Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

It\’s a Start

Written by Katie. Posted in Physical Therapy

When I was on the diagnosis path and was beginning to think I had EDS and POTS, I would look on the Internet for hours at a time to try and find what people were doing to manage both disorders.  So I have decided to document the process that I am going through to figure out what works for my own records and for anyone else out there who may also be looking for more information on the management of either disorder.

I have come up with a beginning schedule of ways to try and help manage my POTS and EDS until I can get more treatments going such as physical therapy, prolotherapy, chiro/massage, water therapy…Of course this schedule does not take into account day-to-day happenings such as appointments, errands, housework, etc…

MORNING:

  • For breakfast I drink “Dr. Joe’s Magic Potion.”  The recipe for this drink was given to me by my physiatrist/spine doctor.  It’s main purpose is to bring down inflammation in the body.  I really feel like I have felt some relief as far as pain goes since I have been drinking this concoction.  It consists of: 1 large leaf of Kale, 5 big chunks of raw pineapple, half of a banana, 1 tablespoon of lemon juice, one tablespoon of fish oil, 1 tablespoon of ginger root (or as much as you can handle), 1 cup of water, and I add 1 cup of Odwalla juice (but you can also add the following juice brands:  Bolthouse or Naked). Then I blend it all up for a smoothy.  It tastes MUCH better than it looks.  I drink half and then with the other half, I add my first dose of sea salt and drink it fast!
  • I take my Beta Blocker (Propranolol), 600 mg of Co Q 10, and 2 multi vitamins with the smoothy.
  • SALT, WATER and COMPRESSION STOCKINGS.

MID-MORNING

  • I do my exercises with my heart rate monitor on.  I blare music~Most recently Michael Jackson (Don’t judge me~ Man In The Mirror, PYT, and Dirty Diana get me going every time 🙂 I pretend each time that I exercise that I am preparing for the Olympics. 
  • These exercises include:
    • Toe rises (10 at a time)   (to train blood vessels by helping pump venous blood back to my heart)
    • Clams and Pelvic Bridges for stabilization
    • Foam roller balancing exercises for core stabilization
    • Squats (to train blood vessels by bringing my heart closer to the floor and therefore, reducing the impact of gravity)
    • Stomach crunches
    • Back strengthening exercises lying down
    • Resistance band exercises for ankles and hamstrings
    • Leg crossing exercises (right leg in front of left leg, and squeeze legs for 45 seconds at a time) to keep more blood in my chest area
    • Self-Tilts (back against the wall with legs out 1-1.5 feet.  Trains blood vessels for better blood return to my heart)
  • If I do an exercise standing up, I follow it with a few exercises lying down.
  • I do very frequent heart rate checks!
  • After doing my exercises I use my cervical traction unit to help with neck/head pain and spasms.
  • More WATER, SALT, and COMPRESSION STOCKINGS.

LUNCH:

  • I take my blood pressure and heart rate lying down and then standing up and record it for my doctor (It needs to be done the same time everyday)
  • I eat lunch (salty!) and drink a big glass of orange Gatorade with my lunch.  In the Gatorade, I add 5,000 IU’s of Vitamin D Drops, and a teaspoon of super potent Vitamin C Biofizz. 
  • More WATER, SALT, and COMPRESSION STOCKINGS.

AFTERNOON:

  • I am usually beat by this time of day, so I use the afternoons for things like researching, blogging, emailing, and making phone calls.
  • I often use my TENS unit, Muscle Spasm Unit, Ice, and/or my massage pillow while I do these things.
  • More WATER, SALT, COMPRESSION STOCKINGS.

DINNER:

  • Dinner with added sea salt.
  • If I am feeling okay, I try and do some more exercises after dinner that help re-train the blood vessels to return blood to my heart (more self tilts, toe rises, squats, and leg cross squeezes).
  • After dinner I have been reading books about other people who have overcome their chronic illnesses for my own mental treatment.
  • WATER, SALT, COMPRESSION STOCKINGS.

NIGHT:

  • I still need to work on elevating my head while I sleep to help retain fluid in my body overnight.
  • Hopefully by now I will have had my 3 liters of liquid and my 4 grams of salt.  But I am still wearing cute COMPRESSION STOCKINGS.
  • Before bed I take medication to help regulate my Autonomic Nervous System and to help me sleep (sleep problems are a major symptom of Dysautonomia) and I take Singulair and Advair for my asthma and allergies.  I take an Ibuprofen 800 if I am in pain.    

I have been salting my foods with pure sea salt.  As for high sodium foods to eat, I was given a list by the doctor.  The list includes:

  • Soy Sauce
  • Tomato sauce
  • Canned Green Beans
  • Canned Jalapeno Peppers
  • Baked Beans with Pork
  • Ramen Noodles
  • Tomato Soup
  • Chicken Noodle Soup
  • Microwave Butter Popcorn
  • Tuna in Water
  • Green Olives
  • Dill Pickles
  • Tomato Juice
  • V8
  • Gatorade

Any other suggestions would be appreciated!

Obviously this is just a beginning plan and it will most likely need to be tweaked as I continue on this journey to get better.  To end this pretty boring post, I wanted to add the song that goes through my head every time I am looking for salty foods to eat (click on the link below).  I think you are probably starting to get the idea that I am a true Parrothead at heart!.

Salt! Salt! Salt!

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