Desperate

[mbsgal85]

Good Morning:

I had a psychological crisis start in mid Feb. This has been followed by depression, anxiety, and OCD. When it first started, I was having crazy temp fluctuations. Go into March, and I started having a facial tremor when I woukd smile. Now, I have been to a movement disorder doctor. I have been tested for everything. However, I have a tremor, body pain, pins and needles, and my doctor says I am fine. I do not have Multiple System Atrophy, yet it feels impossible bc I went from being really active to shaking while doing activities, feeling weaker, constant muscle spasms in butt, legs, etc… what looks like blood pooling. I do not even want to get out of the bed. My symptoms are immediately the first thing I think about. I am afraid my doctor is wrong, and that although he says I have MSA, I could have it, and he just hasn’t seen it in brain yet. It is a disease that cannot be confirmed until after someone is dead. He is at one of the best institutions in the country, but I am having a hard time after reading online about people’s symptoms. I just want to get back to a normal life. I do have brisk reflexes and some other things, but he is attributing those to my anxiety. My legs and arms feel heavy and my dexterity in my dominant hand is worse. I am just convinced something horrible is wrong with me, particularly MSA. Could this really all be TMS?!! My tremor is active, and I keep testing to see if I can do nose to finger. My finger trembles as I get closer.

I should also mention that I was doing somewhat okay yesterday, but I woke up with all over body internal shaking and last night, I lifted my head up and it started shaking when I raised myself from the pillow. Thanks.

 

[Diana-M]

Could this really all be TMS?!

Yes! So many of us here have these kinds of symptoms. They actually also come from anxiety. The buildup of adrenaline. It’s really hard to not be afraid but being afraid it is what’s making it worse.

It will take a lot of work for you to believe you have TMS but when you do, you’ll be on your road to recovery. But the first thing you need to believe is that adrenaline can do this —it really can. I have most of what you describe wrong with me too. But over the past year, it has greatly diminished.

Have you read any books by Dr. Sarno? Try reading the Divided Mind. It talks about equivalents to back pain. Your body is using these symptoms to scare you just like some people get back problems. It’s an equivalent to TMS. TMS is a form of anxiety.

Also, check out this book by anxiety expert, Claire Weekes. It’s called Hope and Help for Your Nerves. When she describes symptoms, insert yours into the descriptions. It will be very comforting for you and it will help to start you getting hope and calming down.

It’s not an easy road to get better, but you can do it! Stick around here. It’s a great support.

 

[mbsgal85]

I will look back at the divided mind. Thank you!

 

[mbsgal85]

Would love to hear from more people.

 

[Cactusflower]

"However, I have a tremor, body pain, pins and needles"

I had similar symptoms (and many many more) - @Diana-M 's advice is absolutely correct.
The tremor, pins and needles etc. is anxiety.
With TMS, you aren't totally aware of the anxiety BEFORE the symptoms begin. You were probably having anxiety but for you that seemed normal, it was with you for much of your life.
Then when things increase psychologically, your body will call out to you. Everything is connected, although Western medicine has not historically connected the mind and the body as one organism. This takes changing your entire perspective about health in general.
Read The Divided Mind and Dr. Sarno will explain his theory (which has been proven over and over again in independent scientific studies) ... the book tells the stories of his patients and how they healed by doing psychological work.
More recently, there has been a lot more science behind how the nervous system responds to stress and anxiety (created by repressed or suppressed emotions) which puts you into Fight, Flight or Freeze - basically the nervous system gets stuck on high alert and can create a host of symptoms. Your mind becomes stiff, ridged and in "protection" mode and your body follows - your primitive mind thinks of the psychological threats you face as a tiger in a room - and reacts just like there was an actual tiger there!
The main thing is not to worry about this. It feels scary, but it actually means your body and mind are functioning correctly. You just need to deal with the psychological issues and let your mind and body know you are safe. It's really just like your "on" switch is stuck in "on" and over time, you'll learn to teach it to be on "flow" - you want your nervous system to flow through it's variety of states - from calm to on alert without getting stuck, without freaking out.
Any book by Claire Weekes is excellent, because her directions of how to deal with anxiety are very clear.

