Need your input on PT

Discussion in 'Fibromyalgia Main Forum' started by JaneG, Dec 20, 2002.

  1. JaneG

    JaneG New Member


    at my last dr. visit(rheumy - and only saw nurse practioneer) I was asked if I thought PT would help my fibro. First of all, I don't know if my insurance will cover it, and secondly, dont't know if it would help, thirdly, not sure if anyone in this area is knowledgeable enough about fibro to do any good!

    So, could I please have some thoughts from some of you that have gone through PT? I do know that I would love to find something that would help the knots and tightness in my shoulders and neck! Right now all I am managing to do is some exercise videos - one PACE geared to arthritis and one entitled "Gentle Fitness" which says it is stretching geared for fibro. Can't manage to get through either one of them yet .

    Your thoughts please -----smiles JaneG
  2. 1maqt

    1maqt New Member

    PT FOR FMS IS VERY HELPFUL EVEN IF IT ONLY KEEPS YOU MOBILE.
    ONE OF OUR CONCERNS IS STIFFNESS.PEERSONALLY, I AM GOING TO START ALSO, SO THAT I DON'T DO SOMETHING TO INJURE MYSELF.MY SISTER USES WATER THERAPU WHICH LETS YOU MOVE MORE EFFORTLESS.BEING KIND TO OUR BODIES IS GOOD.
    HAVE HAD FMS FOR A LONG TIME, AND THE STRESS ON MY MUSCLES OF ORDAINARY EXERCISE GIVE ME A LOT OF PAIN A DAY OR TWO LATER.MASAGE THERAPY IS ALSO HELPFUL.
    FOR MY SHOULDERS, I DO HOT BATHS W/ SALTS (EPSUM SALTS
    VERY CHEAP) USING THE BIG PLASTIC CUPS FROM FAST FOODS, I GENTLY POUR THE HOT WATER OVER MY SHOULDERS AND USE WASH CLOTH TO LAY ON NECK AND REPEAT TO ANY AREA THAT IS SORE.
    TO KEEP IT INTERESTING I USE SCENTED SALTS, AND BUBBLE BATH. DOING THIS JUST BEFORE I GO TO BED HELPS ME....JUST THOUGHT I'D PASS IT ON. HAD FMS FOR 28 YRS. BEFOR THEY HAD A NAME FOR IT.
    ISN'T IT WONDERFUL THE REASEARCH THAT IS GOING ON? I'M EXCITED. LOL &XXXX'S 1MAQT
  3. garyandkim

    garyandkim New Member

    yoga and Tie Chi, ask your insurance co if they cover any or all of them. You may have to have the code from the PT place or docs to have them look it up or other to see if it is covered first. Walking and easy stretches are helpful to us when we can. Easy does it, take it slwo and if you take a class do what you can and don't worry about keeping up or finishing the whole class. Take breaks you don't want a flair. Also many say a treadmill or bike helpsand some use those giant balls. I tried one and couldn't balance on it. Try these store bought ones out instore to see. Some places will let you return items in a certain time frame check it out. Swimming in warm water is also good. I loved the warm water hydrotheropy but, it's hard to find a place that does the suspended kind. Our Nova Care had one, but they moved and don't have it any more.

    Good luck, Kim and Gary
  4. missvickielynn

    missvickielynn New Member

    Over 2 years ago, when I was still trying to hang onto my job, my doc sent me to a physical therapist. Her reasoning was so that I could get massage therapy, but have it covered by my insurance, cause that is the only way they would pay for it...in the PT setting. I had been going to a private massage therapist when I was in a really severe pain flare, and she was fantastic. She always saw me that same day, and went the extra mile (and the extra time for free) in each session, and I always got good relief, both immediate, and long-lasting. She did trigger point therapy, as well. But I had gotten to the point I could no longer afford her, so my Doc came up with the idea of sending me to the PT for massage therapy.

    Long story, but I did not get what I went for at the PT clinic. What I wanted was massage and trigger point therapy, and a carefully graded exercise program. But I agreed to be a guinea pig and let the therapist try Craniosacral Therapy. It did seem to help with the joint and muscle pain somewhat, but it made my CFIDS symptoms (fatigue, dizziness, brain fog, headaches, nausea) much worse.

    Now, I get Chiropractic adjustments about every 3 weeks...more often if I am in a flare, and sometimes use the TENS therapy at his office as well. Both help control the pain, and have improved my range of motion in my neck, upper back and shoulders, and finally decreased the numbness and tingling in my arms and hands during sleep. And, the adjustments have helped some with my lower back, at least in that I seem to have fewer incapacitating flares where I can't stand up straight, get up and down from a chair, in and out of the tub, etc. My father pays for my Chiropractor, thank Heaven and my Dad.

    If I could afford it, I would still go to my original massage therapist. I got the best all-around relief, both immediate and long-lasting, from her.

    I understand your concern about finding someone who is experienced treating Fibro/CFS patients. As you are aware, the wrong kind of therapy or exercise can do more harm than good for us.

    Good luck......I hope you find some relief!

    Happy Holidays!

    Vickie
  5. Seagull

    Seagull New Member

    My former PC wanted to send me to a PT, instead of the chiro / massage therapist I had found and requested. He admitted that my DDs (FM and MPS) were beyond his understanding, so he would try me on all sorts of meds for arthritis (???!!!). I finally told him that those meds were doing nothing for the pain and that my sleep was also greatly diminished (at 3 hours or less per night). But, because he personally does not believe in chiros or massage therapy, he refused to refer me to the one I had found (who, btw, has treated many people with my DDs for non-drug pain management).

