pain in CIDP

    • Anonymous
      October 11, 2006 at 9:42 pm

      Can anyone explain to me what pain means in CIDP, I know its the damage of the nerves that gives the pain pain, what I can’t understand why after 5 months of prednisone, 3 months of cyclosporin, 7 sessions of plasma exchange , 2 months of azathioprine, 40 mg oxycodone,700 mg gabapentin and 40 mg amitriptyline the pain is there and even stubborn than it was before any treatment. I live my husband’s experience with CIDP and I’m desperate because I want to help him more and nothing I do make him relieve the pain.DO U THINK THE NERVES ARE NOT RECOVERING IN THIS CASE OF TREMENDOUS PAIN (pins needles, electric discharges, pain in the muscles, numbness and loss of feelings in foot)Please I NEED to find some answers……from ur experiences coz his consultant said nothing is for sure.

    • Anonymous
      October 11, 2006 at 11:05 pm

      consider going to for more information.

      I feel your frustration, and send you a big hug. In my experience, some of the meds you list prevent the nerve damage from worsening, and some help dull the pain, but for a person with a lot of pain, it is hard to totally relieve it when CIDP flares up. I live with this with my husband too. We use a lot of massage, music, etc when the going gets tough.

      Consider a book called “freedom from pain” by Norman J. Marcus, MD. I got it on


    • Anonymous
      October 12, 2006 at 1:04 am

      I have some severe pain with my CIDP I have learned that keeping busy with your mind or easy activities helps with the pain, because nothing else even touches my pain. Books,computers, movies crafting etc… use you imagination and God bless

    • Anonymous
      October 12, 2006 at 10:51 am

      He is on a very low dose of Neurontin considering. I started on 3600 per day but others have went even higher to a maximum I believe of 5400. Getting the nerve pain under control will help the most in recovery, the other pain killer wont do anything for this pain.


    • Anonymous
      October 12, 2006 at 3:31 pm

      I think that the reason for the fact that your husband still is in so much pain even after all his treatments is because any nerve damage takes a very long time to heal. Most often it is the myelin sheat – which can be compared to the isolation around an electric cord – that is damaged, so the nerve impulses sort of short circuit and this results in pain. When the inflammation that causes the damage is stopped, it still takes quite a long time for the myelin to grow back. If the nerve itself is damaged, it takes even longer.

      I’m sorry having to tell you this, but knowing what’s going on has helped me cope with th excruciating pain I used to have. Otherwise I can just repeat what the others have said here. 700mg og gabapentin is a very low dose, even though my pain now has subsided considerably since it peaked two years ago, I’m still on 600mg four times a day, and if I forget taking one dose, after about 8 hours I really feel how much I still need taking all the 2400mg over 24 hours. I have had no side effects whatsoever, but of course people react differently.

      Your husband might be in even more pain than I was, but like nebraskafan says, keeping one’s mind occupied with other things was a great help to me. Also social company helped me forget my pain, but it happened some times that the pain was so severe that I could not consentrate on anything else. Luckily, after a while it went down to its “normal” level again.

      Get your husband to increase the intake of gabapentin, and hope for the best.

      Good luck!:)

    • Anonymous
      October 12, 2006 at 8:27 pm

      thanx again for sharing ur experiences , is good to get some nice thoughts, even though I know everything yous told me is good to get reassured from time to time that you are still on the right path. When I said gabapentin , I am sorry, I meant pregabalin,350mg twice a day, I know is still a low doze and we can go up a little bit, is the side effects that keeps him from doing this-the dizziness. We got the results from EMG today, there is no difference from the one he had 4 months ago. The consultant suggested some more IVIG( even though is gonna be hard to get IG now with this WW shortage)we are a bit sceptic of the idea because he didn’t respond to it in the first stage of his CIDP , did any of you responded to IVIG at some later stage of your recovery? the think is he ‘s not kin to get another IV treatment bcoz of all the superbugs from hospitals, he’s been infected thru the femoral line with a staff aureus sensible to antibiotics and got 6 weeks of IV treatment which burned his veins , terrible experience this staff, no good veins left for another 7 days of cannulas…….well it’s time for another massage and probably for another hot bath to his feet …..God Bless you all and keep well

    • Anonymous
      October 13, 2006 at 6:59 am

      Seeing you live in England I’d recommend the British Forum: [COLOR=”Red”][/COLOR] and find your way to the forums from the homepage. Hope to see you around there too!

    • Anonymous
      October 13, 2006 at 9:13 am

      The best way to see if his nerves are regenerating is a punch-skin biopsy. Take two sample from the leg (shin and thigh) and then repeat in five to six months and see if their is an improvement.

      EMG and other nerve conduction studies won’t give you this type of data.

    • October 13, 2006 at 12:45 pm

      Actually bird oil. Ads and testimonials say this stuff will help with just about everything.

