Anybody with CIDP at 36?

    • June 6, 2010 at 10:19 am

      Hello all,

      I had GBS at the age 36; I’ll be 40 in July. THings are getting really difficult for me, I realized that I will never have my life back, after treating CIDP for 4 years without improving a little bit. (It is true I got out of GBS in one week. I left the hospital thinking I was cured). But CIDP is different, it is always there, it never goes away. I think my doctor’s strategy is do whatever he can so it would not get worse, but I think there is no recovery.

      Anybody with CIDP at my age? With a 9 year-old girl and a 5 year-old boy? With a really demanding job (systems engineer at Cisco covering Latin America)? Church leader and all?

      I wanted to learn how you deal with your life, how you do your job, things that you can and cannot do, tips, advice as I know I have started a new live and need to embrace it, adapt myself (the other day, shopping for mothers day with my daughter at the local mall, I had to ask for one of those motorized wheelchairs, because of the pain in my legs. Believe me, those who have taken it might know it is a difficult step).

      In many posts I see people saying they will sit on their chairs and enjoy the summer and some even say they have benefited from CIDP in some ways.
      I’ll be 40 this year, I have to work, I have kids I need to play with …
      How are you dealing with it?

      Thanks a lot for this forum, it has shown me so much about GBS and CIDP.

      Have a good Sunday.


    • Anonymous
      June 6, 2010 at 7:04 pm

      But GBS & CIDP get kids, teens adults of all sorts. It’s very indiscrimate about who is chosen?

      The pipe dream about sitting on chairs and enjoying summer? IS JUST THAT! CIDP pain is constant and unrelenting. So IF we can pretend to have some moments less awful? Go for it! Some may actually achieve the ‘pipe dream’ and well great for them! To wallow in the misery only brings you down further. Yes you have kids, and they must be the joy of your life. Is there any support structures for you and the kids? You don’t mention spouse, won’t ask why, but friends, family? No help?
      There are many here who have had no help and have found some in various ways? Do outline more about yourself and I’m sure folks will give you sound, well learned and earned advice. There are some very good people here.
      You’ve had it for soo long without help! How strong of spirit you must be! Keep being that way! Please, Don’t ever give up!

    • June 6, 2010 at 9:56 pm

      Hello homeagain,

      Thanks for your reply. I was just trying to get some hope that I could be cured.
      I know this is nothing compared to the stories we see here. I still can walk and I’m grateful for that. I do have support from people around me, specially my wife Rosana.

      I guess people don’t really want to hear complaints from someone whose pain cannot really compare to theirs. I didn’t really meant to complain but to understand the reality. If I’m 40 with CIDP what is the path ahead like? I can’t get my strength back, can I?

      If this is the way it is got to be, than I just want to live as best as I can with my condition. You see, so far I’ve been trying to live a normal life, but I see that it is not normal anymore. For one, I need different shoes, the ones that I have always used are not good anymore. I fell on the street many times but only now I realize I can’t recover if I trip on something or twist my ancle, I need firmer shoes. We will build a house soon, gotta make plans to have my bedroom on the ground floor, not upstairs…It is not the end of the world.

      I’m not going to give up. I have a lot to do still. Thanks for your kind words. They were comforting. Thanks again,


    • Anonymous
      June 6, 2010 at 10:18 pm

      You have a very busy life and CIDP is not easy. Im 37 now,(about your age) Ive been sick with CIDP since I was 22. I have no kids. But I used to be really busy in church,leader in the primary and teacher also. Worked 2 jobs when possible to pay for all the meds,medical bills and insurance. But the last 2 or 3 years it has been getting worse. Now Im at NWH having a stem cell transplant which seems to be my last hope.

      It s hard to learn how to live with CIDP, everybody is different. I think that being positive and what you believe in helps a lot to keep going and do things that sometimes seems impossible.
      Keep busy,exercise even if its a little.Keep moving. And rest when needed.
      Try contacting NWH and see if can qualify for the transplant, that will change your life.

      If you need any help ,let me know.


    • Anonymous
      June 7, 2010 at 10:16 am


      I feel your pain. I will be 39 in August. I was diagnosed with Mild GBS in November 2009, but I might have CIDP or some other autoimmune disorder. I work full-time and have a daughter who is 2 and a son who is 4. I feel the same way that you do, wondering how to cope and why I was stricken at such a young age. I guess 40 is not that young, but you know what I mean. 😉 I want to live an active life with my kids, and if we live to 70, 80, what does that mean for us. 40 years of pain?

      I struggle daily with the symptoms and pain and depression. I worry about having to go on disability and losing my house, not being able to pay for college for my kids. I wonder if I am ever going to be able to do yoga again and jog or am I going to be wheelchair bound. I want to move on in my career, but stay with my company because they are accommodating.

