Ability to Work with CIDP

Connie, CIDP varies so greatly between us it is nearly impossible to cite a norm when it comes to returning to work. Those having jobs that require more physical activity may be affected more negatively than others. My job required a great deal of air travel that I can no longer do in a wheelchair. Others who had office type jobs have reported returning to work with little ill affect.

I think the severity of residuals is a key for a return to work, especially as those residuals may impact the work itself. You may want to push yourself a bit to get back to work. Sometimes we just need to have the courage to give it our best shot. A little physical therapy can be a confidence builder too.

I don’t think treatment is as bad as CIDP can become without medication or therapy. Yes, some of the treatments can have side affects for some, but not all. What treatments have been suggested for you?

There are some other discussions about CIDP and work here: http://www.gbs-cidp.org/topic/how-many-of-us-work

There is a great deal of variation, so generalizations are not meaningful. But certainly CIDP can be far worse than the treatments. I spent four months in various hospital units (counting rehab), two weeks in an ICU, and much of that time in serious pain from the neuropathy and associated conditions. While I was fearful of plasma Exchange (PE) at first, which was the most invasive treatment, it turned out to be nothing to be fearful of at all. I had all of the standard treatments and am grateful for them.

As for work, CIDP forced me into retirement but I was close to retirement age anyway. Today, three years out of the hospital, I could work, but am not planning to.

Connie, I’m 53 and one year post-diagnosis. I was on medical leave from work for 5 months. It wasn’t until treatment (IVIG and Solumedrol) that I was able to return to work. It helped me regain enough strength and stamina to get through the day. I have an office job, so it’s not too strenuous. Fortunately, my company accepted my conditional return, which specified working remotely two day every two weeks, so I could get infusion one day and recuperate the next.

Hello Connie,

As has been pointed out, there is considerable variability in the disease course, the effect of treatment, and the work you already do. My CIDP was not particularly severe and my employer was accommodating, so the missed days were handled as regular sick days or I made up the work some other day. Once the treatment regime was stable, I worked full time and still do. My job is a lab job, so I don’t have to have great stamina or strength. If I had been a professional musician, I might well have had to give that up for another music job, at least for a couple of years.

As for treatment, get your diagnosis confirmed and then get treated. There is evidence that the long you go without treatment, the worse your long-term outcome will be. There are side effects to the treatments, to be sure, but unless your case is very mild, I suspect the side effects are better than the disease.

~MarkEns

Hello Connie,

CIDP treatment used to be bad for me because it was difficult to get veins. That was the reason it was painful and why I didn’t want to go to the hospital to get my IVIG. Although I knew I couldn’t live without IVIG it was painful to get treatment. The I got a port implanted and now everything is different. A little pain when the needle is inserted and that’s it. I take IVIG every 15 days now and never had to look for a vein again.
When there are things like that one can have second thoughts about accepting treatment. I have a friend, 59, with CIDP, that tells me again and again that he cannot do without IVIG (3 days per month).
About work, I think every case is different, but I would definitely no stop working only because of the CIDP. I had to adapt a little bit, but I have not changed my job, still working in the same profession, still traveling (although not as much), driving around to visit customers, walking with them to get to places (although not as fast)… I think I have slowed down a bit, but still able to maintain my job and the same activities. There where times I thought about changing jobs, but I don’t think I could afford the financial impact that could have on my family. So, I’ll keep this job as long as I can, but I’m certainly looking for something else to do after that. I may became a teacher or writer or do something else.
I would like to encourage you to stick to the treatment and continue work if you can. You will feel better with the treatment.

