New Member- GBS 9/08- I have lots of questions
AnonymousNovember 6, 2008 at 11:05 am
Hi. My name is Tracy and I was diagnosed with GBS in September. I spent several weeks at the Hospital of the University of Pennsylvania and then went to Bryn Mawr Rehab for inpatient therapy. I had never heard of this disease, nor was I ever sick prior to this GBS incident. It happened quickly within 24 hours of my initial shoulder/back pain which I originally attributed to exercise ( I was training for the Philadelphia distance run). I was paralyzed from my head down and had facial involvement and could not swallow, move etc. I really thought I was not going to make it. I have an 18 month old daughter so I just kept thinking about her and how she really needs me to be her mom- that is really what kept me going. I have recovered nicely (or so everyone says, everything is relative, and being so impatient, I don’t always feel that way). I have a bunch of questions to ask and would really appreciate any input to ease my mind, etc.
1. I am always tired- when does this start to go away? I think my family thinks that I am being lazy bc I look essentially “normal”. What about the sensation in your legs, feet, hands, face? how long does that take to “get back” I drop things constantly now and am barely able to function.
2. Weaning pain meds- My MD and I have started a weaning schedule, and it seems to be fine, but then at the end of my day, my back is killing me- is that common?
3. I am afraid of getting sick- I am afraid that this is going to trigger GBS again- can anyone assure me that they have been sick many times after this and GBS wasn’t triggered again? I am also afraid that my daughter may get this-has anyone else felt like this? I never was a worrier before and find myself worrying about this kind of stuff. The MD does not feel that I need to be on psych drugs which I don’t want to be on- that these feelings are normal according to him.
4. If you do have a relapse, is the onset similar to your first episode?
5. Has anyone recovered fully so they can run again?
Thanks for all of your input, really appreciate it!
AnonymousNovember 6, 2008 at 11:34 am
Hi Tracy, Welcome! I had GBS 25 years ago and for the most part I have recovered. Let me start with your first question.
It took me about a year to get over the constant tiredness and weakness. I would burn out in a couple hours if I over did things. My knees would buckle and I would jus fall because my quads were weak and tired. The tingling sensations, etc. stayed with me fairly intensely fr about 4 years and then they kinda of eased up. They were still there if I over did things or when I got really tired. In the last 4 years or so, they have flared up again and on occasion drive me crazy!!!
The back pain is normal. Most of us had it. Don’t be too quick to go off them. I found muscle relaxants and advil helpful.
About getting sick again, this is also normal. Most of us have experienced that anxiety. There is always a question in the back of our heads about relapse. 25 years later I still worry about it. But I have been sick over the years, had major surgery and no sign of a relapse so that I hope is reassuring for you.
GBS is not hereditary so as to worrying about your daughter….welll I think that is normal to think that if it could happen to you, why not to her. But it is not the case. You having GBS does not predisposition her to getting it.
As to recovering and running again….well I didn’t run before so I can’t speak to that…:D But I can say that my quads never really got back to normal. I have never gotten as strong as I was before. I can tell you though that I know lots of folks out there who did get back to sports/running/hiking/skiing/etc.
It is important for you to know that we are all different in our healing. Hang in there. It takes time. I got back to a normal life. Raised four small children, worked full time and have not let GBS stop me from doing the things I wanted to do. As most of us will tell you, GBS stands for “getting better slowly.” Take care and pm me or ask questions. I would be happy to help.
AnonymousNovember 6, 2008 at 12:05 pm
It is nice to me you. You are so new to this. I got GBS Oct. 07. It was not unusual for me to sleep for hours during the day and evening. As time went on the sleeping was less. Over the last few months I am able to stay awake most of the day and some days I don’t fall asleep at all now.
Tiredness is a big factor with GBS. Rest, rest, rest, you need as much rest as you can get and don’t over do things. When your body lets you know it is tired, you must rest it. As for when it goes away, each person is different.
The sensations in the hands, face, feet and legs going away are also different for each of us. The sensations in my hands and face went away within four months. The sensation in my legs and feet became more tolerable
about six months after getting GBS but I still have them and I am gradually getting better. I dropped things all the time at first and rarely drop anything now.
