When you are worse off than you thought..

[Stacie]

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

[Vegas_Sky]

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.

[DressageGeek_Ribbon]

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!

[Equsrider]

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

[Stacie]

[QUOTE=DressageGeek “Ribbon Ho”;5358733]
Also - how qualified was your Pilates person? Because they should be able to modify each and every exercise for your needs. [/QUOTE]

She was very good. She pretty much had to modify everything :lol: 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.

[Invite]

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!

[whicker]

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

[red_mares]

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.

[Stacie]

[QUOTE=red mares;5373629]
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.[/QUOTE]

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.

[BuddyRoo]

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!

[Stacie]

[QUOTE=BuddyRoo;5375585]
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![/QUOTE]

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 :lol: I can’t even have a reasonable conversation with a physician who can’t be bothered to keep up to date.

[Obi]

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.