How long for endurance to return?
AnonymousAugust 23, 2006 at 11:50 am
I realize that this is different for everyone but I am just curious how long it took everyone for their endurance to return. What I mean by endurance isnt the ability to run or jump hurdles but the ability to do ordinary things such as walk through a store, mall or go to a fair without tiring. The reason I ask is because I can walk about 200F with crutches otherwise need to use a wheelchair. I live on a dirt road and the rental wheelchairs are not cutting it for me as they get stuck. I found a chair that will work better for this situation but I would need to buy it and I am debating if I should go ahead and fork out the money for it or not. On one hand I hate to buy something I may not be using again in a month or so, but on the other hand if my endurance is still horrible after several months it would be worth it. My doctors all tell me of course that there is no way to know for sure but they wouldnt be surprised if I am still working on getting endurance back a year from now.
Thanks and I appreciate everyones feedback.
AnonymousAugust 23, 2006 at 12:44 pm
Fatigue, is everyone’s longest lasting residual. Why a lot of us here learned energy management the hard way. One thing with this disease that docs never mention, because there is no measurement factor, is that almost, I say almost because some precieve 100% recovery in strange ways, everyone looses a part of their nervous system in the deal. Look at the miles upon miles of the nervous system in a med chart. Although you may feel 100%, if one percent of the system is lost, then your body has to work 1% harder to compensate. This is where GBS fatigue comes from. No other way. The larger the precentage of loss, the sooner fatigue comes to the surface. There is an extremly fine line between healing and the body adapting itself. Those two get mixed up all the time, and are often a mix of both. Why I always say, the more I do a task, the more disabled I become. As you’ve heard, time is the only medicine for that. Each year I feel less and less fatigue, but because I learned how to manage my energy at a very early stage, it’s hard for me to decifer if I healed more, or just got so used to routine and habit over several years managing subconciously, or if its pure adaption by the body. I know distance is my enemy, so when I encounter it, I use a chair to get me there, then get out of it and walk around. Not the other way around. Here’s what gets me in trouble all the time. As soon as I push the envolope out more and it feels real good, that confident thought rolls through my brain that I can now do more, is my ‘real’ signal that I’m doing too much. That’s when my body reminds me, not so fast now. Easy does it. Just happened to me over this last weekend. Pushed myself harder then I ever had, and on Monday, I was telling my wife how great I felt and I passed my own test, so to speak. That very night, I bent over slightly to set something on a table, and my lower back went out. Because I drained those muscles so much, even though I didn’t feel it at the time, they wouldn’t hold everything in place correctly, and now I’m paying big time all this week. Time, time, time.
AnonymousAugust 23, 2006 at 1:17 pm
Ditto here too. I was feeling ‘so good’ I was supposed to return full time to work on 9/1. Well for the last two weeks feeling good got me, and I have been paying dearly. SEvere fatigue, laying around on my butt as much as possible. SEeing doc tomorrow. I think depression may be contributing to it. I had GBS 6 months ago, a “mild” case (no ventilator, was able to walk to bathroom whole time.) Fatigue is kickin my a$$. I have to work 3 days a week, and have two children, ages 9 and 4. My spouse has been on nights again this month, as soon as he gets back on days, things should get better for me. I havent done any strength training this whole 2 wks because it’s impossible when fatigue attacks. I am not attempting full time work now until January. Then it will almost be a year.
AnonymousAugust 23, 2006 at 2:02 pm
Thanks everyone for the replies, I am going to go ahead and buy that wheelchair based on the feedback instead of using the rental I have. I can get some pneumatic tires that will get me down my road, bigger casters and plus I can get a nylon seat instead of that horrible vinyl that comes on the rentals 😀
AnonymousAugust 23, 2006 at 4:23 pm
If you have insurance, get a docs script and they will pay for it. Here’s something a lot of patients don’t know about. You can get any wheelchair that serves your COMPLETE needs. You have rough terain into, or around your place you need to traverse each day, they have to accomadate it. This is a safety issue. No company, including insurance, can put you in harms way. Exactly how I got my $26k powerchair in the beginning, and a manual to go with it months after. Most all insurance policies say a person gets one chair only, just like mine did. What if my wife is with me out somewhere, and that powerchair breaks down? Do we call an ambulance to take patient home and leave that there? Then call someone to go pick that 317# chair up? Then bill the insurance for those costs, or would you just like to provide my wife with a manual chair as backup? We got the manual without a squeek from insurance immediatly. Don’t tell them, but I could only use a manual by someone pushing me 4 years later, but hey, it kept us from having to buy one on our own, and now, when I go somewhere, we just throw it in the trunk for emergency use, like long distance stuff.
