nerve pain and my feet, hands, and toes are the first to feel it. You need to make sure you put your feet on pillows at night and have someone help you with some passive range of motion exercises on your toes. That should help. When I got diagnosed with GBS in 2005 I felt so alone. It’s like it was hardly heard of in Nebraska. If you need help getting social security disability or have any questions feel free to ask…….Deb

    • Anonymous
      April 10, 2007 at 7:54 am

      I wasn’t able to move my toes since May of 06. I just started to be able to move them up and down in March. 🙂 They still are very stiff but at least I can see improvement!

      I also get the “aching” pains that you describe. I take Cymbalta and Neurontin everyday. For me, Darvocet is what I take when it gets “over the top” and I can’t deal with it anymore.

      Hope you find relief,

    • Anonymous
      April 10, 2007 at 8:07 am

      Thanks guys.
      Pam, your life seems quite full, too. People often ask how I do it…and I’m sure you understand this…I tell them I just do. When things are rough, you do what you have to. I cant walk away from my family.
      I am only 36. My husband is 46.

      The pain I was having is almost completely gone. I tried lyrica for two days and was realllllllly tired. But…without any pain meds…it seems to be disappearing. I wonder why that happened. I started off with no pain.
      I’m glad it’s gone…but, it sure is weird.

      NurseDebb…who do you see at Creighton ?? I see Dr Diesing at the Neurology office on Dodge st. He is very nice…rather young…younger than me ! He seems to know his stuff so far.
      Where do you do your Ivig ?


    • Anonymous
      April 10, 2007 at 9:50 am

      Hi Stacey,
      I see Dr. Karen Stanek. She has been wonderful to me especially when I am such a wimp when it comes to the nerve studies! She does them herself. I don’t have to do IVIG now. I’m actually doing alot better. I am 33 years old myself. It paralyzed me for quite awhile but I would say I am probably up to 60% now. I am walking again anyway and Neurontin, Celebrex control my pain. I really thought I was going to die and be stuck in a bed forever but I am slowly getting better. I have 3 kids 12, 6, and 5 who keep me pushing myself through the tough days. I have never heard of your doctor. Hopefully Nebraska will warm up this week! Take care….Deb

    • Anonymous
      April 10, 2007 at 1:46 pm

      How do you take care of your son? I saw where you said you were so tired. I’m not the sick one but if I’m tired, it’s really hard to take care of a small child.

      I have a almost 3 year old with cidp.


    • Anonymous
      April 10, 2007 at 3:42 pm

      Hi Stacey,
      OMG, you sound so much like me! I found that for right now cymbalta, and ibuprofen 4x a day, plus Topamax at night helps me. I used to not be able to sleep at night because I would get shooting pains in my legs and arms. Now I don’t but the numbness and tingling is a constant. Prednisone makes me so bloated and irritable I only take it if I’m forced to, but if it helps I do then wean myself off as soon as possible. Good luck! Hope you feel better soon.
      It’s not you it’s this disease that sucks!
      It will get better though I hope!
      Take Care,

    • Anonymous
      April 10, 2007 at 8:38 pm

      Hi Stacey – hang in there, girl! I started getting pains in my hips, knees, and ankles after my third IVIG go-round. I mentioned it to my neuro who suggested liquid B complex. I think she’s not real big on pain meds, so I am using Tylenol Arthritis Strength (650 mg) and the liquid B. I also use Bio-freeze (an icy-hot gel from chiropractor) and that seems to ease the stiffness and pain. Some of my pain may be arthritis, but it only started after my dx! Who knows? By the way, has anyone suggested Benadryl and 650 mg Tylenol pre-IVIG? That seems to help with the headaches and other IVIG-related side effects for me. Remember that you are not alone, everyone here really understands the emotions, fright, pain, and frustrations you are experiencing. Good luck and good health!

    • Anonymous
      April 10, 2007 at 10:33 pm

      Dell’s mom-
      You asked how I take care of my son being that i am so tired. The only answer I can come up with is that I just do. He’s four. I have to look at it like it’s not his fault mommy is tired and I push myself. He’s a very smart and usually a very good little boy, but he does keep me busy. I pick him up from daycare after I get off work…we come home and play a little bit, I pick up the house if needed, make dinner, do the bath thing and sometimes have a chance to watch tv. NEVER miss Greys Anatomy…:) After bath, if it’s not tv for a few, we play or once in a while, his dad plays nintendo or whatever with him and then it’s time for bed. I do that part, too. Usually I try to read him a book or two and he falls asleep in my bed and sometimes his dad carries him to his own bed. ( I cant carry him anymore b/c I am not strong enough )…if daddy doesnt put him in his own bed then he sleeps with us, kicking and keeping me awake half the night until the alarm goes off at 4am again. I hit snooze until 5a, roll out of bed and start the process all over….(usually driving as fast as I can so I’m not late for work b/c I hit snooze too many times).
      His dad helps but I do feel like I am the primary do-er. My husband does get him up in the morning and takes him to daycare before he goes to work. I really appreciate that. I work 6:30 to 3 and he works 8 to 5. I get home first so …I do the brunt of things.
      On Wednesday and every other weekend we have his daughter from his first marriage. She is ten. Right now she’s going thru that pre teen emotional stage I think. She doesnt like her brother much. My husband doesnt agree…he thinks it’s just that she doesnt want to be bothered…I think she cant stand him. And, that, makes things very hard for me. I do my best and that’s all I can do.
      Connor is a good boy and we do puzzles and practice writing, painting, coloring or just play whatever or do nothing at all…together. I just do it and wouldnt have it any other way. If something happened and I couldnt take care of him, it would kill me. He is the light of my life. As is my husband.

      Deedee, I take 40mg of prednisone only on IVIG days and benedryl so that I can sleep. I call infusion day, my 10 thousand dollar nap day. When I did tell the dr about the new pains, he didnt seem real worried. Just kind of nodded. But, the pain is gone…somehow…and I’m not taking anything right now. but the numbness is worse in the “good” foot…and,
      I am trying my best to hang in there.

      Amanda’s mom…I see others take cymbalta…what does that do ? and topamax ?
      Right now I wonder if anyone could suggest a good whine…nothing tart…something kind of sweet ? NOt a whine drinker…but at the moment, it sounds kinda good.

      ..this disease does suck…even the “mild” cases.
      sorry so long here…I’d better get to bed so I dont push snooze too many times again.
      Family is always here to listen and advise…thanks guys, again.

    • Anonymous
      April 10, 2007 at 11:00 pm

      I forgot to mention…good luck to your little one. It breaks my heart to hear of the little children with this. How frustrating it must be. How do YOU manage ? That would be worse than having it myself I think.