I was diagnosed with cidp before last Christmas! Wandered why I was so tired after 8 hours of work every day. Have been off work and have had 6 IVIG,s and have got my feeling back from waist to my feet! Still have tingling in feet and numb fingers! Have to apply for long term now that short term has run out, and found out it only pays 60 percent of base income! I was about 2 years from retiring! My question is I am feeling better now but afraid if I go back to work will that reverse my progress? Waiting to hear from my Dr about this but in my work I am doing some physical work and on my feet a lot? How has going back to work affected some of you? I am not trying to get out of work and in April will have been with my company for 40 years!! Thanks for any input!,
First I would like to say congratulations on your getting your feeling back! I was diagnosed November 2012 have had over 40 IVIG and still cannot feel from waist down!
I do want to say please be careful on pushing yourself! You can have a major set back if you do!
Paula said:
First I would like to say congratulations on your getting your feeling back! I was diagnosed November 2012 have had over 40 IVIG and still cannot feel from waist down!
I do want to say please be careful on pushing yourself! You can have a major set back if you do!
I was diagnosed with CIDP in 2003. I worked till 2010. I even had ivig's given to me at work by the home health nurses. It depends on your employer and how understanding and helpful they are. Mine was aware of my condition and was willing to let me take leave when I needed to without any problems. I too wanted to hang on as long as possible. I eventually hit 30 years and lasted to age 55 which was early enough to retire from my job. I took retirement/disability shortly after that goal.
Everyone is different. Best of luck to you.
It depends on a number of things, including what kind of work you do. If you do very demanding physical work then you should definitely check with your doctor first.
In my case I was diagnosed in April 2013 and started treatment a few weeks later. My symptoms are not particularly bad, but sometimes they flare up. I get IVIG and solumedrol every two weeks, and I feel about 90% cured for the two or three days after treatment, and then it slides down, usually stabilizing somewhere around "numb feet and slightly numb hands, but I can live with it." Fatigue increases the farther I get from treatment too.
In my case I didn't stop working. I have a desk job, so it's not physically demanding. In general I find that the more active I am, the better I feel. So I try to go for a walk every day at lunch (half a mile to a mile) and get on the treadmill at home whenever I can -- ideally three or four times a week of brisk walking for 45-50 minutes, but I sometimes go a week or two without touching it, either because I can't find the time or because I'm in one of my occasional low points where I have no energy at all.
But generally speaking, I've found that being more active is better than being less active. Not just as a general concept, but in the way it affects how I feel in there here-and-now.
To ward off the numb lethargic feelings in my legs and feet, I go to my work shop where activity allows me to feel better. After 3 days of working in the shop on my feet I start to feel tired and will rest the next day. I usually spend about 5 hours each day of this activity and I feel it is good for me, plus I accomplish things. I'm a retired automotive technician and try to stay active and believe I do a pretty good job of it. I can do just about anything except use a ladder which can be an encumbrance as I have to wait for help. I was diagnosed at age 70 and retired at 71. I'm now 73 and feel 40. All this CIDP was caused by Statin drugs, so if on Statin's - get off and find another way to control your Lipids, I did. My recovery has been good as the cause was identified and removed. Pace yourself as your body will tell you when it's time to slow down. I still go to my place of employment and run the business when the owner is out of town and do well on my feet for 8 hours a day and up to 5 days at a time.
I was diagnosed 8/2013 while hospitalized I took two weeks “vacation” and the other 4.5 months worked “remotely.” Now that I am on an IVIG routine, I work from home part time and from the office when I can. I am very fortunate that I have a job that I can work remote - Mostly computer and phone interfacing
I am in human resources, and one thing I would recommend is to have your intermittent FMLA paperwork on file, this will protect your job when you need to take time away
After 4 months on short term disability, I’m returning to work. I am an office worker, with little physical duty. My company is very accommodating and will allow me to work remotely every other Monday for IVIG/Solumedrol infusion and the following Tuesday off to recover.
Thanks for your comments! I have two more infusions the end of Feb and I am feeling pretty good right now!! I am considering going back to work after the infusions if the Dr oks it!!