Question about what is normal
AnonymousSeptember 17, 2007 at 5:09 pm
Hi everyone! I have a question about what is normal. And I can hear all of the old timer’s sighing!! I am in month 6 since GBS, and month 4 of PT. I am very fortunate to still be able to go because it has helped a lot. My main challenge every time I write here is my walking. It is just driving me crazy because I can’t figure it out. My main muscle pain is in my deltoids and my quads and I don’t take any meds. I still have paralysis in my quads because I can see it when I try and flex my muscles and when I walk. My question about “is it normal” is this: I feel like my arms and my legs are always “used up”. I told my PT today trying to explain to him what I feel, that it is like I start the day out already doing 100 arm lifts and 100 leg lifts. If someone tapped me in the back of my knee, like we did when we were kids, my legs would give out. I just can’t get past doing maybe 12 leg lifts. And we are on the lowest weights for almost everything. One day last week we did another type of machine and I knew right away it was more than 3 pounds. I am not whining (really I’m not), but I have tried to research this with peripheral neuropathy, etc. and can’t find anything out. When I leave PT I have to walk lock kneed or I will fall down. After quite a few hours it will get better, but I am pretty much wiped out on PT days. So does all of this get better at some point or when you guys write how tired you are, etc. is this what you are referring to? Thanks so much!
I am on here almost every day just to read what everyone is writing. And I usually feel better knowing, “hey I had that too, etc”. For someone who never went to a message board, I am here a lot!! Thanks again everyone! Gabrielle
AnonymousSeptember 17, 2007 at 6:50 pm
Hello Gabrielle, I just started posting on here myself, so I can only speak for me. Personally, I don’t think there is any ‘normalcy’ of any kind connected with GBS’ers. Everybody’s different in the degree of their affectedness, how much they recover, length of recovery time, and so on. I’m sure age is a factor, how soon the diagnosis was made, and treatment received. As for me, i’m 59. almost 3 years into gbs, and still have residuals, mainly foot drop and chronic fatigue and some paralisis on the right side of my face.
Stick with the PT. It will help you in the long run. If it’s any consolation to you, a couple of doctors told me that the average length of time for recovery is about a year, maybe two. Don’t know if that’s true or not. Also, I think most people make a complete recovery. Here’s hoping that holds true for you. I know one thing, we’ll never look at life the same way again will we? Every day is a gift. Never take it for granted.
You will have to relearn some things. Learn to listen to your body. Take naps when you’re tired. Eat right, and stay strong mentally. You can do it. Remember, the glass is always half full. Take care, and be well……Bud:)
AnonymousSeptember 17, 2007 at 7:07 pm
Hi Bud! I saw that you were new posting so welcome to the group! I think my problem is I still have this feeling that it’s not going to go away. And I know it takes a long, long time. I need a confirmation that someone else had the same feeling, etc. for some reason! I am 47 and used to swim about 5 miles a week, was quite fit and active. My diagnosis was not made timely because it was not a catastrophic event, trying to rule out MS, etc. So I didn’t receive any treatment which aggravates me but I can’t change anything. And my neuro keeps saying it will get better too. I am an RN as well so I know about the disease, but I really, never, ever thought I would get it, and I thought it would go away in a couple of months maybe. Now I know better:)
PT has been great. I may not walk well but I will darn sure look great doing it! And my attitude is 99% of the time fine. It could always be worse! And I know that on a daily basis. Thanks for your post!!! Gabrielle
September 17, 2007 at 9:24 pm
I am a year post and I still have occassional “used up” feelings. Yesterday I had a hard time climbing our stairs which was something new for me since I have had no real problems since we moved in almost 3 months ago. Some days I too feel as if I lifted heavy weights and did a million leg lifts. At night I sometimes vibrate and wake up feeling as if I wont be able to move or stand up. It comes and goes. You may jsut need more rest than you are allowing yourself. I know it is hard to do, but laying in bed for the day with some books and a couple of movies helps immensely. I just make everyone understand how poorly I feel, then convince myself that I NEED the rest, and the next day I do feel better. Maybe take a couple of days off from PT and rest up and see how that helps. But, on the bright side, after a year I am doing much better and bad days are less often. 6 months ago that was a whole different story. Keep thinking positively and take very good care of yourself. Everyone here convinced me of how important that is. So for the first time in my life I am able to take it easy, take care of myself, and recover without feeling the guilt I always had before GBS.
Oh I wasnt diagnosed right away either, and didnt receive proper treatment. So I totally know how ya feel. I often wonder if proper treatment would have made a large difference in my recovery and residuals.
