Cranial Sacral Therapy Woes

Discussion in 'Fibromyalgia Main Forum' started by MsE, Feb 17, 2007.

  1. MsE

    MsE New Member

    A couple of weeks ago I asked if any of you had tried cranial sacral therapy and a couple of people said they had heard good things about it.

    Then I "googled" the subject and learned it is so gentle they use it on babies. Sounded like my kind of therapy so I signed up.

    Thursday I had my third session. Came home and crawled onto the sofa and stayed there. Felt miserable. That night had a lot of neck pain, head aches, and felt woozy. Mornings are still yucky, but am getting better.

    I don't know of this kind of reaction is typical or not--the literature seems to say it isn't--but I thought I should put out a warning to be cautious if you've been considering cranial sacral therapy. Gentle as it is, it sent me into a major exacerbation.
  2. MsE

    MsE New Member

    I'll probbly go back to the therapist on Thursday and tell her what happened. I want to hear what she has to say before I give up entirely. But I may walk out if I feel edgy about what she says. We have to take care of ourselves, listen to our bodies. Mine needs help, but.......
  3. Ginner

    Ginner New Member

    I have had myofacial cranial sacral release treatments which were done by a PT whom specialized in this, many PTS are leary of this type of treatment, but thank goodness the therapist I was seeing wanted to try anything and referred me to an outside PT from our network.This PT had a gift, almost holistic I would say, he spent many hrs. with me for a year. I kept telling my regular pt, "I needed it deeper in the muscle than we getting here".
    I was in a ball when I went to see him. I was referred from my regular pt, I was being treated in the hospital where I actually worked in physical therapy as a pt technician, for 11 yrs.I felt I kind of had a handle on what I thought about physical therapy. We helped so many people back on their feet, mostly orthopedic though.
    I had a bad car accident the pts at work tried to help me and with no avail sent me to someone that did myofacial cranial release. I did have big time reprocusions the fist vist.It scared me so I called him when I got home, I would suggest you do the same. From then on , he would never let me leave the clinic until I felt better than when I walked in.I got back on my feet in a year, was walking a good strong walk , still taking effexor ( perscribed for pain and it calmed me down after trying all other rx's) and I was taking darvocet.
    It is very difficult to find a physical therapist who can actually give the therapy for fms/myof.pain syndrome help that you need. My treatments were in 1993 I am now "searching" for a myofacial sac/rel. PT in our area again, mine retired.
    I have just "big big time" crashed. 10 yrs later, lost my most favorite position at work and have just applied for diability and down in bed.
    Sorry to get so carried away here.
    I would call your therapist mse, they will be glad you do.
    I hope this helps you,
    Ginner

  4. MsE

    MsE New Member

    Thank you for sharing your story, Ginner. My instinct had been to talk to the physical therapist, a kind soul, and now I am certain that is the next step.

    I am interested when you say you had a bad reaction to this kind of therapy at first. You see, I had not expected a reaction because cranial sacral is supposed to be delicate enough to use on babies. So I thought I was home free. Then, when I had a nasty reaction, I thought it must just be me or that it was a coincidence or something.

    But your saying you, too, had some initial problems gives me hope that it may be worth sticking it out. Yes. I will talk to the pt, and thank you for sharing.
  5. Ginner

    Ginner New Member

    I worked with 12 Physical Therapists in our local hospital and clinics as a rehab technician and not one of the therapists was specialized in myof.release. It really is a specialty.

    The myof. PT that I saw used very very gentle movements.They move your body around gently. At first I thought this was kind of different, but he would wave his hands just above areas on my my body during the treatments and he would find the EXACT areas that I had probs. in. and after that, who cared if it was kind of different, it worked for me!! This PT is actually the one who diag. my myof. syndrome/fms. Like I said, if I wasn't doing better after I had a treatment, he would say, lay back down, they'd turn the lights down and come back to me and address what was going on with me. I would leave better, not that it lasted, the next or any day could pop up a bad day.The dd. I really really did learn to read my body through these treatments. It was amazing. It took me a good couple of mos. to get settled down. I was like a wild woman when I got to him because my dr. wasn't able to find rx's that helped me. I told my dr. that I was getting so frustated,depressed and had such pain and they prescribed effexor, that was like a gift from heaven at this point, calmed me down so I could work with the therapist, relax, while he did the treatments. His clinic also had a very calming atmosphere.
    So you can see, I had a good experience. I sure hope your experience will be good also. I slowly got back to walking and working after a year of seeing this pt.
    2 yrs ago when this beast reared-up its head with me again I called for him, he has retired. I started my search for "someone' like him, to date.
    Say, would you mind asking the PT when you see them if they know of anyone in Nebr./Ia. who does myof. release? That would be so great! Thx

  6. Forebearance

    Forebearance Member

    Oh, MsE, I'm sorry that this happened to you.

