First Aquatic Therapy Session Thoughts

[RyeRyeBread]

So I'm trying some light aquatic therapy as per my rheumatologist's insistance. She claims it could help my POTS & pain, and I agree, but I do not have any hopes for it being beneficial enough to warrant the PEM - nor do i think I'll be able to do it on an ongoing basis without triggeribg PEM.

Well, yesterday was the first day. I wasn't expecting to be able to do much compared to anyone else there... But I made it only 35 minutes before I could "feel it" in my legs and arms; they were getting heavy. I was becoming a little lightheaded (nothing major) as well (prob pots). She asked how I was, told her thay, and she [thankfully] decided to call it a day and tap me out there. She also reiterated what we had discussed ahead of time - that if I feel bad after the session or the day after, that I should cancel the next one (she has me scheduled for 2 days a week) and just wait until the next week.

So immediately after the session, I was feeling a bit heavy and tired, mild-moderate pem symptoms for me. Lasted all day, a little improvement at night but not out of it. Then I woke up this morning, worse. Still haven't had a "big" crash, but I think I would have had I not been heavily resting and not doing much the past few months. I called to cancel my appointment tomorrow.

The reasons I agreed and finally started the aquatic therapy/physical therapy was A.) I'm hoping to be a full-time wheelchair user asap [waiting on eval] and having a PT and taking care of your muscles is good, B.) my rheumatologist insisted and I don't want her to think I'm unwilling (dumb ik), and C.) to prove her wrong when it turns out it makes me worse and really is too much lmao

Obviously, the best case scenario I find I can actually do a bit of aquatic therapy is that it helps me, and I live happily ever after... But now, having done it for 35 minutes, thinking I had done good and wasn't going to crash from the tiny amount of movements she had me doing, and still triggering PEM , I am worried 😅

[If aquatic therapy proves to be too much or my insurance gives out, I'll probably end up switching to regular PT, for either actual therapy or just to have a PT in my arsenal for wheelchair stuff.]

Anyone have any good/bad stories about their physical or aquatic therapy they care to share? Any advice? All welcome 💙

 

[linusbert]

to prove her wrong when it turns out it makes me worse and really is too much lmao

thats definitely not the right reason for us to do anything, but i know the feeling and i ve been there. and now, everytime this thought crosses my mind, i think immediately "f you i am outta here" ... i am the person who has to live with worsening of the symptoms.. not the therapeut / doctor.
(and if your practicioneer isnt understanding... just tell him directly. make him understand the consequences and lack of accountability for his actions)

but at least she was forthcoming and offered you to quit and it seams she kinda respected your situation. this isnt too bad actually.

but why do a full session, start with 5 minutes.

water movement is the most tiresome i can do. even just lying in a tub of water makes me exhausted and pem. even breathing is hard. i dont like water at all. i dont know why people say its easier. every kid knows that movements under water are harder... tried kicking and punching? its true, the weight on your bones is less if you rehab on your bones but i do not understand how this should be any easier than doing movements "on air" - if not working on bones or spine.
i see it for severe obese persons how this can help. but for the rest idk. or if muscles are too week to hold the own weight after broken bone recovery. than this might help to get started again.
but for myself with chronic energy deficiency pressing against the weight of the water with every movement... no thanks.

 

[belize44]

So I'm trying some light aquatic therapy as per my rheumatologist's insistance. She claims it could help my POTS & pain, and I agree, but I do not have any hopes for it being beneficial enough to warrant the PEM - nor do i think I'll be able to do it on an ongoing basis without triggeribg PEM.

Well, yesterday was the first day. I wasn't expecting to be able to do much compared to anyone else there... But I made it only 35 minutes before I could "feel it" in my legs and arms; they were getting heavy. I was becoming a little lightheaded (nothing major) as well (prob pots). She asked how I was, told her thay, and she [thankfully] decided to call it a day and tap me out there. She also reiterated what we had discussed ahead of time - that if I feel bad after the session or the day after, that I should cancel the next one (she has me scheduled for 2 days a week) and just wait until the next week.

So immediately after the session, I was feeling a bit heavy and tired, mild-moderate pem symptoms for me. Lasted all day, a little improvement at night but not out of it. Then I woke up this morning, worse. Still haven't had a "big" crash, but I think I would have had I not been heavily resting and not doing much the past few months. I called to cancel my appointment tomorrow.

The reasons I agreed and finally started the aquatic therapy/physical therapy was A.) I'm hoping to be a full-time wheelchair user asap [waiting on eval] and having a PT and taking care of your muscles is good, B.) my rheumatologist insisted and I don't want her to think I'm unwilling (dumb ik), and C.) to prove her wrong when it turns out it makes me worse and really is too much lmao

Obviously, the best case scenario I find I can actually do a bit of aquatic therapy is that it helps me, and I live happily ever after... But now, having done it for 35 minutes, thinking I had done good and wasn't going to crash from the tiny amount of movements she had me doing, and still triggering PEM , I am worried 😅

[If aquatic therapy proves to be too much or my insurance gives out, I'll probably end up switching to regular PT, for either actual therapy or just to have a PT in my arsenal for wheelchair stuff.]

