CIDP diagnosis ’87-others?

    • Anonymous
      October 19, 2010 at 3:49 pm

      I’m new to this site. I’m wondering if anyone else out there is a long-timer like me. I was diagnosed in 1987 at the age of 18 years, 10 months. At the time I did not realize how much it affected my life; I just went along like nothing big was happening. Now, some 23 years later I am finding that I feel very depressed and sad about what I went through. I had my last full relapse in 1996. I still have residual effects: tingling in my toes and fingertips, I still have not been able to run since 1986 (I was an athlete before CIDP), shaking hands, I can only exercise for short periods of time (5-10 min) before I need to stop because of weakness. My fingers swell when I walk longer than a block or so.

      Anyway, is there anyone else out there who was diagnosed years ago and who feels the emotional pain, anxiety, and sadness now? I’m having a hard time dealing with the diagnosis NOW although it came 23 years ago and I am not suffering from the crippling effects as I was then.

      I’m struggling with emotions and I find myself crying about “what I went through.” I never shed a tear then. I would really like to find someone who can understand. I can’t explain it to anyone in my life.

      On the positive side, not a day goes by, not a single day, when I don’t walk up steps and consciously think to myself, “I just made that step without falling” or stand up from a sitting position and think, “I did it without struggle.”

      I am thankful for the recovery I’ve had, just so very sad about having lost my entire 20’s to CIDP. At a time when my friends were living ‘the best years of their lives’ and finding their life mates, I was in a wheelchair or in a hospital bed, asking my mom to cut my food, to help me brush my teeth, or to lift me from the comode. 🙁

    • Anonymous
      October 23, 2010 at 3:22 am

      I am a newbie to this site as well. My CIDP began over ten years ago but was only diagnosed six months ago. My situation is different from yours yet similar at the same time. I am 54 years old, married (30 years next Jan.) and have three great kids, 19, 23 and 25 with one grandchild.

      As I approach the end of my career, the next 10 or so years should be my best. I should be making my top salary, getting the bonuses, etc. but that’s gone, no money, no insurance and most awful no more interaction with collages and customers – no more challenges.

      My kids don’t understand the fatigue and think I am lazy and causing their mom to be overworked and over burdened, and she is all that and more. My wife said to me the other day that she didn’t “sign-up” for this and now that I have SSI I should think about moving out. I think this was the stress talking but wow…

      My symptoms continue to add on and the new neurologist said she thinks that the length of time I have gone without treatment will make it very difficult to get my condition under control, we shall see. For me, the last ten years of fighting and investigating and researching, trying to find out what was wrong with me kept me sane. Now that I know, I must face some really intense decisions for my treatment and for my life and I just might shed a tear or two over the next couple of years.

      What I want to say to you is that you should mourn the loss of the years you can’t get back, its natural normal and healthy. Write down all the things you missed then burn the list and bury the ashes – let the past be gone.

      Now remember, every day is a gift, every step a victory, every set of stairs a battle won and every time you hear the giggle of a baby and a smile comes to your face you know the joy of living and the promise that life, love and living will continue to be with you always.

      A bit of a rant (and thanks for that) but I wish you all the very best. Remember that old silly line; “tomorrow is the first day of the rest of your life”, just go make it happen – God Bless.

    • Anonymous
      October 23, 2010 at 6:39 pm

      I was diagnosed with a peripheral neuropathy in 1989, but it wasn’t very severe so I didn’t pursue an exact diagnosis. Actually the neuro told me to quit wasting my money on Dr. visits, get rid of some of the stress in my life, quit drinking and the symptoms would go away. Well, now that Peripheral Neuropathy got diagnosed as CIDP a few years later and now I am on disability.

      You know, maybe if I had been more aggressive about my diagnosis in 1989 I could have gotten a diagnosis and treatment and I wouldn’t be where I am today.

      ..If “If’s” and “but’s” were “candy and nuts”, it would be Christmas all the time.