When I dealt with my anxiety, learned ways in which to find a more calm state in my mind and body (eg. meditation, for some people movement works well, or nature....) and followed the psychological work Dr. Sarno suggests - I have no more of these symptoms MOST of the time. Occasionally I have a little bit come to visit me again, but it is not scary or strange now I understand what is going on.

Step #1 is always education and knowledge. Understand what is happening - read Dr. Sarno, and read Claire Weekes.

 

[mbsgal85]

"However, I have a tremor, body pain, pins and needles"

I had similar symptoms (and many many more) - @Diana-M 's advice is absolutely correct.
The tremor, pins and needles etc. is anxiety.
With TMS, you aren't totally aware of the anxiety BEFORE the symptoms begin. You were probably having anxiety but for you that seemed normal, it was with you for much of your life.
Then when things increase psychologically, your body will call out to you. Everything is connected, although Western medicine has not historically connected the mind and the body as one organism. This takes changing your entire perspective about health in general.
Read The Divided Mind and Dr. Sarno will explain his theory (which has been proven over and over again in independent scientific studies) ... the book tells the stories of his patients and how they healed by doing psychological work.
More recently, there has been a lot more science behind how the nervous system responds to stress and anxiety (created by repressed or suppressed emotions) which puts you into Fight, Flight or Freeze - basically the nervous system gets stuck on high alert and can create a host of symptoms. Your mind becomes stiff, ridged and in "protection" mode and your body follows - your primitive mind thinks of the psychological threats you face as a tiger in a room - and reacts just like there was an actual tiger there!
The main thing is not to worry about this. It feels scary, but it actually means your body and mind are functioning correctly. You just need to deal with the psychological issues and let your mind and body know you are safe. It's really just like your "on" switch is stuck in "on" and over time, you'll learn to teach it to be on "flow" - you want your nervous system to flow through it's variety of states - from calm to on alert without getting stuck, without freaking out.
Any book by Claire Weekes is excellent, because her directions of how to deal with anxiety are very clear.

When I dealt with my anxiety, learned ways in which to find a more calm state in my mind and body (eg. meditation, for some people movement works well, or nature....) and followed the psychological work Dr. Sarno suggests - I have no more of these symptoms MOST of the time. Occasionally I have a little bit come to visit me again, but it is not scary or strange now I understand what is going on.

Step #1 is always education and knowledge. Understand what is happening - read Dr. Sarno, and read Claire Weekes.

What do I do about the fact that I have latched on to a disease that may not be detectable yet?

 

[Rabscuttle]

What do I do about the fact that I have latched on to a disease that may not be detectable yet?

No one starts believing right away, and you don’t need 100% belief to get better, you just need enough belief to start the work. As you do the work you gather evidence and your belief increases. The rest takes care of itself.

there is zero to lose in applying a mindbody approach.

I think Dan Buglios methods are really good for someone in your shoes. His YouTube is pain free you and he has a ton of success stories with cases ranging from mild to severe.

 

[Cactusflower]

Your doctor has cleared you from having any disease.

What you do about the “latching on” is reading the book by Dr. Sarno and the book by Claire Weekes. There is knowledge and instruction in those books.

We at this forum are all volunteers who will support you of you decide to follow through with exploring more about TMS, but we aren’t doctors or therapists. The TMS exploration is something you’ll need to do for yourself. We’re here to help answer any questions that arise as you read through the materials.

 

[dystonicrunner]

I am still super early on my TMS journey but I can relate.

I have been diagnosed with a movement disorder (Dystonia) that when you look on the internet it is terrible and has no cure and treatments for it are only minimally helpful. I lost my ability to walk normally literally in just a moment one day. I was walking my dog and all of a sudden I couldn't.

I like you, needed to see doctors to rule out other causes (ie brain MRI) and see people with different opinions on my diagnosis and treatment. Do you feel that you have gotten a decent work up? If yes, then you should explore TMS. It took a long time, but I got a decent work up but also realized that the doctors don't really know much more than I do about dystonia and they certainly don't think it's TMS. It is TMS. At least I'm mostly there it's TMS. Again I've only been really working on this stuff for about a month and only exposed to Sarno for a few months but it gets easier by the day to accept this.

