CIDP IVIG – more acronyms, please…

    • January 30, 2019 at 1:11 pm

      About 3 1/2 years ago, my world started to change. That year, I started getting multiple sinus infections. My IT band in my right thigh tightened and pulled my knee cap off kilter. And then, I started feeling just horrible…weak and not feeling well at all. My husband drove me to the doctor and said – whatever they tell you, you have to listen and get better. Well, that appointment led to others and other doctors. 3 years after that appointment, 3 years of diagnoses including Fibromyalgia, IBS, Small Fiber Neuropathy….I was diagnosed with CIDP. That was in December. Insurance approved IVIG quickly and I have had the first dose (the three days in a row) which was not pleasant. I will be getting them once every three weeks now.

      I learned some things for me….I have to drink Gatorade along with my water…before and after the treatment. I have to take anti-nausea medication prior and after. I get a major pain in my neck and back towards the end and the day after. I also have to use my Nasacort the day before and within a day or two after. I get headaches – which I think they are doing more about that next time.

      I feel like I am on an island. Through all of this, I have worked fully. I have continued to do laundry, dishes, and other chores just on a smaller level and much, much slower. My accepted level of clean in the house has decreased because my ability has decreased. No more cleaning the house in one day. Walking fast stopped. Standing long periods stopped. And as time passed, stairs became harder to walk up and down, uneven ground hard to walk across, and other issues occurred. But I still plug forward and do all I can do. No one who doesn’t know me sees anything wrong. This can be good until they get upset that I am walking too slow. And…it’s easy to ignore that I am hurting – for others – not for me.

      So…what do you all do for support?

      Do you reach out locally?

      Any thoughts – anything at all – add it here. I am happy to find people who might get it…who understand.

    • January 30, 2019 at 9:53 pm

      Hi there! You sound like a wonderful person! Smart, hard-working, positive, and I detect a sense of humor.
      If you haven’t already, check out the support tab (above) for groups in your area. It is a good place to start. Actually, this whole website and organization are great. Even before I was able to go to a local support group, I read deep into the “archives”. Just reading other people’s experiences, progress, and questions (even years old) helped me “get” things. I met someone at a meeting whose experience was almost identical to mine (even month of onset of GBS) except that my lifelong insomnia got better (because I was always exhausted) and they could no longer sleep well due to pain.

      Back in the day, I would clean like a maniac when frustrated. After diagnosis (and 2 months in the hospital) I got tired just brushing my teeth. My energy level is better, but I still wish I had super-organized and simplified when I could run around like a maniac. I can go for long hikes, but standing in one area (like a cashier) is excruciating.

    • February 27, 2019 at 4:03 pm

      Thank you. I will have to dig through the archives to see what I can find. I did look up for local groups. I was set a name for a local person who has not gotten back to me. I also heard through other channels that my neuro doc is looking at setting up a support group for his patients. Thanks for your thoughts too – as I can walk for long periods on smooth surfaces, but standing still is horrible as well. Good to hear some similarities, though I don’t wish this stuff on you…it does make me feel more “human”.