Hope you feel better soon and things work out for ya. Keep up the great work!
AnonymousSeptember 17, 2007 at 9:42 pm
Gosh, thanks Lori! I haven’t really rested an entire day unfortunately. I am afraid to. And I mean that honestly, I feel like if I slow down or stop for a few days that I’m going to get worse. I am not really sure if continually using up my muscles is helping or making things worse, or what I am supposed to do. My PT’s are wonderful but they haven’t had a lot of GBS clients so it has been trial and error of what I can tolerate. I think I feel that if I keep trying to use my muscles they will at least maintain some strength as things regenerate if that makes sense? Thanks for your response, and the fact that you weren’t diagnosed early either. Gabrielle
AnonymousSeptember 18, 2007 at 10:22 am
I just wanted to let you know that being 23 months after my onset I am doing well. I received great care and was diagnosed early but the problem was the IVIG was not working so they sent me for PlasmaPhresis at another hospital that could do that treatment. I think within the first two weeks I was diagnosed and had my treatments. SO I think that was really quick. I agree that everyone is different and you have to be patient. In the next few years you will know more about your case of GBS than you want to know! I did not have a great Summer at 6 months. I was not as active as I wanted to be….that following Winter at 12 months I could do more for myself but still had a long recovery to go and I was still deeply into rehab. I took it slow and expected that GBS=[B]G[/B]etting [B]B[/B]etter [B]S[/B]lowly recovery! I don’t think I expected it to be this slow because I had never been this sick before and really did not know what to expect. I can tell you I took the advice of many posts here, I got that rest each day. If I over did it because of an appointment I rested the rest of the day. Days I had rehab I did very little the rest of that day! On the days I did not have rehab and had to exercise on my own I split it up over the whole day and not jam it into an hour or two workout. When spread out over the day I did not feel it as much at the end of the day! But don’t get me wrong at the end of the day I was still tired, just not exhausted or so fatigued that I could not function. Naps slowly got shorter and I was like a toddler that I could soon skip my morning afternoon nap. Now I am able to stay awake during the day but I still have down times where I just rest and watch tv or a movie. If I party or shop for groceries I notice I am slower the rest of the day. But I don’t need to sleep as much. I still demand about 10 hours a day sleep, but can get by with only 8 hours for a few days and then I need more sleep for a few days. After a night out with friends, I come home very tired and ready for bed but the next day I take it really easy. I now bounce back quicker the next day. The fact that I am bouncing back sooner is a good sign and keeps me aware of my activities and I have really learned to listen to my body! REST is for the Nerves healing and the Exercise is for the muscles to get stronger but remember they are what burnes up the energy. The nerves are just letting the energy go to waste as they vibrate. Since that has almost stopped I have notice the energy level is way up and the exercise and strenght is coming back in the last year. I don’t have this down to an absolute science but I know healing can not be rushed. Bottom line you do too much you are going to pay by the end of the day!
Measure your progress by the month and you will see a bigger result. It is like being on a diet you loose an ounce a day that is one pound in half a month. Weigh yourself once a month and that is TWO pounds. It is a mind game but TWO pounds sounds better to me than only an ounce! But at the end of the month it seems so much more possitive. Those good days do add up!
AnonymousSeptember 18, 2007 at 3:06 pm
Well a big part of what you say is true in that I am looking for progress on a daily basis and it aint happening! I have rested almost all of today so far to see if it really makes a difference. I went out to do one errand and have tried reading, taking a nap, and just watching some TV. I never watch TV! I also moved my PT until Thursday to give me two days to recoup in between. I guess I never thought it would be this slow either. Thank you so much for writing exactly what you did. I was on the two-three nap program at one point and can make it on just one a day now. That is progress, I just forgot about it!!! I guess I feel like I am wasting time “resting” but in fact I would enjoy more things if I was rested. I’ll see how it goes. Thanks again!! And anyone else who wants to respond, it would be great. Gabrielle
September 18, 2007 at 8:12 pm
Hi Gabrielle, I’m almost year old in GBS, I have learn that we need to take one day at the time, and we don’t see how much we go forward because what we did yesterday we do better to day though it is only little step. I was paralyzed in 5 months, I put my mind to walk, that was the only thing I could think of, my doctors was almost sure I would not walk again, for I have so much damage in my feet, but I did not sit down and let them tell me what I would become. I walk like a goose most of the time, I have hard time putting my feet down because of the burning feeling I have in my feet. But I’m here walking 😉 😀 and all pain and shaking legs what a heck, you will be good, you are in my age I’m 46 and in better shape then I.