      I did not have to think like this at all 6 months ago, had my whole future ahead of me. I know that there are worse situations, but it does not make it any easier for you and me personally. All we can do is take it one day at a time and count our blessings and be there for our spouse and kids. Is it fair to our spouse and kids either? That makes me upset too. A lot of people on here have very good attitudes and I would like to know the secret as well because as hard as I try, it does not come easily when you are constantly worried about decline, in pain and don’t feel well. I just put one foot in front of the other and try to have things in the future to look forward to. Sorry if I am not much help, but I just wanted you to know that you are not alone.

    • Anonymous
      June 7, 2010 at 11:37 am


      Every case is different. My progression was slow, intermittent and asymmetrical at first with periods of recovery followed by further declines. I started at age 26 (I’m over 60 now) but didn’t stop working until about age 50. Fortunately, or not, this was due to the slow and, thankfully, almost painless progression.

      Will you get better? Maybe. Seek out a lot of “2nd” opinions.

      You say you’ve fallen often. Get a referral to physical therapy. If you fall due to foot drop then get AFO’s. These are braces that hold your foot up.

      As for coping? I usually don’t wear any clothing with buttons. My wife took all the buttons off my jeans and slacks and sewed Velcro strips on the waistband with a little cloth “handle.” I have dangles, or loops on all my zippers. I changed all the door knobs in my house to lever type. I don’t drive much anymore. This is because following one vacation where I did not drive my wife noticed “Hey, you have a lot less arm and finger cramps, why’s that?” Less driving.

      I have special adapters for my knives and forks and pens/pencils that make them bigger and easier to hold. I use a special “spork”- fork+spoon thingy.

      I use earpieces on my phones. I can no longer comfortably hold phones, or cups, or books, or kindles or…..

      Oh, yes, I had my share of depression. Now, I am in the ‘sit in my chair and enjoy the summer camp.’ I can guarantee you that if you fall into the “Oh, poor me’ camp that’s what you’ll get- more oh, poor me. There a books and seminars and expensive doctors willing to talk to you ’till you are out of money about “Behavior Modification.” Ok, OK some cities/counties have free resources you can avail yourself of.

      What’s it mean? A variation on a theme of ‘seek and ye shall find.” What is the theme? If you think it, guess what comes? Exactly, more of it. Therefore, think up, not down. Think forward not about all you’ve lost.

      I’m not talking about thinking yourself healthy, you could try though. I’m talking about a balance between “I’m gonna fight this thing and gee, isn’t life fun!”

      Find out if your workplace offers disability insurance. If yes, do you have it? Is it possible to “buy” an extended version?

      Welcome and good luck.

    • Anonymous
      June 7, 2010 at 11:57 am

      I was just wondering if you checked & read the Private Message (PM) that I sent you. Just wanted to let you know that it might be time to check into some alternative treatments, as you are so very young.

    • Anonymous
      June 7, 2010 at 7:40 pm

      Let me tell you? AT ANY AGE? GETTING CIDP IS TOO SOON! And, treatments are few and hard to got [besides steriods, which, when your’e over 40 raise red flags?] My onset was rather FAST by some definitions or ‘semi-acute’ by others. And, it was mis-diagnosed from the get go…Getting second opinions and more did save me from the ultimate nightmares, I believe. Doesn’t mean it can’t happen in the future again tho – sort of like mutant tidal waves? Hate those mutant waves!
      As for attitude? Well, you can sit and moan about the pain…or work very hard with your docs to find the best pain meds that work for you! IF ANY. Granted, I will take occasionally [once a week or twice maybe?] a percoset type med. for pre-emptive pains -when I’m going to over-exert myself and I know I’ll have pay-backs? For the trying? Only one medication has eliminated my pain and that was an anathestic for an invasive surgery….the next 24 hours were heaven as I was pain free from the nerve stuff, but I did have a hole in me from an ‘exploratory’ test? [Negative, thank goodness!] And had to be careful anyhow… I JUST ENJOYED EVERY MINUTE of IT!!!!!! That particular med is NOT one that a body should get on a regular basis! It’s serious stuff. What we have to do is to help our bodies heal from our own assaults to our own immune systems as best we can!
      As for explaining to the world what ‘your problem is’? I liken it to MS. Both are demeyelinating but both affect opposite ends of the nervous systems. The effect and affect on the nerves chemically [and I’m no chemist?-but I can read!] are similar, just in different parts of the body! I just say I’ve got a ‘cousin of MS’ leave it at that, and folks can sort of relate that it’s NOT GOOD. Leave it at that? And go forth!
      PT does help IF your insurance can give you enough sessions, AND enough time to do it all in! Each of us is a ‘ROME’! We can’t rebuild overnight!
      Hey! What good thing has happened in your life today? I met up with a very old friend and had a good lunch! We had fun! Getting out is essential to our well being, even if folks don’t ‘understand’! Contact is necessary and HUMAN exchange is a big fuzzy in our lives that we don’t get being home-bunnies or cave-dwellers! Keep faith and keep at it! You WILL find your right way! Hugs.

