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 TMS success story: folliculitis decalvans

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T O P I C    R E V I E W
Sky Posted - 08/07/2009 : 15:17:42
Hey everyone,

I have another TMS success story: folliculitis decalvans.

Folliculitis Decalvans ("FD") is a scalp condition where, basically, your immune system attacks your scalp, beginning at a central point and spreading outward. Inflammation emerges around hair follicles, leaving itchy red skin, then crusty bumps, and then scars, which permanently cover each follicle and make future hair growth impossible.

I think I've had FD for the past 3 years (it moves slowly though so no apparent baldness). I first noticed it about 6 months or so after my RSI pain from typing had completely disappeared. Was it a substitute illness, manifest by the same toxic brew (pressure, insecurity, fear, anxiety, and anger) that caused my RSI? I wouldn't be surprised.

I waited two years or so before taking of my FD. I figured it was TMS and if I just kept working on improving my emotional health and stress, it would go away.

It didn't though. My RSI pain had vanished, but I still felt considerably anxious and stressed, and my itchy and bumpy scalp persisted. When my ex-girlfriend, a 2nd-year med school student, called me to tell me that these bumps might lead to baldness, I immediately saw a dermatologist. (google images of scalps with FD: http://is.gd/1EmNr)

The dermatologist confirmed I'd go bald if I left the condition untreated. To get it under control, he gave me steroids to reign in my immune system over-activity.

In the meantime, I suspected stress and emotions were at the root of my immune system acting out of control.

Thankfully, I had just started seeing what has turned out to be a phenomenal therapist here in New York City named Abe. Abe is quite different from your normal psychologist/psychiatrist.

Most therapists do one thing with you: talk. They come to know your history and personality, and they question the assumptions behind your unhappiness, as well as the motives behind your decisions.

There is value in that approach, but you may know a friend or two who have spent years and years in this type of therapy, and you can't notice any tangible difference in them.

While many enjoy the weekly hour spent with a therapist because it feels like the only hour in the week when they can be truly honest, they still may not see tangible changes in themselves or their lives.

Working with Abe, by contrast, is more than talking. It's doing.

What does Abe help you do? Experience, and thus release, the pent up emotions that are the barriers to you experiencing an engaged, loving, and lively existence.

While Sarno points out the source of TMS - repressed emotions, Abe taught me how to release them.

How?

To start, he highly values borders. If you imagine yourself as a cell and your mind as a cell membrane that decides what's healthy and should be brought in and nurtured, as opposed to what's unhealthy and should be kept out, then you can see how vital it is to nurture healthy influences (i.e. the love of your spouse, friend, or job) and to keep negative ones out (advertising messages that make you feel ugly).

As I talk to Abe about the things that feel most important, and troubling, in my life, he often stops me. He'll ask me to maneuver the physical objects in the room in order to create a border around myself.

Then he'll say: "put Troubling Person 'X' OUT. Imagine 'X' is outside of the personal space you just created here for yourself." Oftentimes instead of putting a person outside of my space, he'll have me put a certain negative influence on me, such as Pressure, or Perfectionism, outside of the space.

Then Abe will ask me: "what do you want to say to 'X'?"

At first I wasn't that comfortable with the exercise. I didn't know to say, or if it would help. I didn't buy in.

But Abe would gradually guide me through it. He'd give me a few words to get started and then, especially as I got more comfortable, I'd ad-lib according to what felt most true for me. To give you an example of what I say to pressure and perfectionism, which are two of the demons that often overun my life, I might say something like:

"Pressure, when I give into you, and let you run my life, I lose my sense for what I love about life. I don't even perform as well."

Abe would often stop me and ask me to stop momentarily and to take a deep breath into my chest. He saw breathing as a way of letting your body and mind process the progress you were making. Every yogic tradition came back to the breath, he would say, and he recommended this type of deep breath whenever I found my thoughts overrunning my life and my body feeling especially anxious, whether I was in his office or living my life outside it.

