Just joined, could use your expertise
AnonymousMay 15, 2009 at 5:24 pm
I was diagnosed in January. My neuro knew immediately what it was and admitted me to the hospital. I had double vision, facial paralysis,trouble walking. I had 5 days of IViG and then went to rehab. I could not move my legs or right arm. After two weeks I had a relapse. I went back to the hospital for 5 more days of IViG, then back to rehab. I begged to be released in mid-March to continue my terapy at home. I now have my sight back but continue to struggle walking with a walker and getting my right hand to work. Both OT and PT come to my home each week. Soon I will have to start outpatient therapy. Reading your posts has given me a lot of helpful information. For those of you who work, when did you return to your jobs? I am also a little frightened by the types and duration of residual pain. I have terrible pain in my feet like many of you. Drugs never seem to make it go away, it just dulls the pain a little. No one told me this ain could last for years. Is your residual pain of the same intensity as when you were in recovery?
I am so grateful I found this group. Living with this disease is such a lonely experience. Thanks for hearing me out.
AnonymousMay 15, 2009 at 5:50 pm
Hello Shie and welcome. I was given the okay to return to work after 3 months. I didnt have a job at the company I worked for till the following month. Evan then I probbably returned to soon. I am in supervision so I was able to prop my feet up when they really got bad. I think the younger you are the more apt to heal quicker, thats just my oppinion. I am 54 and it has been 1 and a half years since I was stricken.I wrote a journal at first because I was afraid of my slow proggress, others on here encouraged me to do that. It did help to see I was making progress evan ever so slow. My feet are still a problem, although they arent as bad as a few months ago. I hope that has encouraged you. How old are you?
AnonymousMay 15, 2009 at 6:04 pm
I am 52. I can’t walk without assistance or drive my car. Going to the office seems like it would be mission impossible. I am surprised you were able to go back so soon. Being in constant pain makes it hard to deal with people, especially as a supervisor. I hope I still have a job by the time I can get back to work. I am on disability until July 2 and then my doctor will reevaluate me. I am very happy your recovery is coming along.
I appreciate your response.
AnonymousMay 15, 2009 at 10:30 pm
Sorry you had to join such an exclusive club. I really can’t help with giving you a time frame for recovery, because I had GBS long before IViG therapy was used. My case was much worse because there was no treatment at that time. But I will tell you that it does take a long time for nerves to heal. As for the pain, I have never taken prescription pain meds. I don’t know if that is because my pain is not as severe or because I did not take pain meds when I initially got GBS, because I was pregnant. I have had more than one doctor tell me that sometimes pain medication can actually increase pain, over time.
Just learn to take one day at a time and don’t be impatient, because the one thing GBS demands is patience. And know that you are not alone. We are here to help whenever you need us.
AnonymousMay 15, 2009 at 10:56 pm
Hi Shie: Welcome to the family. You are still early in the healing process and no one can tell you what to really expect by way of residuals. I know people who had terrible pain initially and then none at all, while for some of us the pain remains constant and sometimes gets worse. You have a long way to go before you will know for sure. As for pain meds the only thing I know for sure is that everyone has a different opinion. No doctor can tell you either what is right for you-their job is really to listen to you and work with the goals you have in mind. I take pain meds and am happy with that decision for now. You will need to come to your own decision too and just know that you will receive a lot of good advice from a lot of caring people on this site, but noone knows your body like you do. I could not function in constant pain and spent several years working with different alternatives. Be patient and explore all your options and trust yourself.
As for working, I worked after three months. But I only worked 45% of what I used to and have never been able to do more. So I am semi-retired and actually love it. I was 59 when I got sick so I am a little older than you and that does make some difference.
Finally, someone mentioned keeping a journal and I think that is a great idea. You can record your progress but also your feelings and thoughts about what you are going through. I think it helps a lot.
