Guillain-Barre and chronic fatigue

On January 28, 2012, I was taken to the emergency room...people thought I was having a stroke. I wasn't, it was a moderately severe case of GBS. I was lucky enough to escape intubation in the eleventh hour but was almost completely paralyzed, including the right side of my face. After a month in the hospital and 3 1/2 months in a rehab hospital, I finally came home June 12th and had in-home physio and occupational therapists and a personal support worker.

Now, almost 9 months after being taken to the ER, I have progressed really well physically. Not all the way back to normal yet but almost, probably 80%. I've even recovered most of my lost body weight, which is good as I went down to 68 lbs. when my muscle mass fell.

Over the months, I noticed a growing improvement in the return of my word finding and memory. I have almost no memory of my first 10 days in the hospital but I probably never will have that. That's okay with me.

I've been weening myself off the meds and most days I can handle the pain. But the days that I'm tired, the pain, difficulty in finding words, poor memory, eyeballs that feel like hot jelly, shortness of breath....well, that all comes back but at least not as severely as it used to. I was told by doctors to expect a full recovery and that everything will come back properly, given enough time. After reading all these comments, I'm a little nervous that may not happen but I'm still going to try to be optimistic.

Barista, this is not going to help you with your daughter except to let you know that she's not alone on those issues but I find that most of the stuff I used to be interested in, I am not anymore. They just don't hold my attention like they once did, which makes me feel a little lost and wondering who I am now. As I'm 58, I don't have a lot of time to reinvent myself.

I can only assume that these problems with the fatigue, concentration and interest in life are a direct result of the havoc that GBS has played on the nerves to the brain. Undoubtedly, that would mess up brain chemicals, neurotransmitters. Wouldn't it?

I feel bad that your daughter is going through a tough time. That cloudy feeling in the head is nasty and makes you feel even more tired. It does me, anyway. She is young, has her whole life ahead of her, I wish her all the best.

My plan is to continue searching for any ideas/tips on how beat the fatigue. Quite honestly, I can't imagine spending the rest of my life like this, so I'm hoping to find some little nugget of help.

If, by some stroke of incredible luck, I stumble upon something helpful, I'll come back and share.

Good luck with your daughter, Barista.

Post GBS since '98. chronic fatigue has caused all kinds of problems. I've been in denial that it is a disability, but since I've been unable to hold down a job I recently applied for SSD... waiting on a court date, and fear nothing will come of it other than more debt . Between the CF and severe apnia, I'm feeling real depressed. :( I've had to go to a free clinic for health care and my Dr., who is a 2nd year med student, thinks I'm functional because I can walk, etc.... grrrr

/Hope your daughter recovers fully... it will take about three years, so don't be overly concerned at this point!

yes i do have fatigue and memory loss

Matt,

Some quick advice...You should not be dealing with a second year med student. My husband's initial neurologist did not have the expertise to diagnose and treat his condition and SSD will need statements from a physician. There is a Gullain Barre group in Penn that can ive you valuable advise and can probably recommend a doctor with the expertise you require. If you have a good doctor's statement about your condition, SSD can be obtained without an attorney that will take a third of your award, money that you to survive.

Excellent advice, allenels! It's hard enough to find a full-fledged doctor who can diagnose GBS, never mind a student.

I was really lucky, here in Canada, I had two disability workers visit me in the hospital (because I was there so long), so they saw first hand my paralysis, etc. It was actually one of them that told me not to be in a hurry to get off of disability because of the potential for lasting fatigue - I had no idea about it at that time. I've sure learned since then.

I'll bet allenels is right, Matt. A support group probably can point you in the right direction. I don't know how it works in the U.S., if you explain your situation to a doctor, would he diagnose you pro bono?

Dojack, did I understand that you have had GBS twice, 18 years apart?

Follow-up note: After two years I had my day before a judge, who gave me a favorable decission. His statement said it was the combination of issues that rendered me disabled. Now, I receive $77 more a month than the income line for Medicaid. Rats. :)

An important side note to those out surfing for info on GBS: most GBSers recover without incident-- perhaps 75% go back to their normal lifestyles. So, what you read are the residuals the other 25% must contend with. Regardless, if you or your loved on was recently diagnosed with GBS please understand that the neurological damage continues to regenerate for about three years, perhaps longer in isolated cases. So, odds have it life will go back to normal after a while!

My neurologist summarized it succinctly when he told me I had GBS : "The good news is you aren't going to die. The bad news is there may be times you wish you had." In closing, the same fellow said I would fully recover, no discussion about potential residuals such as fatigue and depression.  My heart goes out to those who have suffered with far greater impairment than my own.

Yes, I had Guillain-Barre in 1981 and got Chronic Fatigue Syndrome in 1988. After the Guillain-Barre, I was never the same.I would tire easily and had weak muscles. That is when the food allergies started.

