Pain, is it cyclic ? Does it ever stop ?

    • Anonymous
      February 24, 2011 at 11:05 pm

      I was diagnosed with CIPD in 2009… It was no big deal, so I had CIPD… NEXT. Then in Dec 2010 I got a stiff neck which went to my waist and down to my waist and down my right arm. I read everything I could about CIPD and my readings casually mentioned “associated pain” with CIDP. OMG, my readings never said PAIN severe PAIN so bad one would have very, very bad thoughts about stopping it ! I have a high tolerance for pain BUT this was severe pain ! After a few rounds with steroids and gabapentin the pain was low enough to live with.

      I have a question for you guys. A very objective question. Does the pain have a cycle ? Does it come for 2 months and then subside ? I had a real hot burning on my left theigh. So hot it was like someone took a red hot 14″ frying pan off the stove and put it on my left theigh… ouch ! I on more then one occasion lowered my trousers to look for the RED burnt flesh and there was none ??? Now my question.

      I begain a “alternative” treatment (outside the box) in talking directly with a immunologist (not a MD). The pain is down, way down. From 8 to 9 on a 10 scale to 2 to 3 on a 10 scale. Am I showing false hope or is this normal/abnormal ? Do you guys hurt for a couple of months then hurt somewhere else ? Does the pain subside in a couple of months or what ? Are my experiences unusual ? This is costing me some serious mulla. But if it works I’m sure you too want to known about it. I need to ascertain if what I am doing is snake oil or for real so be objective and hit back. Yesterday, I walked 300 feet to and from my barn without my cain or falling. To me, this is a very big deal and I am excited. I am sleeping the whole night without waking in pain ! So I really need your feedback. Do your pain cycles come and go or are they constant for endless months ? In advance Thank You.

      THANKS. Tom

    • Anonymous
      March 6, 2011 at 9:57 pm

      Dear Tom, I have had cidp for 5 years and was dx with RA six months ago. I receive 90g of IVIG every 5th week, take 120 mg of Cymbalta for the nerve pain. The Cymbalta has increased from 60 to 90 mg in three years and most recently I have bumped it up to 120 mg. The neros aren’t sure why IVIg works for CIDP, but it does so I recommend that you speak to your doc about it.

      Because I have been on IVIg therapy for five years, my pain comes and goes. It has increased over the years. After a day of teaching the pain is pretty much intolerable. I get up in the am take my meds and go at it again. I work in constant,horrid pain everyday. Some days are worse than others. Weather does affect me. I live in Idaho and it is cold and snowy here. I know that impacts me. If I have just had my infusions, I usually get through the days of teaching a little easier, but not always.

      I guess what I’m trying to say is that there is no pattern for me. Good luck with your ” out of the box ” experiment. We all deserve hope.

      I’m headed to Northwestern University in Chicago for my SCT evaluation. Hopefully I will be accepted into their program.

      Good luck to you. Hope this helps.

    • Anonymous
      March 7, 2011 at 6:10 pm

      Jennifer – hope you get in the trials for SCT!!!! I went in Jan, but the neuro didn’t think I had given the second therapy enough time … I’m supposed to go back in about 6-8 weeks for re-evaluation. Good luck to you as I really think this is the only long term hope for me!!!

      Tom – the one thing on this forum that we all agree about is that we are all different and what works for one doesn’t mean it will work for another…

      However, my experience with CIDP is a very painful one. It still has not impacted my muscles as it does so many, but I have to tell you – pain is my constant companion. My ability to walk any distance is limited by pain, not muscle. For me, the IVIG gives me energy … and since pain is an energy sucker, I can tolerate my pain better after treatment. I currently have IVIG weekly.

      Additionally, yes, the pain moves around for me. Just as I start to feel relief in my hands, my feet hurt … get that under better control and then my arms and shoulders ache … big sigh. And the unusual sensations do occur all the time. Some have pain (ouch!) and others are sort of funny. Last year when several friends were over, I kept brushing my right leg starting at my knee and going almost to my ankle. One of my friends noticed and asked and I explained it felt like ice cold water was running down my leg! On a not so funny note, I do get the burning you mentioned and it is tough.

