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.

regarding PT....
 

I had 3 mos of PT last fall/winter.

And I learned quite a bit.

1) They do not like giving massages. That is not what they are trained for,
and actually I was told, they resent it.

2) I had IFc and ultrasound alot....this was wonderful. Very healing.

3) there are "gung ho" types... of therapist. I had a gentle one and she
was really good. Allowed me to heal without pushing. (AGE is a factor for me
so we heal more slowly).

4) You can buy a wonderful massager...some of us on PN bought this last spring. I use it for muscle relaxation...since I have "hot spots" like trigger points sometimes. It really releases them quickly. And it doesn't cost an arm or a leg, and you have it at home for whenever you need it.
It is called a Magnassger. My mail carrier gets treatments at his Chiro with this and was amazed when he delivered it to me!
http://www.magnassager.com/

MelodyL on PN here also uses it for her husband.

5) People who are hypermobile, have more problems than people who are more tightly tendoned (like me)... each have unique problems. I have problems stretching, but the hypermobile people over extend and damage tissue that way. My therapist said, hypermobile patients have more back issues as they age (and I believe that, since my back has always been a low problem area inspite of horrible arthritic changes in X-rays for me).

The expectations for my healing were underestimated. I am finally better now, a YEAR later, but they were pushing me to a 6mo recovery schedule. So in the end we decided I would be released, and work on my own. I was getting alot of pain in my knees from their extreme stretching...so by doing it myself, I had to heal my knees up from the PT...not a nice way to go.

Each person is different. I would also make sure that nutritional status is taken care of. Vit C and copper are crucial for collagen/tendon support.
Also SAMe is a great help for arthritis/joint issues.

I don't like water therapy either...I almost drowned when I was little, and I have always had a water phobia. I've had some desensitization for it..so I can deal with it some...but not a full cure. Many people like the water therapy however, and it is easier on the joints.

Don't underestimate food intolerances/pain/arthritis issues. I have been gluten free (no wheat) for 2 yrs now but was surprised to find out that citrus, esp
orange juice really was adding to my woes. I cut out all orange products in June and my knees just quit hurting within a month. I believe that many chronic ills, or autoimmune issues can be traced to reactions to food.
Visit our Gluten forum, and The Gluten File for a taste of how complex it can get...and how simple a solution can be found. But it is not simple to change the lifestyle appropriately, since we all have "comfort foods"... and it is very very hard to give those up.

There is a very good book by a physican who specializes is obesity, but she also has good information on elimination diets for health:
www.obesitysanswer.com
Her book goes into great detail, and that is where I suspected the orange juice (which I was really addicted to).

Fibro patients have been found to have low B12 in the spinal cord fluid.
So attention to B12 (see our vitamin forum) may help some of you.
http://www.immunesupport.com/healthw...8/98sum003.cfm

I was one of those women who had that general diagnosis of maybe fibro, many years ago. At that time, it was not as commonly recognized as today. When I started supplements in earnest over 10 yrs ago, most of my muscle issues resolved. I use high potassium containing foods,
good magnesium sources, 500mg Vit c, carnitine when exercising alot, and B12 and methylfolate now. (EFAs are now in foods, but then I used fish oil and flax oil as well). I get my EFAs from food now. When I did this, the suspected fibro
diagnosis, became history.

PT is a mixed experience...it all depends on who you get as a therapist.
That is why you see so many posts on it.

Hi Wittesea :)

Could you not ask your doc if she/he knows of any PT therapists that are familiar with fibro, myofascial pain, and connective tissue diseases and hyperflexibility?

Maybe an experienced sports PT therapist?

Hi Witts!
 

When I went to therapy it was to try to strengthen my lower back. I had a great therapist and afterwards a 30 minute massage by their massage therapist. She said that she had patients that wanted her to do pressure point massage on them so hard she refused. She told me this after I had told her how rough the previous massage therapist I had had was on me and how I would get headaches after I left.

I would have to warm up on the bicycle for 15 minutes before doing anything and my legs would just kill me. I thought it might be just from not doing that in a very long while and I tried to give it a chance. A doctor told me long ago it was something I needed to stop because of my knees but I love riding bikes so I thought I would try it and see how it went. It made my legs hurt. So it is something I cannot do. It also played on my lower back. But if my therapist noticed it in my face she would stop me no matter how hard I wanted to try to do it. Now I know my limits and I won't push myself.

We have to learn to say when enough is enough to these therapist. Some, like mine will see it in your face and stop. Others could care less, because as was said, the no pain, no gain thing is embedded in their heads. They don't have experience enough to know that they are hurting our other problems while they think we are weak in the one they are trying to take care of.

So by all means be straight with your Dr. Ask her to help you out on this. If she is a good Dr. she will.

By the way I quit therapy for a while and tried it at home. I just have not kept up with it so I am considering going back. Some days I just really don't feel up to it.

I am glad to read the differences on here. Thanks!

Sheryl

I should have updated this thread.... but I forgot I posted it :rolleyes:

Anyway, I did talk to my doctor. I had an appointment with her on her 'early' day (when she works until lunch and then goes home) and I was her last patient for her workday....

We talked about me needing PT and what I needed, and she agreed with what I needed but she wasn't sure where to send me...

She said she would make some phone calls to try to find a PT place and person that offered what I needed (and someone who knew something about CTD's) and get back to me.

She called me at home almost 2 hours later - she was still in her office and had spent almost the full 2 hours calling area PT places (so much for her early day).... not a single PT with in 30 minutes of here had ever heard CTD's....

So the doctor then called my rheumatologist - and the rheumy confirmed the fact that he has been trying to find a PT to send his CTD patients to and he never had any luck finding any in the area either.

So no PT for me, because my doc, my rheumy and I all agree that getting incorrect PT can/will make me way worse than getting no PT.

Maybe I should send my husband to PT school.....

Liz - my chiropractor does ultrasound and a version of triggerpoint & massage {NIMMO} - plus low level laser.
and his office space is shared with a massage therapist.

around here quite a few chiros have a massage therapist available.

maybe you can find a DC that will do only what you ask for, or a freelance massage/PT that will do it???

amazing what you can find on craigslist
http://boston.craigslist.org/ths/

Jo,

I had never thought about a chiro. There are several in my area, so maybe that would be something to look into...

Do you know if they are ever covered by insurance?

A number of insurances have started covering chiropractic and "alternative" medicines. You should call and ask your insur co if they do! BCBS here will discount services such as chiros, massage therapy, nutrition counselling, yoga, biofeedback, acupuncture, tai chi, weight management programs, exercise, guided imagery and even some health spas!

I guess insurance companies are finally realizing that there is more to health than just prescriptions... Sorry I don't have anything else to add about PT (I keep checking in on this post though, because I think I might ask my Dr whether PT is an option for me. So thanks for all the info!)

oooopppssss...
 

I became so caught up in the PT question, I forgot something.

We had 2 posters just before OBT went down, on the Vit Deficiency forum
who were low in vit D.

Their doctor's tested them, and low an behold... taking a supplement fixed
their pain issues. This is not an unique finding:
http://www.immunesupport.com/library...e.cfm/ID/5324/
We have a complex vit D thread growing on the Vitamin/Mineral board here.
Take a look. Many of us are working on bringing this information to you.

The first articles started appearing in 2000, now today, we are seeing more attention to Vit D..and the possiblity of the RDA being raised to 1000IU.

I am sorry I didn't remember this, but that previous post of mine was getting too long...leading to glazed eyeballs!:p

You guys are a fountain of information! Thanks!