I'm not sure if anyone can suggest anything? Since I saw my Neuro last Monday who reduced my Prednisolone to 20mg/day, my balance has been a bit all over the place. But the main problem with me is the pain-I feel like I've broken 3 toes in my right foot so I'm walking very haphazardly! I haven't broken anything or even banged anything, I just woke up with this pain. I've also got general 'buzzy' pain in both feet (the pain sensations seem to alter each month) I could cope with this by itself, but my Neuro said he cannot work out why I am experiencing pain AT ALL-he said that with CIDP I should be off balance but no pain? I was under the impression that pain was a normal symptom? As such he said I may have to have a nerve biopsy and may have another condition on top of the CIDP which is causing pain. I've had every single blood test that is possible but all he can come up with CIDP with unexplained pain. He said not to think the worst but he can't explain the pain-I'm not quite sure how he can say not to worry, he seems to change his mind every time I see him!
It may be that your prednisone was reduced too much and/or too quickly. What was your prior dose? In any case, you will probvably need to resume your previous dose, but contact your doctor again first.
No pain with CIDP? Where did you find that Neuro!!! Your "general 'buzzy' pain in both feet" is a perfect description. And, yes, it varies in the treatment cycle (I get IVIG). My "buzz" is right into my mid lower leg and can be set off (more pronounced) by just a firm pressure rub mid thigh to knee. On top of the "buzz" there is the feeling of numbness and cramp and sometimes quite sharp pains for no apparent reason. Remember - these nerves have been damaged so you should always consider that while the pain feels quite real it may in fact be phantom pain (not there at all - just nerves telling lies).
Blood tests can rule out lots of other conditions but there are some that point to CIDP. I do believe that those tests combined with nerve conduction tests are the ones to have done. That source of all knowledge.... Wikipedia .... does sum it up fairly well (and the order in which the tests should happen - biopsy is a last resort) - see
As with the others, I certainly experience pain so not sure about the information you receive from your specialist. Michael certainly describes pain very similar to mine and in reading through this net-work, pain is certainly one of the common threads.
Victoria I'm shocked. I can't believe your Neuro would know enough about CIDP to diagnose it but doesn't know that pain is most certainly a symptom of CIDP. Pain is how my CIDP started and my Neuro told me the sensory nerves cause severe pain and that is what I'm experiencing. I can hardly walk the pain is so terrible. Please get information from Johns Hopkins or Mayo Clinic online and present it to your Neurologist. Good luck !
My husband has had cidp since 2005 and has lived in constant pain. He is in a pain clinic and has to take pain meds round the clock, they also put a spinal cord stimulator in his back to help with the pain. Pain is definitley a symptom of cidp. Maybe you need to get a second opinion.
Well I have to add my "2 cents"!!! That is the craziest thing I've ever heard of. No pain with CIDP???? I wish!!! That is one of the worse side effects of CIDP, for me, It sounds like your Neuro needs to be educated. Find a few articles on the internet, print them out and take them with you to your next appointment. Let us know how it goes!!
First symptom before I was dignosed was back pain, leg pain, foot pain. When my neuro prescribes prednisone, all those symptoms didn't disappear much worse the side effects of prednisone gave me swollen feet and water retention. My doctor gave me rovitrol so I can sleep and to minimize the pain. I didn't take any pain killers. On the 3rd week I felt the prenisone arrested the nerve problem and started slow improvement. From 48mg/day for 2 weeks, reduced it to 30mg/day the next 2 weeks, recently down to 15mg/day for a month, and at present 12.5mg/day for a month. From wheel chair, to walker, now I am practicing using a cane. However I'm still experiencing the same leg pain (slight numbness, tingling feeling, and cramp muscles when I stretch, and back pain when I got tired of walking a short distance). Never took IVIG or plasma treatment. My nephew has just had chemo because of cancer so sometimes he shares his medical herbs with me to help ease the pain. It's a personal choice. An unsolicited advise, find another neuro. Go, walk and exercise at the swimming pool regularly. It will help shrink the swollen feet and minimize significantly the water retention of your legs. And lastly, keep on fighting!
THANK YOU SO MUCH TO THESE REPLIES! I thought I had actually misheard when he said this, but my mother insisted on coming in with me so she could have a listen and she was confused. I have actually called him since to exaplin about the pain so that he can't just ignore it, hopefully I'm in for anothe IVIG before Christmas, he is very reluctant and I do have to push. I will definitely look up those links and carry on the fight myself I think! Again, thanks, it's so nice knowing we are not alone with this horrible scary thing! xxxx