Guillain-Barre and chronic fatigue

I was 39 when I contracted GBS in 1994. PLEASE tell you daughter not to give up or be too hard on herself. My memory too was badly affected. So what did I do? I enrolled in a four-year course to become an acupuncturist. Not that I'm recommending that your daughter become an acupuncturist! But I learned so much about the art of studying with memory problems. After classes, I would type out my notes as soon as possible. Then I used 4 x 6 index cards to bullet point the main subjects of the lesson. I used memory flash cards I made to constantly refresh my memory. I used mnemonics for formulas or things I had to memorize exactly. It may take your daughter a little longer to get through university this way but her sense of accomplishment will be worth it. Explain to her tutors what has happened in her life and come up with a plan, with their input, on achievable goals. Because of her fatigue, it is imperative that she not become stressed because that will only make the fatigue and memory worse. Take things in small bites. Keep a positive and carefree attitude. Go to school to learn because she enjoys the subject matter. Don't put pressure on her that her studies have to be completed in four years, though they probably will be. There is one particularly good site that deals with Chronic Fatigue Syndrome. There are a lot of young people on the site who are struggling with CFS.

One final point. Most universities have counselors and/or tutors that help people with dyslexia. Although your daughter is in no way dyslexic these tutors can arrange for her to have more time and less pressure during exams and study. Reach out for their help and explain your situation. Good luck to your daughter and tell her to make sure she relaxes and enjoys her life! All the best, Rachel. 

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Hi Dojack4411
What is a full CFS workup? I had GBS last year (hospitalised Jan to Apr 2016) and am still very much struggling with the fatigue now. I desperately want to find something that I can work with and stick to that will reduce the fatigue...
Kate

I'm in the same boat... 20 years of fatigue, depression and gratitude for being alive. Still SUX in that my career went down hill, along with my previous lifestyle.

Please read: http://cseweb.ucsd.edu/~pblair/GBS/treatment/acupuncture.html. My son was diagnosed with GBS 10 months back, had 5 rounds of IVIG, inpatient and outpatient rehab. But he has numbness in legs, arms, feet and hands and debilitating fatigue. He cannot get through the simplest tasks without being completely exhausted. We are going to try this. I have found an acupuncturist in Chicago where my son lives that has experience working with GBS. Please don't live with the debilitating after-effects of GBS. Get help. If finances are an issue because insurance does not pay for accupuncture, there are accupuncture that have discounted rates. I hope you will get help.

My son was diagnosed with GBS last year and received 5 rounds of IVIG. Doctors said he was cured but he experiences debilitating fatigue and numbness in arms, legs hands and feet. We are going to try acupuncture and have found someone who has experience in treating this condition. Apparently, acupuncture will stimulate the myelin to grow back. If finances are a concern, acupuncture schools where student acupuncturists perform the procedure under supervision of professors at a discounted rate. I will update on my son's progress.

Guest 18 days ago

Please read: http://cseweb.ucsd.edu/~pblair/GBS/treatment/acupuncture.html. My son was diagnosed with GBS 10 months back, had 5 rounds of IVIG, inpatient and outpatient rehab. But he has numbness in legs, arms, feet and hands and debilitating fatigue. He cannot get through the simplest tasks without being completely exhausted. We are going to try this. I have found an acupuncturist in Chicago where my son lives that has experience working with GBS. Please don't live with the debilitating after-effects of GBS. Get help. If finances are an issue because insurance does not pay for accupuncture, there are accupuncture that have discounted rates. I hope you will get help.

I too had guillan barrae and miller fisher in 2016. I still have problems though...i feel tierd all day very weak tightening of my muscles , and pain everyday i wake up with migraines i feel dizzy at times . Tingling of my head, face and legs. My neurologist says its not the guillan barraie anymore .bevause i shouldnt have any pain or feel weakness . I feel like he doesnt know what hes talking about .

I am new to the site and new to my GBS journey. I was hospitalized on March 8,2018 and discharged a week later to an acute rehab. followed with out-patient PT. Currently we are focusing on endurance. My case was mild and I am very grateful! I do however, suffer from daily fatigue therefore I decided to conduct a search which lead me to this site.
Besides acupuncture, does anyone have suggestions for how to better function. I have tried to push through it but found the next day I am useless. I have also tried to pace myself and have been taking 2 hour naps in the afternoon which helps. Next I am going to try a daily exercise program. Any and all suggestions are welcome!

Hi: Was wondering how you are feeling. I am reaching out to you because your situation sounds very much like mine. I had GBS in April. I had a cold along with dealing with stress. I feel pretty good, but still have issues with my feet & numbness in my face. I also get tired very easily & my mouth gets very dry. I was standing outside last Wed & started to feel myself dehydrating. I thought I was going to faint. I also get winded easily. I was just wondering if you experienced any of these issues. Was also wondering if you ever felt depressed & not interested in any thing.

Im just curious . Finally figured out what's wrong slightly relieve no more inhaling own spit. But I would like a response who has been exposed to black mold?????????????? And what are chances of 2 people in one family getting this. I think mold could be issue also I am B- blood type???? anyone?????????

I was diagnosed with GBS August 2019 & treated with IV
IG. A recurrence of GBS came in October 2019. & I again received a full treatment of IVIG? Since then, I have experienced. Numbness, plain & tingling in my hands & feet. I has caused severe sensation to bedding, paper (books,, magizines etc.) I find it very difficult to hold anything cold, too large for one hand items, etc., etc. Needless to say I am experiencing some depression & not much sleep! Can you give me some help/resources to get me back my life?

Oh shooey I had moderate GBS almost a year and a half ago and this is the first time I have found anyone on the internet talking about moderate GBS. I also have chronic fatigue in the recovery along with sometimes debilitating nocturnal leg cramps and muscle twitching all day long. I don't know anyone else with this and am only 38 years old. How can I reach out? What has worked?

Oh shooey I had moderate GBS almost a year and a half ago and this is the first time I have found anyone on the internet talking about moderate GBS. I also have chronic fatigue in the recovery along with sometimes debilitating nocturnal leg cramps and muscle twitching all day long. I don't know anyone else with this and am only 38 years old. How can I reach out? What has worked?

Hi Mary! I just found this site. Somehow after all my on and off searching this past year just found this- hah! I am a year and a half out from mild GBS and now have chronic fatigue. I have completely changed my lifestyle in so many ways (don't eat sugar or drink alcohol, basically just eat meat and veggies now and take a handful of supplaments, super low key life, kinda socially isolated, on prozac) but am struggling through my doctorate degree at age 38. It's really hard to be so wiped out and am really wanting to connect to folks who are managing this same kind of fatigue related to GBS. It feels like the more I read the more I realize it will probably never go away. So like, how to keep it the least possible?

What have you done that works? Has anyone tried Adderall? i have tried Wellbutrin with some positive impact on the fatigue but the side effects got too much. My counselor / NP just suggested with my insanely worse ADHD in the presence of fatigue that I try that....

Can anyone recommend what type of Dr. To see about this. My original Dr retired and every Dr since them makes me go threw all the steps all over again. I had GBS 20 years ago, but suffer from chronic fatigue. It takes me 3 months to see a Dr for 8 minutes and it feels like I'm running in circles, always more blood work & everything is fine. I need a Dr who understands the relationship between gbs & CF.
Thank you