Start reading the books. They are encouraging and helpful. It can only help.

BUT the most important thing is.... STOP DR. GOOGLE. My mind still holds on to things I Googled months ago and it's making it harder for me to move forward.

 

[JanAtheCPA]

What do I do about the fact that I have latched on to a disease that may not be detectable yet?

What you do is to accept the fact that having been examined and told that you are not sick, you currently have nothing to lose by mindfully setting aside for now the extremely remote possibility of this obscure condition, and focus on the MUCH more likely probability that this is a manifestation of very common mindbody symptoms. These are symptoms that your TMS brain has custom-designed just to scare the beejeezus out of you. All your brain wants is for you to go home and lock the door and pull the sheets over your head so you're not exposed to whatever is out there causing you to stress out, just in case it's a big tiger trying to eat you. It doesn't care about your quality of life, because it's too primitive - it is only interested in pure physical safety and survival, as if you still lived in the dangerous wilderness. You have to take charge and train your brain to update its perceptions!

Bottom line: your description of symptoms starting after a psychological crisis screams "TMS" to me, in giant neon letters!

My story is that I started having tremors, various twitches, shaky legs, panic attacks, depression, dizziness, vestibular imbalance, brain fog, weird tingling sensations, facial numbness, dry mouth, GI problems, back pain, neck pain, shoulder pain, headaches, and I forget what-all, the year I turned 60. I was well on my way to being housebound when I stumbled across The Divided Mind on a forum about the migraine diet that my dizziness PT wanted me to follow. Instead, I read the book, found this forum, read Hope and Help For Your Nerves, and did the Structured Educational Program here, and I recovered. At 74, I can assure you that aging ain't no picnic, but I'm still physically and mentally in way better shape than I was 14 years ago, even in the face of emotionally challenging world, um, "issues".

Any experience with therapy? If you're in a crisis, it can be very helpful.

 

[mikeinlondon]

I wish I had an answer for you but I don't. However, I can share my experience with you. During a period of severe insomnia (my psychological crisis) I experienced similar symptoms to you i.e. crazy temp fluctuations, depression, anxiety and OCD. I know that severe insomnia can cause those things i.e. dysautonomia where your body's autonomic nervous system isn't functioning properly and, to me, that is TMS as the ANS is in the brain. Perhaps your ANS has gone awry due to being in fight or flight mode as a result of psychological crisis? Those symptoms have reduced significantly for me but I'm dealing with some really tough TMS symptoms (severe fibro-like pains when sitting and breathing issues). All of this was triggered in the days/weeks following the crisis. Do not underestimate what a psychological crisis can do to the brain. A brain in fight or flight mode will act out strange behaviours. I've had so many tests done over several months and all came back negative. Dr's have diagnosed me with nervous system dis-regulation (by exclusion) and CPTSD possibly as a result of childhood trauma and I'm seeking therapy for that. Also, note, certain medications or their withdrawals could cause such symptoms so be mindful what you're taking/withdrawing from (I took some nasty prescriptive drugs that made my symptoms worse for a while). The way I finally rationalised my diagnosis of TMS is that my pain is so bad that it could either be TMS or a severe disease like bone/blood cancer. If it was the latter I'd probably be dead by now, would have other symptoms and would certainly not have the energy to go to the gym etc. Also, look into your past i.e. were you a victim of CPTSD/PTSD? That's a huge clue. Also look at your life now i.e. are you happy or not? All of those factors play into your mental state and how resilient your mind is when it is hit by a psychological crisis. I had CPTSD and I really wasn't that happy so when my crisis hit I was already in a mentally vulnerable state. Look at the bigger picture. I hope this helps. There are some great people on this board like Diana, Cactus etc and they make you feel part of a virtual family. It really helps with healing from emotional issues. If you do wish to explore TMS this is a great forum.

 

[Diana-M]

Also, look into your past i.e. were you a victim of CPTSD/PTSD? That's a huge clue. Also look at your life now i.e. are you happy or not?

I agree with what Mike said. It really is an excavation project. Your body finally just gave up under the psychological pressure, and now you have to figure out what’s going on underneath the hood, so to speak. Many of us with TMS experienced childhood trauma, and that sets you up for a nervous system breakdown at some point. Especially, if anything traumatic in your present life reminds you of something from your deep dark past.

