Support fibro awareness...NOT!

I saw this floating around on FB and wanted to scream. And then I thought...waitaminute...this sounds like a good TMS description.
But even still....my days of identifying with fibro sufferers are OVER. (Compassion, yes...identification...no.) I refuse to buy into the industry and the script.

 

Hi North Star, just wondered if you think your Fibro is TMS? I have no pain in
the upper body at all, fibro is widespread with so many points of engagement.
Do you have symptoms all over? From what I have read even Dr. Sarno says
that Fibro is TMS. I hope you are doing great! Nancy

 

*sighs softly* This description, the wide spread pain, the mental fog that rolls in, the periods of complete exhaustion, then focused energy, the genetic history of having a father who was also diagnosed with fibromyalgia (I did not know this until about 10 years ago), the muscles, tendons, the intestinal disorders, sleep ... a month ago to see this flyer would have given me relief to know that I am now believed, that my pain is real, that I am validated.

Honestly, learning of TMS/MBS is still messing with my head. I have been disbelieved all my life. Told to 'toughen up'. Now the world is recognizing this condition ... and it's not true?? This is almost too much irony.

If it were not for this forum, I would tumble happily into that other reality.

Instead, like The Matrix ... it would seem I am going to accept the red pill, and take the harder road.

North Star, thank you for posting this.

with grace and gratitude,
^_^

 

Nancy, I was diagnosed with fibro. Like Lily Rose, I was relieved...thought, thank God, I'm not insane. And then the hopelessness set it. Is THIS what I have to look forward to? I was getting desperate trying different pain meds...NOTHING was working...not even narcotics.

When I read about TMS I can't even begin to describe the excitement. Like I was being awakened from a bad dream to a wonderful party. Okay...maybe a little exaggeration there but if I had the energy....it would have felt like that. I IMMEDIATELY rejected my fibro diagnosis and ditched all my physical therapy toys. (Orthotics, heel lifts, RX ointments, dental appliance....all of it....GONE.)

I posted that because the docs can offer no cure, no hope really. But of course, Big Pharma has plenty of drugs to offer you. (Lyrica, anyone? The side effects were dizzying.) And little of the literature acknowledges the mindbody role other than a cursory nod to "stress can make it worse".

So my reaction to it initially was just plain anger. I know many dear women who have been diagnosed and it angers me that they've resigned themselves to this bleak outloook...just like I did.

TMS is entirely treatable. It's a journey but it is a hopeful one. And yeah, the "fibro" variety of TMS does seem to have some extra challenges (Sarno says it's an intense version of TMS) but like I said, I will no longer buy into the fibro script.

I hope that encourages you ladies. We will get through this!

 

North Star, I really was trying to be encouraging to you. I personally know of
all of my tensions all my life, that's why I believe in TMS. I was trying to give
you hope as I know you will be fine when you get this all worked out, as will
all of us be. We will get through this together! Nancy

 

Thank you, sweet Nancy. And yes...I could hear your encouragement. I just thought I should clarify, forums are great but they do have limitations, eh?
I just want to shout it from the rooftops to all fibro sufferers that it really is TMS and that there IS hope!

 

If you were to shout from rooftops, likely a mob would form and you would be flung off the roof amidst screams of outrage. On this journey we call life, we are all at different stages of learning. Like being in school. Some are just beginning in kindergarten, some are 3rd graders, some juniors, some in first year college, and so forth. If you try to tell a first grader about algebra, they will likely just get frustrated and even angry. It isn't their fault ... they are just not ready yet.

Rather than shouting, sprinkle seeds. Leave a trail of those seeds. As time goes on, those seeds become flowers, and perhaps they will pick those flowers. Then they may wish to create more, so they will carefully harvest the flowers so they can replant and enlarge their crop. It is a slow process. A gentle progression to allow acceptance.

It is easy to get frustrated with those that won't hear your knowledge. I have learned such with my Mom. I slip, and try to force the knowledge through, then realize her walls get more fortified by my pressure. When I can remember this, I ease back and just nod, hope the seed is planted, and let her be. Above this, I just offer her love, whatever her choices. I struggle with my own expectations in this. I want her so badly to hear me. I am also learning this creates its own angst. My expectations. It is expectations that can intensify our own pain. We have to take care where we set those expectations. Intentions, on the other hand, this is a softer goal. It allows for simply doing the best we can on any given day.

Thank you for the seeds you scatter. You are a lovely gardener

This applies to you, as well, Nancy ... I find that this entire forum is a collection of unique gardeners, each with their own style and choices.

with grace and gratitude,
^_^

 

Ain't that the truth, Lily Rose! That's why I shouted it from the rooftops here in the forum.