Then I'd continue: "Pressure, when I give into you, I get nervous. My heart starts racing. I'm more irritable with those around me, and less patient. My jaw gets tight, and my skin and scalp start to act up. I don't like my work, and I respond to adversity with less resilience. I'm more likely to see the circumstances of my life in a negative light, as opposed to a positive one. I worry more, and I become compulsive, about my thoughts or my habits. Pressure, get the **** out of my life."

Deep breath.

Taking a deep breath before allowing it to fully exhale was a foolproof way for me to immediatley shift my focus out of my mind, and back into my body. This was key, for me, because I was given to becoming obsessive about thinking. Abe suspected this constant, compulsive thinking was a distraction, a way to prevent myself from feeling painful emotions of guilt, anger, resentment, and hurt that I had inside, and that I feared.

(When I asked Abe about a friend who had an eating disorder, he immediately guessed that she was using food to run away from certain emotions.)

As I kept doing this exercise each week, I started to notice a difference in the way I felt toward these troublesome people and issues. I found they didn't run my life as much anymore. I felt a little more autonomous, and a little healthier emotionally. Slowly, my habits of compulsive thinking began to fade.

I began to experience life without the barrier of my compulsive thoughts getting in the way.

With Abe's encouragement, I let myself enter into a romantic relationship that, without him, I would have quickly run from. I would tell him my reasons why this person wasn't good enough for me in my judgment, and he would laugh at me. "You are full of ****," he would say, smiling compassionately. "You are just afraid of connecting with someone." I stuck with that relationship, and it blossomed into a beautiful 4-month relationship before we both had to leave town for outside reasons.

Why would I have been afraid to connect with someone? When you carry emotions and parts of yourself that you fear, and that you bottle up, connecting with someone else is likely to open them up, and somewhat publicly in that it's with another person. It can just be embarassing, and embarassment hurts.

Abe began doing other exercises with me that helped me release pent-up rage. I told him how my jaw often felt tight, and he immediately theorized it represented repressed anger. He demonstrated the stereotypical scowling, angry face, to show the jaw muscles' vital role in carrying and displaying anger.

After a while, Abe began to have me hit pillows while talking forcefully to the objects of my repressed rage over the years. The exercise allowed me to experience my own real anger, in the safety of his private office, and to see that my natural feelings of rage and resentment were not something I needed to fear. As we continued to get me to experience the anger in healthy doses in his office, it began to release. Fitting with Abe's ideas, my compulsive thought began to ease as well.

"Energy doesn't disappear," Abe would say, repeating one of physics' fundamental truths and applying it to emotions. If you try to bottle up the energy of an emotion that you fear, instead of feeling it, it has to go somewhere: to your hands or back in the form of chronic pain (sound like Sarno's ideas on TMS?), to an overactive immune system targeting your hair follicles, or to compulsive thoughts that override your experience of reality and prevent you from feeling your feelings.

Punching pillows while verbally exerting my rage, through grunts and forceful language, enabled me to tap into the energy of my repressed rage, to experience and express it. By expressing it, I was able to release and be free from it.

Today, I can do the work I do with Abe even without him. During more stressful days, I will find moments of solitude and "put troublesome influences out" of a personal space that imagine around myself. I'll talk to the negative influences, tell them about their negative effect on me, and make sure they realize that their effect on me will be no more. I've also done some punching on the pillows in my own home. I love that I can take a deep breath, shift my attention to my physical experience of life, and give air to my repressed emotions, both with Abe's help and on my own time, whenever I feel I might benefit from it.

---

This past week, I visited my dermatologist to learn about the progress of my scalp condition, folliculitis decalvans.

As my itching had begun to subside, I had become lazier and lazier about using the steroids he had prescribed me. The doctor said it had almost entirely quieted down and didn't think any more medications were needed. I'm lucky that the scarring on my scalp isn't at all apparent, and the hair I still have easily grows over it.

