I have no doubt that what I have is TMS. I knew it even before I learned about the condition. What I want to explain is that, although my symptoms did not start in my arms—I first had paresthesia in my foot, which wasn’t painful and I ignored it—everything changed once my arms became involved.
I wonder if that is quite indicative. Assuming that the symptoms are trying to tell us something and get our attention, your brain may have thought well I've given her a message and she isn't getting it, in fact it's being ignored, so I'm going to ramp it up and give her something scarier so she really stands to attention.
In my arms, it started with pain: elbows and fingers. After many tests and treatments that didn’t help, and after being told I had golfer’s elbow, I began to realize something wasn’t adding up. I thought it might be ulnar nerve entrapment, even though all my tests were normal. I also believed it was intermittent because the sensations in my arms fluctuated a lot. They moved, even within the same arm, and the quality of the pain kept changing. I held on to the idea that if I avoided bending or twisting my arms during physical therapy, things would improve. But over time, with no real improvement, my intuition made me understand that this wasn’t coming from my arms at all. My arms were healthy. This was coming from my nervous system. It was creating false signals. I didn’t fully understand why, but I knew it wasn’t structural.
Perfect and that's a big step! As I alluded to above though, hopefully once we remove the physical explanation and a desire to understand it physically, then it becomes clearer as to what is going on emotionally to cause the symptoms or cause spikes in them. Symptoms always happen for a reason. I'm wondering whether you've been able to make any emotional links and also if you've done any work on the emotions/trauma that were present at the time of symptom onset. This is important to do (at least broadly) as removing the physical explanation is great (and correct assuming it is TMS) but we need to replace that with something else otherwise you'll develop anxiety from not knowing what is going on (even though it was incorrect, at least the physical explanation provides some clarity and in turn comfort). Saying it comes from the nervous system may or may not provide enough assurance (depending on the individual, we likely need to go further still).
The way this began for me was very traumatic. I had panic attacks, and during one of them I felt a cold line behind my elbows. After that, something shifted. Once the panic attack passed, I felt almost nothing at first. Days later, when I started using my arms again, the pain appeared and gradually intensified. From very early on, it was strong. I believe my brain created a neural pathway in which my arms were labeled as dangerous.
Unless there's a clear link between your arms and what happened with a certain traumatic incident (or an injury), I don't think i'd look at it like that as this just increases fear around the body part (and it keeps the focus on the body part, which I know is difficult not to do when the sensations are there). The more likely truth is that the brain has decided to express itself in this way (for me it chose the pelvic region, sometimes it's impossible to discern why) in order to keep the attention away from the unconscious feelings below (it's all TMS). It likely has little to do with your arms, and any inference that it does could send a subconscious message to the brain that something is structurally wrong (I know you have high belief in TMS, but we still need to watch what inferences we are sending to the subconscious, where logic is often lost - you have shown you appreciate this with your comment below about using your arms).
What makes this especially hard is that the pain in my arms is not fixed. It’s not burning, and it doesn’t feel like it’s inside the arm itself. It feels electrical—deep, dull, and uncomfortable—but the worst part is that it moves. It changes location constantly, sometimes even with the movement of the same arm. When pain stays in one place, you can eventually learn to live with it. But when it keeps moving, it becomes much harder to ignore.
I empathise with this and I am not trying to disregard how you feel about it. I just wanted to offer up the fact that for a lot of people I would dare say it would be the opposite. I mean my pelvic pain barely moved and part of me wanted it to move around (as it would have further cemented my belief in TMS). In fact, my back pain (which went away first), moved around more and that helped me get over the fear of it quicker (as it was a clear sign of TMS and didn't make sense structurally). Everyone's different, but the point is that it's often a matter of perspective, and the more you compare in the negative the more you'll feel isolated from the success stories and assistance of others (I completely understand the desire to find someone with the same symptoms, but then again you'll never find someone with the exact presentation the more specific you get, as things such as intensity, triggers and pain presentation will inevitably differ). I should say though too that you reference it being harder to ignore, which may be true, although I have never looked at healing as requiring you to ignore symptoms. Safety to me doesn't come from ignoring, but rather reappraising based on the fact that a) there is nothing structurally wrong, and b) understanding the emotional side of it so that you feel empowered to do something about it (which may be the next step in your case).
Not using my arms is not an option. I have to use them—otherwise, what message would I be sending to my brain? But when I do use them, that’s often when the pain appears or shifts. It has never stopped me from sleeping, but many mornings I wake up and, as my body starts moving, the pain begins again.
This is true and I wouldn't advise you to stop using your arms; I will talk about it more below but I think you are putting unnecessary pressure on yourself here to ignore it and just live life; when the work isn't that simple.
When I read other people’s recovery stories, many talk about burning sensations or more classic pain. I find myself wishing I had that instead, because this electric, moving pain is terrifying. It makes it very hard to imagine how I’m supposed to ignore it, live my life, and try to be happy. I often feel at a disadvantage compared to others, even those with neuropathic symptoms, because so many people say that recovery came when they slowly stopped fearing the symptoms and saw them as non-dangerous.
Assuming that those people are completely disabled by those types of pain, then are you really at a disadvantage? I know what you mean in that because you've experienced similar and have been able to ignore it and not letting it phase you, that you'd prefer that. But being at a disadvantage means you're in a worse position than them, and I think this may be harming your mentality unnecessarily, because like I alluded to I've seen people with those other pains you've described be completely immobilised and terrified. This is further proof too that it's not the symptom itself, but our relationship to it. This is why there are so many different TMS symptoms, what terrifies me might be a walk in the park for you and vice versa. The question then becomes, what do you have to do in order to make it feel non-dangerous? Mind you, that doesn't mean you have to like it. I had a rare flare recently and I hated it, but I wasn't scared of it and I fully appreciate that it is non-dangerous. You don't have to like it (in fact it would be weird if you did!), but as you've pointed out the answer is how you come to appreciate that it isn't dangerous.
In that sense, I have improved. I no longer have panic attacks. I can be with the pain without immediately panicking. But what remains is the fear of time—the fear of the future, of not knowing whether I’m actually improving. There are no clear indicators. Since I started working on reducing fear, my symptoms seem to have multiplied, which I know can be part of the process, but it’s still very discouraging.
That is a big improvement! I say that with the upmost confidence, even though it may not yet have translated into a symptom reduction (it may have). Again, I would be focusing on the emotional side of things. Explore the fear of the future and any feelings or traits that come along with that. Are you someone who puts a lot of pressure on yourself and has very high standards (higher standards for yourself than others)? Would you describe as a perfectionist? I could go on but the symptoms may be trying to get you to reflect on these things and may be a cry for help that we need to slow down and reflect. Some fear around the future is absolutely natural and unavoidable in your position, but I'd be looking to see if other things (past events or personality traits) are amplifying it (and if so, that's something to potentially appreciate and work on).
This type of pain in the arms—especially because it moves—makes this work extremely difficult. I try to remind myself that this is a long process, but I won’t deny how hard it is. I sometimes wish I only had burning, tingling, or numbness like many others, instead of this very specific, electric-type pain that keeps shifting in my arms.