Anyone have any good/bad stories about their physical or aquatic therapy they care to share? Any advice? All welcome 💙

Oh, yea. I was also advised to try it. So I managed two times in one week, and crashed for two weeks. I never want to feel that sick again! This was before I was diagnosed with dysautonomia, and the pool water was too warm, which I now know is not good. It felt good while I was in the pool, but getting out I felt so very heavy, and very groggy as well. That should have warned me, but I went back, not wanting to accept that still one more therapy was not going to work out. You are definitely not alone there, Rye! It's good that you listened to your body.

 

[Wishful]

It's all a matter of experimentation to figure out what might work for you and what you should avoid, and you have to re-test occasionally. I've had to avoid physical and cognitive exertion past 2 PM for a year or two, to avoid insomnia, but I recently tried to find how far I could walk without triggering, and found that I could do my previous typical 2.5 km walk without problems. I have to experiment with cognitive exertion, and other forms of physical activity, but it's such a relief to not still be chair-bound past 2 PM. I'm definitely glad that I did re-test that.

You couldn't know that aquatic therapy wouldn't help you until you actually tried it. Well, the same is true for running a marathon or free-climbing a cliff, but I think we can agree that aquatic therapy has a better success/risk ratio.

 

[vision blue]

Closer to beginning of disorder, I missed no longer being able to hike or walk a block And somehow got it into my head when I needed since I couldn’t walk on land was to rebuild my stamina in the water And that would fix me! Don’t remember if there was something else that planted the idea in my head. Probably but I just don’t remember

I rwantiee this for weeks and weeks, maybe months maybe months
I searched around and finally found a course that was sponsored (?) by sone arthritis foundation that I could get to. Waited eagerly for it

Really excitedly went got inside pool room and was blown away by how hot it was Got dizzy and sick feeling. Asked why on earth the lept the room trmp (indoor pool) like a sauna and they said because the water was heated- was a therapy pool- and they didnt want the air temp alot colder than water temp or people would get cold Groan

So i went in water against my better judgement evi Was younger then and everyonr was ancient yet seemed to have no problem with the insane heat. I tried the excercises and did not last long. Was juar awful. I do rot remember many details but remember deciding i was put of there and having a really hard time climbing the ladder and getting lut of the pool. Felt so heavy

That got the water rehab idea once and for all after a long time chasing that cure

Oh and the locker room floor was really gross.

 

[L'engle]

One simple kind of 'aquatic therapy' that might be ok is immersing your feet in cold water during hot weather. I've done this from the taps or by walking into a cold lake. Gives a bit of a lift and doesn't require any exercise. It's small but it can feel good.

Possibly floating on water could make one feel good and give the joints a rest. Actually exercising in water would be strenuous for anyone with more than mild ME, I think.

I hope you recover. No one can say you didn't try!

 

[L'engle]

The trouble with public swimming pools is that the chlorine could make a person feel ill in addition to any exertion, plus the work of getting there, changing, taking care not to slip on the tiled floors. I haven't been to a pool in ages, the very thought seeming exhausting.

 

[linusbert]

Closer to beginning of disorder, I missed no longer being able to hike or walk a block And somehow got it into my head when I needed since I couldn’t walk on land was to rebuild my stamina in the water And that would fix me! Don’t remember if there was something else that planted the idea in my head. Probably but I just don’t remember

I rwantiee this for weeks and weeks, maybe months maybe months
I searched around and finally found a course that was sponsored (?) by sone arthritis foundation that I could get to. Waited eagerly for it

Really excitedly went got inside pool room and was blown away by how hot it was Got dizzy and sick feeling. Asked why on earth the lept the room trmp (indoor pool) like a sauna and they said because the water was heated- was a therapy pool- and they didnt want the air temp alot colder than water temp or people would get cold Groan

So i went in water against my better judgement evi Was younger then and everyonr was ancient yet seemed to have no problem with the insane heat. I tried the excercises and did not last long. Was juar awful. I do rot remember many details but remember deciding i was put of there and having a really hard time climbing the ladder and getting lut of the pool. Felt so heavy

That got the water rehab idea once and for all after a long time chasing that cure

Oh and the locker room floor was really gross.

why you guys need a public course to do this?
just go into any public bath and just go into the pool and do as you like.
i guess it was the beginnings when you didnt grasp the circumstances of this disease.

well know i would say, just go into a pool. walk a minute, lay down in the water, chill a bit and go home ^^