Good luck and keep us informed of your process. Jeff
AnonymousMay 16, 2009 at 3:24 am
Welcome to the forum
I went back to work on reduced hours after 6 months off sick. I started by doing only 6 hours per week and increased gradually, now I’m on 30 hours per week and I expect to go back full time within a few weeks time. If your circumstances permit, I would suggest that when you want to go back to work you start on reduced hours so you can test yourself without getting too tired. In my case, I still suffer from fatigue, mental fatigue seems to be worse than physical, I guess that’s because the worse affected part of my body was my head.
Best wishes for your recovery
AnonymousMay 17, 2009 at 3:45 pm
Thank you all for your warm welcome and helpful advice. Another question came to mind. Whenever I fall asleep, whether it be for 20 min. or 5 hrs., the right side of my body goes numb/tingly. Has anyone else had this problem? My dr. shrugged it off but it is so odd and painful.
AnonymousMay 18, 2009 at 2:56 am
Hi Shie! I have the CIDP but think I really had GBS at first but it didn’t get diagnosed at first. But I do the same exact thing every single night. Both sides of my body goes numb and when I wake up I have to sit there and work my legs with my hands to try and wake them up. My doctor called it sleep parylisis! He told me that is what the nerve damage I already have causing it. Told me that because I am active during the day that I don’t notice it as much but when relaxing and sleeping we can feel the damage and it is the sleep parylisis syndrome. All I have to say is that it is scary and I hate the feeling. So you are not alone on that one! I truely feel for you! Hope you get better soon! Hugs
AnonymousMay 18, 2009 at 3:13 pm
Hi Shie! I sure hope so! I think you and I both are praying it goes away as the nerves heal, if I ever heal! LOL! I can be in bed sleeping and feel it coming on in my sleep. And then I am laying there half awake wiggling my toes and feet trying to get my legs going again. My darn cats then think I am playing mousie with them and then in the middle of the night or early early morning are attacking my feet with a vengence! Have had my toes bitten I don’t know how many times. LOL! Then it wakes my husband up because of the ouch screams. We have several cats that sleep in our bedroom with us and having several jump on your feet at night attacking foot mousie is no fun picnic! ROFL! You can imagine! 😀 Hugs
AnonymousMay 20, 2009 at 7:33 pm
[QUOTE=LindaH]Hi Shie! I sure hope so! I think you and I both are praying it goes away as the nerves heal, if I ever heal! LOL! I can be in bed sleeping and feel it coming on in my sleep. And then I am laying there half awake wiggling my toes and feet trying to get my legs going again. My darn cats then think I am playing mousie with them and then in the middle of the night or early early morning are attacking my feet with a vengence! Have had my toes bitten I don’t know how many times. LOL! Then it wakes my husband up because of the ouch screams. We have several cats that sleep in our bedroom with us and having several jump on your feet at night attacking foot mousie is no fun picnic! ROFL! You can imagine! 😀 Hugs
Thank you for sharing your cat story. It made me smile. Not because of your pain, of course, but because my dog does the same thing. I have restless legs and when I start moving them, he too thinks I am playing. I guess it is good to have a sense of humor.
AnonymousMay 21, 2009 at 8:09 am
Can you imagine having 4 cats and two kittens in your bedrom all chomping down on your feet at night? LOL! We keep them in our bedroom because our bedroom is rather large in size. And don’t let them roam all over the house. We bought one of those litter box toilets where you never have to clean a litter box and all my cats use that toilet. Not a cheap system but it has paid for itself in the long run because I don’t have to buy litter anymore. It automatically flushes their stuff in the sewer system. They all love taking a bath except two. In the summer months they love getting in the tub and getting bathed. No fleas in my house either because I bathed them right when I got them and kept bathing them making sure they had no fleas. I got some very unique cats! Trained very well! All have been fixed so we wont have babies! But somehow someway somebody just ends up dumping another stray where we live and we end up with another cat down the road! I hope we don’t get anymore anytime soon! But they are very loving and effectionate creatures. Just love my darn feet at night when I am trying to sleep! Every night I get cat invasion on my feet while I am sleeping! LOL! Hugs
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