Initial Progress but now stuck!

L

litschi

Newcomer
Hi all,

I have been struggling with chronic headaches for the past 3 years, and they came pretty much out of nowhere, replacing the years of other physical anxiety symptoms I'd been dealing with. Long story short - I am sure it's TMS.
I have been working with a TMS therapist for the last 4 months, and initially, I made great progress! My first 2 months, my pain was 30-40% less frequent, less intense, and I had these great moments of practising the right way and seeing the pain dissipate. Amazing.
HOWEVER, the last 2 months have been really tough!! I have been practicing just the same, to the best of my ability, but the headache frequency is back as strong as it was before. And other symptoms came back too that haven't been around for a while... like back pain, and fatique. It seems relentless.
Now of course I am discouraged, which then makes it worse, and adds more fear.

What I'd like to know from you guys - is this normal? Has this happened to anyone else on here and then it got better again, or does this mean...gasp... that this approach is just not working for me? that of course now is my fear, that is fueling the pain.

Please reply if you have experienced this and overcome it!!!

THank you!!
 
Welcome to the Forum!

Yes, what you are experiencing is very common. Progress is seldom linear, but is often a very bumpy path. Sometimes things get worse before they get better. (look up "extinction burst" on this site) Even years after total recovery, I still get a relapse a couple of times a year. As soon as I recognize it is TMS, I am able to get rid of it in a couple of days.

So don't despair. Keep doing what you're doing. You are fortunate to be working with a TMS therapist, who can guide you in the process. You already know that you have TMS, or you wouldn't have experienced improvement. Keep reminding yourself of that fact.

Let us know how you're doing and feel free to ask questions any time. We are all here to support one another.
 
Anyone else maybe? I'd really appreciate some insights. I am super scared this initally was just placebo (that's what happened before with new treatments) and now it just doesn't work anymore...
 
litschi said:
Anyone else maybe? I'd really appreciate some insights. I am super scared this initally was just placebo (that's what happened before with new treatments) and now it just doesn't work anymore...
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Hi litschi,

Welcome to the forums! Yes, as Ellen said, your experience is normal. I also had increased pain in the beginning when I was treating my TMS, before it went away. And over the past 2 years I have had some smaller relapses that took a few days or weeks to fully go away. Healing from TMS doesn't mean you'll never experience it again, but you will be able to identify it, manage and and watch it fade away.

In terms of the placebo effect- you bring up an interesting point. In a way, TMS healing is directly tapping into the placebo effect to heal yourself! A placebo effect occurs when the symptom (pain) was caused by a nocebo (the symptom occurred because of emotions, fear or belief). A nocebo effect like TMS pain could be healed by something like massage when someone believes in it and gets a placebo effect off of it...or it could be healed more directly by REALIZING you have nocebo pain and doing the work to decondition yourself from it (aka TMS healing).

So it is normal to have some fear around whether TMS healing will really "work" or not, I think many of us have experienced this. Take a look at what some of your barriers are- is it your belief in TMS? Your work around some of the underlying emotions? Fear of the pain and sensations themselves? Some folks fully understand and believe their pain is TMS intellectually but have such fear of the pain that they get stuck there. Alan Gordon's TMS program is very helpful to address this aspect of TMS.
 
Hi MindBodyPT, thanks for the answer.My barrier is 100% fear of the symptoms. That's exactly where I get stuck. I just don't know how I can "just not care" about the symptoms. Sometimes actually I can, sometimes I can be ok with them being there, but then they always at some point come back with a vengance and I am soooooooo scared of them again. Scared I'll aways be in pain, scared I will get worse and develop fibro and have to stop work etc etc... oh the places my mind goes!
 
litschi said:
Hi MindBodyPT, thanks for the answer.My barrier is 100% fear of the symptoms. That's exactly where I get stuck. I just don't know how I can "just not care" about the symptoms. Sometimes actually I can, sometimes I can be ok with them being there, but then they always at some point come back with a vengance and I am soooooooo scared of them again. Scared I'll aways be in pain, scared I will get worse and develop fibro and have to stop work etc etc... oh the places my mind goes!
Click to expand...
Rather than "just not caring" about the symptoms, I prefer to look at it as focusing my attention elsewhere. Try shifting your attention away from yourself and your symptoms to other people, animals, absorbing tasks or hobbies, nature, music, etc. Think about some times when you have forgotten about your symptoms even if just for a minute. What were you doing? Laughing with friends, creating art, playing fetch with a dog, listening to a song......? The more experiences you have like this, the more you understand that it is possible to enjoy life even with TMS. That is outcome independence. Then build on that experience and knowledge.

I have a saying that "forgetting about TMS is the same as not having TMS". If your attention is not on your symptoms, for that time, they don't exist. There is a mind-training aspect to TMS recovery. Don't let your mind stay on those scary and negative thoughts, and don't let it obsess over your symptoms. When you notice you are doing this, just gently and kindly move your attention elsewhere. Create a list of things to do or think about besides your TMS and try those activities/thoughts instead. This gets easier with time. One day you just realize that you haven't thought about your TMS for hours or days even. And then you say, ahhhh, this is what recovery is like.
 
Ellen said:
Rather than "just not caring" about the symptoms, I prefer to look at it as focusing my attention elsewhere. Try shifting your attention away from yourself and your symptoms to other people, animals, absorbing tasks or hobbies, nature, music, etc. Think about some times when you have forgotten about your symptoms even if just for a minute. What were you doing? Laughing with friends, creating art, playing fetch with a dog, listening to a song......? The more experiences you have like this, the more you understand that it is possible to enjoy life even with TMS. That is outcome independence. Then build on that experience and knowledge.

I have a saying that "forgetting about TMS is the same as not having TMS". If your attention is not on your symptoms, for that time, they don't exist. There is a mind-training aspect to TMS recovery. Don't let your mind stay on those scary and negative thoughts, and don't let it obsess over your symptoms. When you notice you are doing this, just gently and kindly move your attention elsewhere. Create a list of things to do or think about besides your TMS and try those activities/thoughts instead. This gets easier with time. One day you just realize that you haven't thought about your TMS for hours or days even. And then you say, ahhhh, this is what recovery is like.
Click to expand...

HI Ellen, yes that makes sense.. but I get confused between this and the idea of mindfulness/somatic tracking, which is the opposite of putting your attention elsewhere, as it tells you to focus ON the pain, go toward it, in a neutral manner, and to practise being with the sensations and emotions. So am I supposed to distract myself or am I supposed to pay attention to the pain??
 
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