Nontypical TMS symptoms - overcoming doubt

Nowa, your fear is doing so much damage to you, maybe more damage than the radioactive substance would do. Good luck with your test, let us know the results.

 

Thank you and best of luck in your recovery!

 

I won't be having the test tomorrow, I imagine it can take weeks to organise, but you are right, I am mad with fear. I have read the book that you recommended about Parkinson's but nothing can stop the fear.

 

Self-awareness is half the deal. By simply telling yourself that fear is what consumes you, you are already taking some pressure off your nervous system.

 

Good post. I do fall into that category of musculoskeletal pain and chronic tendonitis, BUT I have no back pain, so I understand because it creates doubt when everyone is talking about back pain. Then they said "if you don't have any structural issues..." Many of us went to surgeons and got x-rays and mri's, and they said we have structural problems. This is when everything started for me. I've been medicalized and traumatized by the doctors; they are the ones that made all this worse and instilled great fear. And when I hear the TMS groups saying as long as it isn't structural, it creates a lot of anxiety and doubt for me because I go back to thinking, this is structural; therefore, that's why I feel the way I do...it's a vicious cycle.

I think all the TMS supporters are great, but they need to have a meeting to discuss these different symptoms, and to not say "and if it's not structural" and stop making it all about back pain. As TMS'ers, we all anxious people, and if we hear the wrong things, it creates doubt and fear, and it keeps us in a stuck mode. I've made a lot of progress, but it's the doubt that keeps me stuck.

 

People mention that if symptoms change then it’s another good indicator of TMS. What about if you’ve had several inexplicable symptoms over many years that go away but each symptom lasts for months or years? What if it’s that kind of changing rather than frequent change? And of course all the medical testing has been done. Would that constitute TMS? It makes me nervous when I hear people having symptoms all over the place. Mine just move around my legs, although I’ve had many other classic TMS symptoms in the past. Thanks.

 

I suppose this gets into a deeper conversation about the technical definition of TMS, but I think a lot of us here have atypical conditions. While for many, it's clean... back pain started and they journal and the pain goes away and they wipe their hands of the whole thing. Some of us it's messier and the symptoms may bleed over from TMS to anxiety disorder, etc.

I just call it stress disorder. I think Dr. David Clarke called it Stress Illness. (Lack of order sounds better than illness to me lol)

But I think where TMS comes in is the fear of the symptoms, the emotions behind and under them, how the brain can create or amplify what's there, etc.

I also think you're right... the more different symptoms you have, the more likely it's TMS. (Or stress illness)

 

BinLa, I agree totally, TMS is the fear of symptoms etc. and I feel I have control over the fear for awhile and then BAM I think, it’s not gone yet, and I’ve had it for so long, what if it gets worse.....? I’m at the point where doctors can’t help as they can’t even find anything wrong. Lol. It’s not fun, that’s for sure. Thanks for replying.

 

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I SAW THE NEUROLOGIST who said that my symptoms could all be causd by anxiety and trauma but that a diagnosis of FND (functional neurological disorder) is a diagnosis of elimination, and she wants me to have a DAT SCAN to rule out Parkinson's, so I reluctantly agreed, and will have one in a few weeks time and will then have to wait "A few more weeks" to get the results when I see her again, which means a few months more of this dreadful anxiety. She says that she is investigating me for a 'PARKINSONIAN Disorder"AND THE GOOD NEWS IS she has referred me for neuro physiotherapy, for which I have been pleading with my idiot GP for the last 5 years. She says that it wil take months before I get it but that they could come to my home to give it to me.

 

Sorry to hear it but I'm glad you're going to be able to rule out things soon. Do your best not to allow your focus to stay on it. As much as it sucks waiting, it's good practice for us to take control of where our focus is. Do you meditate at all?

Try not to get caught up in the medical loop. Eliminate REAL medical threats, and then we have to move out of the doctor's office... or they'll just keep scaring us.

 

i don't understand what you mean by REAL medical threats?

