r/guillainbarre

Hey #GBS peeps!

I got sick end of 2019 was finally diagnosed in April of 2020. I had all of the treatments and meds and physical therapy. I was also diagnosed with lyme disease in 2021. I finally got off the walker, crutches and canes Spring of 2023 and off the meds and IVIG by the end of the year.

I still have pins and needles in my feet but its liveable ... but lately I am worried that Im on my way to a relapse. Im getting tired easily, I go to the gym on the reg and am exhausted by the time I get home and I have noticed Im getting shortness of breath here and there, that really worries me and yes Im going to go to the doctor (I haven't heard from my neurologist in years I think she was relieved to be rid of me quite frankly) and see whats what, but I was wondering if anyone has ever relapsed and what the signs were.

Thank you and hope everyone out there is doing ok.

Hi everyone!

​Here’s a second update on my brother. He’s been battling severe GBS since April 2025, spent 8 months in the ICU, and was on a ventilator the entire time. Last week, they capped his throat breathing hole to test his breathing, and we finally got to hear his voice again! 🥹🥹

​But today brought even bigger news: when my mom and I visited him, he was able to hold her hand! 🥹 Up until now, he could only move his head, so this is a massive milestone for us. I’m in tears and still in disbelief. A full year of stress and worry just melted away in that moment. We’re so hopeful he keeps progressing and gets to come home soon.

​I wanted to share this not just as an update, but to thank everyone here for the constant support. I really don’t know what I would’ve done without this community. Huge thanks to all of you! 🤍🤍

My husband just turned 36 and is a very active and healthy guy. On Friday, July 24th he was complaining about tingly hands and feet. Saturday the 25th he was struggling to walk so he went to the ER and was admitted with suspected GBS, they didn’t actually diagnose for like a week.

Since then he has been to IMCU and now the ICU. He had IVIG treatment on the 25/26th. He’s been on the ventilator for about a week now. They tried to take it out at one point but his heart rate ended up tanking and they put it back in. They also found he had pneumonia but I think that’s cleared up now. He is so anxious that they keep him sedated most of the time. :(

Today, they are putting the trach in. His mom is so freaked out about it and it’s causing me to freak out even though all of the drs have reassured me that this will be much better.

After the trach is in, in a few days he will be moved to a speciality hospital.

I am just looking for support and some success stories in similar situations. This guy is my person and I’m holding on to these stories and will be sharing with him when he is able to hear them.

I was diagnosed 10 days ago, 5 IVIG treatments this last week M-F

I never lost the complete ability walk (not easy and I definitely need a cane but I can make it room to room)

I have no new tingles moving up but from the rib cage down it feels like every nerve if firing at the same time. Almost like I have electricity running through me And my previous back injury is exacerbated to the extreme making sleeping almost impossible

Any suggestions how to help with these symptoms

I had Acupuncture 2 weeks after being released from the hospital (6 weeks in hospital).

I ended up making a full recovery from GBS but, I don't know if the acupuncture played a roll in that or if it was coincidence.

Do any of you have any experiences post GBS?

Hi. I think i have this condition but no doctor seems to want to help. I started feeling weakness in my feet August 4th. Then it progressed to one leg. This past Sunday it turned into weakness in both legs and now it's also in my arms. I can still walk but it's difficult. I also have very little feeling in my groin area. Normally when I have to pee, the urge is super strong. Now it's barely there. I've lost all sense of touch. I bite and scratch myself and can't feel it.

I can't feel the bottom of my feet. My boyfriend touched my shoulder and it feels numb. I had a really bad case of the flu about 3 weeks before this started. No pain. I've been to the ER twice and they would only do an mri of my lower back and blood work. Nothing showed up. I read that a spinal tap is needed. How can I get a doctor to order this. My neurologist said he doesn't know what it could be and wants me to go to a research hospital. I called the research hospital he recommended and they don't have an opening until late October. I went to catch this and start some sort of treatment before it gets worse. Right now I can walk but it's difficult. Any advice would be appreciated.

I was diagnosed with GBS in late May, and I left the hospital a few weeks ago. I had one round of IVIG. I have a neurology appointment in November, and my only support until then is PT/OT. They say I'm getting worse and need to get another round of IVIG. I asked my primary care doctor (who is new), and she was clueless/didn't know how to help. Do I just have to continue to get worse and wait until November to get IVIG? Neurology says they can't see me sooner. Is there anything else I can be doing? My primary care doctor says she's open to ideas. Thanks!

I was officially diagnosed a week ago today. I appreciate I have been very lucky to not be in hospital/on a ventilator.

I find it difficult to walk more than a few paces without holding on to something with support. I have constant pins and needles in my hands/feet and a loss of dexterity e.g. I can no longer open a bottle of Diet Coke.

It takes me twenty minutes to get to and from the toilet which is maybe 15 steps away.

