I’m on the mend and am walking on my own now but find when I receive verbal well wishes " about how awful it must have been" I end up in tears. As a result I don’t want to go out in case I encounter these well meaning well wishers as I feel so emotionally weak and unable to verbalized my thanks without the tears flowing. Any suggestions for becoming less emotional will be so appreciated.
Oops, heading should read
Weepiness 4 months later
Hello. I will check tomorrow and let you know. Iam taking a few vitamans and one is for emotions. Hang in there.
Thank you 
Tally said:
Hello. I will check tomorrow and let you know. Iam taking a few vitamans and one is for emotions. Hang in there.
Hi Gayleen. Firstly I’m so glad you’re on the mend. It’s understandable that you’re emotional, you’ve been through a traumatic experience that is life changing. I’m not sure that there is anything that can make you less emotional and to be honest I think it’s a good thing to be able to express your emotions and not try to hide them. You’re still very early into your recovery but I promise you that you will become stronger emotionally just as your body becomes stronger. I’m 6 years from the onset of GBS and still do have flashbacks to that time but it’s easier to deal with and I can even laugh at some of the things that happened like crashing my electric wheelchair into the dinner trolley at the rehab centre and getting stuck! You will start to feel normal again and I’m sure people will understand if you do get upset. Lin x
It is ok to let your emotions out. It is good for you. I sat in my truck today and cried after this doctor said couldn’t help me. Said I also have stage three kidney disease. Iam falling apart. Says its from the GBS. I really don’t know anymore
Hi Gayleen,
So glad to hear you are doing better. I can sympathize about being more emotional than before, it's that way with me as well, although perhaps not to the extent you describe. But I do cry pretty easily now, and it's a little embarassing. I try to avoid situations that I think might bring it on (like sad movies, etc) But I know what you mean about when people ask you about what it was like, and it sometimes brings it right back like it was yesterday, and it's pretty emotionally overwhelming. It might be a little less than it was a year ago, so wait and see, it might subside. I think if you don't bring up the subject of your illness, perhaps people might not think to comment on it. Either that, or just say it's painful to talk about and change the subject. That often works for me.
Good luck, and keep on moving forward!
I think this whole GBS thing has so many emotions tied up for each of us in different ways, and I hope your road to recovery continues, especially the emotional one. I keep reminding myself to cut people a break. Ive gotten a few comments from people that I look “normal”. If they only knew! My legs are burning hot … I call them my “hot lava legs”, especially when I lay down or if I lean back on a chair, my arms get so numb and my finger muscles feel like they were smashed by a big book. My ribs have a super tight strap feeling and my intestines have no sensation of working. I am so weak in my hands and legs, and my muscles have no feeling under the skin… each step I take coming down the stairs feels like my legs will give out. My right knee meniscus is blown. Ive lost 17 lbs of muscle wasting. My whole normal eating habits are out the door… (no beans, seads, bread, wheat, oats, rice, Paleo diet & no night shades - autoimmune diet,… ). They are very frustrating, time consuming and hard to adjust to! How is that “normal”? I keep having to remind myself that some people dont mean to hurt me, others dont know what to say, but most mean well and care about me! I am trying to cut them a break.
You too, will learn ways of coping and learn the right words to say back that help you get through a very hard time. I am here cheering dor you,
Kat
Thank you Lynn, so nice to receive reassurance and encouragement when I tried to explain my weepy reaction to my embarrassed husband, telling him I felt traumatized and that I’ve lost my life as I’ve known it he scoffed it off and told me that I was was being silly. Sigh, this is tough stuff and having this for the 2nd bout has really got to me.