Yes i do meditate...

 

Nowa, the medical misinformation plus fear, make you see the thing in a wrong way.

Why do you give such decisive power to the Datscan? The doctors don't know a shit about Parkinson's. They have been trying to find the cause and the cure for 200 years and they don't find it because they keep looking at the wrong place.

The dopamine is probably blocked but no one has EVER demonstrated the irreversibility of that blockage. I am convinced that many of us have a malfunction of several neurotransmitters and hormones but that it is not the CAUSE, but the CONSEQUENCE of harmful mental and emotional patterns, some of them unconscious. Dopamine is released when the person feels safe, when he is excited about something, when he is satisfied...

"Parkinsons", "parkinsonian disorder" and FND are nothing more than labels,
if you meet the diagnostic criteria X, Y and Z you have Parkinsons, if you meet the criteria X, Y but not Z you have parkinsonian disorder, etc. And do you think FND is better? Do you think a person with FND feels better than one with Parkinsons? Why? Do you realize that all these are nothing but beliefs?

These labels have the power that we grant them, no more. If you believe it, it will be real for you. It is not about denial, but about the power you give to that label and all the beliefs that accompany it. I repeat, standard medicine has no idea what they are talking about, because they are missing they key piece (the mind and the emotions).

I think it is an incorrect approach to try to "eliminate real medical threats." The mind-body syndrome is reflected in the physical body, no doubt. Sometimes the medical industry has technology to show it, sometimes not. When you are depressed, the brain is probably physically changed, but today it's not possible to show it (thanks god). If we have the physical scan (or analisys, or biomarker, or whatever), then it seems that the problem is more serious. And it doesn't have to.

Even some mind-body doctors are as afraid as the rest of the doctors that they don't dare to see that so many "real" problems are actually TMS (or whatever you want to call it).

"Real" is whatever you think is real for you. If I were you, I would stop looking for diagnoses. With the exception of physiotherapy or any other touch therapy, or psychotherapy, doctors in your case have nothing to offer, only more fear. And drugs of course.

By the way, I take this message to sincerely thank you TG, for your well-written and enlightening book. Good job brave woman! Thank you very much!

 

Well i know thatI would prefer a diagnosis of FND because FND is effectively TMS, and Georgie Oldfield, is refusing to treat me until she knows that I haven't got Parkinson's. and YES i know that a person with FND (i.e. me) would feel a whole lot better with a diagnoses of FND than I would with a diagnosis of Parkinson's. Georgie's reaction has confirmed my worries.

This extreme anxiety is possibly a TMS symptom, because I have had this worry about the DAT Scan etc etc for the last year and the anxiety only started a month or two ago, just as I realised that the dreadful pain that I used to get in my neck shoulders and back had stopped. So I am hoping it is an extinction burst.

 

Is this the first major health scare you've had? If not, how many have you had?

What practical data do you have to prove you have Parkinson's? Does it run in your family heavily?

I guess I'm confused about what you're actually saying. If you're having a test to rule out a condition, that can be scary for sure. But, I'm confused about what's really going on.

 

@Duende , thank you for your excellent post! I agree that diagnoses are just labels in our minds. They can be wrong completely, but they also can be correct, yet, completely wrong about the treatments and outcomes. So many people were given few weeks to live, yet, they completely recovered; so many were told that they have to live with their disabilities, yet, they are now completely healthy. We should never underestimate the strength of a human's resolve to heal. Unfortunately, our fears continue to push us into despair. Unless the fear is defeated, we can never realize our healing potential.

Also, thank you so much for your feedback on my book! I put it on Amazon in search for greater audience. It infuriates me that so many people continue to suffer in hands of the official medicine with no end in sight, especially those with CRPS. I hope to get the word out and help create a momentum for the mindbody approach.

