Does physical therapy help or hinder recovery?
AnonymousMay 1, 2007 at 8:05 am
How do you all respond to physical therapy? Or perhaps I should ask, how did you respond earlier in your recovery?
It’s still quite early for me, but I’m really struggling with PT right now. Acute rehab as an inpatient was great, as I got tons of rest between treatments and was able to focus 100% of my energy on PT. But now that I’m back home and have switched to outpatient treatment, I’m have a hard time with it.
I just feel like I exert so much of my energy even just doing the bare minimum at home that by the time I get to PT, I’m already exhausted. So it seems that any work we do (even if it’s just a little bit) pushes me over the edge and wears me out so that the next day I’m worse off than I was the day before.
My therapist is very sensitive about trying not to wear me out, but it just seems like it’s unavoidable. I’m hard pressed to find a solution, too. I know PT is important and have no desire to quit, but I also don’t know how to do it without causing setbacks and exacerbating my fatigue, muscle pain, and joint stiffness.
Is this normal?
AnonymousMay 1, 2007 at 8:21 am
I found it very “normal” then and now for me to experience “fatigue” in the early stages of recovery from just the routine tasks of the day. Exercise within my limits, which where less than what the physical therapist had in mind did help. I found that many even in the medical community including my physical therapist do not understand GBS/CIDP and the limitations associated with these. When one looks normal they should be able to do normal things. I only wish that were true. Yet, most would listen, and respond to explanations of my limits.
AnonymousMay 1, 2007 at 9:09 am
PT was very hard for me at first. My whole day evolved around it. all I did was PT and tried to rest as much as possilbe the rest of the day. I still had to be a mommy, but I had to modify things, such as sitting and doing things I would normally stand for. PT would wipe me out, but I believe without it, I would not be where I am today, which I consider 95% of my pre GBS self. I am working on distance walking now, as I still cant walk as far as prior to GBS. BTW I am 14 months post onset. Good luck to you, recovery is slow, but you will see progress over weeks/months.
AnonymousMay 1, 2007 at 9:15 am
Yah Pt Is Very Imp And We Should Not Quit It At Any Cost. But Slow And Steady Wins The Race The Same Thing Applies Heare Also. Now The Stage Ur Is Like A Child Who Learns From The Beginning. So Dont Worry And Dont Get Panic Most Of Ur Will Power Helps U To Retain Ur Strength. As Per My Experience I Used To Do The Therepy First And Then Go For The Hot Bath Which Releives Me From The Pains. Pains Are A Part Of Our Life Now Which Stays For A Long Time. But Do The Pt For Each And Every Part Of The Body With Out Fail. Take Ur Medicine S And Do The Pt, Dont Loose Ur Heart. Thats The Right Way To Lead Ur Life.
AnonymousMay 1, 2007 at 9:22 am
I started PT 2 days out of the hospital. My therpist told me what he would be doing and why. To me it was a life saver and got me walking faster. My healing inproved and again as I have heard over and over LESS IS BEST, At home do what your therpist tells you. NO MORE. I do not exersise the day I go to therpy. My therpist took me from a walker to a cane to without a cane in less than 3 months. He was tough and knew my limits. He did not baby me.
Try walking up 3 flights of stairs without any support. I could never have done this without therpy. Doing more than you are told will definatley set you back. LESS IS BEST. Have a great day and you are in my prayers (Steve)
AnonymousMay 1, 2007 at 9:44 am
Suzanne, how often are you doing pt? with your being a mom of 2 babes you need to have fewer pt out of the house, because you are getting quite alot of pt at home from taking care of the little ones. you need to add that into the equation, picking up a baby is equal to lifting weights, bending over to pick up toys off the floor is equal to abdom work, walking in the house, grocery shopping and so forth is equal to walking on a treadmill etc…. you sound like you are headed for a residual excerbation, you need more rest if you are feeling alot of pain, fatigue and stiffness. your body needs rest especially this early in recovery. pt is important, but in my opinion you are getting alot just by taking care of your children. your priority is you, your kids, and out of the home pt would be last, and with it going into the summer months in just a few months, you don’t want to be hindered with a flare up of residuals in the heat. Rest and set your limits. Take care.