I get very tired and usually I have to take a nap over the day, and I go to PT 4 times in the week, often I cant go so often because how tired I am.
I love going swimming and I try to walk a lot in the swimming pool it is so much easier, and walk on toes there, believe me it is easy but doing it on hard floor I could just faint of the pain I get. My muscles in my feet are like yours not responding well but with endless exercise and talking to you feet you should get some respond and get them to strength up. Mine are getting slowly stronger but when I walk I have to think all the time how I walk so I don’t fall over my feet 😉 😀
Hope this give you some idea what is “my norm” today… tomorrow who knows what my norm be then
AnonymousSeptember 18, 2007 at 9:00 pm
I have enjoyed reading your progress too! I have a pool and from the beginning have done exercises in there as well as PT. I guess everyone is saying the same thing about being tired, and needing rest. I know I am doing better, and that’s a good thing. I just need to measure by the month I guess and not the hour:) I hope you feel better. I have some neuropathy which is worse at night but I am trying not to take any medication for it. I am sorry your pain is so bad in your feet but I guess little by little those things will get better. Take care, Gabrielle
AnonymousSeptember 19, 2007 at 10:03 am
Just wanted to let you know it is slow going for my 12 yr old daughter, too. Her dx was cloudy initially and the docs thought she was getting better and so, long story short, she never got ivig treatment.
Her onset was Feb 07. She was using walker for short distances and mostly in wheelchair for first 5.5 months. She is on crutches now and we continue with PT. Looking back, she has made HUGE progress but it gets so discouraging sometimes. I never thought she would still be unable to walk w/out assistive device after 7 months. She’s holding up well but I know she gets tired of it all too.
While her endurance has increased tremendously (back to school full-time on crutches), PT often wears her out. She overdid labor day wkend (swimming, playing, tooling around on the crutches) and then was totally exhausted for 3 days. I made her stay home and rest, I thought she was getting a virus or something, but I think it was too much activity, plus the heat was really hard on her too.
This is such a hard thing. She is moving towards walking independently again but her legs just don’t work right, it takes so much effort! Also, PT now thinks that her breathing muscles were impacted and that is part of the problem. She was never on the vent or anything, so no one really looked much at her breathing after the inital hospital/monitoring stage. But we are finding it is very difficult for her to breathe properly while exerting herself. She has to concentrate very hard to move certain muscles in her legs, and exert a lot of effort, and while she is focusing on that, her breathing slows down. Maybe that is an issue for you too?
Anyway, I just wanted to say hang in there and keep looking at the big picture, not the daily one! People here understand the frustrations of a slow recovery, which is a blessing.
AnonymousSeptember 19, 2007 at 5:14 pm
Hi there and thank you for your post as well. So she is about a month or so ahead of me. I know I have read some of your posts as well. It is frustrating, and not in a feel sorry for myself way, just frustrating that it is taking much longer than I expected. I haven’t had the breathing issues that your daughter does. I do have episodes of an increased heart rate, which is what sent me to the hospital initially. I felt the numbness climbing at the same time as this and thought I was going to keel over dead:(! But my heart checked out fine, it is all related somehow to the autonomic system. I promise to write a story for the nursing journal when I am done with this. I am an excellent nurse and clinician and good with my patients, but I never had an appreciation for 1) Exhaustion and 2) Patience. Thank you and keep your chin up too! I’d be heartbroken if it was my child instead of me so all of you parents get extra angel wings!
AnonymousSeptember 20, 2007 at 10:53 pm
I had GBS 30 years ago, but I still remember what you are going through. It took me a year to walk normally again, or at least what was normal to me. GBS is different for everyone and there really is no “normal” anything. Even after all these years, I still get exhausted and have to know when to take it easy. But, I have also ridden a bike for long distances and walked for miles. Your body will tell you when you need to rest. Good Luck, and God Bless!
AnonymousSeptember 23, 2007 at 7:33 am
HI, my name is MOnica and my English is not very good. I’m from Brazil. My mother is GBS since 07/11 of 2007. She is in Intensivy Unit, because she needs do respirator help of machine. Her tratament is imunoglobulina: twice. One on July and othe on September, but is not better. NOTHIN NOTHING NOTHING. She is sleepyng all the time. The doctor (is not good), talked me that she don’t better, because the form is axonal. Is not reversible. Is it possible this? She is 69 years old, but her health is excellent. She wans’t helath’s problem yet, never.
