Sensations and emotions worse than pain

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.

 

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.

 

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!

 

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