Everyone Says Don't Loose Muscle Tone

[hippychic258]

I have heard over and over how important it is not to loose muscle tone, so my question is has anyone gotten better even though they lost muscle tone? Do you have to get your muscle tone back first in order to get better?

[firewatcher]

In my case, they tended to occur simultaneously. The meds helped enough for me to get through the crash, and then I improved as my tone improved. My periods of "remission" occurred either at the same time as or because of improved physical tone.

[hippychic258]

Well then I have a long way to go you can imagine how my legs look after being in bed for almost 6 months

[roxie]

I think they tend to go together.

Have you ever thought of first trying some exercises in bed? Like just squeezing the muscle once & the work up to two & so on.

Have you ever seen this blog post:

http://potsgrrl.blogspot.com/2012/01/exercise-for-potsies.html?m=1

[firewatcher]

If you can afford a physical therapist or if insurance will cover it, I'd suggest you get one. It may save you some serious frustration and give you positive, genuine support.

[yogini]

I think there is a great chance you can improve from being bedbound, especially since it sounds like you arent on any treatments. Odds are something will work. There is really no way to know until you try.

Your situation seems pretty complicated and it sounds like you would benefit from peronalized medical advice - can you get to a POTS specialist or a center like Mayo? They can best assess your situation and figure out next steps. we can only tell you what has worked for each of us, but since we are all so different that is only so helpful.

[Relax86]

Gross generally there is an equation for rehab after long periods of bed rest. For every full day in bed it can take a week to rebuild. We are also fighting our bodies not wanting to regulate HR, BP, body temp, vision, digestion, etc ....so it's a challenge. But it can be done. I work in outpatient orthopedics and worked in a long term care facility as well and I have seen people recover from deconditioning (not specific to POTS although we are starting to see POTS folks in our Physical Therapy clinics) so it can be done. I was scared going it alone and had only been completely bedridden for 4 days, then stayed in bed for about a week more until I realized I probably should move. It was the challenging of my autonomic nervous system that seemed to help it rediscover how it was supposed to work. I did get much better - it's been almost 9 months since the start of this last flare.

Having had a cardiologist clear me of any heart condition and a neuro clear me on that end I realized that I would probably be safe to try and move. It's scary and frustrating but it can be done. I think at best we are all just looking for some level of improvement realistically. I want every day to have my old life back but it doesn't seem like that's my option. I am glad I pushed myself. For me moving was the key. Good luck

[bkweavers]

I know we've been told over and over again to keep our daughter moving no matter how small the movement. At one point, her only exercise was doing leg and arm exercises while lying on the floor. We also took her to a pool where she would lay back on two noodles and just kick her legs around. After awhile, she was able to do the exercises with small weights. She then graduated to doing more core exercises along with the other ones. I would say no matter how small the movement for you, it would benefit you in the long run. It certainly seemed to help my daughter's recovery.

Brenda