Guillain-Barre and chronic fatigue

Everybody should consider them selves lucky to just have the pain or fatigue part. My mother has had gbs for over 30 years and has never been able to recover. She walks with cruches, often falls and cannot get up on her own. She is a strong woman to live like this and I have never heard her complain about it once. Good luck to all but be great full you are still alive!

Good morning, so sorry about your mom please don't have her to give up. My husband has permanent damages cause it was misdiagnosed for a month. He still requires the walker at times and the wheel chair for long distance walking. He has suffered long term memory loss and we are thinking his short term memory loss is going as well at times. When he is outside to much and we live in Florida where it is hot and he over does it his speech starts to slur big time, (even when he is around a large crowd or if he doesn't know you he would start slurring his words) He has a supra pubic cathered cause his bladder took a hit. Our lives has forever changed he sleeps in a hospital bed. Prayers are with your momma don't have her or you to give up. I know it's tough but don't give up. This month on the July 30th will be two years that my husband has GBS but didn't get the proper diagnosed till August 30. He has had one relapse, four rounds of the IVIG treatments. He gets infections like crazy which sends him to the ER.

I had GBS in 1976. I have since surmized it was the Miller Fisher variety though back then just getting a GBS diagnosis was difficult. I was in my early 20s and a lot of that time is a blur to me. I recovered with a few risidual effects. Slight numbness in my right foot and slightly lopsided smile. Back then about the only thing they did for me was prendisone. No physical therapy, I was left to learn to walk and talk on my own. I eventually was mostly normal and had a fairly normal life in my 20s and 30s. At 35 after the birth of my third child extreme fatigue and other symptoms started appearing. I was diagnosed with CFIDS. A few years ago I was diagnosed with hypothyroidism. One DR told me that when you have had GBS, CFIDS, Hypothyroidism and other immune diseases can follow. I will be 60 in a few months and the flare ups are coming more frequently. More studies need to be done on long term effects.

I totally agree more research needs to be done. I will keep you and your family in our prayers.

I had Gillian barre 20 years ago IAM 62 and the pain and fatigur is so debilitating some times life is tough

yes,i have variant of GBS called Miller Fisher syndrome,luckily it was a mild version.after 5 days of immunoglobulin blood treatment my facial muscles returned to normal.still have very bad physical fatigue and nerves in hands and feet are still sesitive,plus i have no reflexes in knees and arms when tapped withdoctors instruments.Neurologist said it will be a time factor for healing,

Hi all, Im not sure how (un)helpful my comments will be but I will share my experience which is a little different than your ones... First of all, I've never wrote about GBS until today. This is something I have kept deep inside me and the least I think about it the better I feel. I was diagnosed with mild to severe GBS in 2008, I was lucky enough to have the right doctor convincing me to go see a neurologist straight away. I was living an hectic lifestyle working in a fast pace environment, not exercising, drinking daily with clients, not eating properly etc... Food poisoning with chicken during a business travel in India is what triggered it! Lucky enough I was back in UK by the time the signs of GBS started. I woke up one day not being able to put the buttons of my shirt or my socks on. I couldnt open doors and one of my leg was feeling weird. I went to the doc which sent me straight to the neurologist. I was kept in hospital that same day. And the next day or day after I was getting the injections of antibodies. By then I couldnt walk or use my hands. Hospital lasted about 2 months. I had physio for another 2-3 months after that. I was lucky enough to be able to walk on my own - short distances and be somehow independent. And there that was it I was back into my investment banking job. I was totally lost at first, couldnt do much of the things I thought I knew. I moved job within the same firm after a couple of months where Hours were more acceptable - still looking at 8-10hrs a day... I was really depressed with the all situation not knowing what to do with my life. I spent all the money I had saved, went into debts, started drinking quite heavily again, screwed up a lot of relationships i had with people - even though my body couldnt take it the old lifestyle...it was some form of escaping the all reality i guess. I felt lonely, tired, etc... But to my family i told them that all was fine. I lasted another year like this and then an opportunity arised to move on the other side of the world for a new job. I took it without thinking twice, i needed to get away of those memories. And to be honest until today (and its been 3years ive moved) I have not thought about GBS... I have talked about being in hospital for a while etc to new friends etc but never in details and never in a way thay brought me back bad memories. by writing this l realise there is different ways to read it and conclude. On the negative , I'm here today writing about it because my legs are killing me the way they used to and i can see my legs spasms from the nerves. And I just went on google and wanted to see if after 6yrs GBS was coming back to haunt me! The spasms have always been there and the pain also but was bearable... The past week though has brought back the memories... I'm quite sure GBS has fundamentally changed my way of working and i cant substain as much stupidity as i used to. On a positive note, i still work in investment banking, i've managed to get promotions and still perform better than my peers. But to do that ive had to adapt and accept i cant work the same way. I have now started my own business on top of this job - which might explain my legs falling appart :) - but at least im giving it a shot. I really dont know what this message is going to be of help but i felt after all these years thats the minimum i can do for all the good readings i did back in the days. Good luck to all of you!!!

