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    Any one ever try SCS, Myofascial Release, or other manual therapies?
    sebastian_16 posted:
    Hello everyone,

    My name is Scott & I'm relatively new here to the FM community on WebMD.

    I've recently met a gal, Jennifer, a friend I'm just crazy about! She was diagnosed with FM nearly 2 years ago, a condition I was not very familiar with before I met her, but is currently only being treated by a regular physician, not one who specializes in treating FM patients.

    I've been attempting to learn all I can about FM, including treatments that those who suffer from FM have found successful. MiMi & others have been very helpful regarding sharing information on nutritional supplements, and good nutrition in general, with special emphasis placed on increasing Vitamin D levels if they are low, which turns out most people have deficient levels. Apparently, many doctors have discovered that FM pain is much better controlled when Vit D levels reach into the 60's as opposed to simply being in the "acceptable" range down in the 30's. Something I believe is noteworthy for sure!

    Anyhow, I was recently talking with a good friend of mine who's been an Occupational Therapist for some 20 years in hopes that he might know of a good doctor who specializes in treating FM patients in the greater Dayton, OH area. To my surprise he told me that he has been applying manual therapies himself to FM patients & has found the Strain, Counterstrain (SCS) method to be very helpful to those with FM in relieving much of their pain. He said he's been trained in all other 'manual therapy' methods, but that he's found SCS to be the most effective for FM patients.

    I decided to research SCS for myself & see what might be worth sharing to Jennifer when I came across a reply by Dr. Mark Pellegrino (aka, Dr. P) from a couple years ago where he said he was a big fan of 'manual therapies' himself. For those who may not have heard of Dr. P, he is a specialist who not only treats patients with FM, but also acquired the condition himself years ago while still attending college to become a physician. He was considered invaluable by many in the FM Community here on WebMD as he was a faithful contributor for several years up until he suddenly vanished a couple years ago.

    Here's the link where I reference Dr. P's comments from and includes the question that was asked by Anon_138261:

    The first interesting point to me in his response was when Dr. P said:

    "100% of those with fibro also have myofascial pain syndrome. This basically means that in addition to the generalized fibro symptoms, there are regions of worse pain and muscle spasms/trigger points that constitute myofascial pain syndrome. However, the reverse is not true: that is, not everyone with MPS has fibro."

    Another quote of his I found to be very encouraging:

    "I'm a big fan of manual therapy, including active release in those with fibro. This therapy is probably working on the MPS component of the fibro esp."

    I'm hopeful that some of you out there have had some experience with some of these manual therapies and will take the time to report back. Dr. P said manual therapies include the following treatment methods:

    "Myofascial releases, strain/counterstrain (SCS), massage, neuromuscular techniques, manipulation, craniosacral therapy, etc."

    Jennifer is excited to try SCS with my friend Sean, who says it's a gentle procedure, however, to her it's new & makes her a bit nervous fearing something might go wrong which might aggravate her pain further, understandably.

    Please comment if you've tried incorporating manual therapy into their treatment, whether or not you found the experience helpful, hurtful, or ???

    Thank you in advance.

    Take care,
    dollbug responded:
    Hello Scott, I am sure Nana B, one of our week-end FMers will reply to your post. She is a nurse and she gets the injections to relieve some of her pain. She is the one who started our *member toolbox* several years ago. I wanted to reply so she will be sure to see your post.


    booch007 responded:
    Good morning Scott,

    My name is Nancy and I am a MPS patient. All FMers have some MPS component to their challenges but people can be just MPS without FM.

    That is me. I have seen so many Doctor and Physical Therapists, Naturopaths and Physiatrist. In all of it I found what worked for me was Trigger point Injections.

    The Myofascial release was connected to the Chiropractor with a PMR (physical Medicine and rehab) MD. It did little to help my muscles.

    The biggest change I saw in my situation was..My D was low, it was repleted and I take 2000 a day. I hydrated. NO JOKE...we have no idea how we rob fluid from our bodies. I was detoxed to just water and 4 blue cap water bottles (12 oz.) eachday. So about 3 liters....this flushed the body and muscles of all the waste products hung up in there. Re-Hydration takes a while to accomplish. Your kidneys balance the system but a little will stay behind...The physiatrist taught me....."anything I takes 40-60 days to change your body chemistry" and he was a winner to be with (I just couldn't afford to stay longer he only took cash). So that was a pearl given to me and gave it to the fmily.

    I had trouble walking and so stiff in the morning. The hydration and Vit D and supplements of B complex and Magnesium 250mg twice a day made a difference. I am now high functioning. I work as a clinical nursing supervisor in a Columbia Presbyterian Office. My specialty is cardiology. I have about an 8-10 hour wellness window now.

