What is over-doing it ?....Can walk with a wobble but that is all

General General GBS Discussion
1

Dear Brothers and Sisters......I just joined this forum.

The advice and comments here are often more insightful than what the various Neurologists have said.

Am 50% numb from BButton to feet but can wobbly walk unassisted.

GBS peaked 2nd week of Jan 2016....Out of hospital 30 Jan 16.

THE Q:

How much is overdoing it ? I want to be with the family and not hold them back from various activities.

On 2/16 I walked non-stop for 1/4 mile and my feet went from 60% to 100% numb that night and the next day or so.

What do you folks advise....Remember I was running some before GBS and walking 4 miles for the fun of it at age 62.

2

Everyone has a different level of tolerance. My advice is to listen to your body. You'll know when too much is too much.

3



Spencer said:

Everyone has a different level of tolerance. My advice is to listen to your body. You'll know when too much is too much.

4



Dana said:

Thx Spencer....everything you said is correct. My background is athletic but now plenty of the feedback I get ( from my body ) is inaccurate. Today I think I am feeling pressure as "being cold". After three weeks I caught on that how I was gauging progress was flat out wrong. The night I walked 1/4 mile and totally numbed my feet, I didn't know I was overdoing it until it was too late.

Any thoughts ??



Spencer said:

Everyone has a different level of tolerance. My advice is to listen to your body. You'll know when too much is too much.

5

Numbed feet is normal. I'm almost 3 years into my GBS and my feet still gets numb every time I'm on my feet for a long period of time so I wouldn't be too concerned with the numbed feet. Now, if you knees are feeling tired and weak and buckling under you.....that's over doing it.

6


Thank you Spencer ......that is very useful for me.....and none of the docs gave me this type of specificities.

Very useful !!!
Spencer said:

Numbed feet is normal. I'm almost 3 years into my GBS and my feet still gets numb every time I'm on my feet for a long period of time so I wouldn't be too concerned with the numbed feet. Now, if you knees are feeling tired and weak and buckling under you.....that's over doing it.

7

Spencer, do you know why your feet go numb. Is it nerve damage? I'm a year and a half out and this happens to me when I have over done it and work out for a while on the elliptical or treadmill. I can finish my workout so my legs still work but I usually cut it short because I don't know why and don't want to make it worse.



8

Both my feet and hands went numb and tingling when I came down with GBS. My hands recovered but my feet from my ankles down never recovered fully and is still somewhat numb and tingly. My work requires me to be on my feet and walking almost the entire day. At the end of the day, my legs and knees are weak and tired and feet are extremely numb from my shoes. I've notice its gotten a little better as the years pass so I guess I'm looking at a long term recovery and even that I doubt my feet and legs will be 100% back to normal.

Tarhealing said:

Spencer, do you know why your feet go numb. Is it nerve damage? I'm a year and a half out and this happens to me when I have over done it and work out for a while on the elliptical or treadmill. I can finish my workout so my legs still work but I usually cut it short because I don't know why and don't want to make it worse.



9

Hi Dana,

Welcome to the brotherhood. I was diagnosed a year ago and was like you an active older person before. Although I can’t walk for long periods I’m fine walking on my own and thanks to my rehab training 3 times a week my balance improves by the day. I can now walk on sand and grass, carefully but I CAN. My feet are still silly but they don’t hurt so I forget about them during the day and just feel the GBS in them in bed.

I bought some light weight trainers online the other day. The back of them on the heel is a bit wider than usual and much to my joy I found them to be a great help with my balance.

10

Hi Dana

I was diagnosed 30+ years ago at age 17, so I was really active pre GBS. I really wanted to get back to my "old life", so sometimes I pushed too hard. That set up a two steps forward, one step back see-saw for a while. My suggestion is not to push until you're totally wiped out, stop while you still feel pretty good,. Work hard, but not crazy. My feet still get pins and needles, or go numb, depending on the situation. I was told that was a result of irreversible nerve damage. Once my strength and balance improved I didn't let the pain or numbness hold me back. Like Xstitcher, I put any pain on the back burner during the day, so at night I feel it more. It sounds like you're doing really well, keep your great positive attitude!

11

Hi Charlotte, it’s so good to read such positive inputs as yours.

About “over doing” it. There is such a fine line between that and not giving yourself the extra push but you will learn where that is, and so what if you do overdo it once in a while. It will leave you stiff, sore and tired for a few days but just chalk it up to experience.

