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    Physical Therapy question for Dr. P or anyone else
    reesespeaces posted:
    My PCP referred me to a Physiatrist (had to look that up) he prescribed six weeks, 3x per week physical therapy. At my first therapy session, the therapist was assessing my condition, she admitted that she didn't know much about fibromyalgia and proceeded to grind her firngertips or knuckle as hard as she could into my tender points. I thought they were for diagnostic uses only. She assured me that this would release 'toxins and inpurities' and it would feel much better...When I got up this morning I could hardly move. My problem sports are my thoracic back, chest wall, neck and shoulders. I am terrified to go back to this therapist. Should I ask her to learn about fibro? I am so sick of nobody understanding how to treat this disease. I will not allow another treatment like that, and may be labelled as 'non-compliant' Someone please help me...
    glad2bhere65 responded:
    If the physical therapist says she doesn't know much about fibro, I think I would head for the door and not look back! I don't believe what she said about "releasing toxins and impurities" since she herself apparently said she doesn't know much about fibro in the first place. I wouldn't go back to her.

    That's just my opinion. Everyone has to do what they think will work. I pray that you will find something that works well for you.

    annette030 replied to glad2bhere65's response:
    I agree with glad2bhere65. I would see a PT who is familiar with FMS.

    Take care, Annette
    booch007 responded:
    Good Morning,

    I have used a physiatrist in the past and he gave me good info and useful tools to help me. I also saw a physical therapist who was not helpful, he tried. "I wasn't ready"....

    My body hadn't been hydrated enough and re-supplemented enough to do what he asked. The massage therapist would work the trigger points (for me) tender points (for you) mine* are congested zones of debris from cellular activity....and they hurt alot when worked on.

    Then I drink alot of fluid after to move out and flush the by products freed by the massage. I stopped using it as it was so painful and then after I felt sick and the next day awful. I get trigger point injections now, faster response and faster recovery.

    I feel so strongly about movement being important to us to keep high functioning, but if the work of helping the muscles isn't finished really can't.

    I so many times tried to stretch out, told byEVERYONE...just stretch, well the body couldn't/ wouldn't do it and the recoil of pain after was awful.

    It was an extrodinary effort by the physiatrist and I to do a green diet and water only cleanse and using a product called green vibrance as my supplement.............First time in years I could get somewhere...He was the most expensive thing I have done for this disease, and my massage chair (like in the pedicure place) bought one for the house, to help the spots break up......

    I would not use the PT people yet, until you get better tuned, or find one that really KNOWS FM. NOT AN EASY THING.

    I sure wish you luck. It is always a few things out with us and to figure that part out and help yourself is the trick. All my best for a better week, Nacy B
    Mark Pellegrino, MD responded:
    Hi reesespeaces,

    I know what you mean about the "Physiatrist." I've been a Physiatrist since 1988 and I still have to explain to family and friends at times what it is I do exactly! I'm a specialist in physical medicine and rehabilitation and the focus is on diagnosing and treating problems that cause functional impairment, ie chronic pain problems like fibro! My specialty's philosophy is to help people manage their problems to optimize function and quality of life, even if the problems cannot be cured.

    Phisical therapy is one of the pillars of therapy for FM, I believe. I prescribe it often, but I make sure the therapist is knowledgable about FM. PT should make you feel better ultimately. It's about finding out what works and learning how to do a successful program yourself. Your therapist certainly needs to understand your disease in order to help you.

    There are many skilled PTs out there. I hope you find one who can help. Ask around your area and check with your doctor if it's OK to try again. Good luck!