    Meds I use are distraction and laughter as well. This is tough stuff as I believe we are all missing something different to our chemistry to try and help us back to health. This is the challenge the physicians face. What works for one may not be what is going on with the other.

    Research continues and it is possible to turn alot of it around with good habits. If this is FM it is a brain chemistry thing and that for me always kept me seeing a neurologist. My muscles were compressing on nerves and my symptoms were neurogenic. I finally met after 9 the right neuro and she began the TrP injections that release my muscles in a 30 minute session and I can turn my head and have no numb hands, headaches gone. I am a lucky one.

    I often suggest Dr Devin Starlanyl's book " FM and Chronic Myofascial Pain. A Survival Manual. It was priceless for me after I began the path of injections every two weeks and educating myself. It is 11 years of injections and I am so lucky to have found my answers so I can function. (I was close to leaving with a plan and the meds to accomplish it) Oh when I think back, I had so much ahead of me,the pain though had me low and being told it was for the rest of my was unbearable.

    I always am sure to tell the newbies here that once you meet the FMers here and you increase your education it gets better then where you are now.

    I am so happy to see it is the lover who is here looking to help, but it is so much better if the patient is on here too. Hearing the discriptions of what issues are worse we can maybe give her some of our tools to help.

    Speaking of tools, to the right in resources there is the " MEMBERS TOOLBOX" I made that years ago to help a newbies get all they need from all the people here. It is a long post. Also Dr P can be found in the upper right in past posts. Type Dr Pelligrino in the search and they will all come up. We were blessed to have him here. He has written books as well.

    For her to learn her limits pace to them and fill her day is priceless living. We share a spoon theory of "just so many spoons to the day" Placing a spoon count to the things that are hard for us. Like for me laundry is 5 spoons (I have 20 for the day) It helps you pace your energy. So laundry and some small things are the limit in a day. I cannot vaccume and do laundry as that is too many spoons.

    Gosh, I wish you all the best. Know that eachday is different, we are never not in pain (just turned down) to have a life. Good luck.

    Nancy B
    Anon_10089 replied to booch007's response:
    Hello, Scott-

    I have had active release therapy. It did work very well. Basically, my therapist told me to push my neck/head against the pressure of her hands (I was laying on my stomach). Now, that would normally raise a lot of red flags for someone with FM. But she told me to only use about 5% of my actual strength in my neck. Then I would take a deep breath and on the exhale, I think, I would lift my head against her hands. She would tell me if I was pushing too hard. She could always feel a big difference in my neck afterwards and the effects for me seemed to last longer than just a massage. It was very gentle and I got the impression that my therapist would not have continued through any pain that might have been raised.
    sebastian_16 replied to Anon_10089's response:
    Hello MiMi, Nancy & Anon_10089 - thank you all very much for taking the time to reply to this topic! MiMi, thanks for helping to get Nancy's attention. Nancy, thank you for such a thorough reply describing your situation, what you've found has helped you cope better (nutritional supplements, hydration, trigger point injections, survival manual, and toolbox you created) I am sure these tips will be sure to help Jennifer cope better with the MPS component of her pain. I'm not sure if I'm doing something wrong, but although I see where it says Toolbox, it doesn't seem to be a link when I place my cursor over the word. I'm anxious to look through the Toolbox though just not quite sure how to access it. Anon_10089, thank you for describing your experience with manual active release therapy as it helps to confirm it's helpfulness and that it is in fact a gentle technique.

    All of your inputs are very helpful and appreciated!

    I had hoped there might be more out there who have tried SCS, Myofascial Release, massage, neuromuscular techniques, manipulation, craniosacral therapy, or other types of manual active release treatment/therapy techniques and might report back on this topic for the benefit of Jennifer and others here to consider trying to reduce the MPS pain component/side of FM, but this is a holiday weekend so I would imagine many out there may be out of town or busy spending quality time with family, friends, etc.

    Nonetheless, I am very grateful to MiMi, Nancy, and Anon_10089 for taking some time to respond, all input from anyone who's tried manual release therapies or knows of others who have is greatly appreciated!

    Have a great weekend! I pray that all with FM, MPS, & all other pain will get a well deserved period with little to, ideally, no pain whatsoever!

    May God bless you & yours - thanks again!

    Cheers, Scott
    sebastian_16 replied to sebastian_16's response:
    Oh, and although it's no biggie, I should mention again that Jennifer and I are just friends, not lovers. I only recently met her, but the day I did she melted my heart which had been rock hard for nearly 20 years. To me, she is truly an angel!
    dollbug replied to sebastian_16's response:
    Scott, below is the link to the *toolbox post*....
    Just click on it below....I checked to make sure that it works.


    booch007 replied to sebastian_16's response:
    Good morning Scott,

    Glad Mim gave you the link to the toolbox. I am so computer challenged. But I want to mention that my manual work was for about 5-6 years and the efforts didn't pay off for me.

