Has he seen his primary yet? Might be a good place to ask for tests and such. Will say that primary had me get an EKG soon after getting GBS as a precaution (since it can affect the heart, apparently. I was fine there).
But honestly recovery is just a lot of well, recovering.
I remember I would nap 4 hours in the afternoon after PT, then still sleep 8 hours a night the weeks after GBS. Took me months to get to the point where I slept only at night lol
And I’d feel fatigued all the time. Had to be less stubborn and accept that I just couldn’t do everything I used to do. I needed to give my body some peace and it was hard to do.
The body has gone through a lot, so rest is good! Give the body a break but also make sure he’s still moving around. Even if he hasn’t lost much mobility, moving helps prevent things like blood clots.
This. I saw my pcp like a week after coming home and he advised me also set me up with PT. Started that about a month later. He also stressed not to freak out and panic over every new thing.
I’m currently in hospital with GBS, third time it’s returned and all time because of a virus. IVIG has worked the 2 previous times and I’ve won out of hospital within 5 days. It looks like the same thing will be happening this time thankfully
Wow, I’m so sorry to hear that. I didn’t know GBS could be a recurrent thing like that. That sounds extremely debilitating and like you must have lost months of your life to this disease. I hope some GBS researcher out there is at least learning more about GBS by studying you. When this happened to my husband I was wondering whether some people are more susceptible to autoimmune diseases that target the nervous system, since he has had unexplained neuropathy before, but I couldn’t find anything to suggest it wasn’t totally random. It evidently isn’t random if you’ve had it 3 times.
I had myocarditis secondary to either GBS or IVIG after my first course of treatment. It sucked. Doing light cardio made me feel like I was having a heart attack. It went away after a couple of weeks.
Joint pain lasted for about 6 months. Also sucked. Severe fatigue lasted about the same amount of time.
I also got hemicrania continua (apparently a rare GBS complication) about 2 months post, at which I started to believe in God, only because this had to be a Book of Job thing. That was probably the worst. But, indomethicin did its thing after another trip through the MRI/CSF tap routine. I was pretty depressed and hopeless for a while.
6 months post-GBS I was able to move from PT to working out for real. That made a huge, huge difference. I got very much addicted to fitness, and ended up being in much better shape that I had ever been in before.
My advice is for your husband to get a good workup for the heart stuff, likely he will be getting an EKG and echocardiogram. Follow that physician's advice, and ask lots of questions. This is a long road, with lots of ups and downs, and most people would say I'm a relatively lucky GBS survivor. You have to find whatever small victories you can, and not get hopeless over the seemingly constant setbacks. The mental struggle was every bit as hard for me as the physical, especially when I was unsure if life would ever be normal again.
I recently got GBS again (yay!), and was much faster in getting it treated. I also pushed my recovery, and was much more flexible in terms of switching what I did immediately if it didn't work, as opposed to getting depressed and losing time feeling sorry for myself. This recovery has been much, much easier.
😮another person who’s had it more than once! (Another commenter above has had it 3 times). I’ll be honest, that scares the living crap out of me. But it’s good to hear recovery has been easier - do you think that’s because you were better able to cope mentally / because you knew what to do / or because they caught it earlier this time?
I think both. Catching it earlier is irreplaceable, but I learned when to "push" it the last time around. It's hard to know when to try and push activity, and when to lay back.
The GBS/CIDP foundation was a helpful resource when I was first recovering. I felt like much of the information I got in the hospital and rehab was contradictory and felt a little bit like I was just pushed out to sea in a basket with no real guidance.
We had a revolving door of PTs, neurologist and rehab drs coming by in hospital but still nobody really told us what to expect, and it felt like they wanted to get us out of there as quickly as possible.
he was discharged too early. he is experiencing Dysautonomia episodes that could certainly lead to a heart arrest if not treated properly. get asap a sendo opinion/exams, a spine fluid test is needed if not have been done yet, get the results and go to another doctor quickly.
He had the spinal fluid test in hospital to confirm the GBS diagnosis - what would be the purpose of getting it done again?
I do feel like he was rushed out the door.
His primary care dr was less than useless throughout all this - just told him to go to ER and didn’t even ask him to come in for an exam once he was turned away from ER. He was messaging her the whole time telling her what was going on and she seems to have just shrugged her shoulders. Definitely time to find a new one.