AnonymousMay 1, 2007 at 10:17 am
Hi, my daughter (11), whose GBS began 2/07, is doing PT with a therapist 1x a week. She does some exercises and assisted exercises/stretches 2x a day, with us at home. She can walk w/ a wheeled walker, but it is very hard, very slow, and very exhausting. So anything more than walking from one room to the next, she’s in a wheelchair. Like you, she has resumed her ‘regular’ life within limits, going to school, etc, and when she began going to school PT became much harder for a while. She just didn’t have as much energy. That is probably the case for you, too. Trying to do your ‘regular’ tasks takes a lot of energy and probably is providing a good deal of ersatz PT in and of itself.
I think PT is helping maintain her strength/flexibility but as far as speeding recovery, not really. Hindering: yes, if she does too much. First time she did Aquatic therapy, they did 50 minutes of non-stop therapy. She fell asleep in the dressing room and was out the rest of the day, and her legs got numb for a couple hours, she could barely do 10 ft walker-walk to bathroom the rest of the day. So, we are still doing Aquatic, but take it a little slower.
Just saw a rehab doctor yesterday and he said frequent, brief exercise is better for her than longer sessions. The therapy visits are always pretty tough on her, but she’s bouncing back much faster now, so that is progress. We are all terribly impatient and really want her to walk asap, but I am coming to realize that more PT will not make her get better faster. Rehab doc was assessing her to see if inpatient rehab would help, but he said it would not help her get better any faster. The nerves have to heal, and as long as we maintain strength, range of motion, and flexibility (which he says we are doing well)—then we just have to wait! Very hard to be patient, as I am sure you know!
AnonymousMay 1, 2007 at 12:39 pm
I would have to agree that inpatient PT seems to be much easier than outpatient. I was transferred to a rehab facility for about 2 weeks during my bout with GBS in 1995. While I seemed to be the only one under 70 there, lol, it seemed to help my recovery quite a bit. Classes were spread out during the day to allow recooperation time, and focused not only on strength conditioning, but also adjusting to living at home in a wheelchair/walker.
Once I went home, and had different people coming in to my house for PT, it became much harder. There was no coherent “plan” between the different PTs, they all had their own approach and theories, so that made it difficult. Plus obviously there are so many more distractions and obligations once you are at home. Even if you are home but go out to a PT place, there are still many distractions.
I guess I would say ultimately that outpatient PT does help, in moderation. It is better than nothing, in my opinion. Its good to have that regimen going: once the visits from the PTs stopped, I slacked off a little on doing my [I]own[/I] physical therapy, and looking back now I wish I hadn’t.
AnonymousMay 1, 2007 at 3:09 pm
I was talking to nate’s new Neuro yesterday and I was telling him about the mess Nate’s insurance made when they cancelled him for NO reason while he was paying for Cobra after his job terminated him.
The hospital denied him PT and anything else the MediCaid didn’t pay for. It took me 5 mos to get someone at his insurance company to listen to me and reinstate his coverage.
Thats when PT people finally stood him up to see if he could stand. They had not been doing anything for 5 mos because they wouldn’t have gotten paid. In the meantime, his right ankle became badly deformed and no one did anything about that either.
His new doc says they definitely slowed his recovery down by not giving him PT and not helping him with his deformities.
Doing PT is very important. Your recovery won’t go anywhere if you don’t do it
But you need to take it slow. Forcing yourself to do more than your body can handle only makes you too tired and sets you back.
Your body will let you know if you’re doing too much.
