Pharmacological support

He llegado a un punto en el que simplemente siento que necesito ayuda. He intentado superar el miedo a los síntomas y al movimiento. Lo he hecho lo mejor que he podido. Sin embargo, el dolor en los brazos es muy intenso casi todos los días. Incluso el nivel habitual ya es muy, muy difícil, y el hecho de que se localice en los codos y los brazos lo hace aún más difícil.
Anteriormente había decidido que podía usar medicamentos para aliviar mis síntomas temporalmente, pero nunca me funcionaron. Así que hablé con mi esposo y decidimos que tal vez podríamos probar las infusiones de ketamina.
Sinceramente, no pensé que llegaría a este punto, pero dado que mis síntomas se han intensificado y se han extendido un poco más a otras partes de mi cuerpo, sentí que debía considerar esta opción.
Solo quería preguntar si alguno de ustedes ha recurrido a esto, o si todavía toman medicamentos para sobrellevar la situación mientras intentan reeducar su cerebro. Porque, en esencia, de eso se trata: de entrenar al cerebro para que vuelva a darse cuenta de que no está en peligro.

 

I haven't had ketamine infusions, but way back in the early days of being diagnosed with so called 'fibromyalgia' (before I'd heard of Sarno or had ever done any mind/body work) I went into hospital as a day patient and had Lignocaine (lidocaine) intravenous infusions. It made no profound difference to my wide-spread pain. Also, I'd had a tooth (back molar) extracted about 8 weeks prior to the infusion and, despite my gum having healed over, in reaction the to lidocane infusions it (my gum) swelled and became very painful (while I was actually having the infusion) which lasted for over two weeks. Sorry my experience isn't an encouraging tale. Maybe ketamine infusions would be a different matter. I now avoid pain medications like the plague (because I've tried a lot and always suffered side effects that I couldn't cope with) but I know that some forum members have successfully used them whilst re-educating their brains with mind/body work.

 

I would feel really discouraged if this didn’t give me at least some relief in the intensity of my symptoms, because I’m asking my family for help to be able to afford it. The nerve-related symptoms in my elbow that radiate through my arm are very strong most days. Now I even feel them spreading toward my back.
I understand that for this symptom to have appeared, the fear must have been significant. These must be deeply ingrained neural pathways. I also know that I probably need more than three months — which is how long I’ve been working on this — to improve or at least reduce the intensity by convincing my brain.
I also know this isn’t my only symptom. I experience burning sensations and random symptoms as well. Honestly, I’m really struggling. I need some form of help, and if this doesn’t work, I don’t know what else I could do.
I’ve always wanted to reach out to you privately to ask about the symptom you had in your arm (or arms, I think). Did it take a long time for your brain to start lowering the alarm, even if just in one part of your body, so you could keep going and feel that this was working?
I understand you might not have an answer, and I also know our brains are not the same.
I don’t know what else to say. Thank you for responding.

 

@Alouqua47 I really hear how much you’re struggling with this, especially with the intensity and how it’s spreading. I know from my own experience that that’s such a hard place to be in, and it makes sense you’d be looking for something that gives you some relief.

For me, the biggest shift didn’t happen quickly or in a clear, linear way. My symptoms went on for a long time, and what eventually changed things wasn’t so much convincing my brain in a direct way, but gradually getting to a point where I stopped mentally fighting the pain all the time. That didn’t mean I liked it or wasn’t scared—it just meant I wasn’t constantly in that internal battle with it.

One thing that became really important was non-resistance. There were times when the pain was so intense I couldn’t sleep, and instead of trying to distract myself or push it away, I actually put my attention on it. Not in a tense or analytical way, but more like allowing it to be there without bracing against it, and gently breathing into it at the same time. What I mean by that is I would let my breath be slow and steady, and as I breathed in, I’d imagine the breath going into the area of pain, and as I breathed out, letting my body soften around it rather than tighten against it. It wasn’t about trying to make the pain go away, just about not resisting it in that moment. That was very gradual, and I didn’t do it perfectly, but over time it reduced a lot of the pressure around it.

I don’t remember there being a clear moment where one area improved first and gave me certainty. It was more subtle than that, and honestly, it took longer than I expected. Three months can feel like a long time when you’re in it, but in terms of deeply ingrained patterns and calming a fearful brain, it’s still quite early.

That said, I really understand why you’re hoping for some relief from the ketamine, especially given how much you’re dealing with. Wanting some reduction in intensity makes complete sense. I just wouldn’t take it as a sign that nothing else can work if things don’t change as quickly as you hope.

