flare after physical therapy
 

My daughter started physical therapy about three weeks ago. Today when she was there, she did weight bearing exercise for the first time. Before that, she did leg lifts and other floor type exercises. Today was the first time she used machines. Tonight she is having a flare. Her pain level is much higher than it usually is even at night.

She still doesn't have a definite diagnosis, but I am convinced that she has RSD. She has all the symptoms, as I have discussed here before. The diagnosis that the doctor put on the prescription for PT was "sensory polyneuropathy." He has told me that it is just as likely that she could have RSD, but that the treatment is the same. Since it didn't say RSD, I am afraid that the PT may not be familiar, or may not be treating her in a way that is helpful for RSD. I know that some things can make matters worse, and I have been trying to not let that happen while we are still trying to get a definite answer about what she has.

Can anyone else tell me what their experience has been with physical therapy? Is it normal to have a flare after PT? Is this a sign that she should slow down?

Thanks!

I am sorry....
 

Dear Mom..I am sorry for the PT flare... My orthopedic surgeon did send me for an aggressive PT schedule..everyday for two weeks ~ 3-4 hrs/day.. It was quite painful, tears to my eyes during every session..and it was driven by a protocol used only for RSD patients..in order not to cause further damage..As far as the flare can't really say because I seem to have constant flare..8-10 pain all of the time.. No less.. but still smiling..Talk with the PT personal in order they are following guidelines for RSD patients....

Hugz, Kathy

Thanks Kathy,

She seems to be a little bit better this morning. She didn't sleep much last night.

We are working hard to get her a definite diagnosis, all while trying to make sure that we don't do anything to make matters worse. Since the diagnosis on the prescription for the PT was sensory polyneuropathy, I don't know what differences there might be in treatment. I will ask the PT next time we go so that I can find out what she knows about it.

I see so many people on here that have had this for years, and many didn't get a diagnosis for years. I want to do my best to keep things from going to the point of no return before someone decides what the best treatment is for her.

She has many of the symptoms, but there are things that we have not seen yet, such as feet turning in etc. I really want to keep it from going to that extreme.

She has an appointment at the end of the month with a doctor at University of Michigan. Hopefully he can get a handle on this. For the time being, we are trying to keep her moving because I know that if she doesn't it will get worse.

I really love this forum, there are so many wonderful people and so much helpful information here.

Thank you again,

:hug:

I understand....
 

Mom (for short)...

AND we love having you with us on this forum....this place is my glue...

I know with my aggressive PT..I would not sleep the night before in anticipation as it was just murder pain..Two big berley guys beating on my RSD leg..Forcing it to bend the furthest possible and everyday a bit more and more.. Heck, when I would leave the place eachday, I had complete strangers clapping for me..And due to the extreme pain, I would have trouble recalling how to even exit the place...

Yes, please pursue a definative diagnosis soon and in the mean time..keep her moving thru the pain as that is trully important or the pain could freeze her up...Remember, we do not always exhibit every symptom or sign, just another added bonus of our crazy illness. I am cold turkey RSD without pain meds as I have a bad tummy and nothing stays where I put it... I wish you much luck with getting your answers..At this time, I think discussing the PT intentions would be a good idea and continue to move forward being your daughters advocate..She will do well as long you are looking out for her...bless you both and please lean on us to help you...Weeez family here..

Hugz, Kathy:grouphug:

Kathy,

We are counting the days until we get to the next doctor. Hopefully this will be the one. It has been difficult because of her age. Those doctors who know most about this will not see a pediatric patient. I am hoping that the one we are going to will be familiar with it. She had an EMG and the results were kind of confusing. I am hoping that this doctor can figure out if it means something, or maybe they can dismiss it and go with the RSD diagnosis.

In PT have you normally done weight bearing exercises, leg presses etc? I think that might be what is causing her the most difficulty. She doesn't have any stiffness, thankfully. I am really glad that her pediatrician mentioned RSD as a possibility in the beginning. I just kept it in mind until they did all of the necessary tests to rule out the many other diseases that could have explained her innitial symptoms. I think that good information will be what saves her. It seems that the worst problems come when people go for long periods of time, even years, without a diagnosis and therefore, without proper treatment.

Thanks again,

Tracy:hug:

[QUOTE=MysteryPainMom;684194]My daughter started physical therapy about three weeks ago. Today when she was there, she did weight bearing exercise for the first time. Before that, she did leg lifts and other floor type exercises. Today was the first time she used machines. Tonight she is having a flare. Her pain level is much higher than it usually is even at night.

Acupuncture seems to have caused a flare and possible spreading to the other side of my body for me. From what I have read, depending on how the PT was done and their knowledge of RSD, it certainly could cause a flare. I would call the MD and try to get better clarification on what he/she wants done.

