Question for going back to work

    • October 14, 2013 at 6:57 pm

      Hello Everyone!

      It’s been 5 months since being struck with GBS (May/2013). I work as a safety consultant and most of our clients are contractors. My job requires me to do job sites inspections. When I first was diagnosed with GBS, I was paralyzed from the neck down. Now I have use of both my arms, although still have trouble with range on my left arm (I’m right handed). I can walk now although my feet are still numb. Knees are not as strong as before. I don’t have foot drop. When I stand for prolonged periods, I feel like there’s a lot of pressure being built up in my feet. I know that everybody’s GBS is not the same, but what is the average length of time someone with GBS stays home before going back to work? Btw, I want to go back to work in January 2014. How long before you went back to work?



    • GH
      October 14, 2013 at 8:24 pm

      I was also paralyzed below the neck. I could have gone back to work at a desk job in about a year and a half, but I had reached full retirement age by then, so did not. I actually retired during my hospitalization, knowing I would not quickly recover. Although I walk fairly well now about three years out, I would not want a job which required being on my feet for extended periods. My feet still hurt all the time, the more so when I am on them for awhile. You may experience increasing pain in your feet as they come back, so that might be a factor. My knees are still wobbly, so I can’t run, and I feel they may never improve.

      It just depends on how you feel. As I recovered, I always felt I knew my limitations. At times, I tended to overexert myself, which is not recommended. You will know if you are overdoing it. By the way, I am classified as CIDP, but my pattern was more like GBS than most CIDP cases.

    • October 14, 2013 at 8:56 pm

      GH, thanks for your response. Although I applied for SS disability, I’m too far out from retiring (57) and doubt my request will be granted. Besides, I want to go back to work since I got too many bills to pay. My TDI ruNs out in November. I don’t have long term disability. If I’m not ready to return to work, will I be able to collect unemployment?

    • GH
      October 14, 2013 at 11:42 pm

      I’m no expert, but I don’t think unemployment applies. Disability is the thing, but as you say, permanent disability is hard to qualify for if you are well before retirement age.

    • Anonymous
      October 30, 2013 at 6:41 pm


      It was May 2013 for me as well. I think I was fortunate that I found myself in the hospital very quickly after my symptoms began. Beyond that, due to events I was assigned a neurologist (who had recently moved to the hospital I was in from UCLA where he had seen Guillain-Barre many times) almost immediately. I work as an Information/Accounting Director, and I was fortunate to be able to work remotely and do much of my job from the hospital, in-patient rehab, and home. I returned to my office at the beginning of July, although the nature of my job isn’t necessarily physical except for going up 19 steps. I realize it’s been a couple of weeks since there was activity in this thread, but I hope you have continued to improve and will be able to meet or exceed your goal of returning to work in January.



    • November 4, 2013 at 4:12 pm

      I was told that I was to avoid stress and absolutely not work. I work from home and have been doing what I can, as I can, because I want to be financially independent again and get off disability. I’m 59, so age is not on my side but I’m stubborn and understand you wanting to get back to your former life. 🙂

      My first thought was whether or not you should return to job sites if you don’t have full feeling in your feet and weak knees. Does that pose potential risk of injury for you, if you can’t feel what you’re stepping on? If it makes you feel any better, I can’t bear to stand in one place for too long, either. Kills my feet, ankles and back.

      Are you able to start back at reduced hours until you get a sense of your energy and stamina?

      To tell you the truth, I am absolutely amazed that you are able to consider returning to work only five months after onset. I applaud your excellent recovery time, though I realize you’re not quite 100% yet. But it sounds like you’re almost there, congrats!

    • Anonymous
      December 22, 2013 at 5:08 pm

      Good morning!

      I contracted GBS in mid-November, 2012 and returned to work in March, 2013 (59 years old). I was and am a legal secretary (principally a desk job). I was discharged from in-patient rehab with information about filing a disability claim (I live in Illinois, in the United States). I really didn’t want to file unless it was absolutely necessary due to my age as I am somewhat under the retirement level and this would affect my benefit level quite a bit. I was also concerned about the longevity of my job should I go into long-term disability status. Lastly, I wanted to see if I could do it.

      During the out-patient rehab phase it was communicated that the goal was to return to work but with cautions associated with the return, chiefly concerning driving. In my area transportation to and from public transportation is both heavily utilized and on the underfunded side. Some of it is difficult to coordinate if one needs to get to work at a proper work start time. Some regions may not experience this. The out-patient rehab group wanted those returning to work to undergo driving re-training; in some cases this was not a bad thing as some of my cohort had experienced stroke. (Some of these folks had been taken off the road officially; I was not.) I discussed this with my rehab and primary care physicians and they concurred that I could return to work and drive to public transportation provided I practiced very carefully and with someone in the driver’s seat, and on the local scene. This practice has for the most part continued to this date. I never was much for driving the expressway to begin with.

      Once this challenge was met I returned to work, initially part-time for a week, then back to full-time. I didn’t have any vacation or sick time left upon my return for the calendar year 2013. I never have abandoned the use of a cane, whether it be a four-prong, one prong, or foldable one prong as I work in a major metropolitan area where a lot of people just don’t watch what they are doing (especially if they are wearing headsets). In my own community I feel better about walking without a cane, though it’s probably in my car or nearby.

      I presented a return-to-work slip from my rehab doctor to my employer upon my return as I work with litigators.

      I also asked for a temporary parking placard from the Illinois Secretary of State’s Office. This is a form which needs to be signed by one’s primary care physician, then taken to a local Secretary of State’s Office. I have renewed it once.

      Chicago has been on the cutting edge of accessibility issues for many years. I do take stairs at the local rapid transit stations but for the most part those stations also have ramps. I have not taken the CTA yet (elevated nor bus), and am not sure if I am up to that challenge! That is another adventure that I’d like to take on, but not quite yet.

      My return to work was a pretty successful one. I take it one day at a time. My employer is glad that I have returned. One of our attorneys knew someone who had experienced GBS and who had recovered from it. I was using Lyrica which made me feel muddle-headed. With my doctor’s approval I tapered off it. If I had to describe my residuals I would say that they seem to manifest in my knees. As some rapid-transit seating (even the accessible ones) is a bit on the low side I bring a pillow with me to sit on so it’s a little easier on the knees when I sit and rise. I feel the cold in my feet during the winter. I become tired by the end of the five-day work week and am glad that I can rest a bit during the weekend. As there are folks who are accustomed to me being available during that time it has confused them, I think, but I need the rest at times.

      As your estimated time of return to work is quickly approaching, an update would be appreciated. I hope this has been of assistance.

    • January 31, 2014 at 3:42 am

      Aloha everone, I’m back to work! I started working again last week. The numbness in both feet are still there but has gotten better. I’m able to tolerate standing for longer periods at a time.

    • GH
      January 31, 2014 at 5:20 am


    • Anonymous
      January 31, 2014 at 10:17 am

      Wonderful! Keep us posted.

    • Anonymous
      February 19, 2014 at 10:12 pm

      I got my disability. Any judge in his right mind will not deny you. Disability requires you to recertify every 3 years. With a good lawyer you should have no problems.
      BTW what type of GBS do you have?
      I have AMSAN. It does permanent damage.