CIDP Pain Management…and my story

Hello everyone. I was diagnosed with CIDP 5 years ago after having symptoms for approximately 18 months and Rheumatoid Arthritis just this fall. I have an excellent neuro that I work closely with.

For pain management he started me right out on antidepressants. I can tell you that this did not thrill me in the least. Especially since my husband is a psychotherapist and I am a second grade teacher, we both are well educated on “antidepressants.” HOWEVER, they have been they best thing to happen to me in helping to manage my day to day pain. I do take 90 mg. of Cymbalta. I take them in the morning because they do have a tendency to wire me up. I started out on 30mg and progressed to 60mg and now of course I am up to 90mg. I have been taking Cymbalta for 2 years and have only some stomach side effects which happened at the time I began taking them 2 years ago. Those side effects did dissapate. I would recommend antidepressants for pain control. I tried a few others earlier on, but they did not work as well and they cause horrid nightmares and sleepwalking incidents!

I am infused every 7th week with 90g of gamunex. Because IVIg has a half life, my neuro feels that infusing someone every week or two weeks, is not in the best interest of the patient or the best use of the medication for the disease. I cannot tolerate prednesone and therefore it has never been part of my treatment plan. I was reading someones post a few days ago and she was wondering when she was going to get her “husband back.” It really made me sad. She wanted to know when the IVIg was going to make the pain better, etc. For those who are new to having CIDP, let me share a moment with my neuro with you:

I had been diagnosed for about a year and had been receiving infusions for approximately 9 months. My Dr. had spoken about remission, and stopping and slowing down the process, always reminding me that he would never go away. Of course, I was thinking when it would be in remission, I wouldn’t hurt anymore. WRONG!!! So I ask my neuro very innocently, “So, when do you think I will be in remission?” He smiled and said, “Oh, you are!” Much to my dismay, (because I was still in a lot of pain) and joy (the disease had slowed down!)

I have NEVER been in a wheelchair. I do have permanent nerve damage in both feet and hands and arms. My Dr. made a promise to me that I would never be in a wheelchair as long as I was under his watch and he has held true on his promise so far.

I have bone degeneration in both hands and the start in both of my feet from RA. I came across this forum looking for anyone who may have RA and CIDP. Atl this time, I have only found 2 people in the USA who have both RA and CIDP. They are very unique of course as we all know.

My goal is to put together a team of dr.s who will treat me, but also research as we go along. Some of you may not realize this, but nearly ALL the medications used to treat RA cause demylinating diseases!!! So guess what….our options are limited friends….not many people know what to do with us. My neuro has never had a patient with CIDP get RA before, but he has been awesome trying to find the right RA dr. for me. The first one was not the right one. He was not willing to listen, think outside the box or even want to know what CIDP is. So, six months into my second diagnosis I am on a tear again doing research trying to find out what I can do to help myself and others. I am really interested in the stem cell research that is going on and can’t wait to talk to them about it.

I have 2 appts. this month with 2 different RA physicians which come highly recommended. One is young and looks from his profile that he may be my research guy. The other gentlement was picked because he loved difficult cases. Leads me to believe I may have some luck with him.

To those of you who are seeing GP’s for your CIDP. You need to head to your nearest neurologist.

I have spent hours reading through this forum and cannot thank you all enough for your support and words. It’s so nice to know that there are others out there who are like me.

However, I am a glass half-full person, so unless I am having my once a month “Pity Party”, you will most likely find me on a page of celebrations, proactive discussions, and wherever I can be to help.

I do apologize for the book-length feature. I have five years of CIDP stories all pent-up!!

Is winter almost over?

It’s nice meeting you all!