This stuff can take time, especially when the symptoms are strong and the fear has built up around them. The fact that you’re still engaging with it and trying different approaches really does matter, even if it doesn’t feel like it yet.

 

Aprecio mucho tus consejos, siempre. Sé que tú también has pasado por muchas dificultades.
Ahora mismo tengo muchos síntomas y, sinceramente, me siento más agobiada que hace unos meses. No sé si es algún tipo de resistencia mental o simplemente mi deseo de mejorar. Durante este tiempo, lo que he estado haciendo es permitir que las sensaciones estén presentes, distrayéndome mucho leyendo y hablando con la IA sobre cosas que me ayudan a seguir adelante.
A veces me pregunto si eso fue o es algo negativo para mi recuperación, pero como las sensaciones nerviosas en mi codo suelen ser tan intensas, básicamente fue lo único que me ayudó a seguir adelante. Siempre existe ese temor de que nunca desaparezca, aunque intenté no centrarme en eso.
La verdad es que no esperaba una mejoría rápida, pero tampoco imaginaba que empeoraría: que las sensaciones se extenderían más arriba o que desarrollaría un nuevo síntoma en las piernas, cuando antes solo tenía un leve ardor en las pantorrillas. Además, últimamente he tenido otros síntomas muy frecuentes.
Quería saber si, en tu experiencia, también hubo momentos en que todo pareció empeorar, cuando los síntomas se intensificaron o aparecieron otros nuevos, ya sea al principio o durante el proceso. En mi caso, me hace sentir que estoy haciendo algo mal.
Es difícil saber si realmente estás mejorando, porque es un camino tan extraño y fluctuante, aunque se supone que tiende a la mejora. Quizás la mejora no sea perceptible a corto plazo, y por eso intento entender mi situación de esta manera: tal vez no es que lo que estoy haciendo no funcione, sino que simplemente es demasiado pronto.
Sé que mi mente está llena de miedos, y también entiendo por qué. Todo comenzó después de meses de preocupación por la salud de mi hija, debido a diversos problemas médicos. Y cuando empecé a indagar en mi pasado, me di cuenta de que el miedo ha estado presente toda mi vida: en la escuela, con mi padre, en la secundaria, en mis relaciones. No me había percatado de hasta qué punto todo estaba arraigado en eso.
Ahora entiendo por qué mi cerebro ha desarrollado tanta desconfianza. No sé si alguna vez lo comprenderé del todo o si lo superaré por completo; tal vez sea algo que deba hacer poco a poco. No tengo otra opción.
Aun así, siento que necesito algún tipo de ayuda, una especie de apoyo, para seguir trabajando en esto, y espero que la ketamina pueda ser eso.
Es curioso cómo algunas personas parecen recuperarse simplemente con vivir. Quizás porque sus síntomas no son tan intensos ni graves. Para ellas, las cosas van y vienen. Mientras tanto, otros tenemos que esforzarnos mucho para mejorar, aunque sea muy lentamente, o a veces sin siquiera darnos cuenta.
Espero que todos lleguemos allí.

 

Alouqua I still have moments where things get worse. But they return to baseline eventually and in my case I see the most improvement after flares. You are giving way too much importance to what are essentially flares. You need to find a way to stop examining so intently when the symptoms increase or change or go from a lower level to a higher level or for old symptoms to reappear. This is just the nature of TMS.

I don’t think the med route is wrong but you need to understand that the brain has lots of tricks and since we’re not dealing with physical injuries there is a risk that meds do nothing or the brain ups the ante and moves the pain elsewhere. If the underlying mechanisms fueling the sensations aren’t addressed then any lasting help from meds is not likely. I dealt with this when I masked my initial symptom with topical lidocaine.

I’ve heard of people finding success with ketamine for various things including mental health struggles. I use ketamine frequently with animals for pain. It is very clearly a good drug that is effective for physical pain. Our situation is a little more unique.

 

I know this can be a sensitive issue for many, so I'll frame my response purely on how I approach my medication use.

At the start of my TMS healing - and until recently - I dealt with a lot of guilt around taking pain meds during my treatment/therapy. It felt like I was cheating. Thanks to my therapist, pain coach, and people on this forum I've come to understand that it is perfectly okay to supplement my healing process with pain meds (and, in my case, anxiety meds). As Rabscuttle pointed out, my underlying issues still must be addressed. I don't ever let my brain think that the meds are a 'crutch' that I'm relying on to solve anything; nor do I let my brain think that we can take a break at any point because we can let the meds 'do their thing' for awhile. That kind of thinking would most likely be quite a detriment to my healing process.

