Fibromyalgia and Chronic Fatigue Fibromyalgia syndrome is a widespread musculoskeletal pain and fatigue disorder which generally occurs in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. This forum is for fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome (CFS/CFIDS).


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Old 09-28-2006, 05:25 PM #11
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Lightbulb 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.
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Old 09-28-2006, 08:52 PM #12
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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?
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Old 09-28-2006, 09:25 PM #13
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Default 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
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Old 09-28-2006, 11:00 PM #14
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I should have updated this thread.... but I forgot I posted it

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.....
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Old 09-29-2006, 01:29 AM #15
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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/
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Old 09-29-2006, 11:06 AM #16
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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?
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Old 09-29-2006, 12:37 PM #17
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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!)
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Old 09-29-2006, 03:56 PM #18
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Lightbulb 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/
Quote:
In the latest study, Gregory A. Plotnikoff, MD, of the University of Minnesota Medical School found a much higher incidence of vitamin D deficiency in the patients with unexplained muscle and skeletal pain than expected, regardless of their ages.

All of the African Americans, East Africans, Hispanics, and Native Americans who participated in the study were vitamin D deficient, as were all of the patients under the age of 30.

The researcher says it was a big surprise that the worst vitamin D deficiencies occurred in young people -- especially women of childbearing age. The findings are reported in the December issue of the journal Mayo Clinic Proceedings.

"The message here is that unexplained pain may very well be linked to a vitamin D deficiency," Plotnikoff tells WebMD. "My hope is that patients with unexplained pain will be tested for vitamin D status, and treated, if necessary."
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!
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Old 09-30-2006, 04:32 PM #19
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You guys are a fountain of information! Thanks!
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