As I get older, the more I realize my only call in helping others is to simply love and accept them. If I can help them in a practical way or journey with them in the process....it must be at their request. And only when there is a safe space in our relationship. This doesn't happen often!

 

Hi, girls. Steve says (p. 10) of his book,
"Tension can find its way into any and every system of the mindbody; however, the TMS tension as originally
characterized by Dr. Sarno focuses on three types of soft tissue: muscles, nerves, and/or tendons.
Any one or any combination of these may be involved. If pain is present in multiple areas, TMS is labeled as
fibromyalgia or myofascial pain syndrome(MPS). "

Pill pushers don't want it shouted from the rooftops that fibromyalgia comes from TMS, but as we know,
although it's a tough one to cure, it can be done.

 

People heal from fibro all the time since it's not a disease: it's an effect. Just because it's in "multiple sites" does not mean it's a whole and separate disorder. It's still pain, from the same mechanism (oxygen flow). Dr. Sopher used to tell me that patients would often get angry when he told them they weren't that unique. They would be offended if they didn't have a special problem.

The frustrating thing is to see people heal from fibro regularly, and know it, and still have people say it's not true. Even more difficult is to watch people like Dr. Darria Long Gillespie on Dr. Oz talking about how fibro can be deadly if not treated properly. She then goes into the same medical school talking points that got everyone into this mess. Thank God for the good doctor.

MDs have the floor, they can say anything they want to without accountability. I can't get on those TV shows because I'm a nobody. But I receive quite a few emails from people who have healed from fibro. I got the best one I've ever received last night. Twas a good night.

People can heal if they can get past their doctor's insidious advice, and take their healing inward. Healing from fibro has nothing to do with bloodwork, ANA panels, nerve conduction, urine tests, or tea in China. My apologies to the Chinese folks for the comparison.

I was told by one fibro sufferer that her doctor told her that she would "have to live with her pain, since fibromyalgia is incurable."

She sent me a nice photo of her golfing 2 weeks ago, with a big smile on her face--pain free of course. It made me smile. I printed it out.

Steve

 

Thanks for chiming in, Steve. And those of us who've read and have been ministered to by your book, you're far and away from being a nobody!

After I learned about TMS I quit a few fibro "support" groups on FB. They were more "look at how horrible we have it but we'll be grateful anyway" groups. Hear my heart, I'm not disparaging anyone; I was part of the group too and more than once chimed in my positive confession while I was popping a handful of NSAIDS. There's a culture there that just continues to feed the misinformation and helplessness. God knows I did my share of perpetuating my personal drama.

Today, another dear friend posted a meme that stated something like "Fibro is real and the pain is HELL". And of course, other friends offered their sympathy. I occasionally post about TMS and usually get nodding heads and a little agreement. But beyond that...nothing. But of course, the first time I read Dr. Sarno's backpain book, I threw it across the room and continued on my pain-filled journey for another 10-years. When the student is ready, the teacher will appear, eh?

I'm a work in progress in my healing. It's messy work but going back to fibro land just ain't an option for this girl.

 

Hey North Star, did you read my GPD pamphlet? Are you a current member of fibro groups? They ran me out of all of them. I was talking about permanent healing to them, and they didn't want to hear that crap. Misery loves company.

From the very beginning I didn't want to talk to people about my pain, or to manage it. I wanted rid of it. So I got aggressive with my healing. If people want to heal I try to help them. But in their defense, many are not ready to heal, they need the distraction. That's ok too, only they know the hurt they've seen, and why they need to divert their emotional pain. God bless em.

I spent a decade helping people in many forums under many aliases. Some may remember me as Kwai Chang Pain, or "The Duke" John Payne, The Pains Fall Mainly in the Vains, Saddam HuPain, and The High Pains Drifter.

I've been talking about the value of support groups for years, they are invaluable, to a point. They provide information, which is good if the information is accurate. The notion that "everyone's voice is important" can be very detrimental to healing. For example, I've had people tell me recently that they heard, in certain TMS forums, that tension has nothing to do with TMS. I ask them where they heard that, and they say... " ___forum." Another one they've picked-up at forums is that you have to uproot the exact cause of your pain, or it will never go away, etc. It then takes a lot longer to pull that false information from their seahorse-hippocampus.

There are dozens of other examples of poor information being handed out, all in the name of, "everyone's voice is valuable." So be careful what you believe, and that especially goes for fibro groups, for some of the reasons you stated above. "Fibro is real!!" Well, no one says it isn't real. When we speak of TMS, people only hear, "it's all imagined!" But, no one ever said that any of this was fake, that's just what their egos hear. Pain is real, even if it's imagined.

Now--on the other hand, it's vital to hear the worries and experiences and questions from other sufferers in forums. Lesson 137 of ACIM says, "when you are healed, you are not healed alone." That is true. I was helped by many others too, but I was also setback by others with bad advice. So take what you hear for what it is, and for who said it. Are you getting advice from someone who doesn't know how to heal? I wouldn't take advice from a man on the pain of pregnancy.

