Sensations and emotions worse than pain

[Giofe86]

Pain is pain. It’s never pleasant, but over time, you actually get used to it and develop a kind of strength just to keep moving forward. I’ve had pain in both knees for a year and a half now, and yet I continue to live my life and experience things, despite the difficulties and the ups and downs. I’ve noticed I manage to think about it less now, whereas it used to consume my entire day.

What really gets me down, though, is the nature of the pain and the constant sense of uncertainty. The heat, the redness, the tenderness to the touch, the inability to move fluidly without feeling instability and hearing crunching sounds, the constant fluctuations in my knees' temperature—these are actually worse than the pain itself. The actual pain feels almost minimal compared to these sensations of burning, heat, and sensitivity.

The other thing that wears me out is the uncertainty—that lingering feeling of 'it’s always going to be like this,' even though I know deep down that I can still live my life this way. The things I’ve grown accustomed to are getting easier: working with the pain, going down stairs with it, driving... That's all manageable. But when I think about a new experience, like taking a trip, I’m terrified I won’t be able to handle it. Here at home, if I’m really struggling and I’m alone or with my wife, I can just sit down. But a group trip with a lot of people? I can't navigate that so easily.

Reading about others experiencing these same dynamics would really help me realize that what I'm going through is normal. After all, I’ve been through this before with my ankle—I experienced instability, weakness, pain, and stiffness. Yet, all of that completely vanished the moment I found out my MRI was clean.

What’s keeping me trapped this time is the fact that I’ve been dealing with this knee issue, with all its ups and downs, for 15 years—ever since a surgeon decided to operate on me. And it’s incredibly tough that it affects both knees. It makes it hard to believe I can overcome it, even though my past experiences show that whenever I genuinely believed I could and looked past the symptoms, I got through it without even realizing it. I used to only suffer from this for about a month each winter, usually when my life was feeling a bit stagnant or boring. Reading the posts on this forum is what finally helped me put those pieces together.

 

[Alouqua47]

The fact that you say you’ve gotten used to some level of pain is the first step toward recovery. If you can truly ignore it, despite your difficulties, that’s already a big step. But the most difficult part of recovery is the emotional side, and I believe that, in essence, this is where all the work of retraining the brain lies.
Every time those “what if this happens?” thoughts come up, they signal to your brain that every sensation is unpleasant, that it bothers or disgusts you, and that there is uncertainty. All of these emotions tell your brain that you are not safe.
And honestly, I know how difficult it is because I live it. I have deep pain in my arms of a nervous origin, with clear tests, neuroplastic in nature, and it’s constantly exhausting. I try to live life as best as I can. I’m not disabled—I can move my arms normally—but the pain is still there, especially deep in my body. And saying that those thoughts don’t come up would be lying—they do.
Constantly trying to block them can also become a form of struggle, so the best thing you can do is try not to engage with them. Every day that you ignore these thoughts, no matter how often they appear, and don’t get caught up in them, you are showing your brain that you are actually safe, and eventually the pain will subside. I don’t know exactly how—it may happen gradually, and I think that depends on each brain.
Yes, the emotional part is the most exhausting—even more exhausting than the pain itself—and in reality, it is also the way out of all this. It’s about learning to step away from it. That’s why many people improve by finding activities that keep them engaged—things they truly enjoy. This contrast helps the brain realize that you are not in danger, because you are engaged in something pleasant and your focus shifts away from the symptom.
The brain then understands that the signal is simply not useful and that you are truly safe. You don’t need the alarm. The neural connection weakens over time as it stops being used.
Yes, the emotional side is the most exhausting, but it’s also the only way out if you want to recover from chronic pain.

 

[Diana-M]

The other thing that wears me out is the uncertainty—that lingering feeling of 'it’s always going to be like this,'

Tell yourself 100 times a day that it won’t always be like this. Fight all the negativity. Say you know you’ll get out of this. And in the meantime, be determined to be happy anyway. You can do it!

 

[Adam Coloretti (coach)]

The other thing that wears me out is the uncertainty—that lingering feeling of 'it’s always going to be like this,' even though I know deep down that I can still live my life this way.

I would potentially be careful with this (about what you're inferring to your brain), because it read to me the same as saying "even if it is always going to be like this, I will still be able to live my life" - It is important to an extent to push through yes, but please don't settle. Assuming that it is TMS, you don't have to live like this forever.