When my husband first got GBS the first signs were memory loss and slurring speech then went to the feet up to his waist where his bladder took a hit. My husband was misdiagnosed for a month. He started July 30,2012 finally diagnosed August 30,2012. He still has a lot of problems, memory is a huge issue, he doesn't recall past life, friends, family, ect. And I believe the short memory is losing as well. I have been told that it has nothing to do with GBS but it's so strange that my husband started with those two things before then his feet and legs. He has a supra pubic cathered, we are going into two years almost. He can walk short distance, but have to be close to a chair, among other things. He is left with permanent damamges.

the first to go with my husband was memory loss, where he couldn't remember past life, friends, family, co workers his job as a corrections officer, among other things he forgot his long term memory is gone, when we got married, when we met ect. And he had slur words they told us that he had Aphasia that it was all in his head. Then he was having problems with walking, which he required a walker and wheel chair. All of this happen July 30,2012 he was finally diagnosed with GBS August 30,2012. He has a supra pubic cathered that was placed in 4-1-13, morphine pump 8-13, a relapse 5-17-13. He battles with UTI infections all the time cause of the supra pubic cathered. The neurologist here claim that it isn't from GBS, which I highly doubt it cause it doesn't make no sense to us at all as that and slurring speech was to go. Chris, (my husband) had a horrible ear infection that trigger this mess. He can walk short distance but still require the wheel chair, he sleeps in the hospital bed in our room. The GBS is starting to flare up again he just got out of the hospital this past Friday May 16, 2014. I truly believe they need to do research with GBS and memory loss.

Good evening, my husband when first was hit with GBS suffered memory loss long term and it seems like now his short term memory is going as well but we were told it isn't caused by GBS, which I have done researched and people's story like yours which found other people having memory problems. My husband also had slur speech as well all this happen 7-30-12, He was diagnosed with GBS 8-30-12 was in the hospital five days, home for therapy, Almost two years in he can walk short distance, the long term memory loss is gone he doesn't recall family, friends, co workers, his past life, when we meet, our wedding ect I have to share with him over and over again. I believe the short term is going as well cause sometimes he doesn't know who I am either at times, and I have to repeat myself several times. My husband still require the wheel chair for long distance walking, he has a supra pubic cathered cause his bladder took a huge hit, a morphine pump that is placed in his spine, he is fatigue, and sleeps a lot. It worries me greatly.

MS Powell,

Memory loss isn't directly related to the syndrome, but ongoing residuals may be an issue. That is, the nerve damage caused by GBS is predominantly sympathetic and para-sympathetic systems. However, as I also suffer from severe sleep apnia, the neurological fatigue residual (not experienced by all post-GBSers), in conjunction with other residuals (like dysthymic depression), seriously effects my memory, and, subsequently, my ability to complete complex tasks. What was I saying... have I mentioned, I have some memory issues? 

 

JOKE: " I've tried to stop sniffing glue, but it helps me keep my thoughts together."

Matt, Good morning it all doesn't make no sense that was the first thing to go was memory loss the long term of it is gone and hasn't came back, we believe the short term is going as well. But back to the long term memory loss, he also had slurred speech, which they ruled out a stroke and I still do not believe he has Aphasia either. I do believe it is connected to GBS, and they need to do more research in that area, I have read so many other people suffered memory loss with gbs.. My husband is going on two years of having gbs in July 30. The neurologist told us that his long term memory is gone, it may not come back. He does memory games on the computer, and we ask him questions like when is his birthday, things like that nature, today's date or what today is.

MS Powell,

I understand what you are saying, and I am ever amazed at the variations of GBS and its related syndromes. It is easy for me to draw incorrect assumptions based upon my own experience. Rare neurological disorders are baffling, as they can be so complex. And it hurts to see those you love having chronic problems. 

Personally, I would have liked to have missed the whole affair, but I'm still kicking. I like to think my change in lifestyle has saved my life by slowing me down. :)

I hope your husband improves...

Matt,
Good afternoon, thank you. I know my husband was going on the wrong path before he got this sick. God sure gave him a wake up call that he needed if it wasn't for me keep pushing to find the answers to my husband's illness he would have died or on life support within a week or less from what the neurologist states. It's been a battle with this illness that is for sure. But I am not giving up and I am not allowing my husband to give up either. I hope and pray that you don't give up either. I keep reminded my husband of my son Daniel lee that was born with a heart defect called hypo plastic left heart syndrome he was missing his left side of his heart, he fought for six months two open heart surgeries, numerous of infections was home from the hospital for not even a month where he spent the rest of his time in the hospital till the day God called him home. Daniel lee does visit Chris in his dreams my husband was saved in August 15,2012. I pray for you Matt that you start to have better days, that when you are having a bad day that you don't give up just keep on fighting. Our thoughts and prayers are with you and your family. We are just grateful for what we do have with each other, sometimes its hard and stressful but I wouldn't change anything at all. I know he has a long ways to go. Cherish every moment you have with your family, make those memories. Thank you again. Wishing you the best and God bless