      Every year I get one of those small pocket calendars and keep track of all “CIDP related” issues – change in meds/levels/supplements, Dr’s and PT appointments, etc and also my high pain days and what factors are going on around those days. What that does is to help me look for trends/triggers. What I’ve learned is that it is not so much the temperature/wet-dry weather conditions that impact me, as it is a big change in the barometric pressure that affects my pain level. I also acknowledge stress as a trigger (although I usually can minimize that one) and another pain trigger for me is to do too much – walk a little too far (I’ve had to leave my shopping cart in the middle of the store and go home because the pain was too high to continue), work in my garden or home a little too much, etc. I do find that God has a sense of humor though as all the things I can’t seem to do for myself anymore are mostly chores!!! And now I have a valid reason to not do my chores (LoL)!!

      If you find the alternative treatment gives you substainable improvement, please share!

    • Anonymous
      March 17, 2011 at 11:30 pm

      Thank you Jennifer, Thank you Linda,

      Well, I am reluctant to state my beliefs but here goes. I have had severe pain from CIDP so I started this “out of the box” therapy ! I would like to say it’s working, maybe it is ! However, Linda’s reply states CIDP has a characteristic of having pain revist us… Simply put, did my “out of the box” treatment fix it or did it fix itself ??? I have stopped taking my pain meds (Gabbapetin) 100 %. I don’t get IVIG infusions and I feel good. My pain on a scale of 1 to 10 is 0 to1 with 0 being the average… I’m excited… or am I in a valley of false hope ? Will the pain return in yet a different location or did my snake oil work ? I can’t function on all 8 cylinders – but I’m not in pain and this means the most to me. I will let you guys know after 6 months if I belive this stuff works or not. Personally, I believe it works, to be without pain is a good thing, at least for me 🙂 I’ll keep ya posted. Let’s ALL hope it works !

    • June 30, 2011 at 1:50 pm

      Tom, I was diagnosed with CIDP in May of this year, but have been suffering from it for a very long time. Similar to yours, as of last year the pain became unbearably excruciating. “Was” being the operative word here, though.

      The moment I was diagnosed I immediately contacted my naturopath. Since then the pain has subsided significantly, and I know my legs have gotten stronger. I know this because before I had to lift them with my hands to place them on the wheelchair foot rests, and now I have the strength to lift them without any help. Like you, though, I wonder if the relief will come and go. I wish I had an answer for you.

      Despite the significant difference in my symptoms I still fall, have numbness, and have horrible problems with balance. I don’t fall every day or even every week, mind you. But since I don’t know when I’ll go down I’m in a wheelchair most of the time. While I use a walker here at home, so as to work my legs, I can only take a few steps mainly because I get tired. But most importantly because my hands and arms hurt from the pressure I place on them. I’m terrified to fall that I tend to bear most of my weight on the walker. I suppose my reasoning is that unless I’m holding on to it tightly and my leg or legs give out the walker won’t support me.

      While this alternative approach seems to be helping me, I question if I’ll ever walk again without falling. When I spoke to the naturopath I asked if he had ever heard or treated anyone with CIDP. He was honest and said no. However, he mentioned that he along with his collegues around the country have done extensive research and have had much success in treating nerve related issues. Only time will tell if this natural approach will help me.

      I wish you the very best, and truly hope whatever treatment you are using will help.

      Sorry for making this so long. It is such a relief, however, to be able to share with others my personal challenges, and know I’m completely understood. It’s also been quite refreshing to read everyone’s posts. I’ve gleaned so much from their insight.

    • Anonymous
      April 15, 2012 at 2:09 am

      Can anybody tell me about cymbalta side effects? Tried one 30 mg tab and it knocked me sideways. Don’t know whether to try it again. I took first pill in the AM. Perhaps, not that I’ve recovered, I’ll try another but in the PM. All I wanted to do was sleep and I felt like I was in a fog. Not much fun. Pain gone tho 🙂 One of those cases where the cure is worse than the disease?

    • GH
      April 15, 2012 at 7:27 pm

      Took, you should probably start a new thread for this, but hete’s the word on Cymbalta from the NIH:

      I’ve never taken it, and refused all antidepressants while hospitalized. I have constant neuropathic pain and I just live with it.