Thank you, it helps to know you made it
Lin said:
Hi Gayleen. Firstly I’m so glad you’re on the mend. It’s understandable that you’re emotional, you’ve been through a traumatic experience that is life changing. I’m not sure that there is anything that can make you less emotional and to be honest I think it’s a good thing to be able to express your emotions and not try to hide them. You’re still very early into your recovery but I promise you that you will become stronger emotionally just as your body becomes stronger. I’m 6 years from the onset of GBS and still do have flashbacks to that time but it’s easier to deal with and I can even laugh at some of the things that happened like crashing my electric wheelchair into the dinner trolley at the rehab centre and getting stuck! You will start to feel normal again and I’m sure people will understand if you do get upset. Lin x
Hello Gayleen,
This whole GBS journey is just plain bizarre; it pummels us physically, and wrings us emotionally. For me, instead of tears, I retreat into myself, and don't allow myself to really go with the emotional flow. Like Kathy Cooper, I have people say how good I look, and I must be doing well as they see me up and doing errands, going to church, etc. What they don't see, is that I allot my activities judiciously so that I can do those things in public. They don't see the exhaustion and fatigue at home, they may not be aware of the short term memory loss caused by the Lyrica (my wife sure does!), they don't know that every minute of the day my arms and legs feel like I have a bad sunburn with dried chlorine on them. And that I randomly feel like I'm being bitten by bugs, or being stabbed with a needle. They don't know that every minute of the day my feet feel as if I'm walking barefoot across hard stoney gravel, whether I'm on my feet or not.
So when they say with the best positive intent that I'm looking good, I must be better I just don't want to address the comment; I don't even want to go there.
I can understand how it can make you emotional. For me, I would deflect the well wisher's comments with a "Thank you, it's still not easy", and quickly change the subject. I ask them something about themselves, this causes their brains to shift direction to address the question. We really can only think about one thing at a time.
If it's weepiness your'e experiencing, then that's what you need; go for it.
I wish you speedy recovery, with strength and fortitude as you heal.
I like your "hot lava legs" description. I get the same ribs feeling also. The loss of strength in my legs is disheartening for me, and the Lyrical has really messed with my appetite. I've gained 30 lbs that past year, and trying to lose it has been very difficult.
Kathy Cooper said:
I think this whole GBS thing has so many emotions tied up for each of us in different ways, and I hope your road to recovery continues, especially the emotional one. I keep reminding myself to cut people a break. Ive gotten a few comments from people that I look "normal". If they only knew! My legs are burning hot ... I call them my "hot lava legs", especially when I lay down or if I lean back on a chair, my arms get so numb and my finger muscles feel like they were smashed by a big book. My ribs have a super tight strap feeling and my intestines have no sensation of working. I am so weak in my hands and legs, and my muscles have no feeling under the skin... each step I take coming down the stairs feels like my legs will give out. My right knee meniscus is blown. Ive lost 17 lbs of muscle wasting. My whole normal eating habits are out the door... (no beans, seads, bread, wheat, oats, rice, Paleo diet & no night shades - autoimmune diet,... ). They are very frustrating, time consuming and hard to adjust to! How is that "normal"? I keep having to remind myself that some people dont mean to hurt me, others dont know what to say, but most mean well and care about me! I am trying to cut them a break.
You too, will learn ways of coping and learn the right words to say back that help you get through a very hard time. I am here cheering dor you,
Kat
I am four & a half months with GBS & I have the same burning, muscle tightness & loss of strength in my arms & legs that a few of you also have. Can you share with me how long you have had GBS & how long you have had these symptoms since your release from the hospital or rehab? I am having no relief from the drugs. I was on gabapentin 3600mgs a day & then switched to lyrica 600mgs a day & am now back on gabapentin & nortryptilene 25mgs a day & am increasing that slowly & have no relief from the burning etc. I am thinking about weaning of all of the drugs slowly & stopping only if the pain increases. Looking forward to hearing your experiences.
Larry
Bergerhoo said:
I like your "hot lava legs" description. I get the same ribs feeling also. The loss of strength in my legs is disheartening for me, and the Lyrical has really messed with my appetite. I've gained 30 lbs that past year, and trying to lose it has been very difficult.
