Why are symptoms so much worse?

So I thought things were getting better, my symptoms continued but were starting later in the day, I was doing more and the symptoms continued but bothered me less.
I was more positive and noticed some days 45 minutes would pass without thinking about my headaches a long way from April when I was thinking about it for 45 seconds in every minute!
But for the past 10 days ( apart from Saturday) things have got progressively worse. Today the pain started at 9am and is now at a point that writing this message is really hard but I need to reach out for advice.
I've tried telling myself it takes time to stick with it like the abused dog analogy, you can't just tell a rescue dog it's safe and all is ok, you have to keep showing it over and over.
I've tried to tell myself it's good it's an extinction burst. But is it ? Do they last this long and make your symptoms worse ? It hasn't caused me to doubt the cause, this is TMS but why is it getting worse ?
I feel so exhausted today, almost a year of daily symptoms and 5 months of daily intolerable head and face pain.
I'm thinking is there something I'm not getting? Do I need a much bigger life change than what I'm attempting to put these fires out or do I just need to hold on and be patient?
Of course the fear and focus on symptoms has increased which is feeding the symptoms but I can't get back out of the loop with these current pain levels.
Where do I go from here ?
I wish I was in a more positive place but hoping someone has some wisdom for me even if it's brutal.

 

A few opinions.
Remove the extinction burst idea from your thoughts, it’s an unproven theory as it applies to TMS, and thinking about it just sets one up for disappointment. Where does one draw the line from symptom imperative vs extinction burst?. IMO if the symptoms wax and wane or move, it can be a sign of progress but most importantly should just be seen as the natural cycle of TMS.

I’ve had TMJ for 5 straight months. Constant Jaw and neck pain, and frequent headaches. You mentioned the fear. I think that’s your answer. I’ve made some decent progress as of late. The main thing that changed is how I respond to the flare ups, am I in a panic, constantly scanning my body? Or am I accepting this is a part of the ‘game’, understanding this isn’t forever, and that responding well is the key to getting out of this. It’s easy to be compassionate and not spiral when the symptoms are mild, but if we are sent into a panic and thinking everything is hopeless then we are in the loop. Actively being my own cheerleader as I go about my day has been helpful. Have you ever been your own cheerleader in life? Up until recently, I have never been. I’ve been the tiger my TMS brain is distracting me (a mean condescending person)

is this easy? Absolutely not, but recognizing you’re in the loop is a key first step.

how do you talk to yourself on a daily basis, how much joy are you finding on a daily basis, are you having any fun in your life? Or is it just a slog of scanning the symptoms and waiting for them to come back or go away?

 

Hi, Dee! Well, first off a big hug to you! Flares are really hard! (I feel like I’m almost always in one!) I used to get really scared about it and think I was making no progress. But now I think of them as a sign of progress. I’m annoyed by them, and even in pain by them. But I know they are not a reflection of how well I’m doing the work or how close I’m getting to healing. They can easily be a sign I’m getting closer.

I would say that increased symptoms are not always an extinction burst. Extinction bursts (the concept) give you the hope that you’re just about there and any day you’re going to wake up with no symptoms. Personally for me, I don’t think that’s how it’s going to happen. I think it’s going to be so gradual that I hardly know when I got better.

For me, symptoms always flare after I’ve done some emotional work. I’ve been doing emotional work perpetually since I started. I could write a book on the things I’ve learned about myself; the grief I’ve dumped off; the horrors I’ve released; the rules I’ve broken that I thought I had to keep my whole life… and more. This is quite the heavy lift. This is what TMS healing looks like. And it riles up your system. It rocks the boat.

From what I’ve read in your posts, you are doing work, too. You are on your way. The symptoms are not a reflection of failure or lack of progress. I wrote something today that somewhat relates to this in this thread. Read my second long post. https://www.tmswiki.org/forum/threads/mindful-gardner-what-are-the-pillars.30130/

❤️

 

I got a lot worse around the 3 year mark into TMS work. I gained the same pain I already had in multiple body parts. My pain levels in other body parts would tack on 1 by 1 until everything was around the same level of pain and then everything went down over time. It felt like a natural part of the process.

 

Thank you although I'm now stuck on the fact you said 3 years !!! I appreciate that's just my fear and intense anxiety at play. It will take however long it takes and this post has helped but also freaked me out at the thought of 2 more (or more) years of pain.
I'm going to a workshop on Friday called, how to feel your feelings, this one is on anxiety and I'm hoping it will help me do just that.

 

I share the length of time in hopes that it helps people see that it's normal if they haven't started recovering yet but I get that it could also give them anxiety that it's going to take that much longer. It may not take you as long as me. Also, the 3 years was only when all the symptoms got worse. It took almost 3 more years to fully recover. Lol.

 

The Welcome post on this forum gives us a heads up about worsening symptoms:

What to Watch Out For: As you work the SEP, your brain will not be happy, because it would rather have you stay in a familiar fearful state - so it might start to fight back. Worsening symptoms and new symptoms are very common experiences as people start seriously doing this work. Just know that this is a sign that you're getting somewhere and that it is a reason to rejoice - so keep the faith, and don't give up.

It's showing that you are shaking up your nervous system! Here's the hardest part-don't fear the symptoms. Acknowledge they are there and then move on about your day.

 

hmmm I'm not sure 'lol' is how I feel but I do appreciate you sharing it is motivating, there are so many stories of people who read a book and recovered or 2 months and then symptom free - so thank you I know it may take a long time and I have to do the work and try all the tools until hopefully something works for me and helps me out of this fear - pain - focus - pain loop - out of curiosity can I ask what symptoms you had with TMS and what tools helped you?