AnonymousMay 1, 2007 at 7:43 pm
Easy does it with lots of rest; do your own muscle tensing activities (try and move those extremities) as often as you can because I think it tells the nerve pathways that you request access to the connecting routes, to build alternate routes in the event of damage. Tell the repair teams to get to work, but do not over do it!:cool:
AnonymousMay 1, 2007 at 11:22 pm
I had same problem. Best to increase very slowly. A trick my therapist did(she has previous experience with GBS) is to go every other day and rest the weekends(MWF). I could not recover fast enough to go everyday. Your insurance pays for the number of treatments not the total duration so spread them out. This also helps you get longer treatment. I just completed 29 apts but it took me 3 months. I also canceled (plenty of notice) several times and she really understood. Time is best but I really believed the PT helped perserve my muscle strength. I am just 4 months out and back to work 6 hours a day and 2 small kids and it is very very hard. I am glad I stuck with the PT. Remember to listen to your body. Dr. Shawn
AnonymousMay 2, 2007 at 6:25 am
I am continually amazed at how the types of care differ, especially between here (Australia) and the US.
I had physio twice a day while in ICU – mainly just manual movement of my limbs etc but also a couple of times on tilt table. I would be transferred to the tilt table then slowly raised to whatever angle i felt comfortable with. It was an incredible feeling to be “upright” and to put a little weight on my feet after having been lying around for a few weeks.
Once i was moved to a general ward i had physio once a day – mainly to get me up and about. I started using a standing hoist to be pulled upright and then moved to a chair (again a ghreat feeling to be upright even if not under your own steam). Within a day or so i was able to stand using a frame and take a few steps to a chair. Then i was walking with a full support frame, then graduated to a wheelie walker. My physio was primarily concerned with getting me walking again safely.
After 51/2 weeks i was transferred back to my local hospital for inpatient rehab. I had physio twice a day. I had to shower myself and get dressed. The rehab program was all about being able to do the things you would have to do at home. Physio was not so much strength but re-learning how to walk again – walking uphill and down, over uneven surfaces, over obstacles, up steps etc. All the things you take for granted but suddenly realise arent that easy when you have to relearn them. I had to walk the corridors of the hospital bouncing a ball to relearn how to walk without thinking about it (not as easy as it sounds). I also had to do “power” walking – had to be able to walk quick enough to cross at the traffic lights! My OT also had me make a cup of tea and toast to ensure i was capable of feeding myself! I wish discharged after 10 days of rehab. I didnt have outpatient rehab as the PT said if she felt i needed more rehab she would have kept me as an inpatient. i realise now how lucky i was to be able to stay in ICU and in hospital as long as my carers felt necessary and not be at the whim of insurance companies etc. The best advice i got was that doing my daily activities was the best therapy i could get. Therapy for GBS patients is not about rebuilding strength but regaining function. In the early days even the most minor tasks could leave me fatigued for the rest of the day. The first time i changed the sheets on the beds nearly killed me. But as long as you dont overdo it I find things do improve slowly until you realise you are able to do something you couldnt do weeks before.
AnonymousMay 2, 2007 at 6:55 am
It is harder at home because you have to self manage yourself unlike in hospital its totally about you and rehab. My physio always said to me one of the best forms of rehab was getting on with day-to-day activities and believe it or not the more you attempt to do household chores the more you’re attempting to use different parts of your body so that is physio in itself. Just balance your daily activities with your exercises and rest and as each day passes you will get stronger and things will get easier, that’s what I found happened for me anyway. It is work in progress and it does take time, so you will get there in the end. Hope this helps 🙂
AnonymousMay 2, 2007 at 8:02 am
All your responses have given me some good food for thought. Right now I have PT three times a week at an outpatient rehab facility. I started out with 45 minute sessions, but the therapist quickly changed it to 30 minutes because it was clear that 45 was too much. But most of what we do is stuff like walking laps around the facility, walking around outside in the grass, practicing on stairs, etc. and that’s all stuff I do at home during an average day anyway. It just seems like adding more work on top of my necessary activity.
In acute rehab, most of what I did was exactly like what Yolande described. I couldn’t even stand up by myself when I got there, but I practiced using a wheelchair, then a wheeled walker, then a cane, then nothing… and I did the stuff like bouncing a ball while walking, too. I left the hospital able to walk slowly but unassisted. I really felt so much stronger then.