    He did refer me to the only PT clinic in town that he said worked on people with my conditions. I did call to interview the PT before making an appointment. The first words out of her mouth (when I asked her about her treatments for FM and MPS) were, "don't worry -- with a little hard work 5x a week, especially using the free weights to strengthen those muscles, we will have you back at work in no time!" Right then, I thanked her and hung up. I realized she did not have a clue as to the limitations of these DDs and could not relate to the need to manage the 2 biggest problems (for me), which were severe lack of sleep / fatigue and chronic head to toe pain.

    So, I changed PCs and am sooo glad I did. My new PC, Dr. Naberhaus, is very knowledgeable about both conditions and has even read the book by Devin Starlanyl. After a thorough exam, he listened to what I was saying about all the symptoms I live with and then said that he could see from my history that I was not a good candidate for drug therapy for pain management. He then said that the 2 most important goals for "us" to work on immediately and first (yes, he actually treats me like a team player in this fight!) were helping me to achieve deeper and more refreshing sleep and to reduce the level of my chronic pain. I was amazed when he used the word "reduce" because it meant that he truly understood that I never have pain-free days. The most I can hope to achieve is pain reduction. So, I mentioned the ZMA for sleep and he had read some about it and recommended I give it a try because he really preferred not to give me meds for it. Then he mentioned massage therapy for pain management and I said that I had found a chiro who also offered this type of massage, as well as myofascial release therapy. He was happy to give me a referral for that, too. So, since this last August, I have been doing much better in both sleep and pain levels since using the ZMA every night and getting the massage therapies 3x a week.

    Anyway, that is what worked for me, rather than using a PT. I would interview the PT first and see what he/she tells you they do to help with the conditions you have and then decide if their goals are in line with what your goals are. JMHO :)

  6. sashveni

    sashveni New Member

    hello
    I had pt when i was hurt at work and the pt was h*** the pt kept doing deep massage on my hip and i was in agony one flare after another. ultrasound seemed to help. why didn't you see md?
  7. Stormy214

    Stormy214 New Member

    I have heard that is helped many fibro patients, but I surmise this means they had a therapist knowledgable as regards fibro. Mine SAID he was, and then proceeded to make me worse. By the 5th visit, even he recognized that he was making me worse, and did not blame me when I told him I wasn't coming back. Since, my rheumy sent me to a massage therapist who really IS knowledgable about FM, and I guess there has been a little improvement--not a lot, but I get a few hours of soreness instead of that all out pain. The doc wrote a letter for my insurance company, which I have yet to submit, so I don't know if they will cover it or not. I won't be able to afford it indefinitely if they don't, so it's just "wait and see."
    Peace and Love,
    Stormy
  8. JaneG

    JaneG New Member

    I have a dr. appt. on Jan 2nd - great way to start the new year!
    I have gotten so much info from this board that I'm afraid the dear dr. (and I will insist that I see the dr. this time) is not going to be happy - he is very hard to communicate with and I think I need a new dr!

    Anyway, a few years ago before I was diagnosed with this DD I went to a massage therapist because I had such painful knots in my shoulders- she advised me to see a dr. but I blew her off thinking I had been just doing too much yard work. Think I'll call her the first of the week and see if she is familiar with this DD and what she has to say. I told my husband he could give me a massage for Christmas!!

    Also have read other posts and will be getting some much needed books to read - gotta take responsibility for my own care - Thanks to all of you----Smiles (that's about the only place where I don't hurt anymore!!) JaneG
  9. Annette2

    Annette2 New Member

    Since I was dxd with FMS I have seen a few PTs. The first one was horrible - she did nothing for me. Neither did the next 2 PTs I saw. The last one I saw was affiliated with a hospital here. She explained how the FMS was affecting my body. She worked with me and also gave me stretching exercises to do at home. She was very knowledgeable about FMS and never hurt me. The same with a massage therapist. The only time I got a massage was right before I was diagnosed with FMS. So of course the therapist (and me) didn't know I had it. He did deep massage. When I came home I could hardly move. I spent the rest of the day in the bathtub and was in pain for 2 weeks after that! You MUST make sure whoever you go to knows about FMS! Good luck!

    Annette2
  10. karen55

    karen55 New Member

    that the therapist should be knowledgeable about FMS. I've been to several physical therapists and chiropractors. The only chiros I went to were ones recommended by people I know well who were using them, otherwise I would never let one touch me. As for physical therapists, I've been to those at numerous different times in my adult life. My most recent experiences are this: After my 2nd (and hopefully last) back surgery over 2 years ago I begged my neuro doc to send me to PT. Well, he finally did, but referred me to a group whose approach was entirely too agressive and I was hurt more than I was helped and stopped going after only 3 visits. I was in more pain for weeks after I stopped seeing these therapists than I was when I began. But the ones my current doc (who was a physical therapist himself before becoming a dr.) uses are absolutely wonderful and I have had great results. The particular therapist I have used knows FMS and has helped me considerably when I've gone to him. He uses massage, works on trigger points, uses light resistance exercises, heat/cold, ultrasound and TENs. I wish everyone could find a physical therapist they are as happy with as I am with mine. Good luck.

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