You being barely able to function at this early stage is understandable. Most of us have been where we could barely function. When I came home in Dec. 07, my husband was doing everything for me. Over the last seven months I am now able to take care of myself, house, laundry and cooking. It takes time and I have to say again, that each of us is different in how long it takes.
It is early for you to be off the pain meds if you have all the sensations and pain in your back. What meds are you on?
I have been sick twice with no relapse. I can’t answer your question about relasping. Others on the forum with children can explain how they felt and their concerns with the children getting GBS.
People have recovered fully and they have run again.
Ask all the questions you want to. We have wonderful people here willing to give you support.
AnonymousNovember 6, 2008 at 1:57 pm
I am just barely ahead of you. I was diagnosed on 8/3. I was practicing for the World Sprint Championships in Hawaiian Outrigger Canoe racing when I first came down with GBS. I was released from Rehab on 9/12 and I am slowly getting back into work. I think the fatigue is probably the most noticeable residual symptom for me. But I’m working on it. I was one of those kids in pre-school that fought taking a nap tooth and nail and I was that way throughout my adulthood. Now it is unavoidable. I am paddling a little bit now and working at gaining the 30 pounds of muscle mass I lost, but that has to go slow too.
All of the wonderful people on this forum will have much, much more experience with your questions. My only input is to be patient. For someone who has had little or no patience for anything in my life I am finding that patience is the biggest thing this episode in my life has taught me. Well, maybe except behind the wheel in traffic….
Cheers! Johnny Mac
AnonymousNovember 7, 2008 at 10:53 am
Hi Tracy, Welcome to The Family. Your worries are normal, they go along with the stages of any major life changing illness. Rest assured your daughter probably won’t get this, as it is not contagious from one person to another. Be aware it is an autoimmune issue, which means you are open to other autoimmune issues in the future, but don’t waste life worrying about it. What pain meds are you on? If you are still in pain, you need to find a non narcotic pain killer-many use neurontin or lyrica. Pain is an energy drainer, control the pain and you will have a better chance at recovery. Listen to your body, rest when it wants to rest. You can’t speed up the recovery process, be patient with it and you will have a better go of it. Many gbsers recover to run again, many don’t, its an individual thing. There are no right ways to recover from this stuff, its all on an individual track. I have had the pleasure of relapses and a couple gbs attacks, some were the same and some were different in appearence and symptoms, but all landed me in the hospital. Now I try harder to listen to my body and I can pretty much halt my relapses with meds and rest. But don’t let my history worry you, I’ve been told by many drs that I’m unique;) it usually doesn’t happen to too many people.
Keep a positive attitude and you should be able to enjoy your little girl. Take care.
AnonymousNovember 7, 2008 at 2:16 pm
When you did have your relapses were there any pre-cursors? Did you push too hard? I am really curious because just like Tracy I want to get back to “normal” as soon as possible, but not at the risk of going back down again.
I know one time I was doing stair exercises at the Rehab hospital becauses I have stairs at home and on my second set of stairs my right arm started to get all tingly and I thought, “Wooo, gotta sit down right now and take a rest.” It went away pretty fast and I haven’t had any “warnings” since. So what do you look for? Stuff like that? Thanks!
AnonymousNovember 7, 2008 at 4:57 pm
Tracy, I had a very mild version of GBS. However, I felt compelled to respond to you. We are from the same area, and I was also supposed to end up at Bryn Mawr Rehab as well. Somehow, my body started to get better without their help and went home after a short stay at Paoli Hospital! It is hard for me to tell people my story on here; being that I had such a mild version. However, the tiredness is something that is slowly going away for me! I know when my body needs rest, and I really try to give it as much as I can. GBS is weird, but I am a firm believer that you are handed the cards you can handle! Good luck and take care neighbor 🙂
AnonymousNovember 7, 2008 at 7:47 pm
I have a mild case, only paresis from lower legs to feet. I was diagnosed 7/21/08. The first two months, I slept alot, sometimes 14 hours. I could and still can tell if I over due by increases tingling on face, fingers. I really get tired feeling those “bugs” in my nose. As soon as the tingling increases, I stop and try to rest. I just started Neurontin and I love it. It stops the tingling within an hour, and my feet are warm vs feeling frozen. I know how frustrated you feel wanting to know when things return to normal. When you read about this disorder, the resources say that onnce you hit the three to four week period and symstoms stop, that you start getting better. What I had to accept was that the nerves heal slowly and progress can be 6 months to 18 months. Generally I have read AT 18 MONTHS you are at your peak of return.