Now I’ve had to return to using a cane because my legs are so weak, tired, and sore all the time that I can’t support myself so easily anymore. Plus, my balance is so shot that I’m worried about toppling over when I’m tired, so the cane gives me that extra help I need to make sure I don’t fall over.
It’s frustrating to feel like I’m making steps backwards, but I guess to some extent that’s just part of returning home and exerting myself more than I’m used to. I try so hard to rest, but with two young children, that’s easier said than done!
AnonymousMay 2, 2007 at 7:32 pm
I had a very severe case but they caught it early.After the 4 weeks in CCU where I was getting “baby therapy” such as stretching my hands and fingers and feet , then them just trying to get me to sit up or roll over I’m sure helped and that was 2 times per week I “think”. Then after the fourth week they transfered me to a rehab Hospital that was SET up for spinal and head and everything other kind of rehab . They assigned me 2 therapists 1 PT 1OT , When I arrived by ambulance that was less than a mile but cost 400 bucks , they introduced me to the boot camp. I had 2 hours in the am and 2 hours in the pm. I think the whole thing depends on the observation of the therapists and them noticing when your moving forward or backward. Sometimes they would push me hard and others they would say just take it easy this session. I couldn’t even raise my arm or roll over when I went in and 4 weeks later I walked out with a walker and asked to not use it but they refused. Then they set me up with home pick up transportation to get 2 hours 1ot/1pt three times per week and that continued for3 months. I think it helped me tremendiously , but they noticed when to back off and push harder.
AnonymousMay 2, 2007 at 11:48 pm
I have to agree with everyone that rehab was a very important part of my recovery. I needed to be able to brag each evening to my husband on what I was albe to do that day! I had 4 or 5 brags each day for my husband and family members and also for the aids and nurses on the next shift. Their asking me to show them what I could do all thru the day was easier than repeating that exercise 12 times here and 15 times there. Which brings my rehab back to doing those every day things. Routines helped. Mornings started with stretching in bed. Then they would leave to give me a rest. Next was OT and they would help me do my daily personal routine. Brushing my teeth, combing my hair and washing my face. Feeding myself become part of the mornings too! I helped where I could. With breaks inbetween this routine to rest, I took advantage of just closing my eyes and ignored distractions. I truely inherited poor sleeping habits in the busy hospitals. The staff told me you don’t get rest in the hospital. They were right! Then I would have a PT where they would teach me to roll over or pull myself up on a bar to let them move my pillow or to check my back for bed sores. I had to learn to do all that just like a infant! Even running my finger up my body to touch my ear was a big deal but it was part of the orginal process to get me able to comb my hair! To feed myself, to hold my sippy cup! Looking back they had a plan…each movement lead to a larger movement! They worked the upper body and the core and the lower body each day! They tested me to see if I was ready to move on also. I was never rushed or over exercised and they listened to me. There was never any pain caused by OT or PT and if it easy for me to do myself that was my job to keep trying. When I showed them my brag we moved on to the next movement! Some took days…some the mind made the body move by the next day! Somedays I felt like I would like to try something and it was like they read my mind…they would come in and say to me “Let’s try…….!” I started to wonder if I talked my in sleep! LOL Takes time but stick with that rehab it is worth it and don’t be afraid to ask them for an exercise to relieve a cramp in your hand or leg. Don’t be afraid to show them you are not able to move your wrist the way you were before….let them work on every tiny muscle, ligament as well as those tendons just like the larger groups of muscles. Sorry for being so long and rambling but I loved my DREAM TEAM!
AnonymousMay 3, 2007 at 8:24 am
Have you let your PT know exactly how you feel and asked why he/she is doing those partic exercises, if not, I think that’s probably the first step you need to take so that you can understand where he/she’s coming from and vice versa. It’s just as important that you let them know what your goals are, what you want to achieve, how you are feeling etc so that you are taking a proactive role in your rehab and not feel that because they’re the ‘experts’ they know everything.
