WRITING ONESELF OUT OF FIBROMYALGIA

This is a post Richsimms22 directed me too. I want to thank him for showing me this great post so we can get the knowledge penicillin out. Thanks Rich, Awesome.

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Fibromyalgia (FMS) is a debilitating mix of pain, fatigue, sleep disturbance, and depression that is resistant to treatment. Part of the difficulty in treating the millions of Americans who fit the diagnosis is that FMS may not actually be an illness.

Rheumatologist Frederic Wolfe, M.D., was the lead author of the diagnostic protocol for FMS in 1990, but he now feels the diagnosis has done more harm than good and is further disabling patients. “Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Wolfe wrote in The Oregonian, January 14, 2008. “To make people ill, to give them an illness, was the wrong thing.” He now considers the condition a physical response to stress, depression, and economic and social anxiety, and cites the unhealthy alliance between physicians and the pharmaceutical companies, among other factors, as contributing to the problem.

So perhaps FMS was written into existence; meanwhile, my colleagues and I have found that patients can write themselves back toward health using narrative medicine, a process of writing and telling our life stories, as well as meditation and spiritual guidance.

In our pilot study, 22 FMS patients were recommended by a local rheumatologist and interviewed by phone. Eleven women and two men agreed to complete an extensive 38-item autobiographical questionnaire, as well as participate in eight weekly, 90-minute sessions that included meditation, writing, spiritual guidance, and an educational component, including discussion and homework. In the end, only eight patients completed the program and a six-month follow-up. Five patients completed 12- and 18-month follow-ups as well. The majority of patients thought the program was too much work.

Nevertheless, the patients who conscientiously adhered to the meditation and writing protocol reported significant relief; others reported varying degrees of improvement. Participants said they appreciated the opportunity to write their life stories and to have someone interested in the complexities of their lives. Not surprisingly, anger and forgiveness of self and others, as well as resistance to individuation, were core issues.

Meditation and writing have both been used, separately, for healing. Using meditation and writing together requires more time, patience, and insight on the part of patient, medical doctor, researcher, and therapist. But the extra time does seem to pay off.

You can find the whole thread here. http://spiritualityhealth.com/articles/writing-oneself-out-fibromyalgia

Thanks

 

Great post, Herbie. Looks like Dr. Wolfe has decided fibro is TMS-caused but may not know that term.
He tells his patients to journal, meditate, and seek spiritual guidance. And that anger plays a big role in the symptoms
and recovery comes from forgiving self and others.

He ought to prescribe everyone read Dr. Sarno.

 

Yes I know, it's a very promising post. I love it -- looks like we're breaking ground for sure.

 

Definitely breaking ground. They abbreviate Fibromyalgia (FMS). They are very close. All they have to do is change one letter of that abbreviation and they will have the diagnosis spot on. (TMS)

 

This is my favourite blog from his site. I posted it before but here it is again. It's about trigger points(muscle knots).
http://www.fmperplex.com/2013/02/14/travell-simons-and-cargo-cult-science/

 

This is just brilliant timing for me to take a dose of knowledge penicillin as I just got back from a walk and have my achilles/shins unhappy. THANK YOU RichSimm22 and Herbie! And Forest for the link to Fred Wolfe's blog.

 

Yes, Richsimms22, just change 1 letter, aint that so cool.
Rich I must have missed something at the link. I didn't see the mind-body part?
Let me know what I'm missing,Thanks pal

 

I should of mentioned there is no mindbody reference in this particular one. I have always found the trigger point model very wishy washy and its very well demonstrated in this blog.

 

Funny (well, not really), I posted this article on my FB wall and one of my friends commented on it. She suffers horribly with TMS but is solidly in the fibro camp. She expressed her interest and skepticism then went on to tell me about her latest medical intervention that is being so helpful. (Until the placebo quits working that is….I've heard it before!)

Made me (and my budget) grateful for TMS knowledge!

 

Saving money sure is one of the blessings of knowing about TMS and that we can heal our pain mentally.

Holy Week before Easter Sunday is usually cold and gray and even snowy. It snowed overnight and is
only around 40 here around Chicago today. Brrr. Good weather to be indoors with a sweater on.
Annie is napping on the couch. I pretend Daisy is cuddled with her.

 

Yep…the winds are icy here. And tomorrow we're expecting a couple inches of snow. I have to remind myself that the grass will be nice and green when it melts off.
Daisy would probably run all around Annie before she burns off enough puppy energy to cuddle. And I bet Annie would take it on the chin.

 

How about that guy Wolfe, he damaged more people than anyone I've run across over the past decade. Now he's changed his mind. I literally have hundreds of emails from people who were given the diagnosis of "fibro-disease." They were all in panic, crying, depressed, and debilitated, from the diagnosis itself. They were in pain but functioning until their doctor labeled them with the crippling word called fibromyalgia. I spend tons of hours trying to reverse the damage he did by telling people they're ok. They fall quickly with the words "fibro" but come out very slowly with the words "you're ok." Reversal is more difficult because the survival response is now engaged.

This is what I tried to convey in my chapters 8 and 9. The archetype of healer has a powerful influence on the deeper brain due to the authority the person gives a healer. If we gave no weight to our doctor's words they would never affect us either way. But sometimes they can save us, so we have to be judicious (no relation to delicious).