 

In theory ... thanks Jan I always enjoy your comments, I do get the theory but my subconscious is struggling with the message... little fucker !

 

Yea, I have everything here https://www.tmswiki.org/forum/threa...ermobile-ctd-fibro-dx-20-years-of-pain.29325/

 

Yeah ok - I must admit when it suddenly got worse I clung to the EB theory because I was scared and then when things got worse again and not better I had more fear.
Joy is definitely the opposite of fear - when my symptoms are at a minimum I feel joy or is it that when I feel joy my symptoms are at a minimum. I have been increasing joy over the past few weeks hence the increased positivity I guess that's what made the flare so unbearable, it felt like 1 step forwards and the a massive backwards slide. I have just recently started self love affirmations and positive self talk - it feels very awkward.. I have recently seen an interesting experiment on FB by Doc Tovah reading speaking to lemons. The negative talk causes one half to rot whilst the positive talk stops the other half rotting... I may have to try this.

 

Unfortunately, we have to expect flares as we are healing. But we can control our narrative-self affirmations are a great start! It's been hard to catch my negative self talk but I feel like I'm getting better at it!

 

Dee,
It is so frustrating to hear about those people! And it sets us all up to want that. But the honest truth is almost all those people get TMS again. True! Just stick around on the forum and you’ll see how many people are back saying, “I got all better and now it’s back and it’s really bad.”

When I first discovered Sarno in 2017, I was having a really bad TMS episode where my hands were both numb. I was freaking out and I was lucky enough to discover Sarno. I read his book The Divided Mind— I did all the stuff he said— and a few months later my TMS went away.

Five or so years later it came back— and then it got worse. During that time I had about eight hard things going on in my life. And, I still hadn’t learned so many things. I hadn’t explored my past enough. I hadn’t learned enough about my personality traits that cause TMS. I was flying blind.

Am I frustrated that I don’t have this TMS gone yet? At first I was, but now I’m not anymore— because I consider this the cleanup of all cleanups.

I’m gonna get this good! Will it come up again? Probably—because TMS seems to pop up again for people like me. But if it does, I’ll be able to recognize what’s going on. I’ll be able to spot what triggered it. I’ll get rid of it faster. And maybe it will never come again!

I’ve had TMS on and off my whole life and I’m 66. But now things are different. As far as I’m concerned, the rest of my life is going to be amazing. It already is so much better because of the things I’ve learned about myself.

It will only keep you stuck if you resent how long it’s taking. If you really want to get on the right path: try to live and be happy now. I know this sounds really frustrating and annoying.

I don’t like to talk about symptoms— I think it makes things worse. But I’ll just tell you so you can see how far I’ve come to be happy. Right now, I can’t walk very fast using a walker. If I stand more than 10 minutes, I’m in massive pain. I can’t balance enough to pick up something off the floor. My hands are cramped and I can’t use my left hand very well. But I’m happy now! How in the world did this happen? I think it’s because I finally I know I will get better— and I’m using my patience. It’s just a matter of time. Even if it takes a while, I’m changing so much month by month that it’s even worth it.

I hope any of that can help you! ❤️ Hang in there! Keep doing the work. Stick with the forum.

 

Jan, I learned all this here from you guys! ❤️

 

Woah John - your story ! So fucking powerful. I read it in full last night and again this morning.
Thank you for taking the time to read and answer my post for taking the time to write your full story for others to read and for directing me to read it. And thank you for doing the HARD work sticking with the programme(s) to prove to those of us still in pain it is real, it is possible to overcome and it might take a really fucking long time !

Some of the topics you covered really spoke to me, the idea that other people have no idea how much pain you are in is so true - it actually frustrates the hell out of me, I say my head hurts and people are like yeah I get headaches, and there's me in ending my life pain like switching the lights off for good because I can't stand it for 1 more day and still getting through work (most days) also other peoples problems or any non pain problem becomes so unimportant even ridiculous - I remember a few times thinking I would happily exchange every single thing I have worked for and own and you could put me on the streets to start over (pain free) and I'd take that option ! ( I think the number of adjustments you had to make in your life like sticking pencils to your hands helps other (me) really start to understand that level of pain. its so subjective saying I'm in pain, it means nothing to someone else !

When I got to 'It feels like having wolverines regeneration' I was in floods of tears, I'm not sure if I was crying because all you have been through, because there was a happy ending or possibly because I though maybe I can have a happy ending too.. Interestingly crying is quite new to me since starting this work.
However without a doubt the stand out line in your entire story is this 'temporary acceptance while thinking about your pain free future' Thank you for this - I can do this, I cannot accept the pain / discomfort / anxiety - I can work on them I can say I accept you for now but if I do the work my future will be pain free. If this worked for you there is no reason it can not work for me. I though this approach might be counterproductive - the grasping for the future and not enjoying the present, however it is really fucking hard to enjoy the present when you want to end your life due to the pain levels in your (brain). Saying I accept you is a lie saying I can accept them for now, while thinking about your pain free future. That is the truth.
Your story is truly incredible - thank you

 

Glad you liked it! Yea, when you're going through it you have that dark depression thinking you'll never get better. That's a normal part of the process. You handle it day by day and one day you'll be better.

 

Everything @Dee.1983 said! Thank you @JohnDellatto for being here for us. It helps so much.