    I have heard of it happening to other people. Even though the therapy is very gentle, it can produce a big reaction at first. It means that it is doing something for you, but how uncomfortable. Slower progress may be better for us sick folks.

    It didn't happen to me, because I am in the habit of warning any kind of physical therapists who work on me about how sensitive I am to pain. And then if the guy who was working on me pressed any harder than super gently, I spoke up.

    I guess I am very proactive, and he was probably afraid to even touch me at first! lol But it works for me.

    Things that don't hurt or feel bad at the time, can end up causing me days of pain later on. So I am very touchy about how I am touched!

    I like everybody's suggestion to talk to your PT about how you feel. It will allow her to adjust the way she works on you so you can bear it. And right now, you may want to drink lots of water, too.

    An acquaintance of mine who had a big reaction to the CST at first ended up being very helped by it. She had been a gymnast as a child and had a lot of old injuries.

    Love,
    Forebearance
  7. LittleBluestem

    LittleBluestem New Member

    I’m wondering if you were drinking plenty of water, both before and after the physical therapy? Just about any type of body work can release toxins. I would guess that babies haven’t had a chance to build up much of a toxic load, so that it isn’t as much of an issue with them.

    I had a combination of massage, myofascial release, and cranial-sacral release therapy. I was not having any problems. Then one time I did not drink enough after the session and was amaze at how ‘sick’ I got. I had a head ache, was dizzy and nauseous, but did not have pain. I didn’t make that mistake again!
  8. MsE

    MsE New Member

    So what I'm hearing from the two of you is that a bit of misery after cranial sacral treatment is to be expected and that to report it and try again. Vicki, the pt, was being so very gentle I could heardly feel the manipulations on my head and back. Also, the isometric exercises she showed me are very mild, but they set off the aches and pains and exhaustion and all the rest of it. But I definitely will keep Thursday's appointment and have a good talk with her.

    I don't mind putting up with discomfort if I think it is going to help in the long run, and you have given me hope. Thank you for that.
  9. MsE

    MsE New Member

    I thought I had been drinking enough water, but maybe I didn't. I will definitely keep your hint in mind when I go back on Thursday. Thank you.
    [This Message was Edited on 02/17/2007]
  10. Diva55

    Diva55 New Member

    Hi MsE
    I had CST years ago & it was the best thing ever! It was before I had FM, though.

    BUT I had the weirdest reactions even though he was very gentle. It was the body coming alive once more!

    You must expect reactions as it shows the treatment is working & that's a positive thing!

    But as others have said your therapist must be told that you are extra sensitive & she should go slowly. It is gentle but very powerful.

    Also the water is very important for getting rid of the toxins.

    I went for a number of months and my body was brought back from the dead & I felt wonderful.

    I wish I had a good therapist near me as I'm convinced it would be the most help for my FM/CFS.

    Good luck & best wishes

  11. MsE

    MsE New Member

    It's good to know that you had good results. I tried the isometric exercises she gave me last night. I mean, tiny tiny little movements. Woke up in the middle of the night with my neck all stiff again and a horrendous headache. You can be sure I won't be doing those exercises until I talk with her, and you can also be sure I'll be reporting all this before I let her work on me again.
  12. Daisys

    Daisys Member

    MsE,
    I went 3 times. The first time, she told me to let her know if I suffered pain, and she would slow down. I doubted I would have pain, since she hardly touched me, but I couldn't sleep that night--not only pain, but my mind just raced.

    The second time, afterwards, there was less soreness, and my mind still raced, but I got more sleep.

    The third time, she started lecturing me on her personal philosophy while working, which I didn't agree with. (We're the master of our health, if we believe we can live forever--we will. Paralyzed people can get up and walk if they think positive thoughts about it, etc...)
    I really didn't feel anything was physically accomplished, was reminded that I do need to have positive thoughts, and really don't feel like I'll ever go back to her.