Now Wolfe says "nevermind"..."my bad." Ya have to say that at least he admits he made a mistake. That's something I suppose.

Steve

 

The damage that Wolfe has done reminds me of my Chicago Tribune newspaper reporter days.
A story could run headlines on the front page but even a day later could be retracted,
but the retraction often was inside the paper and in almost a small footnote, so few people
read the retraction. If they did, they had a hard time disbelieving the original news story.

I'm sure glad I got out of the news reporting business. Talk about stressful!
That alone probably gave me more TMS than anything, although my childhood also was a biggie,
as you know.

 

Its a shame isnt it steve. All these people living in fear being told they have an incurable disease. Like you said, at least he is honest and holds his hands up and admits hes made a mistake. Most health care professionals aren't interested in any answers and are quite happy making money out of other peoples misery.

 

It may be hard for a lot of people to forgive Wolfe. I hope they can because it can
give them more TMS if they keep their anger about it.

 

I am posting a link to a video of Dr Sarno at a Senate committee hearing



Senator Harkin cured himself of back pain thx to Sarno & then there is a very interesing bit from 18:00 where he talks about a close relative who cured herself from a serious case of fibromyalgia.

Mala

 

I've been a lurker here for quite a while, but this thread has enticed me out of my comfortable hiding to post. I was diagnosed with fibro a few years ago - been in constant pain for over five years now, at first with simple tension headaches, then chronic myofascial pain and TMJ.

I've been immersing myself in Dr Sarno's theory for over two years, and had some small success, but I'm stuck on a high dose of gabapentin, and just can't find a way forward. Last year I tried really hard to reduce my dosage, and did stick to a lower dose for quite a few months, but it wasn't easy. Some days I found myself hardly being able to think straight because of the pain in my head and face, which wasn't good for my tension levels. I think I probably need help to get myself off this drug, but, having discussed this with my doc on several occasions, he doesn't understand my problem. As far as he's concerned, I'm taking the correct medication for my problem - neurological pain.

At Christmas, I became ill with a bad bout of Gastroenteritis, and couldn't cope with both the illness and my chronic pain, so succumbed to upping my dose again. Over the last few months, the pain has become more wide-spread, and it's almost as though I'm becoming more and more immune to the gabapentin. Most days, I'm coping, and I'm doing everything physically I need to do. But I never lose hope of getting off this treadmill.

 

Hi there,

Welcome to the forum

I can totally sympathise with the position you are in. I too had frequent migraines, a constant headache, widespread muscle and joint pain, severe nerve pain, burning skin, and a number of other problems. I was on a long term high dose of Gabapentin, then Lyrica and several other drugs, none of which helped in the long term. I just kept getting progressively worse, suffering many strange side effects too. Some of them I didn't realize were due to the drugs until they had gone.

I don't want pretend it was easy coming off all medication, it took me a little over a year to get completely clear, but it was the best thing I ever did and definitely worth persevering through. I will be 2 years free on June 10th, and with TMS healing I am almost pain free most days. I don't believe you can bring your autonomic nervous system back into balance, which is what TMS healing is all about, until all medications effecting this balance are out of your system. Even then your body takes time to adjust to the change.

My doctor had very little knowledge of the withdrawal effects of the meds I was on, he told me to come off way too fast, so I reinstated a couple of times and slowed down to a pace I could just about handle. I only made one small cut per month at the most. When I made a cut, after about 3-4 days I would start to experience withdrawal, migraines, increased pain, insomnia etc., which would gradually calm down. After about a month or so, depending on how I felt and what was going on in my life, I would cut again then repeat the cycle.

Your doctor is correct that you have neurological pain, however this is TMS oxygen depravation which can't be treated with medication.

Some people have little problem with withdrawal so don't be alarmed by my experience. You can do it ! I did and I'm nobody special.

Carry on with your TMS healing techniques, go slowly when reducing your Gabapentin, you will get free of it in the end. Be kind and patient towards yourself, and you will heal your tired nervous system.

Much love & blessing

 

Hello, new friend! (Sorry, I can't bring myself to address you as "Fool", it's very clear you're not one!)

Like Mermaid, I had a fibro diagnosis. I remember being crashed on the couch, just whimpering from pain. Headaches. Tendon aches. GI upset. Yep…the whole 9 yards. I was on Lyrica for a few months and it did NOTHING for me. (Well, except for dizziness and weight gain.)

My path to healing is very much up and down. Dr. Sarno calls fibro a severe case of TMS and I've come to except that for those of us dealing with this level, healing doesn't come overnight.

I've had several days of feeling normal since reading Dr. Sarno's book last Sept. I no longer walk with custom orthotics or a heel lift. Yeah, I still have flares. Sometimes BIG flares but I know TMS is up to its old tricks and I deal with it PSYCHOLOGICALLY.

Check out Steve Ozanich's book, The Great Pain Deception. I think it may resonate more with you since you have such a severe case. SteveO's "been there, done that" approach will fill you with hope that YOU CAN HEAL!

Please keep us posted on your progress.

Gentle hugs...