 

As a carer and wife of someone who *has* Parkinson’s, I ask everyone to go gently in their comments. Irrespective of where you stand on the continuum of conditions that are TMS, I think we can all agree that such a diagnosis is at best a terrible nocebo and at worst utterly devastating.

nowa is in a fragile place right now and needs some good old fashioned kindness. We all know the fear that TMS symptoms can create and at these times we are often immune to the sweet possibility that nothing is wrong. My best advice for these times is to dramatically increase our self care in order to soothe our frazzled nerves and listen to some Claire Weekes. She hits the spot every time.

I love the posts on here that are challenging the doctors. We’ve never accepted the prognosis, if we had my husband wouldn’t be here today (listening to football news and scoffing on chocolate).

There’s a great book written by a man called Howard Schifke (and my heartfelt thanks to those who message me with this information. God bless you for thinking of us and reaching out like this ❤️).

Howard cured himself of Parkinson’s. Essentially his healing method was calming and nourishing his heart, body and mind. The emotional work embraced our TMS approach to healing. He also employed energetic practices such as Qi Gong which my beautiful friend @TG957 writes about in her book.

Howard resolved his over-thinking, stressed out body and mind by soothing his nervous system. It’s a fascinating read through the lens of TMS knowledge.
It’s also a brilliant and insightful blueprint into overcoming more *serious*, non-typical TMS health challenges.

Whatever we face, this bone deep, soul medicine is our healing. We simply need to find our own unique way and then stay the course.

much love to you all,

Plum xxx

 

This is beautiful.
We can choose Fear or we can choose Love.

Or as Sarno put it:

Rage:Soothe

Drop the focus on rage and instead embrace self-compassion, self-soothing and self-care.

Or as I put it:

Painleasure *

Gift your body with anything and everything that feels good. Pleasure is a gorgeous thing.

* This happened by itself but is a cute little image of where to take our minds so I’ll leave it be. (Humour, not being so goddam serious, light of heart).

 

Hi Plum,
I expect you will already know about it, but your posting reminded me of the most recent 'Trust Me I'm a Doctor' TV programme on which they did a piece on dance movements greatly helping people with Parkinson's (and dementia and MS). I thought I'd post a couple of links in case anyone's interested in it - this is the programme on BBC iPlayer https://www.bbc.co.uk/iplayer/episode/m000f952/trust-me-im-a-doctor-series-9-episode-5 (BBC iPlayer - Trust Me, Im a Doctor - Series 9: Episode 5) and this is the accompanying article about the piece in the programme https://www.bbc.co.uk/programmes/articles/47RXGLBdT86vWpq42WBKcRW/can-dance-help-the-symptoms-of-parkinsons (BBC Two - Trust Me, I'm a Doctor, Series 9, Episode 2 - Can dance help the symptoms of Parkinson's?).

I think this is so true, Plum. After reading books and forum postings etc., I've discovered that for me it's best to 'mix and match' the information I've gained from others re TMS, to endeavour to find my own way out of my particular TMS hell and, thankfully, I'm just beginning see a chink of light towards the end of the 'tunnel'. Here's to everyone, in finding their own path to feeling better.

BloodMoon Xx

 

Thank you so much for this. I’d not seen the programme so we shall watch it later. I really appreciate you posting this. ❤️

I’m so pleased to hear that you’ve discovered a chink of light. This truly is how healing starts. Follow the light, your heart and your instincts and you’ll get there.

my love and blessings to you sweet one xxx

 

nowa, I consider Georgie’s reply to be utterly sound. Of course all this rests upon what one considers to be Pure TMS (which Sarno was very clear about) and where emotional issues, personality types, trauma and suchlike collude to create physiological changes (this is more the domain of Gabor Maté).

I feel (based on over a decade of experience with it) that Parkinson’s errs towards the latter and this explains why it needs more care than the comparatively simpler psychological work of regular TMS.

My boy is doing brilliantly and he has done loads of emotional healing. I think having a clear diagnosis does give you traction because you know what you are dealing with. This is where Georgie is coming from. It would be remiss of any TMS professional to claim they could cure Parkinson’s but to offer help, support and care of the emotional aspects is fantastic.