Kathy Cooper said:I think this whole GBS thing has so many emotions tied up for each of us in different ways, and I hope your road to recovery continues, especially the emotional one. I keep reminding myself to cut people a break. Ive gotten a few comments from people that I look "normal". If they only knew! My legs are burning hot ... I call them my "hot lava legs", especially when I lay down or if I lean back on a chair, my arms get so numb and my finger muscles feel like they were smashed by a big book. My ribs have a super tight strap feeling and my intestines have no sensation of working. I am so weak in my hands and legs, and my muscles have no feeling under the skin... each step I take coming down the stairs feels like my legs will give out. My right knee meniscus is blown. Ive lost 17 lbs of muscle wasting. My whole normal eating habits are out the door... (no beans, seads, bread, wheat, oats, rice, Paleo diet & no night shades - autoimmune diet,... ). They are very frustrating, time consuming and hard to adjust to! How is that "normal"? I keep having to remind myself that some people dont mean to hurt me, others dont know what to say, but most mean well and care about me! I am trying to cut them a break.
You too, will learn ways of coping and learn the right words to say back that help you get through a very hard time. I am here cheering dor you,
Kat
Thank you Kat for your support and encouragement, you describe the condition to a tee, like how can all that pain and discomfort be “normal” I like your idea of cutting well wishers a break and will keep your ideas in mind in dealing with my wonky emotions and their well meant sympathy. You take care, wishing you a return to wellness and I so appreciater the support.
Kathy Cooper said:
I think this whole GBS thing has so many emotions tied up for each of us in different ways, and I hope your road to recovery continues, especially the emotional one. I keep reminding myself to cut people a break. Ive gotten a few comments from people that I look “normal”. If they only knew! My legs are burning hot … I call them my “hot lava legs”, especially when I lay down or if I lean back on a chair, my arms get so numb and my finger muscles feel like they were smashed by a big book. My ribs have a super tight strap feeling and my intestines have no sensation of working. I am so weak in my hands and legs, and my muscles have no feeling under the skin… each step I take coming down the stairs feels like my legs will give out. My right knee meniscus is blown. Ive lost 17 lbs of muscle wasting. My whole normal eating habits are out the door… (no beans, seads, bread, wheat, oats, rice, Paleo diet & no night shades - autoimmune diet,… ). They are very frustrating, time consuming and hard to adjust to! How is that “normal”? I keep having to remind myself that some people dont mean to hurt me, others dont know what to say, but most mean well and care about me! I am trying to cut them a break.
You too, will learn ways of coping and learn the right words to say back that help you get through a very hard time. I am here cheering dor you,
Kat
Thank you so much Bergerhoo, such good advice and you describe GBS so well, what goes on individually at home is such a challenge, just being out at public events like shopping, church etc. can be so draining. I will try your idea of thanking well wishers then quickly changing the subject. Emotional ups and downs are exhausting me and wanting to not go anywhere is becoming my norm. Thank you so much for sharing and for the encouraging great advice. You take great care of you, wishing you better days and a return to wellness.
Bergerhoo said:
Hello Gayleen,
This whole GBS journey is just plain bizarre; it pummels us physically, and wrings us emotionally. For me, instead of tears, I retreat into myself, and don’t allow myself to really go with the emotional flow. Like Kathy Cooper, I have people say how good I look, and I must be doing well as they see me up and doing errands, going to church, etc. What they don’t see, is that I allot my activities judiciously so that I can do those things in public. They don’t see the exhaustion and fatigue at home, they may not be aware of the short term memory loss caused by the Lyrica (my wife sure does!), they don’t know that every minute of the day my arms and legs feel like I have a bad sunburn with dried chlorine on them. And that I randomly feel like I’m being bitten by bugs, or being stabbed with a needle. They don’t know that every minute of the day my feet feel as if I’m walking barefoot across hard stoney gravel, whether I’m on my feet or not.
So when they say with the best positive intent that I’m looking good, I must be better I just don’t want to address the comment; I don’t even want to go there.
I can understand how it can make you emotional. For me, I would deflect the well wisher’s comments with a “Thank you, it’s still not easy”, and quickly change the subject. I ask them something about themselves, this causes their brains to shift direction to address the question. We really can only think about one thing at a time.
