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    deansmimi posted:
    This is for Nancy(Booch007)

    Nancy, What questions do I ask the therapist to make sure they know how to treat someone with Fibro? I was already hurt once by a PT.
    Any info will be appreciated.

    Thank you, Marie
    BetteK responded:
    If you preface your questions with the fact that you've been hurt badly during PT, the therapist may be less apt to take offense.

    Things are complicated by the way many rehab departments are run. You could see a different therapist or assistant every visit. Even if the original PT is great with FM patients, who knows about the rest.

    Be very careful with your initial evaluation. If they do the full workup, you could be in trouble. A simpler version just showing how well you can move into certain stances/positions (such as how far can you lift your left leg as opposed to how many times can you lift that leg that high) will give the therapist baseline values without triggering a flare. (Been there, done that both ways. Believe me the second version is the one yu want.)

    I'm sure Nancy will give you lots of great suggestions.

    Towards better days,

    deansmimi replied to BetteK's response:
    Thank you, Bettek. This is very helpful.I appreciate you
    taking the time to answer.

    God BLess1
    MeandMyFibro responded:
    Hi! I'm new to the discussion group. I started working at a Physical Therapy office in September. I work at the front desk. I have never worked in the medical field before so it has been a very educational experience for me. I am shocked at how little our Physical Therapists know about Fibromyalgia. We are seeing an increasing number of Fibromyalgia patients and my boss asked me to give a brief Fibromyalgia (from a patient's perspective) talk at our next staff meeting. My biggest advice would be to ask the therapist how familiar they are with Fibromyalgia and have they treated other Fibromyalgia patients before. I think the most important thing is to find a therapist that you are comfortable with and that listens to you. Take this opportunity to discuss your symptoms, pain, and what seems to aggrivate it. Speak up when something is too painful or stressful and let them know what exercises seem to be helping and they can build a better plan from there. You may also want to try some Aquatic Physical Therapy.
    Anon_10089 replied to MeandMyFibro's response:

    I have never done PT but I've been on this board for awhile and noticed a common thread of what people report when they do PT: the therapist usually pushes them too hard and causes a major flare.

    I think physical therapists often don't have a full understanding of FM. I also think that when they're working with other patients, like joint replacement folks, etc, they're trained to "push" them because it's necessary for that kind of rehabilitation. Obviously, that's not what we need.

    I do think PT can be useful for FM but the therapist really needs to listen to you and not push too hard. Also, look up to the upper right side of this board--there was a guest doctor who is a physical therapist, Dr. Dailey. Click on her name to read her posts.
    booch007 responded:
    Good morning,

    I have not ever had luck with physical therapy....

    They seem to always go past the line my muscles will allow and tell me otherwise.

    Maybe I didn't hit one that had FM true knowledge...though they said ("we will get you better, peel you like an onion and tune you up")......well this onion is the same as I have ever been. The place I am in life I got myself to.

    I don't what to say....I use all my muscles during the day at work. I purposely think about muscle groups as I do things. I do not use repetative movement if I can help it. I never sit still too long as that tightens me too.

    It just takes years to know you!.

    The book I talk about " FM and Chronic Myofascial Pain, a survival manual by Dr Devin Starlanyl 19.99 on amazon, was priceless for me.

    It give movement guidance, anatomy and physiology for you to understand the mess we are in.

    I have Travelle and Simons too $$$ if interested. This is the BIBLE for medical professionals, your PT has it I am sure.

    So, if they take it slow and spend more time on stretch then building muscle for you (you cannot train a muscle that has a trigger point in it) have him check you for trigger points.....
    If you are positive, then he should know not to proceed.

    You need masssage and working to break the trigger point.

    My issue was the muscles were cold when they worked on me too, I need to warm them. The best PT spot is in the shower. I put handles in there for me to lean on to do what I need to do. I have changed so much in the house to be the best I can be.

    Good luck. Maybe you will be lucky. Water execise is good you are boyant and the water warm it all adds to good stuff for us. I just hurt when I got out and tried to walk to my I saw the shower was my best bet yet.

    Keep us in the loop........... Nancy B
    booch007 replied to Anon_10089's response:

    I also want to say after reading the other notes....PT as a rule is there to rehabilitate a muscle that has just had an event and bring someone back to normal state.

    We will never be back to normal state. YES we can be better.

    The most expensive Dr. I saw put me on a Green diet....(meat chicken and fish...and everything green I could get my hands on). I even ate dandolion greens. The antioxidants in them is priceless. I was allowed NOTHING but water and I have to say it was the first time my muscle "listened to me" I stretched in the morning and the muscle listened. I was still 90 but I could get better before even rising out of bed. I drank 4-5 20oz bottles of water a day...and it was quite a detox but it made a big difference in me.

    We will always have this, there is no cure. PT looks to cure you and get you stronger and more flexible. Hmmm.
    Just can see this.....try the book and maybe try that simple diet.
    It took weeks before I saw and felt the difference, BUT i was in heaven when the body changed. He said it takes 60 days to change your body chemistry so be patient, and if you break the is day 1 again and you will need to wait. SO GOOD I was. I was so close to suicide at that time (my DH brought me to this he was scared to lose me). It helped so much.

    OK, I am sorrry I don't have a magic comment to help. But I can share my path and what i do to help fight the dragon that follows us eachday, I push him away*....

    Good luck, Nancy B
    deansmimi replied to booch007's response:
    Nancy, I had read awhile ago apost by you,exphat tlaining what to ask a PT to know if they know how to treat us? This is what I would like to know, as I went to a reputable PT that said theyhqd treated people with fibro, but I found out to my dismay that they didn't know how, and the treated me very aggresivly, and hurt me. Please help with this quesstion, if you can.

    Thank you,

    booch007 replied to deansmimi's response:
    Hey...I really think that we have no option in that area of medicine. I liked chiropractic at first and then needed to move on as my compromise was changing.

    I re-evaluate myself all the time. I have settled with Neurology and massage along with all that diet routine to give me the best life I can It is a matter now of pace and rest and knowing what muscles to use and switch off.....

    I have said before I change shoes everyday to use different muscles in the know each shoe is worn a little different and pitches you a bit left or CHEAP flops or no support shoes for me.

    Good luck, for me I would leave them alone and chose another path. You have seen me recommend the book I lean on alot right? FM and Chronic Myofascial Pain by Dr Devin Starlanyl 19.99 on It is so helpful

    Good luck, Nancy B

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