Then you have the obvious--forums where they only want to complain about symptoms, and wallow in self-pity (is wallow a word?). That aspect will fortify your own problems, strengthen them, and bind you to suffering. The attitude of, "we'll get through this together, as long as we listen to each others problems" can be harmful. You don't sit down with an alcoholic over a drink to talk about how to stop drinking. So motivation is a highly important factor in healing.

I try to give people enough to move ahead without listening to them complain. But I will say that in the end, I can see that it all boils down to two major states: people only want to know if someone cares, and loneliness. I can point to those aspects in most people who have a syndrome.

Be well star of the north, don't shine too brightly,... oh go ahead!

Steve

 

Steve, Nope...haven't read your GPD pamphlet, where can I find it? And no, not a member of any fibro forum. I subscribed to a few feeds on Facebook but dropped those when I found out about TMS.

I love the value of support groups but have always been a bit cautious with them. As a matter of fact, I fought the fibro diagnosis initially because I could seen the complex and dark emotional nature at work in the lives of friends with fibro. (I have since completely rejected the diagnosis.) Self destructive or self-defeating human behavior has always fascinated me. But I know when depression and hopelessness set in it casts a pall over everything.

Some of the books that were recommended to me on fibro were so gloomy I thought "Gah, no wonder you're so miserable!" Again, not throwing rocks here but observations mirrors your's...some folks just don't want to or aren't ready to heal. (Chemical sensitivity is another interesting topic, btw.)

Love the monikers you've used...especially Kwai Chang Pain. Hubby and I used to watch David Carradine back in the day....

Thanks again for all you do, Steve. Your book is top on my list for recommendations for those who are interested.

 

Steve, I've watched a few Dr. Oz shows and find it's mostly entertainment with a medical slant
that can't be trusted. Everyone on it is selling something.

And Oz and others think that it's only "safe" and "certified" if a doctor or PhD is selling it.
America and probably the entire world has gone "doctor" happy.
When I started as a reporter at the Chicago Tribune years ago, they still followed the rules
of publisher Col. Robert R. McCormick. There were just a few but one of them was
not to identify a PhD as "doctor." That reserved for medical doctors and dentists.
Now ever academic with a PhD is called a doctor. And talk shows and book publishers
think only MDs and PhDs are "safe" and "authentic."

I ran into that problem when I wrote a book about Abraham Lincoln.
The academic Lincoln crowd discouraged publishers from taking it,
because I was not one of them and wasn't a professor.
I got it published anyway, ten years ago, and am about to write a new forwardd
to the book telling how the academics shot it down.

That ought to relieve some of my TMS. Fighting back when you're in the right
can relieve a lot of stress.

We love your postings, Steve.

 

Sorry North Star, I made a joke that didn't land--ugghen. Hey, I'm 50/50, not bad for an amateur. A TMS psychologist read my book recently and said, "Steve, that's one hell of a pamphlet you've written." The joke of course was that it was so comprehensive. So I've been using the term pamphlet, jokingly.

I have all the Kung Fu shows on DVD. I quoted a line in the pamphlet from the episode entitled, "A Praying Mantis Kills," which is one of my favorite episodes. "When you cease to try to understand, then you will know, without understanding." This still holds true for healing from TMS. It's only when you stop trying to heal, and trying to understand, that you suddenly know, and it becomes part of you. There's no further need to try, or to understand. It simply is.

I had sections on chemical sensitivity in my book, before editing cuts. There was already so much controversy surrounding TMS that we decided to not add more. Many of the docs know that CS is part of the mindbody process, like allergies, and others reject the notion.

Walt, once again you are spot on. How could you stay single all these years? Maybe because you ARE so smart, haha. A doctor is a medical doctor. No one else should call themselves a doctor., they simply have "doctorates" in their fields. But our culture has changed to accept the notion that anyone at a certain level of schooling is a doctor. It's just as you described here Walt, for authenticity, safety, and prestige--to add apparent value to the topic at-hand. Medical doctors have a very prestigious position dealing with life and death, and so they should stand out, and above things like 'doctors of volleyball.'

But--if I had my doctorate now, I would be using it to get on TV too, to push this great cause. I looked up that David Hascom-Oz show on my cable, and it says it's on at 4PM Thursday here, Forest? Where did you get 3? Is that an ET zone thingy, vs. an almost ET zone thingy? Maybe my cable has it wrong and it will change on Thursday. I told Dr. Sarno they had better mention his name on that show, or else. But many have taken his work and cast him aside, adding their own monikers. I guess that's part of being a doctor too.