      I was extremely skepitical when it was recommended to me 5 years ago – especially since its biggest sales pitch is for muscle pain relief. However, emu oil does work as a temporary relief on my extreme foot pain days. All I was looking for was enough of a break from the burning/stabbing/zinging/etc so that I could get to sleep. I was thrilled.

      Here is a UK site

      I have also tried some expensive stuff using geranium oil and tea tree oil. It worked but the emu oil has been the most help for the least cost.

      I take 3200mg of gabapentin a day and have excellent pain management as long as I do not over do. The best help for the daily night time increase in pain is a leg and foot massage. My unscientific theory is that there is an increased blood flow which helps the nerves settle down. Even using the cheapo wood foot rollers while sitting in front of the TV will help.

      I am constantly looking for a magic bullet for my CIDP. I take a slew of supplement pills everyday because they have proven helpful in my personal experience over the past 6 years. (Other people here, including our own Dr. David, think supplements are a waste of money.)

      On the old forum there used to be a theory that extra pain meant the nerves were finally healing and reconnecting – so pain was a good sign. (Sometimes you have to work at optimism.)

      Your husband has my sympathy. Pain control is so complicated and frustrating. And you have my admiration for trying so hard to help.

      Hugs to you both,

    • Anonymous
      October 13, 2006 at 5:43 pm

      To most people heat is the worse thing to do. Does he feel worse after you soak his feet in hot water?

      Good luck

    • Anonymous
      October 13, 2006 at 10:31 pm

      a question for all with respect to the pain control:
      I hear neurontin as being helpful, and even my mother in law uses it with good relief for her CIDP. But my husband is wired differently and cannot tolerate neurontin (gets severe headaches). He can tolerate low dose lyrica but gets dizzy and forgets a lot with this. Any suggestions? Anyone else with trouble taking neurontin?

    • Anonymous
      October 13, 2006 at 10:31 pm

      a question for all with respect to the pain control:
      I hear neurontin as being helpful, and even my mother in law uses it with good relief for her CIDP. But my husband is wired differently and cannot tolerate neurontin (gets severe headaches). He can tolerate low dose lyrica but gets dizzy and forgets a lot with this. Any suggestions? Anyone else with trouble taking neurontin?

    • Anonymous
      October 13, 2006 at 11:27 pm

      He’s having hot baths only when the pain attacks are terrible , when he feels like hurting himself in another part of his body, only to feel a different pain than the one in his feet. Hot water makes the pins & needles to go away or not so stingy. He’s got wool socks on his feet all the time and the whole legs wrapped around in an electric blanket and he can still feel the smallest draft. The weather in UK is not very friendly with us this time of year and because his feet are very swollen he can’t wear any shoes makes our goings out nearly impossible.
      thanx a lot for ur reply, I will definitely check out the site and try the oils , I am pro supplements he take coenzyme Q10 , alpha lipoic acids and colostrum with omega3 fatty acids to help him build up a little bit , he lost about 3 stones in the past year ,there is definitily a change in him, even in his moods, he’s eating much better and he’s got more energy which helps him with the PT.
      I’m not sure if I am right , probably other ppl here can confirm that EMG can show if the damage is better or worse from a test to another.The EMG measures the nerve conduction velocity, determine how well individual nerves can transmit electrical signals and can help detect and evaluate damage to the peripheral nervous system which includes all the nerves that lead away from the brain and spinal cord and the smaller nerves that branch out from those nerves.And because is the less invasive method to find out of the nerve situation we choose EMG , he had very bad experiences in hospital with this invasive procedures….thanx for ur thoughts.

      I post on the UK site aswell , i couldnt register there with dandana so I chose my hubby name VAL I’m Val there, and I read with pleasure all ur posts, learned a lot from them, you are a very valuable member of this communities

    • Anonymous
      October 14, 2006 at 12:06 am

      my husband use to take gabapentin/neurontin but he did not had great relief from it aswell gave him the same headaches you are talking about, now he’s on pregabalin/ Lyrica 350mg twice a day, it helps him better with the pain than gabapentin but he’s very dizzy he hasnt got the loss of memory though, but he does mix up words sometime. I’m sure its another side effect of the med but talk to ur doc he may wanna try something else.Have you tried capsaicin cream, is good but the effect is coming after few weeks of using it is worth trying and maybe in combination with Lyrica you can lower the dose of pills and the side effects will fade.
      take care

    • Anonymous
      October 14, 2006 at 2:59 pm


      Please tell your husband to be careful with the electric blankets and heating pads. I had some numb patches was well as the tingling and burning feelings on my skin when I had GBS.

      I was sick during the winter and started sleeping on a heating pad because I felt cold. I accidentally burned myself very badly because the pad was on a numb area one time. I couldn’t feel the pain from it burning me, but felt a very strong itchy sensation on my thigh. When I tried to scratch it, I discovered that I had a large blister where the pad had become too hot, but I was unable to feel it.

      Best wishes for his recovery.