If you’re serious about handling this situation as TMS— there are two things you can do right away. #1: Take the quick Adverse Childhood Experience (ACE) test, which reveals how much stress you had as a child. It’s a place to help you start thinking about what happened.

Next, you can do the Structured Educational Program that’s free here on this forum. If done in earnest, it’s a very hard-core exploration of your psychological and emotional background. Some people get better just from doing it. Some people just open a can of worms and they need more help after that. They might need therapy.

These are the realities of TMS. You wonder how in the world could this happen to your body? Well, it’s your body talking. Trauma is stored in the body. And obviously there are some pretty big secrets under there— disturbing things. Hiding from them will never make them go away. But they can be healed and it might take some time— more time than you wish. But honestly, what choice do you have?

Some people hear all this and run right back to the medical world thinking that will be easier. But if you have TMS all it’s going to do is prolong the misery, because you won’t be treating the true diagnosis.

Mike’s right. This forum is like a family! The comfort, community and help is lifesaving.

 

[mbsgal85]

I agree with what Mike said. It really is an excavation project. Your body finally just gave up under the psychological pressure, and now you have to figure out what’s going on underneath the hood, so to speak. Many of us with TMS experienced childhood trauma, and that sets you up for a nervous system breakdown at some point. Especially, if anything traumatic in your present life reminds you of something from your deep dark past.

If you’re serious about handling this situation as TMS— there are two things you can do right away. #1: Take the quick Adverse Childhood Experience (ACE) test, which reveals how much stress you had as a child. It’s a place to help you start thinking about what happened.

Next, you can do the Structured Educational Program that’s free here on this forum. If done in earnest, it’s a very hard-core exploration of your psychological and emotional background. Some people get better just from doing it. Some people just open a can of worms and they need more help after that. They might need therapy.

These are the realities of TMS. You wonder how in the world could this happen to your body? Well, it’s your body talking. Trauma is stored in the body. And obviously there are some pretty big secrets under there— disturbing things. Hiding from them will never make them go away. But they can be healed and it might take some time— more time than you wish. But honestly, what choice do you have?

Some people hear all this and run right back to the medical world thinking that will be easier. But if you have TMS all it’s going to do is prolong the misery, because you won’t be treating the true diagnosis.

Mike’s right. This forum is like a family! The comfort, community and help is lifesaving.

Thank you! I'm currently trying to work, and every symptom I have is currently getting worse. The backpain is worse, blood pooling, tremors, etc... I assume this is because I'm challenging what I have been doing.

 

[mbsgal85]

"However, I have a tremor, body pain, pins and needles"

I had similar symptoms (and many many more) - @Diana-M 's advice is absolutely correct.
The tremor, pins and needles etc. is anxiety.
With TMS, you aren't totally aware of the anxiety BEFORE the symptoms begin. You were probably having anxiety but for you that seemed normal, it was with you for much of your life.
Then when things increase psychologically, your body will call out to you. Everything is connected, although Western medicine has not historically connected the mind and the body as one organism. This takes changing your entire perspective about health in general.
Read The Divided Mind and Dr. Sarno will explain his theory (which has been proven over and over again in independent scientific studies) ... the book tells the stories of his patients and how they healed by doing psychological work.
More recently, there has been a lot more science behind how the nervous system responds to stress and anxiety (created by repressed or suppressed emotions) which puts you into Fight, Flight or Freeze - basically the nervous system gets stuck on high alert and can create a host of symptoms. Your mind becomes stiff, ridged and in "protection" mode and your body follows - your primitive mind thinks of the psychological threats you face as a tiger in a room - and reacts just like there was an actual tiger there!
The main thing is not to worry about this. It feels scary, but it actually means your body and mind are functioning correctly. You just need to deal with the psychological issues and let your mind and body know you are safe. It's really just like your "on" switch is stuck in "on" and over time, you'll learn to teach it to be on "flow" - you want your nervous system to flow through it's variety of states - from calm to on alert without getting stuck, without freaking out.
Any book by Claire Weekes is excellent, because her directions of how to deal with anxiety are very clear.

