Is Being Upright A Help?

[joy]

I do physical and occupational therapy for my reflex neurovascular dystrophy.

today I went into the hospital for my first appointment in awhile, and once there Iw as forced to do way more than I was comfortable with. and was told that the more I am up and not lying down things SHOULD improve in the long run. though it might be the VERY long run.

I definitely agree that by lying down i'll just continue to degenerate physically and my body will adjust less and less to being vertical. but its SO HARD I just feel like collapsing. after being up for so long my mom and a friend at the hospital had to all but carry me to my car and I kept collapsing. I just want things to improve even a little, and I have no clue how I'm going to up my home therapy and attend school more (right now I go for half days and literally sleep in every class on the floor. thank goodness for tiny schools)

[Jan]

The Mayo clinic said the more I push myself the more my body will relearn how to be upright.

Still, if a person over does it, you can pay for it the next day.

The trick I think is to push your self, but not too far.

On the other hand, I have a friend with POTS who really pushed hard by going to the gym everyday with a personal trainer, even though he had to get a ride there, and then crawl down the hall to get to his trainer. He was about 98% recovered within a year.

[bkweavers]

My daughter was told by her doctor that she also will need to push herself if she's going to get better. Her main symptom has always been dizziness and six months after getting sick, she got worse and was unable to sit up, stand, or walk on her own. It's been 2 and 1/2 yrs. now. We are working on making her sit up every day for a small amount of time, even though it always makes her dizzy. We will be slowly increasing the angle and the amount of time but it's slow going.

She also goes to physical therpay and the therapist has her do a lot of exercises that are very uncomfortable for her. I'm glad to see it though because she needs to be pushed a little. A year ago, her body would not have been able to handle this. The therapist would try different exercises only to have Liz have extreme dizziness for days after. The therapist pulled back and decreased the exercises and only until recently, has added new ones. So, I guess the bottom line is that your body will let you know when you've gone too far and you have to communicate that to the therapists. It is definitely a trial and error type thing though to see how far you can go!

Brenda

[erikainorlando]

I have heard push push push.....but I suppose, my question is that if the nerves are damaged...then how can one improve until they ( the nerves) start to heal? See I think it may be true for some etiologies of POTS but not all.

After my Guillain Barre...some yahoo told me if I kept trying to move my toes they would eventually work...it has been 9 years and tons of therapy but they are still paralyzed....my neurolgist had said that if the nerve is damaged...there isn't much you can do but to try to stay conditioned..but the nerve has to heal..is this the same for POTS?

I do believe that the worst thing we can do is sit all the time because it will make us worse...but I don't think forcing exercise or standing will always cure us...but I am cretainly not the POTS guru..(working on it tho )

Erika

[joy]

all this is super encouraging to me.

it made sense when they told me that, but i definitely wanted all your input!

[flop]

During my recent hospital stay I was having lots of fainting episodes. The nurses were afraid that I would hurt myself so made me stay in bed and often be pushed to the bathroom in a chair. When my cardiologist came to see me he was mad that I had been on bedrest and confirmed that bedrest is really bad for POTS. He said I must sit out in a chair as much as possible and stand / walk regularly (obviously this is relevant to someone like me who was walking about until a week earlier).

When I was first diagnosed he told me that even when I am ill with the flu I must force myself to be upright with my legs down for some time every day. Otherwise he thinks that my BP receptors will re-callibrate to the BP needed when lying flat and that I would find it much harder to be upright when I next got up. If your BP is set to a lying flat level then you need to gradually re-educate your body to tolerate being upright. For some this means gradually increasing the angle of tilt on their bed, or the angle at which they can be propped up in bed. If one can sit in a chair then the next step is to stand up for increasing periods of time.

Everything to do with re-conditioning our bodies to be upright takes time and needs to be repeated many many times to help our bodies to adjust. Most people find that they can only manage this sort of rehab with the help of water, salt, compression and medications.

Good luck with your physio ond occupational therapy - it will be worth the effort!

Flop

[joy]

^Good way of wording it on your doc's part!

I'm doing a bit better already I think.

When I was in they wouldn't let me get up on my own either, and that sure didn't help my state!

to them a fall risk bracelet=made of glass lol.

and PT and OT is SO worth it, I've done over a month of full day therapy and lots of several time a week to once a week for months before and after