In my regular conversations with my brain, I ask him "wouldn't it be wonderful to be able to take less of these? Maybe we can talk more about that as we keep progressing together down the path of healing?" I never try to 'deceive' myself / my brain. Open, honest dialog is something I keep in mind constantly.

The pain and anxiety meds are there for one purpose only in my healing: To turn down the pain /nervous system volume to a point that allows me to function at a reasonable and productive level. Without my meds, the process of healing would be massively more difficult; on a magnitude that I can't even contemplate.

 

I agree with what @Rabscuttle says in his posting to you, especially this point (above) about not examining the symptoms so closely when they change or intensify because that is just the nature of TMS. Examining them so intently can also increase your fear.

Yes, in my experience there were many times when things seemed to get worse, symptoms intensified, or new ones appeared. At points I was even intermittently bedridden. It really isn’t a linear process, even though people expect or want it to be.

What helped me understand this better is thinking about how the brain behaves under perceived threat. It’s not trying to lose symptoms in a straight line—it’s trying to protect you. So when you stop reacting with fear or start changing your approach, the brain doesn’t immediately “trust” that things are safe.

It’s a bit like a smoke alarm that’s become oversensitive. Even when there’s no real fire, it still goes off loudly because it’s learned to detect danger everywhere. When you start teaching it that things are actually safe, it doesn’t just switch off overnight—it keeps going off, sometimes even more for a while, as if to say, “Are you absolutely sure this isn’t dangerous?”

That’s why symptoms can flare, shift, or even expand. It’s not a sign you’re doing something wrong—it’s often the brain still testing and recalibrating.

Regarding recovering “simply by living”... some people do have milder symptoms, and that may make it comparatively easier for them to 'get on with their lives' despite their symptoms. However, the severity of symptoms doesn’t reliably predict recovery speed. People with relatively mild symptoms can struggle for a long time, and others with very intense symptoms can recover more quickly. So it's not a useful benchmark to compare against.

Whether symptoms are mild, moderate or intense, what we all need to do is to 'get on with our lives as best we can, despite the symptoms' whatever that may look like (at one point for me 'getting on with life, despite my symptoms' was peeling carrots for dinner from a tray in bed because that was all I could do because my symptoms were rendering me bedridden at the time).

Also, thinking that because your symptoms are severe it will necessarily take a very long time to recover can end up doing you a disservice. It’s completely understandable why your mind goes there, but it’s not something you want to reinforce or turn into a kind of expectation. That way of thinking can easily become a self-fulfilling pattern, even if unintentionally.

I’m not saying this is easy, because it isn’t, but if you go into it believing that it’s going to be very hard or take a very long time, that can also shape how the process unfolds.

Recovery doesn’t follow a fixed timeline based on how bad things feel right now, and it’s important to leave room for things to change in ways you might not expect.

 

Hello, believe me, I’ve thought about this a lot, and I wouldn’t consider this option if it weren’t truly necessary. I had been avoiding it for some time, but I’m really suffering a lot. For most people, flare-ups are something that happen from time to time. For me, they don’t—every single day is just as severe. I literally feel as if the ulnar nerve that runs through both elbows is being pulled, very similar to having a cut there. That sensation travels through my arms down to my hands. Now it even reaches my shoulder, and sometimes it spreads to nearby areas. My arms feel heavy, like they’re hanging. Believe me, it’s an extremely hard sensation to deal with.
I think I could manage it if this only happened occasionally and the other days were at a more moderate level, but that’s not the case. It would really upset me if this didn’t work, but I talk a lot with AI, and it tells me that in cases of severe central sensitization, medication can be a great help while retraining the brain. I know the brain is very complex, but essentially the goal is to show it that everything is safe—and with such a high level every day, that becomes very difficult. That’s why I need to lower the baseline level, at least for a while. I honestly don’t know how long, because we don’t know how much time each brain needs to feel safe enough to let go of a pattern it learned during a moment of terror, like what happened with my ulnar nerves in my elbows.
I’m being honest: I know it was a moment of terror, and it feels like my brain “took a snapshot” of that exact moment, because I even felt something internally when it happened.

