Exercise Success

[laurab2818]

Just wanted to update you guys on how my exercise program is going.  I have been meeting with a personal trainer now for two months, twice a week for about 45 minutes.  I have had NO major setbacks so far!!!  She happens to also be a nurse, so I felt less anxious about working with her.  She was unfamiliar with Dysautonomia, POTS, but researched it so that she would understand my condition(s). Needless to say, she was nervous about working with me and saw me (as I did) as fragile.  But we started on a VERY gentle program and slowly increased, respecting my limits and doing shorter sessions when needed.

I am now up to doing recumbent bike, leg and arm strengthening,balance, weights for arms, sit ups, stretching, and am starting to do a little weight training on my legs.  When I started the bike, even on its lowest speed, felt quite difficult.   I drink lots of fluids before, during, and after our session.  I have noticed significant improvements in strength, balance, and endurance.  I am actually enjoying myself!  I can't believe it.  I did not think I would be able to do this and have tried to exercise for many years, only to get very sick.  It helps so much to have someone there, guiding and encouraging me.  And I am noticing that I feel better about my body, which is nice too. :)  And of course exercise is good for mood and dealing with stress, which I have plenty of.

I should mention that one reason I decided to try an exercise program was that I finally have my blood pressure and heart rate under control.  Clonidine, Fludrocortisone, and salt supplements seem to have made the most difference. I am on other meds too, but these are the ones that improved my BP and HR.

I won't have the $ to work with the trainer as often next year but will see her some and continue exercising on my own at the gym and at home.  My health insurance, Medicare Advantage Blue Cross, allows $650 per year for gym membership.  If you haven't already, check out your plan to see if they offer anything.

Hope this is helpful.  I'd be interested in what success other people have had with exercising.

Isn't it nice to hear some GOOD NEWS?!


Laura

[DysautonomiaPrison]

I have sent you a message concerning the study and article.

Regards, Jane

[evo123]

Do you have any details on the outcomes of this study?  It seems there are mixed feelings from the people I have spoken to, would be great to read some figures on this.

[mtgardner]

Thanks for sharing the information and I think congratulations are in order as you have accomplished a lot!  I think it wonderful that your trainer worked wth you so well.

I just bought a recumbant bike.  I live remotely so ongoing gym membership doesn't work for me but I may at some point try physical therapy consult.  I would like some more ideas on exercises and how to work around certain areas as now with my arm weakness I can strain certain muscles too easily.  I on purpose got a recumbant bike that does not have the handles in front for an upper body workout because for me that would do more harm then good.  I do several smaller sessions during the day and it seems to work so far.  I added in some of  the leg strenthening exercises as well.

Thanks again for letting us all know how it is going!  Marie

[DysautonomiaPrison]

You can enroll in the program by using the contact information below. To qualify you must be off all medications you take to control POTS.

Dr. Levine's Exercise Protocol for POTS
To contact Dr. Levine and his team regarding the protocol:

RE: POTS Treatment
The Institute for Exercise and Environmental Medicine
7232 Greenville Avenue, Suite 435
Dallas, TX 75231
Ph: 214-345-4607
Fax: [phone]
New email:
THR-IEEM-***@****

You might want to visit a blog -  http://www.potsrecovery.com/

He has published an article on his findings.

Jane

[evo123]

Hi Laura x

It is great to hear how well you are doing and I am happy for you that the exercise is helping you.  It is lovely to hear some good news within our community x

It is recommended for us guys to try and exercise if and when we are able, for some it aids recovery.  Strengthening of the leg muscles is especially beneficial.  It is also extremely important for us guys to avoid becoming deconditioned as this only makes things worse.  

There is a doctor in Texas, I think his name is Dr. Levine, that has been conducting research into exercise and recovery from POTS.  I cannot seem to find any results for this though.  If anyone has any knowledge of this it would be interesting to see how it has went.

[pepito6]

That is great news,!
   I just went to my cardiologist ,and he suggested that I also start exercising some on the bike,.  I tried it for about a week, but the most that I could do was 5 mins.
  there was a day that at 2 mins I felt as if I was going to pass out.  I need to continue and see what happens even if it is onlt a  few mins at a time.
  I have been going to a pool and that has helped me a lot.
Keep it up!!! Let us know of your progress
Maritza