I visited 3 supermarkets and the post office two weeks ago and it was first when I got home I realised that I didn’t have my walker with me. I don’t normally use it but this was a mini marathon for me. The thrill of knowing that I did it without any aid (in my head that means looking normal) outdid the next few days tiredness and OF COURSE was entered into my PROGRESS book which I would so recommend to you “new beginners” to keep because in time you won’t remember when you reached an important goal. Re reading my book helps me when I grow a bit impatient with something connected to GBS. It gives the phrase YOU’VE COME A LONG WAY BABY a whole new meaning.

12

Xstitcher, you are so right about celebrating every milestone. Sometimes you don't realize how much you have achieved. I still enjoy remembering the day I walked again without my arm brace crutches, what a feeling of triumph! For me that meant I could return to high school (they wouldn't let me return until I could walk unassisted. They were worried I would be hurt if someone bumped into me and I fell over) Your Progress Book is a wonderful idea. I wish I had done something like that, You fight so hard for every little victory and it would be fun to remember more of them the way I do that day. Also, a pick me up on those discouraging days that sneak in there from time to time. Great advice for "beginners"!

13

Thanks for your kind words Charlotte.

My biggest WOW was when I could stand up from my wheel chair and thus reach my rollator. There was no stopping me from that day. To celebrate I bought myself a Royal Copenhagen coffee mug from an online shop. My iPad was my life line at that point.

It must have been horrible for you getting GBS as a teenager when “image” is so important. Apart from the obvious how did that effect your teen age years?

14

I was 17, a senior in high school and a cheerleader. So my number one priority was getting back to school so I could graduate on time, which I did with the help of some wonderful teachers. It took about 18 months for me to be able to return to some of my favorite outdoor activities, and I wasn't ever able to get back 100%. I lost all my friends though. At first they were afraid to "catch" what I had. Then the change in my appearance due to the facial paralysis made them uncomfortable, they didn't know what to say, or how to act. It was a blessing in disguise though, I got a fresh start, a chance to be the person I wanted to be. I met my husband a couple of years later. He didn't know me " before" so he was completely accepting of the " new" me. Now when I look back, I see how GBS changed slowly from a devastating diagnosis to just a part of me, like my hair color or eye color and I wouldn't trade my life now for anything!

15

Yours is such an uplifting story Charlotte. I hope that it is read by many.

Like you I got many positive things out of GBS, some of them hilarious, like enjoying cleaning the loo …because I CAN! Something happened inside my head because I can now remember my credit cards numbers…an impossibility before, and most of all the contentment I’ve had since my life got back to normal.

16

As a GBS survivor for what happened to me more than 7 yrs ago, I implore you to radically dial back your expectations as to what you expect your body to be able to do. First of all, do NOT push yourself at this point in time. You are barely 2 months out from having had GBS, type not identified. Depending on how incapacitated you became( also not identified), your body needs recovery time no matter your age..

I am sure you can now agree walking 1/4 mile 17 days post hospital discharge was Not a smart thing to do. Trying to keep up with family and friends for the sake of is also not a well reasoned decision to have made. Pushing yourself physically for the sake of not holding anyone back or in an attempt to regain your previous physical ability so soon after having had the GBS is Unwise.

It is too early for you to be able to ID what your new "normal" is at this point. . GBS causes damage, period. It remains to be seen if you will or won't have residual effects from the GBS you had that were significant enough you required being hospitalized. I strongly encourage you to focus on smaller reachable goals requiring less physical expenditure and then very very slowly try building up your energy level and endurance.

GBS damages nerves and muscles that may or may not be permanent. Your body truly is still dealing with the effects of being under physical attack. 2 mos down the line and you report 50% numbness from your belly button to your feet and wobbling after walking 1/4 miles that lasted for what appears to be at least 2 days. That is your body telling you it can't handle the degree of activity you used to do without a second thought. You are Not ready to get back to the same level of activity you had before the GBS hit you at this point. And, it must have hit you like a freight train since you required hospitalization for it.

Not meaning to be a Gloomy Gus, you need to seriously realize the effect of just how profoundly the GBS type you had was on your body. Doesn't sound like you are in tune with that at this time which is understandable as it takes time to process having had a trauma .And yes, GBS ranks right up there as a physical trauma. Do focus on much smaller goals like not walking 1/4 of a mile for a while.