This disorder is not hereditary, so do not worry about your daughter. This disorder is one of those weird things that can happen.
I wish you the best, take lots of B1, B6 and B12 as they help stimulate the nerves to repair and help with energy.
AnonymousNovember 8, 2008 at 10:01 pm
i had gbs two years ago. a pretty severe case numb from the chin down(still)
the flu brought on a relapse earlier this year. went numb again.but i am working partime and driving. lived in the hospital and a rehab center for a long time. Now i am at home with my parents(i am 39)my damage is permanent. wear afos on both feet and walk with a cane or forearm crutches. this is a great forum plus you may be able to find a local support group. I live in charlotte nc and ours meet once a month plus we have a 5k run with a miracle mile and walk to raise money and awareness. I hope you find the support and answers you need fatigue is a big issue with me but i weighed 400lbs before i got sick so i am starting at the bottom. I have ben working muscle that have not been worked since i was in my 20s. upside is nw i only weigh 200 lbs. see you can find the good if you look.
AnonymousNovember 9, 2008 at 10:19 am
I don’t have much to add as you’ve received great responses. I will say that patience will have to be your constant companion.
I was diagnosed with a severe case of GBS in 1991 (the only unaffected area was the left side of my face).
It took approximately a year for me to regain a lot of what I “lost”. I had intense physical, occupational and speech therapy and “lived” at a rehabilitation institute for 3 months. I also had PT for another 6 months and progressed from a wheelchair to a cane which I only use when I’m outdoors as I’m a bit off balanced and have foot drop (my right side is much weaker than my left).
I’ve never been a runner, although I was quite active. I can no longer do “everything” I did prior to GBS, but I can do much more than I anticipated.
I understand your frustration dealing with your current abilities (or lack of). I had to deal with family and friends making very unsympathetic comments that lacked tact as well as understanding when I couldn’t attend certain functions and tired easily. Their comments of “you don’t look like anything is wrong” led me to advise them to switch places with me for a day and then they’d have a better understanding. They eventually understood the degree of my abilities and I finally realized they weren’t intentionally trying to be mean; they thought their comments would encourage me to get better soon!! 🙂
Thankfully, your case doesn’t sound too severe, however GBS is an individual thing. Please don’t push yourself too hard as that can be detrimental to your recovery.
AnonymousNovember 10, 2008 at 10:36 am
I’ll echo that there has been great information already.
I’ll post my “feelings, opinions” as to some of your questions.
As to relapse’s, I have had the priviledge of going through this twice….two full blown episodes; both ending up on vent in less than 36 hours after onset. Both with extensive time in re-hab, but both with a “favorable” prognosis. It can happen – that being said, I try EVERY DAY to wake up and not think that every sniffle/cough/phlegm in throat/numbness in feet/etc. isn’t another onset. I just heard at the Symposium that a person who has had an episode of GBS is 30 times more likely to get it again, as opposed to someone who has never had it. Don’t have any idea how this was quantified….I hope to hear more on this later.
I question the heredity position that some here have taken…..I’ve talked to a few GBS patients/Neuro’s and I believe that there is a genetic pre-disposition of sorts…..my mother suffers from auto-immune diease, as does my grandmother…..Nothing scientific, but I am concerned as I have children. When asked the question about heredity at the Symposium, one of the doc’s there, a neurologist, argued that there is very possibly a heredity trait that is passed. I’m not trying to argue, at all, with people here. I value everything that people write down, I’m just relaying my feelings/opinions. If there is a DNA trait that could be passed, better to be informed and take precautions, such as taking care of yourself and kids, avoiding certain things….