Mom, I use to suffer terribly from PT until I finally got brave enough to tell the therapist when things hurt or that I had done enough. There are plenty of other things that they can use to help RSD without causing severe pain. Therapy can be of great benefit, but you have to take control of what you can do. Good Luck, Lisa

All that I want to add is that "No Pain No Gain" DOES NOT APPLY TO RSD Patients!!!!Been there done that! Fondly-Carol

Hi,
 

Welcome.

I don't believe in agressive PT for RSD. My arms and legs are messed up and there is no way I would lift weights, do therabands, do treadmills and bikes when I first started out with RSD. I still won't today on most. I volenteer out at the Vet's home and when we exercise, I hand out the therabands but I don't do them nor the weights. I always laugh about the vets doing better then me with all of that stuff.

I spent 4 years in PT and my PCP got rid of 3 therapist that he felt was making me do things I shouldn't. I love my husband and wife team I have. They studied in Holland and don't believe in pushing a patient like most PTist.

I had one therapist that said I could get worse before I got better. My PCP callled her up and said no way. He told her I could get worse and not get better.

Some do believe in the agressive PT, as I said I don't. You can keep mobility and keep going without running marathons.

I hope she gets diagnosed soon. Keep looking for that right Dr., he's out there.

Ada

Perfect...
 

Discription, Dubious..Gone postal on our PT friends... I believe that says it perfect..I will never forget my 14 days of shear beat-up from my sessions after my two knee surgerys which we think my RSD began... At the time, silly me had faith in my orthopedic surgeon and went along with his recommendation... let me tell ya..I didn't sleep a wink the whole entire time worrying about the pain it caused with each daily session...

Bless you all..

kathy:hug:

Hmmm...my experience with PT was always that I ended PT at a level 9-10 on the pain scale...usually going in at a 7 or 8 (sometimes worse if I had just come from work). I started in pool therapy, which meant that the weight bearing was gradual and I had several weeks before I moved to using the bike and that was only 3 minutes to start with. It was weeks after that before I started using the treadmill and that started with only 4 minutes at a VERY slow pace.

But after every session I was given electronic stim. Initially they were giving me stim and ICE...very, very bad. After a couple of days I explained to the therapist that the ice made the pain worse so we switched to stim and heat instead. We did 15 minutes of stim and heat, and when I walked out the door I had a pain level of between 4 and 6. It only lasted for an hour or so (sometimes less) before the pain was back up to its normal level of 7 or 8. We also did an ultrasound at the beginning of every non-pool session and it seemed like that helped slightly...but I was never 100% convinced about that.

Essentially...I hated every second of PT but I honestly believe that I would not be where I am right now if I had not gone through it. But then again...the key for me was that the PT was gradual and while the therapist pushed...she never pushed too hard too fast. Even though I am not in PT anymore, I still continue to do ALL the PT exercises that I was given every day (minus the ones that require equiptment...those I do once a week at the park district fitness center). I am still in a lot of pain all the time (7-10)...but I am functioning and have gained a semblance of my life back. I don't think I would be where I am at now without the PT and pushing through the worst pain flares to reach the ultimate goal.

But everyone is different and I think they need to decide what is best for them. That's just my experience with PT.

Its a whole different..
 

PT program we are talking about... My reference is to the aggressive PT vs regular PT for everyday progress... The aggressive program is by far an intense, high demand program which last 3-4 hrs. a day and usually can only last for 14 days..not one day longer... Physcians use it with an RSD protocol in mind as resortation of movement, push and pull service by manual bullys... I can't walk well enough to walk a tread mill or use a bike.. they use both water but mostly land. Apples and oranges in the land of PT.... I tell ya... I, too have been other PT programs for other reasons prior to my RSD and I can tell you.. they not even comparible..

Sorry Catra121 for the confusion...

Have a good night....

Kathy

Thank you everyone for your PT stories. This is what I was looking for. I wanted to know what your experiences were. I have seen a couple of videos about intense PT programs for children with RSD. Of course, they show someone who had a complete remission after it. I attribute that partly to the fact that the videos are from the hospitals that do such treatment. I am going to try to get some info on how successful these types of treatments are.

Like I said in a previous post, we have worked hard to prevent her from having problems with range of motion. Since she has been on Neurontin and Elavil she has been able to function better. Before the Neurontin she could hardly walk even with a cane or crutches. I wonder if these intense therapies are more for regaining range of motion.

Thanks again for all of your information. If there is anything else that might help or anyone else that has a story that they would like to tell me, please continue. I will keep up with this thread.

Thanks again,

Tracy

:grouphug:

A very highly regarded program for children with RSD is located in Waltham, MA - I believe it is called Boston Children's Hospital. The RSDSA newsletter ran an article about it last year, which will still be available on their website at RSDSA.org. There is another really good program for kids with RSD at CHOP, Children's Hospital of Pennsylvania, in Philly. I've also heard of parent's using the Mayo clinic, which I think is in Ohio.

Good luck to you and your child. I wish you the very best. XOXOX Sandy