anxiety and physical therapy
AnonymousJuly 25, 2008 at 5:16 pm
I had or have GBS going on two years. Started a new round of physical therapy. Had achilles tendon release in both feet. Wear afo’s on both feet. Walk with aid of forearm crutches or cane. Am driving some. My therapist wants me to walk without afo’s. I dont know if it is my mind or my body limiting me. This has taken a bigger toll on my mind than my body.I am still numb from the chin down, dont know what feeling will come back if at all. No one is able to tell me. Just work with what I have now, That sucks!!!!I want my old body back pre GBS. I am tired of how hard this is. I should be thankful for what i am able to do. Some days I am but today is not one of those days
AnonymousJuly 25, 2008 at 10:23 pm
Regardless of how hard your therapist wants you to push yourself, your body wont do what it cannot do. Considering you are still numb from the chin down, im not sure how or why the therapist wants you do walk without the AFO’s. Only IF and WHEN you are able and feel comfortable,only the should you walk without the AFO’s. If the muscles have atrophied and are not in shape then you should definitely be still in AFO’s. I wonder if she realizes that ‘making’ the muscles do something they are not ready to do causes serious damage to the skeletal make up too.
Just a F.Y.I, a very good friend of mine broke her Tibia because she didnt want to wear her AFO’s, and she cannot feel her feet and has drop foot. The result has been months and months of increadible pain, and a couple of surgeries to try and mend the bone.
AnonymousJuly 25, 2008 at 11:14 pm
Amy, You need to get a new pt/ot one that has experience with gbs people! Don’t walk without afos especially since you had the release. I don’t want to put a damper on your hopes at this time but if you walk without afos and you can’t control or feel your feet you will have alot more problems than you have right now. PT pushing you beyond what your body can handle can push you into a relapse and you don’t want that either. I understand how much you want your old body back, I’m in the same boat. Just try to keep a positive attitude, it will carry you through the ruff times. Hugs!! Take care.
AnonymousJuly 27, 2008 at 11:58 am
Thanks for the replies. i keep telling them i am not ready. They say i wont get better if i dont walk without my afo’s. I already twisted my ankle. My ankles just arnt strong enough. they say it is all in my head. i know what my body feels or doesnt feel.I have been diagnosed bi polar and now i think everybody sees that as my problem and not my physical limitations.
AnonymousJuly 27, 2008 at 12:13 pm
Man, it is so frustrating when people don’t get it. You would think our therapists would know better but they often don’t. Listen to your body and do what it tells you. in the long run you will be better for it. Trust me. I had GBS 25 years ago and no one told me this. I pushed way to hard and now I am paying the price. It wasn’t worth it. Take care of yourself.
AnonymousJuly 27, 2008 at 12:29 pm
I have had dropped foot and had the release. My ankle bone is sticking out you know that nobby thing at your ankle. It is red and forming a callus. Hanger prothetics says that is normal and they put padding in the afo. It really hurts and has effected my walking. I just can’t get anybody to listen to me. It was like that when I first got sick i knew something was wrong but because of my bipolar diagnosis no one takes me seriosly. I mean in my own family too. I appreciate this forum it allows me to vent.
AnonymousJuly 27, 2008 at 3:03 pm
I hear you. It is a challenge from all sides to feel that we are being heard. I personally find coming here a help. This is the one place where we can go and vent and no one judges us. It is a chance to connect with floks who get it. I also enjoy going to the Lighter Side thread. It is a chance to kick back and have fun with people who share things in common with me. We also have the Tavern. Join us there. It is s cyber bar where we laugh, joke and have some fun.
Take good care.
AnonymousJuly 27, 2008 at 7:29 pm
Well I guess Amy you can call me a quiter! I was forced to do the physical therapy stuff too and my body was not ready either. In fact I have quit PT three different times. I have tried doing it but my body was just not ready. I guess the best thing to do, is do what you can do and in time the other will come.
Take it one day at a time! Try not to get too frustrated.. even though that is hard to do when we are sick. I am a perfect example of that word. Not easy I know!
I remember back 17 years ago before I started getting sick with Lupus and I saw myself dancing and swimming and doing so many things. And each day I do try but it’s hard. Very hard!
So I truely feel for you Amy and hope things get better. I remember when I was bedridden for a while and that was many years ago before I gt diagnosed with Lupus. They were trying to figure me out. It was so depressing.