I told my doctor about my work with Abe and handed him his card, recommending he pass Abe on to any patients he thought he could talk about the mindbody connection with without sacrificing his professional reputation.

I wasn't surprised to learn my scalp had almost completely healed. Abe's work with me has helped me feel better on a phenomenal number of levels, not just physical.

I don't get so wrapped up in compulsive thinking. When I feel stressed, insecure, and insufficient according to whatever standards I have bought into throughout my life, I can take a deep breath, and return my focus to the present in the way Abe has taught me: to notice the feeling of the laptop keyboard keys under my fingers, the sensation of my feet on the ground and my butt in my chair, the cool breeze blowing on my neck from a nearby fan, the soft way my shirt drapes over my shoulders.

I can move out of the mental and into the physical, which always exists now, in the present.

I find myself being more spontaneous. More likely to engage strangers in conversation, to dance at a party, to crack a joke at any moment. Even my athletics have improved. I'm simply more relaxed, less anxious, more confident, and ultimately, better at the sport. Romantically, I'm less wrapped up in anxieties and more able to feel, and enjoy, myself and others.

I also feel less stress about body image, career plans, and all of the other infinite ways in which I've been given to judging myself negatively and feeling less well as a result. I don't feel the same compulsion I used to to always know and read everything possible.

More and more, I can just be me, and comfortable with me, without having to put myself down or do something to improve myself.

So, that's my latest TMS success story. I do still carry my insecurities, compulsions, and physical stress-related disorders, but the progress I've made on all fronts has been spectacular and only reinforced my sense of the mind-body connection. I'm looking forward to more success in the future!

If you're in New York and interested in working with Abe, here is the flyer he sometimes posts on the street, which has his contact information.

***

ARE YOUR THOUGHTS CRIPPLING YOU?

Get out of your head & into your self

BODY ORIENTED THERAPY

Integrating breathwork, bodywork, core emotional release and verbal dialogue to move through old patterns and enhance the sense of self and feeling of aliveness in the present.

FEEL YOUR ALIVENESS!

Reasonable fees
Information and Appointments
212-982-1345
917-355-2500
waldabe@yahoo.com

ABE W@ld has maintained a private practice in Body Oriented therapy, emotional processing, and breathwork for the past 15 years. He is certified in Integrative Body Oriented therapy, the Hakomi Method, Shiatsu, Deep Tissue, and Trager bodywork. He has extensive personal experience in Gestalt, Bioenergetics, Primal, psychodrama, Hatha Yoga, and a vareity of other bodymind modalities. He also brings to his practice 25 years of experience in movement, theatre and performance art.

---

A site I'm building: Pass it on for anyone who might benefit from a brief and clear introduction to Sarno!

http://themindbodyspot.wordpress.com/
12   L A T E S T    R E P L I E S    (Newest First)
Wavy Soul Posted - 09/26/2009 : 23:32:12
great thread, and I'm going for becoming a Type Z!

Maybe then I'll get some z-z-z-z-z's instead of reading all these posts at night!

Love is the answer, whatever the question
Plantweed Posted - 09/25/2009 : 08:50:11
Ha ha, type C-, I have to remember that. Being an achiever and perfectionist is great, until it turns against you.
guej Posted - 09/25/2009 : 08:24:10
Plantweed, I'm with you. I'm coming back in my next life as a very simple, laid back gal. In this life, I overanalyze everything, overprepare for everything (so I feel like everything is under control), and worry waaaay too much about everything and everyone. Prior to this pain syndrome, I used to look down on people who were always late for every affair, who never seemed organized, and whose lives always looked like chaos from the outside. Now I'm thinking....hey, I'm the fool! Those people aren't walking around with chronic pain syndromes! In fact, they look pretty content...