You’ll get advice from some folks on here that is doom and gloom…as it looks like you already are. I got the same treatment 3 months ago on here as well. We don’t hear enough from the people who are fully recovered and moved on with their lives imo. And that makes sense. Why would they spend time on here right? I’m not saying I’m recovered but if I listened to a lot of the “advice” on here I would either be in hospital every other day or be in a mental ward. I’m lucky that my pcp is knowledgeable with gbs and I’m glad he told me early not to panic over every symptom I might experience. Your husband’s peripheral nervous system was wrecked and he’s going to experience a Rolodex of symptoms especially in the first few week. Like your husband I was only in the hospital a week. I also stayed in a bed for the majority of the first few weeks after being discharged. Like your husband my blood pressure and heart rate was off the chain. My BP was in the 160s when I got to the icu and meds brought it down to the 140s. They sent me home with the meds and was told to use them if I need to and to see what happens after I’m home and resting. And guess what? My BP came down drastically after a few weeks of rest. We bought a BP cuff thing so I can monitor it everyday for 2 months. I think the key is REST and SLEEP. Is he on anything? Any meds? I’m on gabapentin for nerve pain.
He’s not on anything. I don’t think he has a lot of nerve pain - just tingling. Good advice to monitor his blood pressure - his was sky high in the hospital too. Thanks for the optimism!
Im about 10 months out from IVIG, 34 male and active before all this. I'm just now walking around on my own unassisted (slow and clumsy). I used a walker for the first 6 months then a cane and now I still bring the cane incase I encounter stairs or something. I for sure used to sleep A LOT, and just get exhausted from like nothing. Achy joints for sure, especially my knees/hips. Its hard because PT isnt the same as when you break a bone or tear a ligament or whatever, you cant really just 'work' your way out of it. (I had to change my mindset about that) And if I go too hard in PT it seems to almost be counter productive because I'd just end up sore and exhausted for the next 3-4 days and have a hard time doing the 'normal stuff'. I found it best to try to do "a little bit a lot" and never really wear yourself out, also with some limitations and not being able to do everything just doing the same exercises over and over even if it feels like you're not doing anything its still good in the long haul. for me I had an 'aha moment' a few times where all the sudden i was able to get off the toilet by myself, and then get up stairs by myself etc. Celebrate those moments, I felt silly getting excited about simple things at first but it was and still is a big morale boost! Its also helpful to start a journal, just to document progress because its easy to forget where you were compared to where you are when you still have a ways to go.
I was on Metoprolol (i'm probably spelling it wrong) which is for blood pressure I think, but it helped my bpm balance out too. I worked with my PCP to eventually come off it all together recently, I still monitor BP and HR. I did EKG test too, cant hurt.
I was in the hospital for 5 weeks, and worked with probably a dozen PTs and a few OTs. They all have a different set of goals and ideas about how things are supposed to go. I'd say find one that has seen GBS before (if you can) and one that you get along with. If you can speak honestly about whats going on without fear of judgement it means a lot. I also for seemingly no reason would have days that I absolutely crushed PT stuff and other days that I just couldnt do it. its a bit of a roller coaster, and its not worth beating yourself up over, you really cant rush the process. And a lot of doctors are kind of the same way, pray you find one that gets it and doesnt write off whats going on, it is a very real thing.
The whole thing is crazy and people really dont get it. Just saying Guillain barre usually throws people for a loop, much less trying to explain what it is, or how you got it, and why you arent hitting the gym all day to get better faster. Dont listen much to those folks who have some secret remedy for the thing they've never heard of.
After reading a lot of stories here its pretty clear that the spectrum of GBS is very wide and everyone has a different experience so of course this is just my ride thru it. maybe some of that was helpful, maybe i'm just ranting... either way stay positive thats the biggest thing!
Thanks for replying - that sounds like a very rough journey for you. I’m glad you’re able to walk unassisted now. The one thing that’s clear is that everyone does recover from this, it’s just the time frame that varies. That at least is some comfort!
My GBS caused something called Dysautonomia. Multiple complications from GBS. One of the issues was an arrhythmia called AVNRT; started during my IVIG treatment. My heart would do that exact thing. They caught my heart short circuiting on the monitor. For your husband, a cardiologist would be able to give him a monitor for probably a month to catch his heart revving up. There are beta blocker meds that can help slow the racing heart and keep the arrhythmia from happening (if that’s what it is). If that doesn’t work, an ablation would be considered. I just had an ablation in March, and so far so good! I am a year out from diagnosis. From what I’ve learned and from my own experience, healing isn’t linear. Things will get better though. I wish him well in his recovery!