I do not want to rain on anyone’s parade, and I still feel terrible that one person I talked to at the Symposium told me that I “ruined their life” by telling him that I had this twice….that kind of bothered me :(, even though he said it in jest, I believe. I absolutely don’t want to ruin anyone’s life. Rather just inform, so precautions can be taken.
Tracy, take care and be safe.
AnonymousNovember 10, 2008 at 12:23 pm
Thank you for sharing your story with us and for giving us (precious) information. I can’t believe that person who told you you’ve ruined their life 😡 I understand they meant no harm but after what you’ve gone through I think they should have been more considerate. I’m still recovering from my first GBS attack and although it’s scary to think that it may happen again I’m glad I know because not to know is even worse.
I wish you all the best for your recovery 🙂
November 12, 2008 at 7:03 pm
I know one that is good today she was with my at my hospital, but she was young 24 years old, it takes time and this napping and resting when you are working is normal, your body is also trying to make things right and we are trying to live normal. I’m tomorrow 2 years old in GBS, and I have stooped to wonder if I will be the same again, it took my many months to stand up from the wheelchair, and I had mild relapse last year, it was because I had pushed my to hard, I run a workshop making candles and Christmas time is my time in work 🙂
You have great respond from others here and I will just say to you [COLOR=red][U]one day at the time,[/U][/COLOR] and then it comes.
AnonymousNovember 12, 2008 at 7:22 pm
My name is Matt and I am post GBS 11 years next month. LOL That statement reminds me of the folks in AA.
1. I am always tired- when does this start to go away?
I am of the residual class where fatigue is my most prominent ongoing issue, but you really should not concern yourself with this right now. Your body is in the healing process, so think about the present: energy conservation management, good food, people who love you and all those things that will improve your current life situation. The anxiety of what will happen tomorrow does us no good does it? I say to all those in the first few years of recovery, sleep, nap and dream of those luscious Caribbean beaches you can run along down the road.
If you need a red flag indicator that might suggest you will have ongoing fatigue issues I would say on average three to five years. This may vary significantly, but in reading various forums this is my sense of it. It seems generally speaking the parasympathetic nervous system will continue to show improvement, be it gradual, in spurts or at a gallop, until the repair teams give the report “We did as best we could” three to five years out. I have read isolated incidents where significant improvement occurred even much further out. You know, although GBS is rare, it is my belief that only 25% of those afflicted experience ongoing issues after three years. The odds are clearly in favor of your full recovery! Again, take a look at your progress at a set milestone and do a personnel inventory at that time and try not to concern yourself with it.
2. Weaning pain meds.
If you are in pain there should be some form of relief. There are many pros around her who can offer tips on pain and recovery. Do you feel you need for pain meds? Are you in agreement with the Dr.?
3. I am afraid of getting sick.
Welcome to the GBS club. I jump for cover when a firecracker goes off, so to speak. It is funny I should read this note because I have been incredibly ill with the flu and have battled with something that scared the hell out of me, which is why I decided to visit this forum today. Anytime I get the flu, or am around someone suffering from the flu, my anxiety level goes bonkers. I have been a wreck, but I do feel better today. Yes, I am afraid because even though the odds are perhaps 3% of a GBS relapse when I get sick it pushes my limits physically and my residuals worsen and I have a hard time working. So I tend to duck and cover when I can, as you will during your recovery. It makes sense that you should be afraid because in recovery illness exacerbates fatigue, as if we can control the situation. Note to self: live in the today. LOL
4. If you do have a relapse, is the onset similar to your first episode?
An individual thing you need not concern yourself with, since you are still in recovery.
5. Has anyone recovered fully so they can run again?
Yes. As mentioned above 75% of GBSers recover fully! You would not guess this reading this forum, but I have seen quite a few like you come for a visit, get well then go and run the said beaches above. This forum is somewhat skewed, Tracy, in that most who participate here have ongoing residual issues like yours truly or are gathering knowledge while in recovery or on behalf of a loved one. That is, since most recover you will not see them hanging about this forum, for the most part, so you will rarely read about how they have regained their former lifestyle.
Nice to meet you out here in cyberspace!
AnonymousNovember 12, 2008 at 8:06 pm
Welcome to our little community. I am glad you found us but I wish you had never heard of GBS.