    So, I don't know if I believe in CST or not. Maybe it's just a very gentle massage, that can in itself be soothing, if done right. I believe the placebo effect is a good treatment in a lot of cases, because positive thoughts have power. Sound cynical, don't I?
  13. MsE

    MsE New Member

    I have had the same thoughts. Someone posted that even something as gentle as CST can stir up the system and cause problems, at least temporarily. I don't know. At least I know my physical therapist well enough to ask some tough questions and get some answers. I think. :)
  14. Diva55

    Diva55 New Member

    Hi Daisys
    Oh dear it sounds like you had a "hippy-drippy" therapist!

    After my brilliant therapist in London, I went to another one as I had moved.

    Well she just jabbered on about her relationships & details on what she did with her man. She looked like a witch as well (mad hair & weird clothes!!)

    I did stick with it as I thought the treatment would overcome her personal interference but it didn't do any good.

    So the key is a good therapist who you feel comfortable with, as my first therapist never talked about anything but the movements in my body. I've learnt a lesson for future times - if they interfere with the treatment with irrelevent stuff tell them to stop! & then stop going to them.

    I hope you get to try it again with a good therapist.

  15. Daisys

    Daisys Member

    MsE,
    I did read on this board somewhere that massage, acupuncture, and cst can modify (or a word close to that meaning) the central nervous system. So, I was thinking maybe some of the benefits are from the comforting touch, getting the mind to go into a relaxed state.

    Diva55,
    I heard of a cst therapist in my area who is supposed to be real good, but she doesn't accept insurance.

    Since my pain level has gone down, I'm not going to worry about it. Toward winter, if it gets worse again, I'll probably revisit this whole issue.

  16. MsE

    MsE New Member

    Well, you hit that one right on! I definitely felt as though smething major had been done to my central nervous system. Grin.
  17. IntuneJune

    IntuneJune New Member

    I have had extensive myofascial release (MFR) and have posted frequently about this if you wish to do a search.

    The therapists utilize a little craniosacral therapy.

    Many times, the day after my treatment, I would have new or different "pain" and initially this upset me.

    But I came to trust. My body had been in pain a long time, I had many issues besides FMS which probably was aggravating the FMS.

    My MFR treatments were releasing the fascia, thereby creating a change in my musculature. That in turn, would bring about a change in how my body would perform a movement. The muscles were not accustomed to moving in such a manner, so now they were sore from this new way of moving. They let me know the next day.

    I did come to trust the therapists, but that did not happen overnight, I learned to trust them (2) over a period of time.

    What I did do, after treatments, was to go home, get on my herbal packs, (I have large ones), after heating them in the microwave, and put on soothing music, I would "re-play" the treatment and try to understand what change was made.

    The next day was a learning experience, usually not as pleasant as my drifting into my music the day before.

    Communication was essential in treatment. When I first started, two therapists treated me, both at the same time for the MFR spinal "stretching", and individually. One therapist had better communication skills than the other, so I would "report" to him.

    As the treatments progressed, as the results came about, it was a lot easier communicating to both of them. They were amazed at what I reported back to them.

    So, what am I saying..... communicate with yourself, try to understand any change made in your body, and realize, if a change has been made in one area, EVERYTHING in the body is connected and changes have to be made else.

    And communicate with your therapist.

    Good luck dear one.
    Fondly, June

  18. jole

    jole Member

    If there were a therapist near me that was trained in CST I would go in a heartbeat! I truly believe in it. But I also believe you have to trust completely and be fully relaxed during your treatments for them to work well.

    Daisys~you really had a flake - from what I know of CST, the therapist shouldn't even be visiting with you during a treatment, because they need to be totally in tune with your body rhythms during treatment. I don't think yours was really trained well.

    MsE~it sounds like yours knows what she is doing. I would definitely give her some more time. I'm actually a little jealous!!! Keep in touch, won't you? I'd like to know how it goes for you..
  19. MsE

    MsE New Member

    Thanks so much for all the input and encouragement. I definitely will get back to you after I see the therapist again if not before. I really appreciate your taking the time to write.

    Oh, by the way, this bad reaction didn't occur only after the first session. In fact, the first one was okay and the second one wasn't too bad. It was the third one that set off something major in my system. Weird, huh?
  20. MsE

    MsE New Member

    I said I would get back to all of you after today's session with the cranial sacral therapist. However, when she heard I had a bad flare from the last session, she said to wait a week to come back; she didn't want to aggravate things any more.

    She also said that next week if I wasn't a whole big bunch better, she was going to do a test to see if I had nerve involvement that needed the attention of a neurologist. She is being super careful 'cause I'm such a princess, I guess. Put that darned pea under the mattress, and I'll feel it!

    Talk with you about all of this later to share info on the subject.