I also wouldn't advocate ignoring the symptoms/pain - your history shows it is all about your belief - once you knew you were truly safe, you didn't need to make a conscious effort to ignore them because the indifference naturally flowed (from the scan in the case of your ankle - which is an extremely common thing to have happen).

Yet, all of that completely vanished the moment I found out my MRI was clean.

Have you got an MRI/other scan on your knees too? This could work to address that uncertainty (it doesn't necessarily need to be "clean" either, most findings that wouldn't require urgent attention will be normal wear and tear that wouldn't justify 15 years of pain).

And it’s incredibly tough that it affects both knees.

I empathise with that fully - that being said, that's great TMS evidence and a potentially key factor in driving your belief in the TMS diagnosis

 

[Giofe86]

I would potentially be careful with this (about what you're inferring to your brain), because it read to me the same as saying "even if it is always going to be like this, I will still be able to live my life" - It is important to an extent to push through yes, but please don't settle. Assuming that it is TMS, you don't have to live like this forever.

I also wouldn't advocate ignoring the symptoms/pain - your history shows it is all about your belief - once you knew you were truly safe, you didn't need to make a conscious effort to ignore them because the indifference naturally flowed (from the scan in the case of your ankle - which is an extremely common thing to have happen).



Have you got an MRI/other scan on your knees too? This could work to address that uncertainty (it doesn't necessarily need to be "clean" either, most findings that wouldn't require urgent attention will be normal wear and tear that wouldn't justify 15 years of pain).



I empathise with that fully - that being said, that's great TMS evidence and a potentially key factor in driving your belief in the TMS diagnosis

Hi Adam, thanks for your reply.

I actually held off because I wanted to just live the "highs" peacefully and try to maintain my balance during the "lows". It's exactly during those low moments that I feel the urge to browse the forum, write, and feel restless and annoyed.

To answer your question about the MRI—yes, I've had several over the years. My latest one (2025) is actually identical to the one I took back in 2023. It shows grade 1 chondropathy in the right knee and grade 1/2 in the left (there's a 2mm cartilage lesion on the left, but it was there in 2023 as well, and back then I felt bulletproof!).

My brain still tries to trick me, though. I've read theories by Scott Dye and other respectable, non-surgeon experts about knees losing functional equilibrium, and how synovial membrane inflammation supposedly stems from the daily physiological breakdown and rebuilding of cartilage. So I should avoid hard activities. It's so hard to get those theories and the fear of "wear and tear" out of my head.

Over the years, I've been through a lot of ups and downs. I had months of chronic pain in 2018 and 2019. In 2019 I had a real breakthrough, though the pain crept back during the winter (mostly just mentally oppressive at times). Eventually, I gradually improved to the point where, in 2023, I was climbing kilometers of stairs during a trip to the beautiful island of Crete.

My current flare-up has been going on for a year and a half after doing just 10 wall sit squats. The weirdest part is the symptoms: burning, heat, instability... it feels more like bizarre "sensations and torture" rather than actual pain. I feel worst when sitting with my legs bent, doing stairs, and especially standing still. Walking isn't much of a problem, and mornings and evenings are usually the best times for me.

But getting to the good stuff—there is a lot of positive evidence right now:

• The pain is shifting: my 3/10 pain periods are getting much longer compared to the 7/10 days.
  
  
• Physical symptoms are fading: I don't get that extreme redness and heat in the evenings anymore. I also used to wake up with extreme skin sensitivity on my knee (even a drop of water was agonizing)—that is completely gone.
  
  
• Last year I was on crutches; today I do everything, even with the pain.
  
  
• My focus has changed: I used to obsess over the pain constantly. Now, I feed my mind with other things (work, hobbies). I can actually watch a movie or sports without getting distracted. I no longer "measure" my steps or worry about unstable ground.
  
  
• A major win: last week, I had 5 straight days with pain at a 2/10. That has NEVER happened. At first, I thought it was a fluke, but 5 days is a lot. Coincidentally, it happened when my mind was racing with excitement and pride over work (I built a successful e-commerce site all by myself!). I want to have great results because I am an ecommerce expert, so AI is changing our world.
  

So the TMS evidence is definitely there. I'm just trying to keep pushing forward and not let the fear of uncertainty take over. But it's really tough not knowing if and when I will ever fully get out of this. After a few good days, you always end up right back there, and you start thinking that feeling good was just an illusion, since it's been going on like this for two years now.

 

[Rusty Red]

I would potentially be careful with this (about what you're inferring to your brain), because it read to me the same as saying "even if it is always going to be like this, I will still be able to live my life" - It is important to an extent to push through yes, but please don't settle. Assuming that it is TMS, you don't have to live like this forever.