With some of us the fatigue never goes away. I am 6 years from having GBS and I have been tired and fatigued every single one of those days. If the fatigue doesn’t go away, then you will develop strategies to deal with fatigue. Try to make an energy budget where you try to balance energy expenditures such as work, play, housework, and family time versus rest. Make sure you schedule rest. It is important as any other activity for people with GBS. Most of us who have problems with fatigue have to get 9 to 10 and a half hours of sleep a night. Hopefully you will be in the minority who doesn’t have long term fatigue problems.
As for recovering physically, yes you can get back close to 100% of your physical strength, but you may not have as much stamina. If you try hard enough, while still being smart about not overdoing it, then I am convinced most people with GBS, can recover most of their strength.
AnonymousNovember 20, 2008 at 3:47 pm
I was also recently diagnosed with GBS. It was caught early – the day I started treatment I could feel the paralysis climbing from my calves by mid-morning then to my thighs by mid-afternoon. I thank my lucky stars that I was at The Methodist Hospital here in Houston, Texas because the neurologist diagnosed my GBS in about five minutes. I spent 19 days at The Methodist Hospital here in Houston and have been recovering since.
I am so tired of getting tired! The fatigue really bothers me. I am just biding my time with this thing because I believe there is a balance in this world and the way I see it, I have some good times ahead that are overdue!
I felt compelled to respond because I also worry about getting sick! I had a couple of sniffles last week and I didn’t want to leave my bed! Based on everything I have been able to read about GBS in the past several months, I have not read anything regarding the likelihood of recurrence triggered by the immune system’s normal response to fighting illness. But, I still worry that my immune system will attack me again!
I visit this website at least once a week. It really helps to learn about the experiences of others with this syndrome.
Welcome to the forum and best of wishes for a full recovery!
AnonymousNovember 26, 2008 at 4:14 am
Welcome Tracy and Ron!
Rocker posted very good info. I had GBS nearly 14 yrs. ago and have always had fatigue ~ and I get tired of it, too 😮 But as Lee said, you find ways to adapt and make a different life for your self. I do believe that for most people who are early diagnosed and get treatment/help recover nearly 100% (fatigue seems to be the most prominent residual).
I wish you both “well” 🙂
AnonymousNovember 26, 2008 at 8:18 am
Welcome Tracy! I used to live in your area and no University of PA Hospital very well and also know the other hospital very well. Just want to welcome you to the site and wish you a very Happy Thanksgiving! May you get well and get better soon! One day at a time! Hugs
AnonymousDecember 3, 2008 at 12:04 am
I’m sorry someone thought the facts would ruin one’s life. No I’m not a gbser but rather the mom of a gbser…………a two time survivor. Her cases were 9 years apart and thankfully round two was not as severe as round one yet round one took 22 days before she was vented where as round two it was 22 hours. The neurologist told me GBS doesn’t strike twice. Well when he told my daughter she wasn’t trying hard enough to walk I took his head off. My biggest fear became reality 9 years to the day we arrived home from her first case. We had been in England for a family reunion/vacation when my 14 year old daughter was strickened with GBS. At 22 she suffered round 2. She began high school in a wheel chair and went on to graduate high school Valedictorian………..then onto College and graduated with 3.8 GPA. Next month she will begin school again, Masters, Registered Nurse. Yep GBS changed her life but it also set her career goals……………pediatric nurse. My Brandy has been extremely fortunate as she has recovered from GBS twice and barring a few residuals no one can tell she was ever paralyzed not once but twice. We hope and pray that those afflicted with GBS will achieve the same remarkable recoveries that Brandy has had.
January 2, 2009 at 9:23 am
I have had GBS three times, once in 1958, once in 1989 and again in 2002. I am retired now. After the first two attacks, I regained my strength and led a normal life even ballroom dancing. After the attack in 2002, I had to retire from work (I was 62) and now get tired easily and have trouble going up and down steps. I need a handrail to hold onto and go slowly. I also ache all the time, expecially at night. I take no meds but Advil. I have developed tendonitis in my right arm which is still hurting after 3 months. Don’t know if that is GBS related. I am thankful to be able to do the things I do.
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