If it’s weepiness your’e experiencing, then that’s what you need; go for it.
I wish you speedy recovery, with strength and fortitude as you heal.
Thank you Lance B great advice, good too know others also find it hard to talk about and I will try deflecting the subject. You take care. Wishing you wellness.
LanceB said:
Hi Gayleen,
So glad to hear you are doing better. I can sympathize about being more emotional than before, it’s that way with me as well, although perhaps not to the extent you describe. But I do cry pretty easily now, and it’s a little embarassing. I try to avoid situations that I think might bring it on (like sad movies, etc) But I know what you mean about when people ask you about what it was like, and it sometimes brings it right back like it was yesterday, and it’s pretty emotionally overwhelming. It might be a little less than it was a year ago, so wait and see, it might subside. I think if you don’t bring up the subject of your illness, perhaps people might not think to comment on it. Either that, or just say it’s painful to talk about and change the subject. That often works for me.
Good luck, and keep on moving forward!
Thank you Tally,miso sorry about your kidneys. My tears are for you too. Thank you for sharing and letting me know that this emotional stuff is okay and such a big part of GBS. Wishing you strength & good days ahead.
Tally said:
It is ok to let your emotions out. It is good for you. I sat in my truck today and cried after this doctor said couldn’t help me. Said I also have stage three kidney disease. Iam falling apart. Says its from the GBS. I really don’t know anymore
Thank you Lin, this reply is so encouraging, I so want a return to wellness that I forget how early I still am in this GBS thing. Giving myself permission to weep is my goal for today. Thanks for sharing that it does get easier, very encouraging. You take care. Wishing you a return to wellness with great days ahead.
Lin said:
Hi Gayleen. Firstly I’m so glad you’re on the mend. It’s understandable that you’re emotional, you’ve been through a traumatic experience that is life changing. I’m not sure that there is anything that can make you less emotional and to be honest I think it’s a good thing to be able to express your emotions and not try to hide them. You’re still very early into your recovery but I promise you that you will become stronger emotionally just as your body becomes stronger. I’m 6 years from the onset of GBS and still do have flashbacks to that time but it’s easier to deal with and I can even laugh at some of the things that happened like crashing my electric wheelchair into the dinner trolley at the rehab centre and getting stuck! You will start to feel normal again and I’m sure people will understand if you do get upset. Lin x
Please show your emotion. Somebody wrote how people say you look so much better. Maybe on the outside. But it’s true our inside are not. I’d you try and tell them they don’t understand or don’t want to hear it. Why because you look better. I can’t run 6 miles anymore or walk my three miles, ride my bike. Had to sale my horse. I can finally write type. Can’t play the piano anymore. But people don’t see that. I went from 140 to 160. So iam doing better in their eyes. With this horrible stuff. You need to worry about yourself and smile yep doing great (idiots) that’s what I say to myself and then of they only really knew 
Bless you, you hit the nail on the head, You know what I’m feeling physically & emotionally
thank U!
Tally said:
Please show your emotion. Somebody wrote how people say you look so much better. Maybe on the outside. But it’s true our inside are not. I’d you try and tell them they don’t understand or don’t want to hear it. Why because you look better. I can’t run 6 miles anymore or walk my three miles, ride my bike. Had to sale my horse. I can finally write type. Can’t play the piano anymore. But people don’t see that. I went from 140 to 160. So iam doing better in their eyes. With this horrible stuff. You need to worry about yourself and smile yep doing great (idiots) that’s what I say to myself and then of they only really knew
Hello Larry g. I got my GBS in may 2014. Iam 510 was under 140. I lost all my muscle tone in one week. My fingers feel like somebody taking pliers to the finger tips and clamping down. The bugs crawling all night. My back when I lay down feels like somebody pushing on me. Now iam having the chest pains and stomach. Iam not on any meds for pain. Went to a new doctor yesterday. Was told I have stage three kidney disease now due to the GBS. Then doctor said don’t know how to treat GBS. Oh by the way you need a mammo gram. A tube up somewhere because if age and a few other things. I said NO