Obviously with all this I’ve fallen massively behind at work. They have been brilliant up to now but I have constant emails chasing and cc’ing my manager in. Obviously he has to say something when someone involved him. I’m very concerned they will force me to take unpaid leave or, ultimately, sack me.

I’m UK based. If anyone has any support or experiences to offer I’d be very grateful.

Hey everyone,

​I’m currently at the 3-month mark of my GBS recovery (AMAN variant). My physical progress is coming along—I've been working hard on quad strength, seated knee extensions, and recently got my forearm lifting off the table again!

​That said, resting in bed/a chair all day gets extremely boring, and passive entertainment like movies and reading can only do so much. I’m really looking to connect with fellow GBS survivors or anyone in rehab/recovery who wants to chat, hang out on Discord, or just trade recovery updates and banter.

​If you’re at a similar stage, have been through this, or just want a casual chat/voice call buddy to pass the time with, feel free to drop a comment or send me a DM. Keep fighting, everyone!

...and if anyone has ever gotten a nose piercing, they know that your eye will release tears on the side that is being pierced.

My eye did not produce tears, and I couldn't feel the piercing at all.

The piercer was so confused, and I just looked at him and said, "I can't feel my face, I have GBS."

So, my GBS peers, if you like body mods, now is the time!!

One year and I feel like the life I wanted to have (and ultimately ended up having despite GBS) is not for me. I work in tech and every day I feel like I need to drop everything and go become a barista in Southern Europe. Did anyone decided GBS had to lead to drastic changes in their life?

It drives me nuts. When the muscle spams start in bed. Just the sheet brushing over my thighs causes my whole body to spasm. It happens again and again. Then when I finally wake up and go sit in the living room, my legs get so stiff, feeling so full, it takes a while to get moving. Then, when I do, it feel like I am walkning on tree trunks...It's just nuts. Is this a common exper4ience?

So I had some sort of gastro issues in March and been officially diagnosed today after an NCS and EMG. I feel very lucky, I have constant pins and needles in my hands and feet and significant muscle weakness in my legs (I’m now using my grandma’s walker).

I appreciate this is nowhere near as bad as other stories but would just like to know, what the next few months look like?

I have been referred for neurophysio and a follow up in 2 months for a further NCS and EMG, then it will be a lumbar puncture from there.

I’m panicking and would like any advice. For context I can walk unaided for maybe 4/5 steps, then need support. My 84 year old grandma has donated her walker which doesn’t feel great, as I’m 29.

I have constant pins and needles in my hands and feet, shooting pains up my arms and legs, and significant muscle weakness in my legs. The muscles in my arms seem ok.

I don’t know, I was diagnosed today and just looking for some support

Kinda NSFW but any of you other men have trouble cumming during sex? Idk what to do and I hope the numbness gets better. It’s genuinely eating at me inside :(

TMI but I also can’t tell when I’m inside of her until I’m like 3 inches deep. Everything feels so less sensitive. I get close to climaxing but it hasn’t happened yet

My girl is understanding but I can’t help but feel some type of way about it. Anyone have advice or experience with this? Kinda lost and feeling down

Has anyone ever tried or had any luck with Lidocaine or even Capsaicin patches on feet or hands? I'm 4 years post GBS and my left foot especially never recovered sensation other than tingling & pain and it dials the pain volume up to 11 in the evening and when I've over done it - especially the plantar / metatarsals where toes connect to foot. TYSM for any advice!

Hi everyone, I’m looking for advice and guidance, especially when it comes to applying for SSDI.

Last October 2025, my life changed completely. I was diagnosed with Guillain-Barré Syndrome (GBS). It started when my calves went numb, and within 24 hours, the numbness had spread all the way up to my thighs. While I was admitted to the hospital, it continued spreading up to my collarbone. I developed severe tremors, lost the ability to walk properly, and was wheelchair-bound for a while.

Currently, I have to use a cane to get around. If I try to do too much physical activity, my back gets incredibly sore. Early on, my tests (two lumbar punctures, MRIs, and CAT scans) didn't show much, but months later I was informed that GBS symptoms and nerve damage sometimes show up or clear up more on testing later in the process.

I’ve always been a healthy person, and I’m just now coming to terms with the fact that I’m not who I used to be. Accepting that I have become disabled has been emotionally tough. It sucks realizing I’m not "normal" anymore and can't do the things I used to do.

I applied for disability within that same month because I knew I wouldnt be able to work for a while, still havent heard anything as of today.

For those who have gone through this, especially with GBS or nerve issues:

• What steps should I be taking right now for my SSDI application?
• How do I make sure my medical records properly reflect my physical limitations?
• Any advice on coping with the emotional side of suddenly becoming disabled?

Any advice, personal experiences, or tips would be greatly appreciated. Thank you so much.

Does anyone have foot pain in the center of the toe pad that is worse with shoes? Im 8 months out from initial diagnosis and this is my only major lingering symptom.