Hi ktasurf, I was touched reading your post just now because I can relate to actively not thinking about GBS for a long time. I was 13 in 1998 when I had a severe case; as a 29 year old now I have an issue with fatigue which has led me to explore forums like this in the hope that there is a solution to this. I ignored my symptoms of fatigue for a long time, only recently has it registered with me that my near constant tiredness is GBS related. I didn't want to think of myself as weaker or abnormal or that I hadn't fully recovered from GBS. But fatigue affects my lifestyle and social life in a big way. It's hugely frustrating. But I am learning that by not facing these issues it won't get better. I am searching for an approach to regaining the energy I need to function because I have a huge amount to offer the world but im held back from working as much as I'd like.

My son had a very severe episode of Guillain Barre Syndrome when he was 9 years old( in ICU on a ventilator for 2 weeks and several weeks in hospital) He recovered neurologically after about 12-18 months but developed fatigue, constant aches and pains and fatigue. His neurologist insisted he was fully recovered from GBS but he was really unwell. All tests came back negative and the neurologist kept saying he is ok. Ut he was not ok. It took a year to obtain a diagnosis of Chronic fatigue Syndrome and since then it has been a long long long journey to recovery. He is now 18 and has just started nursing but he is feeling well. I don't think he is 100% but compared to where he was he is great. See a doctor who understands Chronic Fatigue Syndrome and look into graded exercise.
Good luck to you and your daughter.

yes ihave. try caffeine pills, helped me a lot!

I was diagnosed with GBS in March of '98, at the age of 22. I had an extremely advanced case, to where I was paralyzed, and had to be on a respirator for two weeks. After that, was a stint of 7 weeks in a rehabilitation hospital. While I walked within two month of the illness, I still have a lot of nerve pain, muscle spasms, chronic migraine, depression, anxiety, bladder and bowel dysfunction, and PTSD from the episode. I also tire rather quickly, and have lost the ability to run, jump, or squat down.
Has anyone else had similar issues? I get tired, and demoralized, when I feel like I am the only one out there, still dealing with the after effects.

I also suffered memory loss with GBS, not sure whether it was from the medications that I was on eg Lyrica. I was unable to recall what people had said to me, I couldn't remember names and names of medicines, and when I got back home I couldn't remember the duties I was supposed to carry out with my 2 year old twins (it would be supper time and then I realised I hadn't prepared anything for them. My husband and i were in the doctor's meeting together, and I couldn't remember parts of the discussion.The good news is that it seems to be improving ;-) so hopefully by the time I'm back at work I won't be a basketcase anymore.

I know that in my case, the doctors put me into a medically induced coma, so my body could focus on healing. Maybe they did the same to you?
I don't remember my whole time in the ICU, but what I do remember, is very skewed. Like nurses taking me home with them, to care for me overnight. They'd put me in a recliner, in front of the tv, and I was mad that there weren't any good shows on, (I was actually in the hospital bed, watching bad hospital tv.

My 9yr old had GBS Jan.2017 seemed to been a mild case ,he had a lot of prayers and came thru quickly even surprised the doctors ,but now he seems to have a hard time remembering things and says his hands shake sometimes I was not sure if this is after affect of GBS or just being a 9yr old

Thank you so much for this information! Especially the Perry research. I suffered moderate to severe GBS in 1994. I am American but have married and lived in Ireland since 1985. It took me until 2012, after a second bout of GBS to get diagnosed with ME/CFS. That ticked some of the boxes but my symptoms are so much more than that. My feet are still numb, and after surgery, sickness or stress the numbness and paralysis begins creeping up my legs and my hands go numb. Constant fatigue and muscle pain in my back is overwhelming. Unfortunately, Irish Consultants have left me completely unimpressed with their diagnostic skills. In 1996, while still in a wheelchair, I too was told that the good thing was that GBS never occurs twice! The research by Perry has come closer to explaining what happened to me better than anything I've studied. Thank you again for your post.