See, for me, this was the only answer though. I tried everything, all the methods, and nothing stuck. I finally had to just decide the pain wasn't enough to stop me from exercising and I kept going.

 

[Adam Coloretti (coach)]

So the TMS evidence is definitely there. I'm just trying to keep pushing forward and not let the fear of uncertainty take over. But it's really tough not knowing if and when I will ever fully get out of this. After a few good days, you always end up right back there, and you start thinking that feeling good was just an illusion, since it's been going on like this for two years now.

5 days is a long time! Progress is full of ups and downs most of the time (it certainly was for me), so please don't feel as if it is a fluke or that it's an illusion - these things build up over time and it all adds up to more consistency of relief (even if it may not be linear).

My brain still tries to trick me, though. I've read theories by Scott Dye and other respectable, non-surgeon experts about knees losing functional equilibrium, and how synovial membrane inflammation supposedly stems from the daily physiological breakdown and rebuilding of cartilage. So I should avoid hard activities. It's so hard to get those theories and the fear of "wear and tear" out of my head.

That makes complete sense but it sounds as if you've built a lot of evidence that makes this highly unlikely - you likely wouldn't have had the periods (like it only being there for a month each winter) of relief you've had if it were structural - eventually, if it is TMS, the evidence just becomes overwhelming against theories such as these - nothing else makes sense (how could you climb kilometres of stairs at a certain point on that bad of a structural issue?).

So the TMS evidence is definitely there. I'm just trying to keep pushing forward and not let the fear of uncertainty take over. But it's really tough not knowing if and when I will ever fully get out of this.

Perfect! The progress you've made so far proves that you can go further - this would be more valid to me if you'd never made any progress (but even still, full recovery is highly highly likely for anyone with TMS) - but you wouldn't be able to have 5 days in a row at 2/10 if 30 days in a row wasn't possible, and then 60, and then 5 at 0/10, and then 60 at 0/10 etc etc (just as an example)

 

[Adam Coloretti (coach)]

See, for me, this was the only answer though. I tried everything, all the methods, and nothing stuck. I finally had to just decide the pain wasn't enough to stop me from exercising and I kept going.

I'm not against pushing through at certain times, this was more as an encouragement to say that full (or close to it) recovery is more than possible - I don't want people to create a self-fulfilling prophecy by capping their potential

 

[Giofe86]

I'm not against pushing through at certain times, this was more as an encouragement to say that full (or close to it) recovery is more than possible - I don't want people to create a self-fulfilling prophecy by capping their potential

Thanks for your reply, Adam. The real challenge is understanding what healing actually looks like and how to feel confident that we are moving in the right direction. I’m appreciating life more, I feel energized by my daily activities, and I’ve started thinking about pain in relative terms. For instance, on Sunday I was at the stadium with my knees bent for a full two hours!

Before, I felt depressed, I cried and thought about the pain all the time. Now the life is different.

Knowing that you are truly improving builds confidence, but the difficulty lies in the fact that there’s a certain persistence—a feeling of always having to endure or tolerate something. The discomfort is still there; it's less intrusive, but present. It is the operated knee, the one that has historically given me the most trouble, where the pain remains the most limiting factor.

 

[Giofe86]

May 15th was my daughter's second birthday. We went out for lunch, and it was a wonderful day. I didn't experience much discomfort; instead, I felt a real sense of strength and capability. The following day, we celebrated with family and friends. It was busy and demanding, but I was up and active the entire time without any issues.

Yesterday, May 17th, was a huge milestone. I spent the day out in town (I live on Ischia, a beautiful island in Italy) and managed to walk 20,000 steps—for the first time without any discomfort! Early in the morning, I felt a slight twinge when walking downhill, but it never turned into actual pain. I was even going up and down stairs. Reaching 20,000 steps felt impossible before, but for the first time, I genuinely felt 90% recovered.

However, today (May 18) the burning sensation has returned. I'm feeling quite anxious, almost as if I'm afraid that the progress I experienced yesterday was too good to be true.

Update: May 19th. Unpleasant burning sensations, stiffness, and I almost wish I hadn't had such a wonderful day: it's always hard to go from feeling so good to suffering even more than before. Maybe 20,000 steps were too many. One positive thing, however, compared to last year: after so many steps, I relaxed in the evening without thinking I'd be sick. The next day, however, I suffered from the thought of having to get back on track in real life, with so many things to do this week.