    Dr. P
    thenikki64 responded:
    Good to know PT can help. None of my doctors has prescribed that for me, so I will ask next time. I am using an e-stim unit now, so hopefully those treatments will help. Good luck all!
    humblep replied to Mark Pellegrino, MD's response:
    Hi Dr. P,
    The supplement that Dr OZ recommends we all should be taking is Astaxanthin. I thought it started with AZ, but it is AS. Anyway,,I am adding the site with the video of Dr OZ talking about it, for everyone to take a look at.
    melodystiles replied to Mark Pellegrino, MD's response:
    My rheumatologist sent me to PT as well. I have been going for 6 weeks, twice a week. For two of those 6, I did not attend. First, I went into a flare within 3 hours of a PT session and then, 4 days later, we all caught the flu.
    I called the office to tell the secretary. The first time I called, I just explained that my last session had led to a flare and I requested she let the Physical Therapist know. And, then the secretary proceeded to argue with me!
    Anyway, my Physical Therapist was really nice when I returned and we discussed what had happened and she made corrections and all has been well since.
    Then last week, I had to reschedule for a day because we had bad storms move in and I was flaring. When I went in, my Physical Therapist asked me what had happened and I explained the weather change. I swear to you, this Physical Therapist looked at me like a deer in headlights and said, "Really? Is that normal?"
    I think my jaw unhinged. Anyway, let's just say that sometimes these PT places will tell a doctor they understand a certain disease or condition and they really don't. They're just trying to get referrals and money.
    mariet615 replied to melodystiles's response:
    I think it is our responsibility to make sure our caregivers are educated to treat us properly. If I ever hear anything like some of you have, I cancel the appointment, and then I write a letter and send a packet of material I've collected on fibromyalgia that explains the latest information and research on fibro to them. I was blessed a year ago to go to a physical therapist who does myofascial release, a form of massage that is ideal for those of us with fibro pain. At first, she barely touched me, which was so different from my previous massages that left me feeling pummeled and flattened...and in worse pain after then before! Myofascial release gives me some pain-free time, something I thought I'd never have again. I have limited PT and even more limited income, so I have to go long periods between myofascial release massages. When I start with a new PT, the first question I ask is if they do myofascial release. If they say no or have not heard of it, I ask them which PT in the practice does have that knowledge, and switch immediately.
    Think about it--if your friend had a visible bruise, would you advocate her hitting it really hard to "make it better"? No, of course not! Please don't be so desperate for relief that you accept poor or harmful care....only you can advocate for yourself. Good luck to you! Here's to them finding the cause and cure for fibromyalgia!
    TreeTopL replied to thenikki64's response:
    By a PCP referal I had about 8 PT sesions in May from the Lead Therapist at a regional facility. The PT focused along my upper back/spine/shoulders with a mild start, moderate manipulation, a few weight routines, followed with a period heat & electrical stimulation similar to a TENS unit. This has brought about increasded function of these areas along with a significant amount of released tension in these areas to date. I would like to try a massage a day...if I could afford it.
    las930 responded:
    With fibro you will find that you know more than a lot of professionals, if you gut tells you not to go back - go with your gut. Talk to your dr about someone or something else.
    TimberLou responded:
    We all must remember to be our own advocate. And that doctors are NOT god. And YOU have a choice in your treatment. They present the options, but you decide ultimately what treatment works for you, what you can afford, etc.

    (this is a little long, sorry)
    Shortly after I became diagnosed, my pain levels reached a level of intensity in the far extreme of the bell curve for FMS. The tender & trigger point pain, I can manage; mentally I can work through it. But I also have a type of skin pain, a type of neuropathy that was so bad at one point I was ready to kill myself. Touch hurts, wind hurts; and I don't mean a little. I mean out your mind, constant, never-ending, no way to escape it mentally pain -- the kind that makes you scream, pace, rock, pull your hair, even hurt yourself because the acute pain is the only thing that distracts you from the other pain.

    I had a doctor who over booked (you might show up on time and still wait 5 hours), and once in the office he'd rabbit in and out. Impatient with the cognitive aspects of FMS, he'd rapid firing questions at you & become annoyed when you didn't answer quickly enough. Then he' take you to his sample cabinet & chuck (literally) meds at you. And when you did not respond to treatment, he'd become angry with you.

    I felt I needed this doctor because he was the only one who had been willing to listen to the degree of pain I was in, and after a few year of trying all other avenues, including nurontin/gabapentin, then low dose narcotics, etc...I FINALLY saw pain relief when we tried the fentanyl patch.

    I felt I could not speak up; because I also knew that without the fentanyl patch, the pain would return, and I knew I would not survive it. I would eventually commit suicide, the pain was just that bad. It would kill me.

    However, I'd also started to develop panic attacks at the mere thought of having to go see him (which because fentanyl is a C2, that was monthly). I'd be anxious for days before and have anxiety attacks in his office. I put up with this for over 2 years.

    FINALLY, his new young intern saw me instead one visit. He noticed my anxiety attack (my BP was in stroke territory, I was grey as a ghost, shaking, and near tears), and he asked me what was wrong -- and when I told him -- he kneeled down in front of me and said if I was that afraid of my doctor, it was imperative that I find some one else. That I was in just as much danger of death from that, then not having pain controlled. That gave me the courage to find other options.

    It wasn't easy, esp. since this was 10 years ago & I was living in the midwest. One doc strung me along for 5 months only to let the bomb drop she thought FMS was BS & I was just a junky. Another doc fired me when I expressed my frustration with his lack of progress in sending me to the specialists as he'd promised. And I had a neurologist literally kick me out of his office on the first visit in no less then 5 minutes the moment I told him I was on fentanyl (despite me telling him if he had a better treatment idea, I was willing to try it).

    FINALLY, I found a physiatrist who not only understood FMS, but pain management. They saw nothing in my record to indicate I was a junky & everything to suggest I was truly in that amount of pain. I've NEVER come in early for scripts in over 7 yrs & w/ fentanyl, I was finally able to get out of bed.

    My point is, I allowed that first doctor to bully & abuse me. We MUST stand up for ourselves - who else will? Be patient, be firm, and come armed with studies to back you up. And if ur doc won't listen when you explain what happened at PT, and insists you go back -- FIRE him.