Have you been medically cleared to begin any outpatient PT yet? Speak with your MD to see if that is the case now. If the answer is No and he didn't tell you why not, call and find out. Perhaps after looking at your hospital records he thinks you need more recovery time at home first.

There are other avenues to try from a Rehab perspective. Did you get the All Clear Medically to drive yourself anywhere yet? Can you handle resuming All the household level tasks you did prior to the GBS hitting you without almost collapsing from the effort of doing so?.

I can say with all truthfulness GBS hits you with the sneaky finesse of a runaway freight train when symptoms begin. Stands to reason you are going to need time and adequate rest to recover from the GBS your posting says you experienced that warranted being hospitalized for in the first place no matter how personally frustrating that may be.

I am not saying you can't ever return to the active lifestyle you used to have. I am saying your body will force you to stop if the pace of getting back to what you consider to be a more normal activity level now is more than it can handle. Unfortunately, post GBS there is No Reset button as much as that would be ever so wonderful to have in order to get all the way back to the way things used to be for you. There are no guarantees.

Your body needs you to pace yourself. You need to have adequate rest/down time, keep your food intake and hydration up and everything else will fall into line altho maybe not as quickly as you prefer it to be. Obtain PT services, Land and Pool based as available where you live. Let the therapists decide on the pace of any rehab program and abide by it.

Yes, it is frustrating not to be able to jump right back into the physical routine of your life before the GBS hit you. Yes, it is very possible the GBS caused nerve and muscle damage the extent to which you can't know right now. Hopefully, not permanently. But, there is always the chance same might be.

Check out the posts in this site from people who had GBS and read their comments. Be more patient and kinder to your body- it really needs you to be that way now more than ever.

Good luck with your ongoing recovery,

LJ

17

Wow,

Welcome to the group. You have a lot of in depth knowledge and quite the experience. I was on your member page and ask that you consider further elaborating your own personal testimony.

What undergirds my actions is that the Neurologists that were competent have told me that I had a lighter case of GBS plus reading the testimonies of others here has seemed to confirm it. Others truly humble me because they have gone thru so many things that I have not come close to experiencing ( XStitcher, Charlotte, Spencer and others ) and I confess that so far I haven't read anyone's story that was lighter than my own. And yes I know that the more severe the case, the more likely a person is to come to a forum.

The Ns diagnosed me within 24 hours of my first major symptom ( inoperative leg ) and gave me back to back IV/IG followed by PP within 48 hours. BUT GBS IS GBS.........When you can't walk, see double, and are 50% numb all the way to your belly button is there consolation in calling it a lighter case ?

So I will put on my big boy pants and think about the rest of what you have said. I am new to this disorder and some of the medical people just don't have the experience to help.....hence my coming to this forum. One N scared me by insisting that I needed to be checked for West Nile Virus.I did the research and next appt pointed out to him that I didn't have any of the major 4 symptoms....he changed the subject and later stated that since the treatment for WNV is IV/IG there was no point in testing me......what a dysfunctional ding-dong he is.

Thanks again and consider adding to your testimony

Forgive my rambling,

Dana

18


LJ said:

As a GBS survivor for what happened to me more than 7 yrs ago, I implore you to radically dial back your expectations as to what you expect your body to be able to do. First of all, do NOT push yourself at this point in time. You are barely 2 months out from having had GBS, type not identified. Depending on how incapacitated you became( also not identified), your body needs recovery time no matter your age..

I am sure you can now agree walking 1/4 mile 17 days post hospital discharge was Not a smart thing to do. Trying to keep up with family and friends for the sake of is also not a well reasoned decision to have made. Pushing yourself physically for the sake of not holding anyone back or in an attempt to regain your previous physical ability so soon after having had the GBS is Unwise.

It is too early for you to be able to ID what your new "normal" is at this point. . GBS causes damage, period. It remains to be seen if you will or won't have residual effects from the GBS you had that were significant enough you required being hospitalized. I strongly encourage you to focus on smaller reachable goals requiring less physical expenditure and then very very slowly try building up your energy level and endurance.