Cheers,

Marcio

Hi,folks

Hi everyone,
Just recieved CIDP diagnosis Tues. I am(was?) a concert pianist, and have a studio load of 35 students. Had first IVG yesterday….want to be agressive. Was first told I might have ALS, and though this news is devestating, it looks better from where I am sitting….at least there are treatments to start with. Probably had it for ten years, but due to asthma, had been on high doses of Prednisone for 8 years. Symptoms started emerging after a year or so after not being prednisone dependent. This is the first time I have ever written or joined a forum. Just did not want to waste time. Trying to keep the fear and anxiety at bay. I am 56, and married to a professional cellist. Don’t know for sure how life will be affected. Reading your posts helped me. I feel very alone in Montana with this disorder. Any suggestions to the newby?
Thanks for listening, and hang tough.

Susanna

Porcellus, it is impossible to say for certain how your life will be affected because there is so much individual variation. For example, one of my doctors told me that he didn’t know if I would walk again. Today I walk fine without assistive devices, but I can’t run.

My suggestion is just to get the best treatment you can and do the best you can with the hand you are dealt.

Hi,GH
Thanks for your reply. I appreciate your words, and do not feel so alone now that I know others are dealing with this. Take care.

Hi Connie, It was a difficult decision for me to quit my job because it was so rewarding. As the director of an international program it involved travel (sometimes overseas). The last time I went to China I had difficulty at the airports hauling luggage, etc. Even though I am highly functioning with CIDP, I cannot walk long distances without resting and I tend to stumble and lose my balance so I walk slowly. In addition, it is difficult for me to fly long distances. Airplanes are not handicap friendly!!! As others on this forum have stated: CIDP severity varies from person to person. So, being able to work would vary accordingly. I was diagnosed at 59 so I was close to retirement. Since I was employed for 30+ years at the same institution I was able to reduce to 3 days a week for a year, but found that I was still doing as much because I had the same job description. So I decided to go parttime and worked in a more advisor role while I trained my successor. I realized that I could no longer be as active as I once was and it took my a while to realize it… Lucky for me, I was 62 when I finally called it quits. Now I draw SS and get an annuity from my retirement investments. I try to stay as active as possible. I am finding that I can live with CIDP and still enjoy life.

In my case there was no choice to continue working. I was forced to retire after becoming paralyzed within 10 days. I remember wanting to contact my clients to tell them I was in the hostpital, but I couldn’t speak or use my hands to dial or type for over a year. Prior to that I flew about 110 segments per year for my work (business consulting). Now when I fly I don’t look forward to the experience. I have to do my liquid starvation thing before flying because most planes do not have an aisle chair accessible wash room. Some that do don’t have willing attendants to get the aisle chair out and take you there (American Airlines is the worst). During my last trip in November, they broke my wheelchair twice, once while going to my destination, then broke another part on my return. The red tape involved in filing a complaint is quite annoying and they make a wheelchair-bound paraplegic wait in line like everyone else.

Porcellus,

I trust by now you have a treatment regimen established and have seen improvement. You and your wife are the best judges of if you still have the hands you need to be a concert pianist. God knows the world does not need to lose any, so I hope you can continue. If you find, unhappily, that your skills are what they need to be, consider Leon Fleisher. He taught well and widely, even though he could not play with both hands. Like him, perhaps you may not be able to demonstrate the fastest trills or bring out the inner lines as well as you might like, but you can still teach others the music behind the technique. If you have seen improvement, you might improve even more over the next year or two. Even if you can’t play as well as you would like now, there is still hope that you can eventually.

Godspeed in your improvement,
~MarkEns (a classical music lover)

Depends on type of work you do. At 150 grams of IvIgG each month, I was a whining garden slug unable to move from room to room without crawling, while leaving a slime trail everywhere I went. With an increase to 240 grams of IgG each month and 50 mg of Imuran each day, I regained strength, dexterity and a smile.

However, I can’t return to my profession of classical guitarist because the root nerves going to my ulnar nerve is kaputt.

Just diagnosed after having symptoms for almost a year. Been on prednisone since December, just started azathioprine and we are talking about IVIG, 5 days loading dose and 6 months of treatment. Still working full time but barely holding on by my teeth. I’m a electrician,so sometimes it gets very physically demanding. Debating whether or not to apply for an FMLA?. Hoping for the best