    Go in, explain what happened, tell him you still want PT but suggest you find another PT who is actually knowledgeable about FMS. Done in properly, BAD PT could potentially cripple you. I've seen it with other FMS patients. So be your own advocate. Look out for yourself. Only YOU live in your body, only YOU can say what works & what doesn't.
    Kinkatia responded:
    I'm seeing a physical therapist now who's treated fibro patients before, and she's very gentle with her hands-on therapy. Massage isn't helping me much, though, so she's guiding more towards self-stretching and exercises because I'm the one best in tune with my pain and can best avoid what'll hurt. Therapy still kicks my butt, but in the good way that's helping.

    Definitely ask your therapist to learn, or offer to educate her on fibro. A physical therapist's job is to help you conquer pain, not cause it. If she won't listen to you and won't educate herself, ask your PCP to refer you to a different therapist. In any case, you're allowed to say "No, I don't want that kind of treatment because it makes my pain worse." Be assertive: it's the only way to convince people to learn.
    sadi23 replied to TimberLou's response:
    TimberLou,I agree completly!!have Lupus,COPD,Fibro. Raynauds,Sjogrens,Diabetes,& many more medical conditions.I have been ill since I was a child.I went through hell with many many doctors that didn't know what the heck I had, or thought it was all in my head,I wanted help,I would go in, and have all these serious medical concerns, they would freak out& work on me,give meds,IV's & after I got somewhat better,they would say they don't know what caused all those medical state.but now your better & this is all I can do for U. when everyone think U are lieing or crazy,& you have no one to turn to. with my Lupus amoung other things, all this unkind, unloving, uncaring people only add to stess which can cause me to become even more sick...But I want to say, I didn't have any support,or did I feel i could challenge the doctors, I started to think I was crazy,& the pain i was having may not be real,well this really messed me up.I am 52 no & learned, If I don't have a connection with a new doctor of anykind, if we don't communicate well,or he or she seems to busy to listen, I move on know matter how good someone says they are.I need a doctor that listens to me,I have many doc's & i email them at any time,ask questions,let them know how I feeling,& if I feel there has been any kind of change in my body or mind, most all get back to me within a hour or less,never longer than the next day.i send them information,online I feel about a med.& if there are anything other than that med I could try. The email me, after my visits, if they don;t hear from me in a week or so,they start calling & emailing me, I had one come to my home,as they get worried,or if I cancel, they want to know why,as i wrote on a websight about " Do you ever feel to sick to find out how sick U are?" like I am tired of being sick & tired" I got so may reply's on how other have felt the same way,U just feel to sick to drive or be driven any where, even to pick up free money,& if that doesn't say, how sick you are. My doctors,have a red sheet in my file,if I call & say I don't feel well or I would like to make an appointment, even if i say, it dosen't need to be today, it says if I call to get me in ASAP as when I say I am infected, or I am in Pain...Then most likely there is know one here today, that is as sick or in as much pain as I am, and to get back and tell him what was going on with me, as they have sent me right to the hospital, I have gotten to the doctors, and after a few minutes, a amblance is called & I am off to the hospital again.As I have learned or got used to living sick & in pain 24/7 & if I am down, then there is some thing really bad going on, as I am one that will say" well i will go in tomorrow. i can't do that But I now have great doc's they have called from home as they are looking something u on line, & they have a questions..Also my doc's have me take the last appointment of the day, a&sometimes,it may be at 2:00 not 4:30 but the last appt. they can stay as long as it takes,I have been there until 6:30 at night & got there at 3:00 thats a caring doc.You have to be your own specialist, U have to educate your self, so we can educate & demand the care & the doctors that do understand our illness & want to learn more about them.These doctors are out there, look them up, read their profile as a doctor, what they have studied, where they have worked, where they studied., but fight for your selves as you would for your child, you can't be a good om or wife, or anything if your not being taken care of...Soeak up, it can save your life..sorry so long, I had to delete some of what I wrote, so if it seems there is something missing, thats why..Good luck and god bless Teri or sadi23
    reesespeaces replied to TimberLou's response:
    Thank you all for your responses. Timberlou I can relate to your post quite a bit. I have such neuropathy in my hands, especially in the morning, right now I can hardly type, it hurts so bad. I did go back to the PT and asked her if she learned anything about FMS during her vacation and told her that the trigger point grinding that she did last time hurt me the next day and I wouldn't do it again. She wasn't too pleased and referred back to what the MD had ordered, which was conditioning and endurance training. So, we are doing that. Its hard because I have difficulty gripping anything for long periods of time, and also cause I am in poor physical shape from being too sedentary. But, she is willing to take it slow, at my own speed which is working. The third visit she recommeded a book on Fibro and told me part of her training this quarter requires learning about FMS. How convenient for me.

    One thing that is really bothering me is the game my PCP and this Physiatrist are playing is the response when I ask for somthing for pain during flare-ups. They are tossing it back and forth saying, we'll see what the other Dr. says. I am hesitant to keep asking because I don't want to sound like a drug seeker, I am astounded that you found a Dr. that believes you have pain requiring fentynyl. (I'm envious) I can't even get tylenol with codeine, which doesn't work. What I would like to find is a doc with fibro, so they could truly understand. I have to stop now the typing is really hurting me.

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