GBS damages nerves and muscles that may or may not be permanent. Your body truly is still dealing with the effects of being under physical attack. 2 mos down the line and you report 50% numbness from your belly button to your feet and wobbling after walking 1/4 miles that lasted for what appears to be at least 2 days. That is your body telling you it can't handle the degree of activity you used to do without a second thought. You are Not ready to get back to the same level of activity you had before the GBS hit you at this point. And, it must have hit you like a freight train since you required hospitalization for it.

Not meaning to be a Gloomy Gus, you need to seriously realize the effect of just how profoundly the GBS type you had was on your body. Doesn't sound like you are in tune with that at this time which is understandable as it takes time to process having had a trauma .And yes, GBS ranks right up there as a physical trauma. Do focus on much smaller goals like not walking 1/4 of a mile for a while.

Have you been medically cleared to begin any outpatient PT yet? Speak with your MD to see if that is the case now. If the answer is No and he didn't tell you why not, call and find out. Perhaps after looking at your hospital records he thinks you need more recovery time at home first.

There are other avenues to try from a Rehab perspective. Did you get the All Clear Medically to drive yourself anywhere yet? Can you handle resuming All the household level tasks you did prior to the GBS hitting you without almost collapsing from the effort of doing so?.

I can say with all truthfulness GBS hits you with the sneaky finesse of a runaway freight train when symptoms begin. Stands to reason you are going to need time and adequate rest to recover from the GBS your posting says you experienced that warranted being hospitalized for in the first place no matter how personally frustrating that may be.

I am not saying you can't ever return to the active lifestyle you used to have. I am saying your body will force you to stop if the pace of getting back to what you consider to be a more normal activity level now is more than it can handle. Unfortunately, post GBS there is No Reset button as much as that would be ever so wonderful to have in order to get all the way back to the way things used to be for you. There are no guarantees.

Your body needs you to pace yourself. You need to have adequate rest/down time, keep your food intake and hydration up and everything else will fall into line altho maybe not as quickly as you prefer it to be. Obtain PT services, Land and Pool based as available where you live. Let the therapists decide on the pace of any rehab program and abide by it.

Yes, it is frustrating not to be able to jump right back into the physical routine of your life before the GBS hit you. Yes, it is very possible the GBS caused nerve and muscle damage the extent to which you can't know right now. Hopefully, not permanently. But, there is always the chance same might be.

Check out the posts in this site from people who had GBS and read their comments. Be more patient and kinder to your body- it really needs you to be that way now more than ever.

Good luck with your ongoing recovery,

LJ

19

Good morning all,

What a good and sensible reply LJ. A year on and I’m beginning to understand where MY overdoing it point is. There is a fine line between overdoing it and moving the goal posts. If I can feel my legs getting heavy, begin to see double, start dropping things and my fingers are tingling more than usual then I have overdone it and must stop at once…not all theses symptoms at once I hasten to add! I know that I can walk along the shore line for half an hour all together so after a month I’ll try doing it for half an hour and five minutes. My kitchen work is done in about fifteen minutes at a time spurts and then I have a sit down. I find that by timing things I’m not getting tired and actually getting more energy. I take a nap in the afternoon and also in the morning if I feel like it.

Two weeks ago I fell down caught foot on a ironing cord but managed to get up as I have been taught, so can tick off the " scared of falling" box.j

Try to remember that things are going to take longer than they did before so give yourself good time and keep calm.

Don’t compare what you can do now with what you could do before you became ill. You can’t use that for anything except feeling sorry for yourself…bad idea, very bad idea!

If you must compare then do so with how far you have come since you got GBS…what you can now and what you couldn’t then.

Be persistent
Be patient
Be positive

Xstitcher said:




LJ said:

As a GBS survivor for what happened to me more than 7 yrs ago, I implore you to radically dial back your expectations as to what you expect your body to be able to do. First of all, do NOT push yourself at this point in time. You are barely 2 months out from having had GBS, type not identified. Depending on how incapacitated you became( also not identified), your body needs recovery time no matter your age…

I am sure you can now agree walking 1/4 mile 17 days post hospital discharge was Not a smart thing to do. Trying to keep up with family and friends for the sake of is also not a well reasoned decision to have made. Pushing yourself physically for the sake of not holding anyone back or in an attempt to regain your previous physical ability so soon after having had the GBS is Unwise.

It is too early for you to be able to ID what your new “normal” is at this point. . GBS causes damage, period. It remains to be seen if you will or won’t have residual effects from the GBS you had that were significant enough you required being hospitalized. I strongly encourage you to focus on smaller reachable goals requiring less physical expenditure and then very very slowly try building up your energy level and endurance.

