Truthfully I thought I had this whole CIDP thing under wraps. I have experienced the burning nerve pain, the twitches, spasms, brain fog,fatigue, forgetfulness, dizziness, freezing, icy hot feeling, and the ever present nueropathy in both arms and legs and of course difficulty walking. Up till today they have been a pain, even difficult but I had adjusted to a new way of living and moving around plus napping as much as possible, but today I was smacked with reality when I could barely due my job, actually almost couldn't due my job. I am in a secretary type job and so far had been able to still type even if I couldn't feel my fingers really till today... I am barely able to type even this much less the amount of paper work needed for my job. I pushed through it due to I had no choice and I am in agony. My body is making it clear that I shouldn't be doing this....so now I'm a little overwhelmed if I can't type I can't do my job which means no money and no insurance.. I hope I can keep pushing through till my IVIG is setup and hopefully it helps..I am just overwhelmed at the what if I can't or it doesn't help ...then what.... At 34 I am facing things I didn't expect to face and the worse part I have no control over. My body just will not listen to what I want or what I need to do (lol).. and for a person who lives by plans that is just OVERWHELMING.
Don't give up. Hope today was just a bad day and tomorrow will be better. Best wishes that tomorrow, yesterday will be just a memory.
Thanks Panthers12, I am hanging in. Unfortunately so far things are the same, hard to type but I just keep plugging away. I finally got scheduled for my IVIG loading doses for mid Feb so I'm just hanging in and counting days. I have hope that the IVIG will help. So for now once again I am trying to readjust to life with CIDP.
Panthers right. I remember the hopelessness I had in the beginning. It's just a memory. Conserve energy for now.
I empathize and am sorry to hear you are having a rough time. I hope today is much better. None of us have the same situation, but I hear myself in your post (the planning, the concern about your job). I am in my early 40s and had a great turn around of CIDP last year, but am recently relapsing post-surgery and hoping for additional IVIG therapy soon. Yesterday, I dropped different parts of my lunch 3x all in front of the cafeteria to have kind HR folks help get me situated with new items. I can barely stand for more than 5 minutes without feeling like I will collapse. I haven't had this much trouble since the onset of my CIDP (pre-treatment) and I am hanging on with my job as I can. Family and friends are helping me drive me to work (long commute). I have been blessed in that regard. I just keep thinking that the extra treatments will kick me back in gear.
You are in my thoughts. Have a better day!
Sorry- I didn't realize until I read your further posts that you are getting your loading dose. Everyone is different, but I had a huge turnaround with the IVIG loading dose and over the course of the year with monthly treatments, I saw much of my strength come back and reflexes. My biggest issue was pverall endurance, but I could return to most activities. (I am just having trouble now because of a surgery (we believe) caused more stress on my body.) Hang on for your IVIG.
I would like to take the time to express my gratitude that each and everyone of you have taken the time to be apart of my life , even in the small ways of leaving a comment. Knowing there are people out there who understand what I am facing and struggling with physically and emotionally is very helpful. Sometimes you just have to release the emotions some how and this post was my way and to have access to a community that is non judgmental and supportive is an amazing thing. May God bless you all.. I hope your days are good ones more then bad.
I can totally relate. I feel like I’m on a roller coaster. I am a hairstylist and this condition has made it so hard to work. I’m fortunate to be on my husbands insurance but we need my income also to make it. I am only 40 and mentally feel 25 but I sure wish my body felt that way. I start my loader dose of my IVIG on Tuesday, I am nervous but trying to be hopeful. I just would love a day to wake up without constant pain. It’s so hard for people to understand who aren’t going through a chronic pain. It’s nice to have a place to get information and have others who understand what I’m going through.
Szrhndz.. How'd the IVIG go? .. I hope you are recovering well from any side effects you might be having. I have been enjoying this site as well, it really is nice to have people understand and to toss out questions and get first hand responses .. I hope you find great relief with your IVIG. I have done mine and about to start my 1st maintenance dose on the 15th so I am still waiting to see the benefit unfortunately so far I am not responding with anything but increased nerve pain and spasms..The good news is as I am about a week away from the next treatment I am finally back to the level I was before IVIG with less nerve pain and spasms.. Not sure my current brand of IVIG is for me I talk to my nuero today so we will see. Best of luck and GOD bless you all.
txangel992 I hope things start looking up for you. I know it can always be hard to stay positive when things go slowly but you got this. Lots of luck to you!