    • Anonymous
      June 8, 2010 at 12:27 pm

      Hello; Marcio,
      I’m sorry you have been stricken with this awful disorder. Rather than go into a long drawn out post with much redundant content, I’ll just suggest that you read my last post to the thread, ‘Been a While’ and re-state the title and author of a book that discusses LDN therapy and how it has helped many afflicted with similar autoimmune disorders. ‘Up the Creek With a Paddle’ by Mary Boyle Bradley may very well prove to be of some help to you and your plight. I have a pretty good idea of what you’re going through and can only say that there is hope if nothing more. You’ve still got a lot of life to live as do I and should explore all viable, safe methods of treatment, so few as they are for our malady. Good luck and read the book I’d mentioned. Nothing to lose but the few bucks for the cost of the book and time spent reading. Good luck to you and don’t give up hope. THere’s nothing any better going on in the pit, I know.

    • Anonymous
      June 8, 2010 at 1:20 pm

      Has anyone on here tried LDN therapy with any luck? Will docs prescribe this? I have something going on subsequent to the mild GBS and I cannot get any doc to help me out or diagnose me and I am searching for answers and help. I don’t want to live with years of pain and discomfort.

    • Anonymous
      June 8, 2010 at 7:54 pm

      I’m about to pull the trigger and see a doc here in NY state that an acquaintance, currently on LDN therapy has been seeing. Unfortunately for your being so far away, this is the only doc I know of currently practicing this line of treatment, though I’m sure they’re out there. This acuaintance of mine has been showing marked improvement since beginning LDN therapy, about four months ago. Good luck and health to you.

    • Anonymous
      July 20, 2010 at 5:11 am

      hi there, you have had lots of good replys, info and suggestion – which no doubt you are contemplating etc.
      Just wanted to let you know i was promptly diagnoised 3 yrs ago at the age of 34 with CIDP. I have 3 children, the youngest had just turned 2, 2 weeks before my first admission, and the others were 4.5 and 6 yrs. I was the primary caregiver yet also working partime and very physically active.
      Please dont give up on not getting better – it all depends on your treatments and responses to them.
      At my lowest i was a quadraplegic (it still traumatises me thinking back to that dark time) yet am now 99.% back to normal! (This is thanks to a great doc and very regular combination of treatments) Am running long distance, climbing mountains, in training for my first half ironman, and just yesterday returned from a 6 week trip of a lifetime with my family exploring the canadian rockies and national parks.
      I am not cured, but am aiming to be 😉 , have learnt lots about MY cidp and how to cope with it and the symptoms at different levels, and am everyday sooo greatful for being able to do what i can!!! (Oh the personal satisfaction of being able to feed oneself and to shower independantly!!)

      All the best to you and your family, stay strong and hang in there!!!!

    • Anonymous
      July 20, 2010 at 9:57 am

      Thanks kiwichick for your story and providing hope! You should be so proud of yourself. Very encouraging.

    • Anonymous
      July 20, 2010 at 11:28 am

      Hi Marcio,

      I started with my CIDP at age 34, with many falls when I was walking (I used to hike frequently). I had a demanding job in the same field as you are working. I was lucky in that my child was a young teenager then, and was at a point in life where I was needed less. I feel for you and others who are struck with this disease while your children are younger.

      I had a slow descent into my forties. To handle my failing health I changed my job function, then went to part-time work and then went to part-time in an easier field. By age 50 I could no longer work. My situation was complicated by failure of a whole host of doctors to diagnosis me, hence no treatment til late stage. Be thankful you already have a diagnosis.

      I probably do have a sit on the porch and make the best of it attitude now, but only because I have already been through the highly stressful events of losing my career, hobbies and many friends. It is much harder to deal with when you are in the middle of it. Just know that though your life will probably change, it can still be good, and try not to let the anxiety get to you. Adapting to what you can do right now, and focusing on that, instead of what you can’t do, helps.

      If you are not responding to treatment (although not getting worse can be considered a response), try to get the doctors to change up what they are doing. Also if you have never tried alternate treatments, it might be worth a try to add to your current treatments. I used them a lot since I was getting nowhere with Western medicine for so many years. I don’t think alternate treatments will cure you or create great improvement, but I do think in my case they slowed my descent.

      Wishing you all the best,