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  1. #1
    Join Date
    Mar. 13, 2007
    Location
    Northern Virginia, 45 minutes east of paradise - 2 hrs during rush hour
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    2,380

    Default When you are worse off than you thought..

    I have porphyria which causes nerve damage and a lot of my symptoms are similar to MS and fibromyalgia. I thought I was doing pretty well until I decided to do pilates to help my riding.
    So. I bought a 5 session package of one-on-one sessions so I would learn to do it right. First session was fine. Second session... not so much. First set of tail bone curls resulted in all the muscles of my back, abdomen and shoulders seizing up. I could not breath. The pain was awful. So we worked on trying to stretch and relax my back, shoulders, neck and chest. Poor instructor had never seen anything like it.
    So, I decide to put off the pilates until I can do some PT to address my stiffness. Go to Dr. Dr sends me to PT to address upper body stiffness.
    PT therapist does an evaluation. Warms my muscles up with some heat. Then tries to do some exercises. Same result. Total seizure and pain. PT therapist says. I can't help you. I"m an orthopedic PT therapist and i cannot deal with your issues.

    So the punchline is: My PT therapist fired me.

    How messed up is that?

    The good news is...I can only get better :-)
    "The mighty oak is a nut who stood its ground"

    "...you'll never win Olympic gold by shaking a carrot stick at a warmblood..." see u at x



  2. #2
    Join Date
    Mar. 21, 2008
    Location
    Corvallis, OR
    Posts
    182

    Default

    Well, clearly you need a new PT. There are some who deal mostly with orthopedic things and those that deal with more neurological or pathological conditions. I would call around and see if you can find one.

    I've had the same problem before, but I'm lucky that my PT does a lot of everything and just happens to be great with brain injuries and spine problems. And I found her at student health services of all places...go figure.

    I agree - it's messed up that your PT just flat refused to work with you, but at least they were honest and not over-confident, just stringing you along. Hang in there and keep looking. The right one will come along. You're doing the right thing by being proactive about your heath. Keep it up and keep your spirits up. We're all rooting for you.
    "The FEI is often in error, but never in doubt." - Jim Wofford

    "You do not find the happy life. You make it." - Camilla Eyring Kimball



  3. #3
    Join Date
    Dec. 4, 2002
    Location
    Dungeon of the Ivory Tower
    Posts
    20,394

    Default

    I agree - get a PT better versed in your issues. Also - how qualified was your Pilates person? Because they should be able to modify each and every exercise for your needs. I take mat classes with a group of women with a wide variety of abilities and issues and I don't think I've had a class where something wasn't modified for someone.

    Here's hoping it does getter better for you!
    www.specialhorses.org
    a 501(c)3 organization helping 501(c)3 equine rescues




  4. #4
    Join Date
    Dec. 11, 2007
    Posts
    642

    Default

    try an osteopath Dr. to adjust and keep your muscles looser. I would be a crippled mess of tight muscle contortion without her...



  5. #5
    Join Date
    Mar. 13, 2007
    Location
    Northern Virginia, 45 minutes east of paradise - 2 hrs during rush hour
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    Default

    Quote Originally Posted by DressageGeek "Ribbon Ho" View Post
    Also - how qualified was your Pilates person? Because they should be able to modify each and every exercise for your needs.
    She was very good. She pretty much had to modify everything I have absolutely no complaints about how she handled the situation.
    The studio has an instructor who is a Physical Therapist during the week is supposed to be excellent with neuro conditions. So once I'm sorted out, this particular pilates studio should be a great fit. I have a call in to find out what PT clinic she works for.
    "The mighty oak is a nut who stood its ground"

    "...you'll never win Olympic gold by shaking a carrot stick at a warmblood..." see u at x



  6. #6
    Join Date
    May. 2, 2002
    Posts
    1,312

    Default

    I have been to many PT's. Some just aren't a good fit. The best form of PT I had was pool therapy. Once I had it in a pool that was like a treadmill. They set the water at a certain speed and you had to swim. This was not helpful and caused more harm than good. My most recent stint had a small round pool with extremely warm water. The therapist was in the pool with me. I would hold the edge of the pool and he would help me stretch, Eventually, I used little floaty things to do exercises. I loved this type of pool therapy. I felt so free and light. Unfortunately, the chlorine killed my skin b/c I am extremely sensitive, the major humidity was horrible for my asthma and I developed bronchitis, and the facility has closed Despite my skin and breathing, I was considering going back!
    Beth