A friend of mine who did recover 100% from a fibromyalgia diagnosis told me that she went from being a Type "A" to being a type "C-". I didn't understand what she meant at the time, but now I get it.
Plantweed Posted - 09/25/2009 : 07:24:18
Ah, ignorance truly is bliss.
winnieboo Posted - 09/24/2009 : 21:31:40
Answering Plantweed's question: it's both.
pandamonium Posted - 08/26/2009 : 04:48:46
Sky, have you received an email from me?

----------------------------------------------------------------------------

A beginner's guide to psychology: If it's not your mum's fault.... it's your dad's...
Sky Posted - 08/25/2009 : 09:25:53
Hey guys, here was a really interesting email I got in response to my post, and she gave me permission to add it to this forum. I just thought it might be of interest to you guys and add to all of our senses about what to DO re: TMS issues, and for the times when we get down ourselves because of them, to see how common they are.

---

I discovered MINDBODY PRESCRIPTION three years ago and the 'knowledge' of TMS and intensive therapy helped dramatically lessen my health issues. I'm you classic abused child with a mentally ill mother. A passive father, etc.

I somehow started to train myself to go get in my car and scream and wail (as to not terrify my young son) whenever I had a trigger. I knew that I needed to exorcise my demons, not just talk about them with my therapist. Now whenever my husband sees me grabbing the car keys, he knows what I have to go do. In the old days I would have to talk with him for hours as I tried to figure out why I felt "sad". This was an intense strain on our marriage.

Over the past three years, I've improved greatly, but sometimes I really really struggle. It seems like the triggers come at me from all directions and the screaming and crying doesn't totally work.

I'm going to try your approach. Although I live in LA, I'm going to give Abe a call. Maybe he can do a few phone sessions to teach me the method.

---

A site I'm building: Pass it on for anyone who might benefit from a brief and clear introduction to Sarno!

http://themindbodyspot.wordpress.com/
Piano5 Posted - 08/10/2009 : 10:10:31
PlantWeed, that's a good question. This sounds so awfully pretentious but I think I'm pretty smart, social, and amicable, when comparing myself to some of the other students at my college.

The problem is, I'm forward-thinking, anxious, non-confrontational, worrisome, and all of those other lovely qualities that seem to come along with the smart, social, and amicable people that hold high standards for themselves. And we all know where that leads...
Plantweed Posted - 08/10/2009 : 07:53:07
Nice post, thanks for sharing. It made me recall something I've been wondering about. Are TMSers "smarter" than the average person, or are we just folks who can't quiet our minds the way others seem to be able to do?
HilaryN Posted - 08/09/2009 : 17:13:34
Sky,

I loved your post - many thanks for sharing your experience.

I'm seeing a body psychotherapist who very much recognises the mindbody connection, too.

Hilary N
Sky Posted - 08/09/2009 : 15:44:13
Yea SarnoFan,

this one is interesting because while Sarno gives you the goods in terms of knowledge, he isn't as good at helping you FIX what's going on with you.

For some just knowing is enough. Most of us need work, and a specific kind of it. My post is long so that naturally keeps folks away from reading it, but it might be really good for all of us to get a little better sense of how we as people can really work through and past these issues.

---

A site I'm building: Pass it on for anyone who might benefit from a brief and clear introduction to Sarno!

http://themindbodyspot.wordpress.com/
SarnoFan Posted - 08/07/2009 : 17:23:01
I am surprised your post got such little attention. I guess the "subject line" was not that popular. The fact that it is a success story is enough to draw interest, in my opinion.

Thank you for posting. This treatment is very dynamic. By actually "practising" how to divert toxic obsessive thoughts to just "being present/feeling" you get at the heart of reversing pain disorders/anxiety/inflammation.

Sarno's approach is Knowledge therapy; with this knowledge we hope to stop obsessing about our pain and negative thoughts. This works for some. But most of us have to be taught and then practise how to do this.

TMSers live in a more elevated stressful state (created in their mind) than healthy, pain free and content people. We need to become aware of this first, and then re-learn how to deal with feelings and coping with the outside world.

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