If it helps, in my case my rehab focused on building up muscle strength, stamina and flexibility so my PT consisted of walking, stair work, balance work as well as specific exercises using aids like the theraband, swiss ball, treadmill, bike, free weights and even if I couldn’t hold onto the handles or peddles they strapped me on so that I was still making my body go through the motions until the strength came back and I was able to do it myself so there was always a way around everything. In all honesty, just walking around is not the only form of therapy, your PT should be targeting specific muscles so that they get a work out. What’s important is that you do it slowly and build yourself up over time.
June 3, 2007 at 5:59 am
I have been reading all the post about outsite PT and makes my wonder if my sceldul will be to much, my rehab PT wants me to go 4 times a week to outsiter PT and also 2 times a week to swimingpool to do my water exercise. and also do my home work to that is doing what I used to do. I´m a candlemaker and I need to do that as well as my home. I was hoping to do little work each day at my workshop to get it run again. do you think Im over my head ? I walk now with walker and have terrible pain in my feet and my hands, even bigg dose of Lyrica dont cover it.
AnonymousJune 3, 2007 at 1:28 pm
It sounds to me like you are overdoing it. I would do either the water aerobics (which I have done twice a week for two years now), or the outpatient PT. But I think 4 times a week is too much, twice a week would be much more reasonable.
Once I was able to get up & walk with a walker & then canes, I quit going to outpatient rehab. I found that by just doing “normal” ADLs, such as cooking, washing dishes, & having to push a cart around stores, that was enough for me. Because I am left with a lot of residuals (must use AFOs to walk & take a cane outside the home), I have a cleaning woman come in twice a month to do the majority of my heavier housework. Then I can conserve my energy for more fun things to do with my husband. Thank goodness my children are grown & out of the house now…
June 3, 2007 at 3:40 pm
Thanks Pam for your reply, Im going to talk with my PT about this, I get fatigue just siting and take care of guest. well Im just home and I try hard to do things but I have no energy yet. Hopfully it comes around. Thanks again, I needed to hear this I thought maby it was just me that was thinking it was maby little to much of exercises.
AnonymousJune 3, 2007 at 5:02 pm
I agree that four times a week is a bit much. Especially if you’re already doing a lot at home in your daily life, physical therapy needs to be done in appropriate moderation.
I’m walking with a cane now, and I confess that I recently decided to end my PT sessions, as I’m caring for my two young children five days a week and live in a home with all the bedrooms and shower upstairs… Trust me, I’m getting plenty of exercise. It’s a struggle to moderate my activity, and PT was pushing me over the edge. I figured if I later discovered I needed to resume PT, I could always call my neuro and he’d be happy to write me another rx to start back up. So far I’ve had no such inclination.
I would feel like crap for several days after my PT sessions, and since I stopped going, I’m doing much better. I feel like I can conserve my energy more and spend it on the things I HAVE to do every day, whereas during my PT sessions, I was exhausting whatever energy stores I had left after an already-tiring day.
If I already didn’t have so many demands on me in my daily life already, perhaps PT would have been more helpful to me. But I feel it was doing more harm than good. It didn’t help that I think my PT had never worked with a GBS patient before and had no concept of what is and isn’t appropriate for rehab in people like us. He kept wanting to treat me as if I was strength training, and I had to keep correcting him; when I’d tell him two minutes on the bike was too much, he looked at me like I was crazy. I think I’m better off on my own.
AnonymousJune 3, 2007 at 10:54 pm
Helga, if i were you i would do only water therapy. i do it 2 days a week and i find it is helping with everything that the housework and kids don’t cover. actually, now that we have our pool up, i’ll be doing water therapy everyday at home next week and throughout the summer. you shouldn’t push it too far this early in your recovery, we don’t want you to relapse due to exhaustion. take care.
AnonymousJune 4, 2007 at 7:32 am
any stress you put on your body must be recovered from in 12 to 18 hours or it is too much & will hinder your recovery. for some, at the very beginning, just breathing to stay alive is all they can handle. listen to your body & give it less stress & more rest. it knows what it wants. take care. be well.
gene gbs 8-99
in numbers there is strength
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