  7. #7
    Join Date
    Apr. 15, 2008
    Location
    Orlean, Va
    Posts
    2,058

    Default

    hi Stacie,
    sending you a p.m. Sorry, I have been travelling with no internet.
    Hugs,
    Robin



  8. #8
    Join Date
    Oct. 14, 2010
    Posts
    2,487

    Default

    Give your former PT some credit for being forthright. All PTs are not created equal. Where I go, the head torturer is awesome; his underlings - not so much. Unfortunately it took me 4 weeks & a serious setback to figure this out.



  9. #9
    Join Date
    Mar. 13, 2007
    Location
    Northern Virginia, 45 minutes east of paradise - 2 hrs during rush hour
    Posts
    2,380

    Default

    Quote Originally Posted by red mares View Post
    Give your former PT some credit for being forthright. All PTs are not created equal. Where I go, the head torturer is awesome; his underlings - not so much. Unfortunately it took me 4 weeks & a serious setback to figure this out.
    That sucks.

    So on Mon I have an appt with a PT who has seen the eval from the other PT and feels confident he can deal with it.
    I also have an appt with a physiatrist that my GP wants me to see. But that is not until the middle of February. Not sure what he is supposed to do for me, but it may have amusement value. Going to any doctor and saying you have porphyria has amusement value.
    "The mighty oak is a nut who stood its ground"

    "...you'll never win Olympic gold by shaking a carrot stick at a warmblood..." see u at x



  10. #10
    Join Date
    Jun. 14, 2006
    Location
    VA
    Posts
    11,372

    Default

    I have a friend who is a neuroradiologist. He has always told me "You don't want to be an interesting case."

    Unfortunately, I am now an interesting case and I have to say that while the amusement/curiosity factor is there for many, I don't think that just anyone is a good fit. Just like your situation.

    I hope you do find a good fit soon!
    A good horseman doesn't have to tell anyone...the horse already knows.

    Might be a reason, never an excuse...



  11. #11
    Join Date
    Mar. 13, 2007
    Location
    Northern Virginia, 45 minutes east of paradise - 2 hrs during rush hour
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    Default

    Quote Originally Posted by BuddyRoo View Post
    I have a friend who is a neuroradiologist. He has always told me "You don't want to be an interesting case."

    Unfortunately, I am now an interesting case and I have to say that while the amusement/curiosity factor is there for many, I don't think that just anyone is a good fit. Just like your situation.

    I hope you do find a good fit soon!
    Oh yeah. I feel your pain.
    You find out just how interested a doctor is in getting out of their comfort zone. Sometimes I have no idea what we are paying them for. I had an endocrine specialist tell me that he looked in his books about porphyria and then he talked like he was an expert on it. Of course the book is 30 years old, out of date and he hasn't read any of the latest research papers on it. I have, though I can't even have a reasonable conversation with a physician who can't be bothered to keep up to date.
    "The mighty oak is a nut who stood its ground"

    "...you'll never win Olympic gold by shaking a carrot stick at a warmblood..." see u at x



  12. #12
    Join Date
    Jan. 8, 2007
    Posts
    500

    Default

    I have a different condition than you (chronic Lyme) and although I know they are not similar, I have had similar results with physical therapists. My Lyme has settled in my back and I have tried the route of pt 5 different times b-cuz I used to work for a PT office many years ago and saw the amazing results.

    But for me, PT and I do not work. In fact, they cause more damage than they help. I end up bedridden and on serious pain meds for days after each session. And when I would repeat the exercises at home, the after effects were horrific.

    Have you looked into the "Alexander Method"? I was taught this many years ago and it works on a different theory than PT. If you live close to a city, there should be someone familiar to it. For me, I still try to do the exercises I was taught more than 20 years ago. There is no horrible stretching beyond what your body can handle, it is under a whole different theory.

    Just a suggestion as you might want to google it and look into it. Good luck and I hope you get to feeling better.
    Keep in mind...normal is just a dryer setting.~anonymous



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