GBS damages nerves and muscles that may or may not be permanent. Your body truly is still dealing with the effects of being under physical attack. 2 mos down the line and you report 50% numbness from your belly button to your feet and wobbling after walking 1/4 miles that lasted for what appears to be at least 2 days. That is your body telling you it can’t handle the degree of activity you used to do without a second thought. You are Not ready to get back to the same level of activity you had before the GBS hit you at this point. And, it must have hit you like a freight train since you required hospitalization for it.

Not meaning to be a Gloomy Gus, you need to seriously realize the effect of just how profoundly the GBS type you had was on your body. Doesn’t sound like you are in tune with that at this time which is understandable as it takes time to process having had a trauma .And yes, GBS ranks right up there as a physical trauma. Do focus on much smaller goals like not walking 1/4 of a mile for a while.

Have you been medically cleared to begin any outpatient PT yet? Speak with your MD to see if that is the case now. If the answer is No and he didn’t tell you why not, call and find out. Perhaps after looking at your hospital records he thinks you need more recovery time at home first.

There are other avenues to try from a Rehab perspective. Did you get the All Clear Medically to drive yourself anywhere yet? Can you handle resuming All the household level tasks you did prior to the GBS hitting you without almost collapsing from the effort of doing so?.

I can say with all truthfulness GBS hits you with the sneaky finesse of a runaway freight train when symptoms begin. Stands to reason you are going to need time and adequate rest to recover from the GBS your posting says you experienced that warranted being hospitalized for in the first place no matter how personally frustrating that may be.

I am not saying you can’t ever return to the active lifestyle you used to have. I am saying your body will force you to stop if the pace of getting back to what you consider to be a more normal activity level now is more than it can handle. Unfortunately, post GBS there is No Reset button as much as that would be ever so wonderful to have in order to get all the way back to the way things used to be for you. There are no guarantees.

Your body needs you to pace yourself. You need to have adequate rest/down time, keep your food intake and hydration up and everything else will fall into line altho maybe not as quickly as you prefer it to be. Obtain PT services, Land and Pool based as available where you live. Let the therapists decide on the pace of any rehab program and abide by it.

Yes, it is frustrating not to be able to jump right back into the physical routine of your life before the GBS hit you. Yes, it is very possible the GBS caused nerve and muscle damage the extent to which you can’t know right now. Hopefully, not permanently. But, there is always the chance same might be.

Check out the posts in this site from people who had GBS and read their comments. Be more patient and kinder to your body- it really needs you to be that way now more than ever.

Good luck with your ongoing recovery,

LJ

20

Hi Dana

It’s good to see you back.

I had to laugh at your assessment of the ding donger!

When I first began here it seemed to be a contest to see who was the worst off and that wasn’t what I needed so I stayed away for a while and now I see that people are coming on with some really useable info. Keep it up all you sunshine people!


Dana said:

Wow,

Welcome to the group. You have a lot of in depth knowledge and quite the experience. I was on your member page and ask that you consider further elaborating your own personal testimony.

What undergirds my actions is that the Neurologists that were competent have told me that I had a lighter case of GBS plus reading the testimonies of others here has seemed to confirm it. Others truly humble me because they have gone thru so many things that I have not come close to experiencing ( XStitcher, Charlotte, Spencer and others ) and I confess that so far I haven’t read anyone’s story that was lighter than my own. And yes I know that the more severe the case, the more likely a person is to come to a forum.

The Ns diagnosed me within 24 hours of my first major symptom ( inoperative leg ) and gave me back to back IV/IG followed by PP within 48 hours. BUT GBS IS GBS…When you can’t walk, see double, and are 50% numb all the way to your belly button is there consolation in calling it a lighter case ?

So I will put on my big boy pants and think about the rest of what you have said. I am new to this disorder and some of the medical people just don’t have the experience to help…hence my coming to this forum. One N scared me by insisting that I needed to be checked for West Nile Virus.I did the research and next appt pointed out to him that I didn’t have any of the major 4 symptoms…he changed the subject and later stated that since the treatment for WNV is IV/IG there was no point in testing me…what a dysfunctional ding-dong he is.

Thanks again and consider adding to your testimony

Forgive my rambling,

Dana