I started using my mind over matter. Anything stressful I tried to block it out and I started my own goals. When I started getting treatment back then, I went outside and started building my body up by sitting outside with a spoon and planting flowers. Sliding from ground area to ground area.
I had to crawl for a while and then I started walking again. That was my story with Lupus. Now! If I can just focus on getting this CIDP in control then I will have my second story.
Together we can do it as a team! 😉
AnonymousJuly 28, 2008 at 3:25 pm
There is a careful balance with GBS and physical therapy. For physical therapy to work you need to push yourself to do things that you are not comfortable doing. It is the therapists job to learn enough about you so that the therapist will make sure you are doing enough to regain the use of your body. To evaluate what they need to do and how to do their jobs with the greatest efficiency, then you may have to do things you aren’t comfortable doing, like walking without AFO’s. They may need to see you try in order to find out what they need to work on to ensure you will be able to walk without AFOs in the future.
With that being said, you need to keep in mind the rule of thumb for GBS and therapy. You have done too much if it takes more than 12 to 18 hours to recover all of your strength and energy after a workout session. The only way you can learn what a reasonable workout is like is by trial and error.
Please keep in mind that you and your therapist are a team and that you both share a common goal, your future health. In order for a team to work, you are going to have to have good communications. Ask a lot of questions. Give your therapist as much feedback as you can. Make sure you know why the therapist is asking you to do things.
Amy, please take care of yourself and remember that you need to be your own health advocate.
AnonymousJuly 28, 2008 at 7:15 pm
I know the therapists want me to get stronger. I just dont feel that walking without my afo’s is the right thing right now. I thinnk i see my gbs doctor and my foot doctor this week. I am going to talk about it. A little anxious my mom(main caregiver) goes to new york for a week. This leaves me at home with my dad. He isnt excactly the caregiving type. Plus we had to put my cat to sleep he had cancer. Boy THis isnt very uplifting email. Sorry. Good news i started in the compeer prgram and have been matched with a very nice lady. We are meeting for lunch tomorrow. Someone who doesn’t know the pre gbs amy She knows only me today. Less expectations this way
Lunch went great drove myself there. Having a problem with my ankle bone sticking out anybody have this problem after a achilles release. It has put a sore spot on my ankle. See the dr next week. Making it difficult to walk.
AnonymousJuly 29, 2008 at 12:06 am
Amy, enjoy your luncheon tommorrow. Thie week is a chance for you to see how you can manage without your mom. You may surprise yourself and be able to do things you didn’t think you could. And i am sure your dad will love having you all to himself. Dad’s and their daughters are special!
AnonymousJuly 29, 2008 at 9:20 am
I agree with Lee, that your therapist is motivated to get you do do things that are uncomfortable – even push you “a bit” to see where you need progress and where things are ok. I had rounds and rounds with my therapist – but in the end, I saw where she wanted me to go, and we worked together to get there.
About your luncheon, I too, had feelings where I was glad to meet people who didn’t know me before GBS. However, I did (after some time), discover that I was alright being GBS-guy. That I had overcome something that many others cannot imagine.
Hang in there, and be safe.
AnonymousJuly 24, 2009 at 9:40 pm
well as of now i only wear one afo on the left side. tried to get rid of it but the ankle is to weak. My therapist (a new one) and i discussed it and we are going to work with the afo on. she still manipulates my feet with it off and i do standing but beyond that we put it back on. I have had to quit driving my CIDP(gbs now cidp) has me numb again from the chin down. not receiving treatment as of yet. Seeing a new neuro and he did an mri of my brain. everything looked fine. going to a sleep study neuro thinks part of my problem is sleep apnea. ???? not sure???? i know i have sleep apnea but numbness and tingling come on. As symptoms progress it frustrates me and my family. I hjave posted else where but thought i would update an old thread. still going to lunch with my new friend. she is very patient and understanding. Now she picks me up since i cant drive. It has turned out nicely that she has only known me with gbs/cidp. she is much more understanding than my family (explanation is other posts other threads). she puts no expectations on me but to enjoy the lunch or occasional movie. I also went out tonight with a friend i met while in the pyschiatric floor of the hospital. she understands the mental aspect of my issues. and is also patient with me with my physicalissues. she even picked me up. she doesnt drive much and coming to get me was propablya 30 mile round trip drive. But i am having some issues right now and she wanted to help me get away from everyday problems at least for a few hours anyway.JOJO
AnonymousSeptember 11, 2009 at 6:42 pm
going to the Y three times a week. finished wi th PT for now. doing water exercise and then the gym, going to hire a personal trainer. my stomach has been bothering me. went to the doctor and he said must be leftover from the flu. then i stopped by this week and told him it was still hurting and he is scheduling me for an ultrasound and a more thorough blood panel. it is killing me. They arent sure if it is my stomach or something else. just a pain in my left side. i had my gall bladder removed a few years ago and when it started to hurt it wasnt in the righ t place for the gall bladder so they kept dismissing me by the time they went to remove it it was just goop and in the wrong place. so iam am a little leary of pain in my side.