When I dealt with my anxiety, learned ways in which to find a more calm state in my mind and body (eg. meditation, for some people movement works well, or nature....) and followed the psychological work Dr. Sarno suggests - I have no more of these symptoms MOST of the time. Occasionally I have a little bit come to visit me again, but it is not scary or strange now I understand what is going on.

Step #1 is always education and knowledge. Understand what is happening - read Dr. Sarno, and read Claire Weekes.

is it normal for the symptoms to flare up or get worse?

also, the support groups for FND are awful!! I cannot lose my job over this!!!

 

[Cactusflower]

Two things can be happening: you are doing the TMS work and your brain is just going into high alert because you are challenging it's notion f safety.
You haven't yet started the work, reading and gathering knowledge and TMS is just following it's course because your brain is trying to keep you safe

Where do you think you fall?

 

[mbsgal85]

Two things can be happening: you are doing the TMS work and your brain is just going into high alert because you are challenging it's notion f safety.
You haven't yet started the work, reading and gathering knowledge and TMS is just following it's course because your brain is trying to keep you safe

Where do you think you fall?

In between honestly. I knew about TMS a long time ago and got myself out of it. I have a lot more complicating symptoms this time. I just do not want to be stuck without a job, etc… I gotta be able to support myself and going on disability is not an option as a single female, so have to attack this.

 

[dystonicrunner]

is it normal for the symptoms to flare up or get worse?

also, the support groups for FND are awful!! I cannot lose my job over this!!!

Yes flares are very normal and expected.

As someone with focal dystonia we have a ton of overlap with FND. I have been convinced many times I have FND because I have a million other things going on other than focal dystonia. But now I know that’s TMS.

The runner’s dystonia group on Fb or the Reddit or Let’s Run threads etc are the most sh*t things on the internet. I actually even joined some FND groups when I was ruling it out. The only good was done by a woman who wanted to like poke fun at having FND and encouraged others to do so (which in a TMS framework is good because you aren’t taking the symptoms so seriously) and people hated her.

I have 100% confidence FND is TMS. If you did not know, FND used to be called conversion disorder until the updated DSM-V. (What we use to diagnosed psych disorders). Conversion disorder was coined by Freud. It’s all over Sarnos books.

quit those groups.

 

[mbsgal85]

Yes flares are very normal and expected.

As someone with focal dystonia we have a ton of overlap with FND. I have been convinced many times I have FND because I have a million other things going on other than focal dystonia. But now I know that’s TMS.

The runner’s dystonia group on Fb or the Reddit or Let’s Run threads etc are the most sh*t things on the internet. I actually even joined some FND groups when I was ruling it out. The only good was done by a woman who wanted to like poke fun at having FND and encouraged others to do so (which in a TMS framework is good because you aren’t taking the symptoms so seriously) and people hated her.

I have 100% confidence FND is TMS. If you did not know, FND used to be called conversion disorder until the updated DSM-V. (What we use to diagnosed psych disorders). Conversion disorder was coined by Freud. It’s all over Sarnos books.

quit those groups.

Thanks! I have symptoms top to bottom! Maybe we are kind of similar it sounds like? Have you healed!

 

[mbsgal85]

Yes flares are very normal and expected.

As someone with focal dystonia we have a ton of overlap with FND. I have been convinced many times I have FND because I have a million other things going on other than focal dystonia. But now I know that’s TMS.

The runner’s dystonia group on Fb or the Reddit or Let’s Run threads etc are the most sh*t things on the internet. I actually even joined some FND groups when I was ruling it out. The only good was done by a woman who wanted to like poke fun at having FND and encouraged others to do so (which in a TMS framework is good because you aren’t taking the symptoms so seriously) and people hated her.

I have 100% confidence FND is TMS. If you did not know, FND used to be called conversion disorder until the updated DSM-V. (What we use to diagnosed psych disorders). Conversion disorder was coined by Freud. It’s all over Sarnos books.

quit those groups.

I also left the groups.

 

[JanAtheCPA]

Have you healed!

Wrong question! That's because there is no definitive answer, and everyone's experience is different.

Do the work to get your TMS under the control of your rational brain so that you stop being at the mercy of your primitive brain. This is a lifetime journey.