Can you help ou invited my question for other people that can help me?
from Brazil. moxa25@ hotmail.com
AnonymousSeptember 23, 2007 at 12:53 pm
hi monica & welcome,
imunoglobulina [ivig] works on 70% of gbsers. did they give her 2g/kilo of total body weight? since it appears it is not working they should try plasmapheresis [pp]the only other thing for gbs. sleeping all the time is ok. the body needs plenty of rest to get better. to be sure ivig or pp is working you do not look for improvement at first. you look for no more getting worse. no matter what the docs think, it is too early to be sure how much axonal damage is done. even so, some axonal damage is recoverable even is very slow. can she communicate with you? is she in pain? they should be giving her passive pt. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 23, 2007 at 10:08 pm
Hi. I am new to the forum – but old to GBS. First onset in 1993 at age 43 and had it again in 2004! So I am a 2 time looser. Normal is something that does not happen as it used too. You have a “new” normal. You must listen to your body! When it says rest – then rest.:eek: You have to keep up a schedule of excercise (use it or loose it) but still listen to your body! It is not easy. I still wake up every day and hope for a new “pill” that will make me like I used to be.Alma.
AnonymousSeptember 26, 2007 at 9:47 pm
Geez, I certainly hope I don’t get this again! I don’t know how I would handle that! I am just frustrated now with the slow progress. Slow slow slow slow and more slow. Plus someone told me I should just plan that this is permanent now and if something improves then that is a gift. I burst out crying and couldn’t get in control of myself. I’ve been really good about all of this but I’m losing some of my enthusiasm and hope. Plus I have had another issue twice this month and I don’t know what it is. My left leg and right arm have always been weaker. I did not get a nap today and had to go to the doctor, the license place for a decal (twice), and my left leg felt like it was almost completely useless. I could still walk, but way out of control and I didn’t even know that I was placing it correctly. This happened a couple of weeks ago too, and I think I was using it more than I usually do. What’s up with that??? So sorry for whining, but it’s getting on my nerves now!! No pun intended…
October 8, 2007 at 6:49 pm
Hi Gabrielle, I think that nap is somthing we need so much, I forget it to often and I know how it feels, draging the left foot, walk like drunk person. Im very much awere of how fustraiting slow progress is, I have been hoping I would feel good one day, wake up and ullalla everthing fine, what was I onset of GBS I have forget that. but that is not how it is, I wake up reach to my gannet and stand up and my feet is like balloon that dont want to carrie my around. One day at the time is the things we need to understand, and work with, and smile. I dont talk much about how I feel with people around me, becouse I dont like to listen to people telling me how bad they have it in their body. It seems that people thinks becouse you have been onset of things like GBS then you like to hear about things that have happen to others that have had bad back pain all day long, I wish I only had my back pain today:D :p , well enoug of ramling, it is so long since I was here and so much to read I think I should sut up and read more 😀
AnonymousOctober 8, 2007 at 10:23 pm
Oh Helga, you write so nice! I love to read what you write! The nap and rest is what I am reluctantly still fighting but knowing that I don’t have a choice in the matter. You are funny about people telling you all their problems too:) I’m sure you are a good listener! Take care, Gabrielle
AnonymousDecember 10, 2007 at 6:11 pm
Gabriel Ive been reading your post and I can totaly relate to your wanting it better right now. Today was the first day thAT i HAVE WALKED WITHOUT A
wa;lker.Onley 10 feet but it is a start. just 8 weeks ago I was on my bed unable to move much at all.
I will pray for you
December 10, 2007 at 8:48 pm
Congratulation Ron it is so great to be able to do this, wwooo freedom, I remeber stil how it feelt for the first time I walk alone, I was using crutch for few month after I letf the walker, I still have my walker and my crutch
but I dont use theim any more. my pt want let me return it yet, becouse it is always change of relaps and then it take so long time to get it back, but Im not going to relaps, as every one know 😀 😉 I take exstra care of me now *LOL*
AnonymousDecember 19, 2007 at 3:01 pm
I am fast approaching my 1 year anniversary. It was about the 6 month mark for me when the majority of my GBS related symtoms like tierdness and pain were completely gone. Although I am pretty much back to normal, not walking w/o AFO’s for 6 months was hell on my leg muscles. So I am still in the process of building them back up. Although my leg weakness was caused by GBS, its no longer GBS oriented. I know that it is hell, but you are probably on track. If your GBS was not Axonal, its usually 6 months to a year, unless your case was severe. Mine was described as moderate (not the best case, but not the worse case).
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