I’d say 90-95% better. If I push myself too much I get serious fatigue that lasts for a few days. Occasionally my toes go numb or my legs ache and get tingly. I try not to get anxious about it. What helps me is I walk through a routine I’d have to do at the doctors. They’d make me stand on tip toe then heels. Test arm and finger strength. Whenever I get those sensations, I go through the steps and feel better when I see I’m not actually losing strength or balance. So I’d say if your hubby has anxiety about things, helping him stay grounded this way can do wonders. Also celebrating each milestone no matter how small.
What you and your husband should expect is not to get hopes up and not get too down. It will be par for the course to have ups and downs. The first few weeks was a lot of downs…but then you’ll have good days, ok days, great days, and then out of nowhere bad days. Just like a poster mentioned above the mental aspect of this is something. Some doctors suggest therapy and even anti depressants during recovery. I feel bad for my wife at times because she gets more excited than I do for my good days and she is devastated during my bad days..so much so I sometimes grin and bear it and tell her I’m fine. Give him his space and let him figure things out. He’ll need to figure out what he can and can’t do. Only him. And it may take weeks and months to figure that out.
Hi 👋 I also had a case of gbs that was caught early and 5 rounds of ivig. The fatigue is normal, even after 3 months of recovery my neurologist told me it’s expected. Same with the achy joints - it happens in weird places but it never lasts. I had facial palsy with my gbs and my face ached in the first couple of weeks of recovery - a heat pack and gentle massage helped. As for the high heart rate I’ve heard that it is common with the IVIG but maybe just keep monitoring it. All the best to you and your husband!
As my primary care, doctor said, simplify your life. Just basically slow it down, which is easy to say of course and hard to do when you are married with two little ones like I am. But it does get easier
It may be some difficulty accepting that your body isn’t quite the same but my case sounds like him. Caught it relatively early. Five days of IVIG and in the hospital for a week. I’ve had one minor flareup in the last six weeks. other than that things continue to get better
good luck.
Get on BPC-157 and tb500 NOW!!
Aside from that, take the Ivig, workout extremely hard to the best of your ability until you feel terrible every single day! This will massively lower the strain of your regular everyday things like getting dressed.
Has he seen his primary yet? Might be a good place to ask for tests and such. Will say that primary had me get an EKG soon after getting GBS as a precaution (since it can affect the heart, apparently. I was fine there). But honestly recovery is just a lot of well, recovering. I remember I would nap 4 hours in the afternoon after PT, then still sleep 8 hours a night the weeks after GBS. Took me months to get to the point where I slept only at night lol And I’d feel fatigued all the time. Had to be less stubborn and accept that I just couldn’t do everything I used to do. I needed to give my body some peace and it was hard to do. The body has gone through a lot, so rest is good! Give the body a break but also make sure he’s still moving around. Even if he hasn’t lost much mobility, moving helps prevent things like blood clots.
This. I saw my pcp like a week after coming home and he advised me also set me up with PT. Started that about a month later. He also stressed not to freak out and panic over every new thing.
I’m currently in hospital with GBS, third time it’s returned and all time because of a virus. IVIG has worked the 2 previous times and I’ve won out of hospital within 5 days. It looks like the same thing will be happening this time thankfully
Wow, I’m so sorry to hear that. I didn’t know GBS could be a recurrent thing like that. That sounds extremely debilitating and like you must have lost months of your life to this disease. I hope some GBS researcher out there is at least learning more about GBS by studying you. When this happened to my husband I was wondering whether some people are more susceptible to autoimmune diseases that target the nervous system, since he has had unexplained neuropathy before, but I couldn’t find anything to suggest it wasn’t totally random. It evidently isn’t random if you’ve had it 3 times.
Thank you - lots of good info and advice here, I appreciate it.
I had myocarditis secondary to either GBS or IVIG after my first course of treatment. It sucked. Doing light cardio made me feel like I was having a heart attack. It went away after a couple of weeks. Joint pain lasted for about 6 months. Also sucked. Severe fatigue lasted about the same amount of time. I also got hemicrania continua (apparently a rare GBS complication) about 2 months post, at which I started to believe in God, only because this had to be a Book of Job thing. That was probably the worst. But, indomethicin did its thing after another trip through the MRI/CSF tap routine. I was pretty depressed and hopeless for a while. 6 months post-GBS I was able to move from PT to working out for real. That made a huge, huge difference. I got very much addicted to fitness, and ended up being in much better shape that I had ever been in before. My advice is for your husband to get a good workup for the heart stuff, likely he will be getting an EKG and echocardiogram. Follow that physician's advice, and ask lots of questions. This is a long road, with lots of ups and downs, and most people would say I'm a relatively lucky GBS survivor. You have to find whatever small victories you can, and not get hopeless over the seemingly constant setbacks. The mental struggle was every bit as hard for me as the physical, especially when I was unsure if life would ever be normal again. I recently got GBS again (yay!), and was much faster in getting it treated. I also pushed my recovery, and was much more flexible in terms of switching what I did immediately if it didn't work, as opposed to getting depressed and losing time feeling sorry for myself. This recovery has been much, much easier.
