I could use some suggestions please
 

Hello everyone :)

I could use some suggestions about physical therapy.

The background info is that I have been through PT several times. The things we have tried are-
heat, cold, trigger point release, ultrasound, muscle strengthening, flexibility, massage, TENS unit, and probably some other stuff I am forgetting.

My problem with PT and the reason I quit after a few sessions is that the physical therapists always want to push beyond my limits, and do things beyond what the doc prescribes -- and I believe this is due to the fact that nearly all doctors (including mine) always use that check box on the PT form that says "evaluate and treat as necessary".

Well that check box seems to give the therapist freedom to do things as they see fit.

Now for most people needing PT I can see how this would be a good thing, since the physical therapist is usually better at knowing exactly how to rehab a person because that is their job and they have experience.

My problem seems to be that so far every PT I have seen seems to have absolutely no knowledge or experience with connective tissue diseases and hyperflexibility, and very little knowledge/experience about fibro and myofascial pain.

So now for the part I need suggestions about....

How should I discuss this with my doctor? I want to request more PT, but I somehow want to make it clear that I do not want the 'examine and treat as necessary' box to be checked on the form.

In addition there are only certain types of PT that I feel are helpful to me so I could use some suggestions on how to say to the doc "I want this, this and this, but not that that and that".

My doctor and I have a great relationship and I am usually not at all concerned about how to communicate with her, but this PT issue is a big one for me, so I could use some suggestions because I want to make sure that I am clear about my needs without sounding like a demanding witch. :)

Thanks in advance,
Liz

Reply re Fibro and PT
 

Hi Wittesea,
I will share with you my experiences. I was on the other board btw.

I have multiple disorders including fibromyalgia, and have gone through therapy for them. I have worked for a PT hospital in the past and have seen what goes on with fibro patients going through therapy. The best thing that ever happened to me was when my rheumatologist suggested I go to a certified massage therapist that she recommended, and go on a regular basis. It took time to note a difference, but I had to face up to the fact that the massage therapy twice a month using the trigger point therapy was doing me more good at that time than the physical therapy. I could exercise all I wanted at home and that helped, but my money was better spent on the massages. Yes, that was out of pocket. Then I realized that the hypnomassages were even better with the trigger point therapy because I was more relaxed and the therapy worked better. I was able to get more benefit out of it, and eventually needed to go to massages less a month. That didn't preclude the need to walk and exercise at home. I used bands, and other stretch items that are used in therapy.

I just went through physical therapy for my shoulder for tears that were not operated on (a whole other story, I don't have full use of my arm), and we purchased the therapy equipment to use at home because it is of good benefit for my fibromyalgia and my other problems. A lot cheaper than physical therapy 12 months a year.

I understand what you mean about the therapists pushing, etc. In fact, the rheumatologist's partner pushed and made me do exercises that injured my shoulder more per the orthopedic. You have to set boundaries for your body. If nothing else, check out a pool therapy class for fibromyalgia patients in your area.

Liz,
I have problems at all 3 levels in my spine, S1 nerve damage, lupus and FM.
I have done much of the thearpy like you and even aqua thearpy.
It seems that what helps one area flares up something else, just a no way win situation.
I believe if it were me I would be just be open and honest with my dr, especially since you have a good open relationship. No one knows your body better then you and since you have done much of the thearpies you do know what helps you best.
I've been wanting to do some more myself but like you I don't want to do what harms me and makes my pain worse but know I have to do something to help myself or just wither up and die..
Good luck and let us know what happens.
LindaM(suede)

Thanks for the input and suggestions Linda and Lynda :)

I'm sorry to hear that you both had difficulties with PT causing flares as well, but as with any problem it's always helpful to know that I'm not the only one who has dealt with it.

Lynda, thank you for sharing about how much massage helped you.

Massage is one of the things I want to do most in PT, but the last several times massage was ordered it was like an after thought (the PT would do 2 minute massage at the end of a 1 hour PT session).

For now, I want the doc to order massage, trigger point release, and ultrasound. Those are the only things that ever helped without hurting more or causing lasting injury. As those 3 things start to help and loosen up my muscles and myofascia, then I would consider trying other things.

Thank you both for helping :)

Liz

Physical therapists may be the experts, but too many of them work by the "no pain, no gain" formula, where more pain now equals less pain tomorrow. Unfortunately, as we all know, fibro often sends that formula down the tubes.

Only you know what your threshold is, and you need a way to make that clear to the therapist, so that when he/she insists you do one more minute of exercise, and you say you can't, then they understand that you're not just being wimpy. You know what those last few sit-ups will mean for you tomorrow, and that it won't make anything "better".

PT
 

Hi, Wittessea,
I have gone to PT forever, also. The massage, ultrasound, and tems helps, and so does moderate exercise. My PT does know some about FM.
I have aslo found acupuncture helpful. You also have to find and acupuncturist who knows something about FM.
There are so many of them in the Boston area (I live on the north shore) that you shouldn't have trouble finding them. Blue Cross will contribute some towards payment.:)
coyote

I hope no one minds. I found this thread very helpful.

I've been working with a physical therapist, for neck and shoulder pains,
trying to get past a set of tense muscles that are causing vertigo,
and other issues. But we are thinking we may be dealing with inner ear
or balance disorders so I saw physical therapy and had to read.

Have any of you ever had stimuli.

Or something like that.

Donna

I do massage too, but of course it isn't covered by insurance. Physical therapists have pushed me over the limit as well.

My masseuse is wonderful and I try to go twice a month. I wish I could afford to go every week. I was told that the clinic here, you can buy a package making each session with a massage therapist cheaper, but I love my current masseuse, she's the best.

Wittesea, just tell your doc what you've told us here. I've been told aqua therapy is one of the best as well.

My RT offered to write me a prescription for aqua-therapy twice a week. He said that's the only kind of physical therapy he would recommend for someone with serious fibro. The only problem with that is that I can't stand being underwater for more than a minute. The pressure from the water presses in on my abdomen, where it's very tender, and becomes unbearable very quickly. Anyone else ever experience that?

Yes, I've had the electric stim, and it can be helpful. Just don't get up off the pad while it's running.
Massage is great. I've also gotten some benefit from acupuncture. My rheumy is actually recommending it now.
I think the only exercise we fibros are supposed to do are walking and being in the water.