AnonymousAugust 23, 2006 at 5:57 pm
I am 2-1/2 yrs post GBS and find that my endurance if variable, like my other residual problems. Some days I feel almost “normal”, while other days everything seems to be acting up and I have a hard time just functioning well enough to get through the day.
I definetly have an increase in fatigue, lower endurance, and more residuals acting up when I’ve overdone it or have not slept well (or enough) the previous day/night. This happens every time.
But sometimes, I also have days (even a many as a week) where I am dragging around and my residuals are acting up like crazy, even though I have had mild or moderate activity levels and have plenty of good sleep.
There are lots of theories floating around out forums about why this may happen, but nothing I’ve been able to pin down.
From what I’ve heard from others, some of us never reach our pre GBS level of endurance. I hope you will be one of the lucky ones!
AnonymousAugust 23, 2006 at 7:39 pm
Mine may be a therory, but it’s not floating. Everything I put on here, I’ve discussed with neuro’s and other kinds of docs first. Not with one either, I always get a second opinion at least. When they say I may be on to something, then I try to pass it on. Anyone can do this. Doctors know very little about the nervous system as a whole, and even less about what GBS leaves behind. I got the best seat in the house, and that’s why they listen to my ramblings.
AnonymousAugust 25, 2006 at 12:16 pm
Hey there just wanted to let you all know that I just spoke with my insurance company and they said they will cover a new chair 100% if it is determined medically necessary. So, if I get a perscription it will be covered. I have an appointment tonight with PT and will get the recommendation from them and then meet with my Dr on Tuesday so I can get the perscription then. I figure to avoid any problems I am going to ask both the PT and the Dr to write up that I need an Ultralight chair that is 25LBs or lighter (due to endurance issues) and that I need one with wheels that will run on a dirt road. Then I dont have to worry about insurance saying that a $200 chair would have suited my needs and have issues with covering the complete cost of an expensive one.
Thanks Racer for saving me some $$$ hopefully now I can get the recommendation and perscriptions as I am expecting.
AnonymousAugust 25, 2006 at 12:53 pm
Just keep in mind that what choice is made on a wheelchair, that it is your choice alone. Not a therpist’s choice, your choice. It’s got to be right, and do everything you need it to do, or close to it, the first time. They will not give you a second chance. Demo chairs if you have to, and ask to see the catolog on the 1000 different varieties and set- ups. The weight of a chair is not that importent, but how those tires get you threw the terrain you face will impact you more. Choose wisly and carefully. Just as every insurance policy says you are entitled to a room in a hospital or anywhere you need to be, it says nothing about you have to take a room with room mates. The staff at these places put you in there, so they can pack their workload nice and close to them. Why I got private, large, comfortable rooms to stay in, and others are trying to move equipment around for a loved one, just to stand by your bed. Same with wheelchairs. It says you are entiltled to mobility, and we will cover a chair. No dollar amount involved. My PT rolled in a power chair for me while getting close to leaving the rest home. It was the cheapest and easiest way for THEM to get the check, without doing more paperwork. Cost under $2500. I fired the sales lady, and had a good heart to heart talk with my PT. She and the sales lady decided for me, what I’ll get, and it was something I couldn’t even operate in my condition at the time. A month later, I went out with a $26k head array set up powerchair that I could get around in. Not one complaint from insurance either.
AnonymousAugust 26, 2006 at 11:24 am
Hi there, after meeting with my PT sounds like this process is going to be easier than I originally thought. My PT agrees from what i have told her that I need a different chair, she is calling my neuro to get a perscription. The rehab clinic works with a wheelchair company in town that is in network for me and she says that after she gets the perscription someone from that place will meet me at rehab for one of our sessions. I will explain what I need and they will help me out making the best choice for a chair. I was asked if I would be ok leasing vs buying and I told them I want to buy one since it is expected I will need it for 1yr+. My insurance company will pay 100% if I buy and only 85% if leased/rented so again more incentive for me to buy.
So sounds like next week I get to meet with someone and go over options and needs and get this moving along. I am told that they do have chairs available for me to play around with as well. I have told them already that I want an Ultralight model because of the endurance and my PT agreed so hopefully the guy from the wheelchair place will agree as well (I mean it is more $ for them anyways).
Thanks for your help
AnonymousAugust 26, 2006 at 1:08 pm
Here’s the neat part and why I had my insurance buy everything, and I refused to rent anything. Five years later, I donated back to my rehab department over $5k worth of equipment and adaptive devises that they didn’t have, and said, either use them, or give them to an underfunded patient for free. Also, deductable on Fed taxes. Got a donation letter and all to make it all official. Instead of going to their gym to use a standing table thats bolted to the floor, I gave them a $1500 one I used at home, that can be rolled into a patients room, as an example.