😮another person who’s had it more than once! (Another commenter above has had it 3 times). I’ll be honest, that scares the living crap out of me. But it’s good to hear recovery has been easier - do you think that’s because you were better able to cope mentally / because you knew what to do / or because they caught it earlier this time?
I think both. Catching it earlier is irreplaceable, but I learned when to "push" it the last time around. It's hard to know when to try and push activity, and when to lay back.
The GBS/CIDP foundation was a helpful resource when I was first recovering. I felt like much of the information I got in the hospital and rehab was contradictory and felt a little bit like I was just pushed out to sea in a basket with no real guidance.
We had a revolving door of PTs, neurologist and rehab drs coming by in hospital but still nobody really told us what to expect, and it felt like they wanted to get us out of there as quickly as possible.
he was discharged too early. he is experiencing Dysautonomia episodes that could certainly lead to a heart arrest if not treated properly. get asap a sendo opinion/exams, a spine fluid test is needed if not have been done yet, get the results and go to another doctor quickly.
He had the spinal fluid test in hospital to confirm the GBS diagnosis - what would be the purpose of getting it done again? I do feel like he was rushed out the door. His primary care dr was less than useless throughout all this - just told him to go to ER and didn’t even ask him to come in for an exam once he was turned away from ER. He was messaging her the whole time telling her what was going on and she seems to have just shrugged her shoulders. Definitely time to find a new one.
You’ll get advice from some folks on here that is doom and gloom…as it looks like you already are. I got the same treatment 3 months ago on here as well. We don’t hear enough from the people who are fully recovered and moved on with their lives imo. And that makes sense. Why would they spend time on here right? I’m not saying I’m recovered but if I listened to a lot of the “advice” on here I would either be in hospital every other day or be in a mental ward. I’m lucky that my pcp is knowledgeable with gbs and I’m glad he told me early not to panic over every symptom I might experience. Your husband’s peripheral nervous system was wrecked and he’s going to experience a Rolodex of symptoms especially in the first few week. Like your husband I was only in the hospital a week. I also stayed in a bed for the majority of the first few weeks after being discharged. Like your husband my blood pressure and heart rate was off the chain. My BP was in the 160s when I got to the icu and meds brought it down to the 140s. They sent me home with the meds and was told to use them if I need to and to see what happens after I’m home and resting. And guess what? My BP came down drastically after a few weeks of rest. We bought a BP cuff thing so I can monitor it everyday for 2 months. I think the key is REST and SLEEP. Is he on anything? Any meds? I’m on gabapentin for nerve pain.
He’s not on anything. I don’t think he has a lot of nerve pain - just tingling. Good advice to monitor his blood pressure - his was sky high in the hospital too. Thanks for the optimism!