      I am where I am and need to deal with it and make the most of it. I stopped being bitter a long time ago. I still get PO’d sometimes, but much, less often. It is wasted energy.

      But, yes, I have been dealing with this for a long time. It is frustrating, I think about it every day, every step, every hour, it dominates my life. I suffer with a lot of pain and it limits what I can do, and how comfortable I am when I try to do things.

      But, I do what I can, and when I can’t, I don’t. I still choose how I live my life. I am in charge of what I do and of how I think. As long as that is like that, I can live.

      Have a great day !!

    • Anonymous
      October 23, 2010 at 7:01 pm

      One Small step

      Your life is your business, and I shouldn’t interfere. But I couldn’t help but notice a couple of verry common things in your post, and things that will lead to disaster in your personal life, and then difficulty with CIDP unless you deal with them.

      Spend some time educating your family about CIDP and its effects on your body. I know that you would rather work hard and do things, but fatigue, pain and other symptoms may be causing you to be doing less around the house. The more you do, the worse your CIDP will get. You can do some things, but there is a balance. If your kids continue to think that you are taking advantage of your wife and their mom, they will villify you.

      The comment “I didn’t sign up for this.” My wife said the same thing. She didn’t know how hard it hurt. You are in a situation that you cannot change and you need help. Someone needs to step up and give you that help. It needs to be them. Rather that condemn you, they need to help you. But they cannot and will not help you if they don’t know how. I helped fix my situation by sharing information with my wife. I told her what I could do and what I could not do. I told her I wanted to help and do things but could not from time to time. Some days I could, but other days might be bad days and I needed rest.

      If you don’t tell them, they can’t guess.

      Stress is a major multiplier of problems with CIDP. If your CIDP is giving you problems AND you have stressors at home AND stressors at work AND money stressors AND other stressors, your CIDP will not improve, it will get worse.

      You said your marriage was 30 years. If you have made it this long, you know the things to do to get past the rough spots. I’ve been married 26 so I know where you are at. I have 3 kids as well, 24, 22, and 20. I love them all and would not trade anything for any of them. My life would be so empty without them.

      I would hope your wife would not bail out on you just because you got CIDP…..

    • October 28, 2010 at 4:35 pm

      Dick says it all. I had GBS in 85, with total paralysis, so I’ve been through all of the emotions you have vented, as have most on this site. Unlike most others, I got round 2 with the CIDP dx in 96, so I pretty much knew what to expect, but it was no easier the second time around. I pushed and pushed, until one day I chose to make some life changes. Took medical disability and within weeks the reduction of stress improved my quality of life tremendously. Found I had the energy to do things with my family. Because of the GBS, my family knew the similarities of CIDP and are very supportive, and understand there are days when I simply can’t do things with them. I get frustrated some days, but no anger as it only eats away at you. But when I can, I take full advantage of the good days which makes the bad days easier to handle. I have been blessed with a wife of 47 years who has stood by me not once, but twice. She has had more than her share of “the worse” part of our vows, and I thank her every day for her physical and moral support. Hope your family will understand the disease and be supportive. Best of luck, and always be thankful the things you can do, and don’t dwell on those that you can’t.

    • Anonymous
      October 29, 2010 at 11:01 am

      I wanted to post a quick comment….

      I totally understand these posts as I was diagnosed with GBS when I was 25 years old. Prior to GBS, I was very athletic and somewhat outgoing. The support system I thought I would have never materialized and that’s fine….it made me stronger. However, there are things in life I intentionally avoided, including long term relationships as I never wanted to be a burden on anyone. At times I mourn my decision not to form a lasting relationship as I truly wanted kids; on the other hand, I’m glad I chose to remain single as it was devastating enough to know my family didn’t care enough to help. If I had to endure the same or the “stress related comments” from a spouse, that would have hurt worse.

      Stay strong, celebrate everything and take care!!

      Edited to add; I hope my comments about things stated by spouses’ aren’t inappropriate. It’s just disheartening and sad to read these statements.