AnonymousAugust 27, 2006 at 5:30 am
tomorrow will be my 7 yr anniv. abt 2 months ago my endurance finally approached near normal. it feels like a gift of life. also abt the same time i was able to get off neurontin. lee, you & others will gain more w time. Get Better Slowly. never give up. never give in. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousAugust 27, 2006 at 2:38 pm
Your words of encouragement came at just the right time.
I’m struggling through a 2nd week of “bad” residuals, particularly fatigue. Also feel like someone rolled me down a hill in a barrel – everywhere hurts.
No particular reason that I can determine – minimal stress, lots of rest, taking it easy etc. The previous month was really good, and I felt relatively normal.
I had just started to feel down and start a little pity party for myself when I read your. Congradulations on getting your life back! It gives all of us something to hope for.
AnonymousAugust 28, 2006 at 12:26 am
I am post GBS since May of 2000. I was finally out of the wheel chair around October or November of 2001. Though I still walk with 2 canes, I can get around fairly good. Some days not so good, but that’s par for the course.
As far as endurance, that is off and on. A good day is so much fun, I tend to overdo it and I pay for it. Thinking back, it took me about 3 years to say that I was confident to be on my own as far as shopping and driving.
But, everyone is hit by GBS differently and their residuals are also different in how long their flairups last.
If you are slow at building up your strength, you will increasingly be able to endure longer as you progress. Just remember, you have to stretch and exercise or you won’t progress. And make sure not to overdo, because that has a tendency to make you loose progress.
Good Luck and remember GBS is getting better slowly…….
AnonymousAugust 28, 2006 at 7:05 am
Congratulations, Gene. You are a wonderful role model.
It is easy to blame some endurance problems on GBS but it is always prudent to look for other reasons. My low endurance level is partially a result of lung damage (including 30+ years of smoking) predating GBS.
AnonymousAugust 29, 2006 at 6:36 pm
November will be two years for me…and I still need to use my wheelchair if a trip to the store, mall, or anyting that requires walking of any distance.
I can stand, for MAYBE five minutes at a stretch.
I have all the use back of my hands, and seem to have all my dexterity back.
On the down side, my feet still tingle ALL the time, and my balance is USUALLY okay, but every now and again….I get a case of the “tipsies”.
I had to abandon, for the moment, and hope of going back to work…so I started my own business from home. I make leather holsters for police and civillians.
I HAD to get back on my feet as soon as I could because I had a 6 month old daughter at the time, and needed to be able to care for her,
She is 28 months now, and we do pretty well as long as we are at the house.
So, I have given up hope in a total recovery, and am just thankful for what I do have back, and any strides I make forward.
AnonymousAugust 29, 2006 at 9:06 pm
Congratulations Gene and thanks for your very helpful posts!!
Doby, October will be a year for me. The last couple of weeks I’ve moved off the plateau I’ve been on and I’ve started to walk very short distances with only the help of someone holding onto the Posey belt!! The distances are short (10 – 40 ft.) because my legs start to give out — however, I do not feel tired, only energized. It is so thrilling.:D
The problem is that my mind is ready for any challenge and my body just fails me before I’m ready to sit down, or whatever. But that’s okay because my husband and my PT keep reminding me of how much I have progressed.
Good Luck to all on this wonderful site!
AnonymousSeptember 1, 2006 at 2:13 pm
The drama continues on this…
My PT and Neuro both agree that I need a chair purchased, both thinking an ultralight model with some pneumatic tires with some tread so I can get onto my driveway and the weight being an issue because of endurance and the lack of strength when I’m able to drive again so I can lift it in and out of the vehicle.
I spoke to the wheelchair place yesterday and they tell me that they doubt that insurance will cover a chair because they have never had a case where insurance will cover a chair if a person is able to get around their house without the use of it. I’m just frustrated right now… If I can get to my kitchen so I can get food on my crutches then that good enough to them but they dont care that I can’t get the food in the first place if I dont have a chair to use at the store (rental is too heavy and living in a rural area the tires dont do much of anything). If insurance denies the claim I am going to ask them if they expect me to pay the bills they are sending me and when they tell me yes I am going to ask them how they expect me to get them since I cant get out to my mailbox with the wheelchair that I have. Unless I get a different chair then I can’t get my own mail so I guess they expect me to magically get the bills into the house and then again somehow magically send them (maybe through telepathy, maybe through telekenesis) back to the mailbox again.