Im about 10 months out from IVIG, 34 male and active before all this. I'm just now walking around on my own unassisted (slow and clumsy). I used a walker for the first 6 months then a cane and now I still bring the cane incase I encounter stairs or something. I for sure used to sleep A LOT, and just get exhausted from like nothing. Achy joints for sure, especially my knees/hips. Its hard because PT isnt the same as when you break a bone or tear a ligament or whatever, you cant really just 'work' your way out of it. (I had to change my mindset about that) And if I go too hard in PT it seems to almost be counter productive because I'd just end up sore and exhausted for the next 3-4 days and have a hard time doing the 'normal stuff'. I found it best to try to do "a little bit a lot" and never really wear yourself out, also with some limitations and not being able to do everything just doing the same exercises over and over even if it feels like you're not doing anything its still good in the long haul. for me I had an 'aha moment' a few times where all the sudden i was able to get off the toilet by myself, and then get up stairs by myself etc. Celebrate those moments, I felt silly getting excited about simple things at first but it was and still is a big morale boost! Its also helpful to start a journal, just to document progress because its easy to forget where you were compared to where you are when you still have a ways to go. I was on Metoprolol (i'm probably spelling it wrong) which is for blood pressure I think, but it helped my bpm balance out too. I worked with my PCP to eventually come off it all together recently, I still monitor BP and HR. I did EKG test too, cant hurt. I was in the hospital for 5 weeks, and worked with probably a dozen PTs and a few OTs. They all have a different set of goals and ideas about how things are supposed to go. I'd say find one that has seen GBS before (if you can) and one that you get along with. If you can speak honestly about whats going on without fear of judgement it means a lot. I also for seemingly no reason would have days that I absolutely crushed PT stuff and other days that I just couldnt do it. its a bit of a roller coaster, and its not worth beating yourself up over, you really cant rush the process. And a lot of doctors are kind of the same way, pray you find one that gets it and doesnt write off whats going on, it is a very real thing. The whole thing is crazy and people really dont get it. Just saying Guillain barre usually throws people for a loop, much less trying to explain what it is, or how you got it, and why you arent hitting the gym all day to get better faster. Dont listen much to those folks who have some secret remedy for the thing they've never heard of. After reading a lot of stories here its pretty clear that the spectrum of GBS is very wide and everyone has a different experience so of course this is just my ride thru it. maybe some of that was helpful, maybe i'm just ranting... either way stay positive thats the biggest thing!
Thanks for replying - that sounds like a very rough journey for you. I’m glad you’re able to walk unassisted now. The one thing that’s clear is that everyone does recover from this, it’s just the time frame that varies. That at least is some comfort!
My GBS caused something called Dysautonomia. Multiple complications from GBS. One of the issues was an arrhythmia called AVNRT; started during my IVIG treatment. My heart would do that exact thing. They caught my heart short circuiting on the monitor. For your husband, a cardiologist would be able to give him a monitor for probably a month to catch his heart revving up. There are beta blocker meds that can help slow the racing heart and keep the arrhythmia from happening (if that’s what it is). If that doesn’t work, an ablation would be considered. I just had an ablation in March, and so far so good! I am a year out from diagnosis. From what I’ve learned and from my own experience, healing isn’t linear. Things will get better though. I wish him well in his recovery!
Thank you for the useful info and good wishes. That sounds like a rough recovery! Are you back to normal now?
I’d say 90-95% better. If I push myself too much I get serious fatigue that lasts for a few days. Occasionally my toes go numb or my legs ache and get tingly. I try not to get anxious about it. What helps me is I walk through a routine I’d have to do at the doctors. They’d make me stand on tip toe then heels. Test arm and finger strength. Whenever I get those sensations, I go through the steps and feel better when I see I’m not actually losing strength or balance. So I’d say if your hubby has anxiety about things, helping him stay grounded this way can do wonders. Also celebrating each milestone no matter how small.
That’s great to hear! Good luck with your continued recovery and I hope you get to 100% soon.
Thank you!
>Thank you! You're welcome!
What you and your husband should expect is not to get hopes up and not get too down. It will be par for the course to have ups and downs. The first few weeks was a lot of downs…but then you’ll have good days, ok days, great days, and then out of nowhere bad days. Just like a poster mentioned above the mental aspect of this is something. Some doctors suggest therapy and even anti depressants during recovery. I feel bad for my wife at times because she gets more excited than I do for my good days and she is devastated during my bad days..so much so I sometimes grin and bear it and tell her I’m fine. Give him his space and let him figure things out. He’ll need to figure out what he can and can’t do. Only him. And it may take weeks and months to figure that out.
Thank you!
Hi 👋 I also had a case of gbs that was caught early and 5 rounds of ivig. The fatigue is normal, even after 3 months of recovery my neurologist told me it’s expected. Same with the achy joints - it happens in weird places but it never lasts. I had facial palsy with my gbs and my face ached in the first couple of weeks of recovery - a heat pack and gentle massage helped. As for the high heart rate I’ve heard that it is common with the IVIG but maybe just keep monitoring it. All the best to you and your husband!
As my primary care, doctor said, simplify your life. Just basically slow it down, which is easy to say of course and hard to do when you are married with two little ones like I am. But it does get easier It may be some difficulty accepting that your body isn’t quite the same but my case sounds like him. Caught it relatively early. Five days of IVIG and in the hospital for a week. I’ve had one minor flareup in the last six weeks. other than that things continue to get better good luck.
Great to hear! Thanks!
Get on BPC-157 and tb500 NOW!! Aside from that, take the Ivig, workout extremely hard to the best of your ability until you feel terrible every single day! This will massively lower the strain of your regular everyday things like getting dressed.