September 11, 2009 at 10:25 pm
My CIPD is improving, but I need my walker outdoors. My neuro asked me if I ever go without the walker and I explained that while indoors I feel safe without it but that outdoors it is necessary and he didn’t tell me to change. Bless his Soul.
A good friend, however, who has never experienced a nerve disorder told me to go without the walker and that I may have become dependent on it.
Maybe experts would diagree on this one, but I will know when I can handle the outside without my walker.
We are all unique individuals and have unique abilities just like athletes in different sports.
You said you are driving some.. I am not sure if I could drive right now, but when I test drive I will know for sure.
I would rather be safe than sorry so I am very cautious when I move around, and I don’t want to end up with more problems than I have already.
I did fall face down on the treadmill 3 weeks ago for two reasons: 1. I had the speed set too high and was almost running. 2. I was wearing crocs and not my regular walking shoes with the orthotics that I had before I got this disorder. My toes caught in foot drop, because I can’t quite do heel and toe. That taught me a lesson.
I mostly walk and do the bicycle and respect the treadmill, but these activites are comfortable for me right now. I think any activity that has us moving must also meet our comfort level and then we can build on that.
I hope someday I can toss my walker and drive again, and in time you will probably not need your AFO’s. Just be careful!
AnonymousSeptember 14, 2009 at 5:26 pm
But, part of it is up to YOU to educate your therapist about your medical issue!
OK Yes, there are some ‘go-getter’ therapists out there, and they are under pressure to PRODUCE results as fast as possible – Kind of like hairdressers doing the optimum numer of ‘heads’. So, the therapists either no CLUE about such medical issues or are simply pressured to ‘produce’.
Ask this one to listen or ask for another therapist. Sometimes we simply do not connect with one indivdual and another works. It’s either your money or your insurance co’s and that =your money in the premiums. Don’t be shy about this? Would you let your hairdresser or anyone else push you around wrongly? And, yes, sometimes stretching muscles that don’t want? HURTS! But, these folks know or should know, how to do it safely. Maybe for you? Just not soo much at one time?
What I’ve done in the past [and I’ve been thru many p-therapists?] Is come armed with a fact sheet from the NIH about GBS or, as I have CIDP. Then I make it clear that I am very willing? But I drove here and if you over work me? I’m not going to make it home without accident [implied liability left unsaid].
Once they READ about such as we have? They get a better grasp from their perspective on how best to ‘deal’ with us. And, yes, now and then, you’ll get the WALK! command. And, you mite be afraid? But, if they are rite there to catch you, cool!
Also, the programs usually want to work up to 50+ ‘reps’ of many different isolated muscle exercises, Ask IF you could trade off and do 25 of this, then 25 of that, and back again. That’s what I do and find I’m FAR less tired for the ‘doing’. And ultimately in the end? YOU can do more than the ’50’ and not have the ‘wobbles’ afterward. Surprise yourself.
Lastly, and getting your doc in on this is crucial! Is to ask for what’s called a ‘home program’ where you get a theraband or other tools along w/copies of exercises you can do at home in-between sessions! Do some here, then there, then more each place and it really can and does add UP.
I keep coming back for more punishment, And it keeps working, so, I’ll keep at it. Moving on my own two legs rather than devices is far superior to the alternatives. FAR more freedom of sorts. So, work at it, keep at it. Please.
AnonymousOctober 23, 2009 at 1:51 pm
still wearing afo in left side. CIDP causing weakness so i am back to my crutches. have a kidney stone going to have lithotypsy next week. Once i pass the stone they are going to start me on IVIG. I am a little anxious. a lot going to happen in next couple of weeks, will try to keep you updated thanks amy
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