    I also did spray and stretch prior to an adjustment by the chiropractor. The fit for me is not always going to be a fit for another. But I needed to share.

    The stages of this are first getting diagnosed as the hardest.
    The next hardest is the fit of the "physician champion" that understands this and is your partner to make it better.

    The next issue is the "trial and error" of meds to lower the pain threshold. We most often use a muscle relaxant, a pain med ( I used Motrin and then to now tramadol as "ultracet" and then somehting for brain chemistry. Some use Cymbalta, wellbutrin, prozac.....I use savella as it doesn't raise seratonin as much as it does norepinephrine. It was a perfect fit for me. Then the supplements. Magnesium meaning alot to me. CoQ10 to help the muscle mitochondria for energy efficiency. Vit D.

    Then after the trial and error period the stage of good habits and "good day bad day" health.

    I am in a low day today, so I am staying under radar...hee hee, I overstepped my line with the grandchildren. Pulling them along in the pool. No adult would go in, so I jumped in and was the life guard. "Yay Nana" now I am hurting and need this day to regroup.

    You learn the path eventually. But life can be full and we can be in it.

    Good luck with your helping your friend. Still would like Jennifer in here, so we can hear her issues she faces.

    Nancy B
    maryalc responded:
    Hello Scott, I've had CfS/Fibro for many decades. Have tried many therapies. For me the best seems to be cranial sacral and reiki. I am also getting acupuncture right now. One thing for sure, deep tissue massage made me worse. Also too much exercise. Anything too much! It's hard to find the right amount. Try and see how it works. I have gone on and off supplements. It seems my body gets used to them and they don't help. I'm trying MSM right now, but more for arthritis. I'm not convinced anything is or is not the right answer! Try and see what feels right for the individual person. Mary.
    sebastian_16 replied to maryalc's response:
    Hello MiMi, Nancy, and Mary. Thank you all for taking the time to reply to this post. MiMi, thanks for the link, apparently I'm computer challenged a bit myself like Nancy! I am sure the Toolbox post will prove to be very helpful to Jennifer. She has had a really rough few days or so as her meds automatically come to her through the mail, but she did not get hers before the holiday weekend and was out for a few days. Ambien especially set her back as she had many painful, sleepless nights and now recovering has been challenging for her. Nancy, I'm sorry to hear about your 'low' day following your pool excursion with your grand 'babies' - I can imagine you knew you might pay the price a bit the next day but decided to enjoy the moment anyways. Reminds me of day a few weeks back when Jennifer enjoyed a 'girls day' out with a friend starting out with a mani/pedi then trying on several different clothes later - she was enjoying her bonding time (girls bond, right?) and suspected she'd pay the price the next day, which she did, but decided to enjoy the good time she was having. Not having FM myself I can't totally relate, but still feel for those of you who do since it must be difficult to have to pick & choose what you will/won't do based on the potential price you may pay the next day, maybe two. Thanks for elaborating more Nancy on what you've found works best for you. I do think that Jennifer is interested in introducing herself here soon, and I'll continue to try & encourage her to join up and share some of her issues with FM, but as I mentioned earlier she had run out of Ambien and also Cymbalta for a few days this weekend when they didn't arrive before the holiday weekend like they should have and she is still dealing with getting back to managing her pain as a result, a big setback for her. Hi Mary, and thanks for sharing the manual therapies that you've found helpful & also how the deep tissue massage negatively affected you. I'm so sorry to hear that you've been afflicted with CfS/Fibro for many decades. I'm starting to see the importance of doing everything in moderation since stumbling upon WebMD/FM Community and reading so many helpful comments left by so many wonderful people here! I'm trying to encourage Jennifer to try the multi-vitamin with D3 and B100 supplements, but she's had stomach pain in the past when trying to take a multi-vitamin so is a bit reluctant. I suggested trying to take with food/milk since I know its recommended for Ibuprophen products like Advil & Moltrin. I'm hoping when she does try the vitamin D & B supplements that they will help her as it seems as there are many here who have found those 2 in particular to be very helpful with reducing pain & gaining energy a bit, in addition to the added benefits from Magnesium too.

    I'm going to start a new post here in a few minutes where I'll be asking those who have FM & have tried to increase their pH levels through nutrition & what benefits they may have noticed as a result. I know, the new guy & all his wonderful ideas for something he doesn't even suffer from. Oh well, hopefully I won't upset too many with my optimistic outlook for trying to find something outside of the 'normal' medicine world that may be helpful to Jennifer and hopefully others out there suffering from FM.

    Take care all & thanks again for taking the time to reply!

    May God bless you & yours!

    Cheers, Scott

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