Just frustrated today and had to vent a little. 😡
AnonymousOctober 16, 2006 at 11:24 am
Good news… my insurance approved the chair and the wheelchair company dropped it off at my house yesterday!
I have a followup appointment with my neuro next week at which time I am going to get an order for OT so I can take the driving test and see if I’mr ready to drive again. I am so excited and hopefully I will be cleared to drive because this really sucks having to have people drive me around. Now that I have a lighter chair I need to work on different methods of loading it in the truck myself so that when I get the all clear to drive I will be good to go. My boyfriend has been loading it for me up until now by putting it in the bed of the truck… I will probably just practice in my driveway so as to not annoy him with taking too long in the parking lots right away 🙂
GBS requires patients both for the one who has GBS and any care givers as well so.
AnonymousOctober 16, 2006 at 12:19 pm
Congrats on your new wheelchair. You provide an example of putting yourself through un-needed torture. My wife does it all the time too. Talking to the wheelchair people got you nothing but heartache. Never go on what a supplier thinks or talks about. Your PT and doctor got you that chair. Period. Which it should be and usually is the case. Don’t forget to tie it down, to keep it from sliding around in the P/U. 🙂
AnonymousOctober 17, 2006 at 2:12 am
I am coming up to 3 months since i camae down with GBS. Considering i was completely paralysed and on a ventilator (in a coma for 5 days) I am absolutely amazed at where I am today. I walked out of hospital after 7 weeks completely unaided and require no ongoing therapy. The only problem i have is stairs – it feels like i am wearing concrete shoes! I do have fatigue but I am able to do things like go shopping etc. I think the fatigue is improving and I am considering returning to work in the near future. i am just worried if i do go back to work i will be exhausted by the time i come home and unable to do anything around the house – which is not an option with 3 small kids. I have just got to the point where i can handle most of the household activities (a couple of weeks ago changing the sheets on the bed meant I needed a rest) and dont want to jeopardise that.
AnonymousOctober 17, 2006 at 10:35 am
[QUOTE=montanasmum]I am coming up to 3 months since i camae down with GBS. Considering i was completely paralysed and on a ventilator (in a coma for 5 days) I am absolutely amazed at where I am today. I walked out of hospital after 7 weeks completely unaided and require no ongoing therapy. The only problem i have is stairs – it feels like i am wearing concrete shoes! I do have fatigue but I am able to do things like go shopping etc. I think the fatigue is improving and I am considering returning to work in the near future. i am just worried if i do go back to work i will be exhausted by the time i come home and unable to do anything around the house – which is not an option with 3 small kids. I have just got to the point where i can handle most of the household activities (a couple of weeks ago changing the sheets on the bed meant I needed a rest) and dont want to jeopardise that.[/QUOTE]
Yolande – I went back to work 7/06 after coming down with MF 3/06 and just had to take medical leave – every 2 hrs I was soo fatigued & stressed and felt worse than I did after 3 months – don’t push it.
AnonymousOctober 17, 2006 at 12:05 pm
By going back to work, you will be proving to social security that you can work now. Your signiture, at the bottom where you’ll be cleared to work. If elegible for any assistence, better find out what you can and cannot do. Make a complete work day before hand, and try it on for size. Otherwise, the fight will be on if you can’t phisically hold up to your employment. Might need a year off or something, but your signiture says you don’t need a year, if you just return and find out it isn’t working out. Be careful what you wish for.
AnonymousOctober 17, 2006 at 7:04 pm
I second Racer’s concerns about you going back to work. I believe with SS disability you are allowed a trial period where you can see if you are able to work by trying it for a short period, but I would check on it carefully before you do it. Go on the SS disability website and read the rules about this.
If you do decide to work, and find that you can’t handle it, you may be stuck because you’ve worked. Crazy and not productive way to do things, but they make the rules.
AnonymousOctober 18, 2006 at 4:26 am
my current medical certificate runs out on fri (they gave me 3 months originally but seeing i was in a coma i think that was just off the top of their heads) I have an appt to see my GP tomorrow and will ask her to give me another certificate for a few more months and then i can decide when i want to go back to work. I dont know what social security is like over there. We have to report my partners income every fortnight and if he earns over a certain amount i am not entitled to any payments anyway. We have a carers allowance of $94 a fortnight that is not income tested but we didnt qualify for that as i am not (or was not when i applied) disabled enough – even though when i first came out of hospital i could barely look after myself let alone the kids.
I have just found out i do have income protection insurance so hopefully i will get some income from that and can forget about social security. Dont worry i will not be going back to work until i feel 100% ready. lucky my work is pretty flexible. I will probably go in for a day to see how i go before i go back for good.
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