Steve

 

LOL....oh yes, the pamphlet...I devoured it cover to cover and am still picking it up and reading bits and pieces among the 15 or so other books at a time I frequently have my nose in. (That's a joke, I usually only juggle about 3-4. Guess I have a touch of ADD.)

Walt, the PhD/Dr. distinction was one of the first things I learned in the Chicago Manual of Style when I started freelancing. So it's something of which I'm mindful. I was more than a little perturbed when I bought a book on ADD by a "Dr." only to find out it was a fun nic-name. The fact that I had to dig for that information is what discredited him in my eyes. I get annoyed when chiropractors hide their credentials too. Especially when they're writing on medical research. (BTW, I used to be a nurse and enjoy reading medical stuff.) Uh, oh...I'd better not start on some of my pet peeves. I'm not so pedigreed that I want initials before I give credence to anyone's field of expertise but by golly....don't try to mislead me though! I guess it's part of the nature of beast and the times in which we live. Some (many?) folks can't think without an "expert" telling them what to do.

Which leads me to Oz. I enjoy watching his rapport with the audience but between him and "The Doctors" show, it's about the biggest fear-mongering gig going today. I have people in my life that hang onto every fear-ridden warning and it makes me want to shove railroad spikes through my ears when I'm subjected to them.

Steve, how did you know I have my PhD in Volleyball? That's DR. North Star to you! hahahaha- just kidding, just kidding!

Okay...seriously. Why shouldn't you be on TV even sans doctorate? Your expertise is well established and you've got some darn impressive endorsements. I speak and coach on ADHD but my platform is built on my experience as a parent and the massive amounts of reading and writing I've done. Granted, you won't find me on Dr. Oz anytime soon but WHY NOT you? Just musing aloud...

And PS....like Walt said...I love your posts. It's a privilege to have you hanging out here. Thanks!

 

Hi, Related to this topic, a couple of years ago I started posting on BeginnerTriathlete.com's forum for Injuries. I noticed that there were so many people with back, knee, feet pain that I thought I could help. I didn't think I was "shouting from the rooftops" but I was giving people a healthy dose of what Mindbody and specifically TMS was all about. I didn't expect the reaction that I got from the forum admins. They deleted my posts and must have complained to the owner because he then sent me a personal message asking to to stop or he would ban me. He said people were complaining and saying that I was repeating the same information over and over. Well, yes to some degree, but isn't that the same as everyone recommending the same surgery or multi-disciplinary approach to each other? He had no answer to that.

Frankly though, I think the complaints all came from one admin. It turns out that one of the admins is an orthopedic surgeon so I'm pretty sure she was annoyed and threatened by what I was doing. However, that being said, some of my comments within other people's posts have not been deleted and over the last couple years I've had a few people contact me privately asking for more information.

I've since taken the much more softer approach of posting once in a long while... as in every 6 to 12 months. Usually, I'll link to an article, video or something relevant to TMS/PPD. I haven't had those posts deleted so I guess in very small measured doses, I'm able to get the message out, drip by drip.

Enrique

 

I know what you mean, Enrique. I'll stick a finger to the wind and it isn't often that the breeze is favorable to hearing about TMS. It's sad really.

My 17-year-old dancer has recently been afflicted with shin splints....something that devastated me for over 10 years. So I CRINGE at hearing her say the same stuff I said all that time. I've been talking to her about TMS and hope it sinks down into her heart. It's heartbreaking to me as a parent knowing I modeled the traditional medical model for all these years of PT appointments. But it's also maddening because everyone STILL head for the same ole same ole cow path...as ineffective as it all is. (I had the best orthos in the business evaluate my shin only to shrug and mumble something like, "Those are hard to treat. That'll be $400 please."

She's also seeing me take back my life and go back to hiking and loooooong walks.

I'm often reminded of the movie The Matrix. Some folks don't want to awaken - the cost is just too great. (Especially if it's an orthopedic surgeon, eh) And they'd rather die defending the beast that eats their lunch than to change.

In the meanwhile, I just try to be kind to people and hope that can help them on their journey wherever that may take them.

 

The Matrix analogy always makes sense to me when it relates to TMS. Also, what you say about your daughter hits home with me which is why I react VERY differently than my parents did when he comes home with an injury. The other day he said his neck hurt after a hard slide tackle in soccer. He could barely move his head. He was a little scared. I told him there's nothing to worry about and the pain will be gone tomorrow. Sure enough, after school I asked him how his neck was and he said it was fine!

 

That's just super, Enrique. I have to train myself to do that as a first response when one of my kids get hurt. I know I will have plenty of practice to get really good at changing my response! (I can still hear my attorney friend informing me that soft tissue injuries take a few days to show up. GAH! Oh, the people I have seen crippled by whiplash....to say nothing of all those profiting from it.)