 

Sé que todo el mundo dice que la recuperación no es lineal, pero ¿es verdad que es progresiva? Lo que quiero decir es que, con el paso del tiempo, ¿realmente tiende a bajar la intensidad? ¿En algún momento se disuelve, aunque sea con altibajos? ¿Es así como te ocurrió a ti?
A veces me confunde mucho la idea de la “opinión del cerebro”, es decir, la predicción de peligro y las vías neuronales que están reforzadas. Sé que básicamente son, creo, la misma cosa. Sin embargo, se me hace muy extraño tener que mandarle señales de seguridad a mi cerebro cuando él no me da nada de seguridad. De hecho, podría decir que en estos momentos tiendo a pensar que no es capaz de apagar este síntoma en los brazos.

 

Oh, I’m not judging at all. I totally get where you’re at. I was still using the lidocaine for a good two months after become TMS aware. I just want you to be prepared for the reality that this may not move the needle much. I don’t think you really have anything to lose as long as you temper your expectations. But you’re already saying that it will be upset you if this doesn’t work. Honestly if that’s where your head is at then I would do everything I can to put off the transfusions until that mindset shifts, but I’m no expert here. We don’t want to pressure our brain with this kind of stuff, we can reach a very dark distressing place. I know it seems like you’re at rock bottom but you need to find some way to lower the stakes when making decisions like these.

 

im on heavy ocd meds to aid with tms journey and im still neurotic. I dont want to get off them because theyve helped me with symptoms. You can use meds as a supplement but theyll not be your way out

Problem is also with meds that once youre on them youre gonna have to come off at some point

 

Yes, that's what happened to me. I went from being totally bedridden to now functioning pretty normally by comparison (but as I have said to you before, I do have some residual symptoms left that, from my experience thus far of having major improvements, I am sure will gradually fade over time). When you consistently do mind/body work, the overall trajectory is toward recovery. Along the way though there may be periods where symptoms stay the same, get worse, improve a bit, get worse again, improve a lot, flare, improve a bit, and so on. The symptoms themselves are not a barometer of what is happening in your brain “behind the scenes” when you consistently do mind/body work.

That's the whole point—your brain/subconscious mind isn't giving you signals of safety because it's convinced you're in danger. It wants you to stay indoors, in bed, safe under the covers. You have to show it you're safe.

With mind-body/TMS symptoms, your brain produces them and is capable of turning them off. But it won't do that until you consistently show it (your brain/subconscious mind) by the actions you take that it's safe for you to feel and express your anger and other emotions, and that there's nothing else to fear.

No one is telling you that you shouldn't opt for the ketamine infusions. Dr Sarno said that it was okay to take pain pills for a time while you do mind-body/TMS work. It's as @Rabscuttle says…

…and that kind of expectation pressure actually reinforces the brain's danger signals, which makes recovery harder.

 

I know that you must feel more secure in the process, since you’ve seen that your brain has started to pick up the safety signals you’ve been sending it. As a result, your brains have already let go of many of your symptoms and have improved —or are improving— others. And you know that it’s a matter of time and continuing to send those messages for the brain to finally end that prediction of danger about the body.
I still don’t know if what I’m doing is correct or if there’s something I might be avoiding. However, I can’t deny that when a symptom becomes strong, it sometimes makes me doubt whether, in the middle of so much chaos, my brain can truly receive the messages I’m trying to send.
Based on my experience and what I’m trying to do —although I still haven’t had enough time to know if it’s the right or necessary approach— is to respond to the symptoms as well as possible. Even when they are strong, I try to stay calm and not give them emotional weight.
I don’t think it’s necessarily about distracting myself from them or avoiding them, but rather allowing them to be there and showing my brain that they don’t alarm me and that they are not useful signals. Eventually, I believe the brain will realize that these alarms are unnecessary, because we are not giving it the response it expects, which is fear and worry.
Another thing I consider important is movement. Showing the brain that movement is safe contradicts its prediction of danger. In this way, it begins to question the idea that the body is in danger and needs constant protection. I also imagine that an important key is reducing stress in daily life, living as well as possible within each person’s circumstances, and doing simple things like breathing deeply and sleeping well.
I don’t know if this is all that is needed. I would like to know if you believe these things are enough, or if it is really perseverance and time that allow the brain to start realizing that nothing bad is happening, and little by little lower its guard, reduce that sensitization, and gradually let go of and decrease the alarm.

 

Alright, here it goes: does the brain really reach a point where it realizes there is no danger and starts to completely turn off the symptoms—first in one area, then in another—until eventually a person returns to normal?....

 

Yes, the brain does do that. But it doesn't usually happen in a linear way... the symptoms going isn't usually like having all the lights on in your house and systematically going from room to room turning the lights out. As I previously said...

 

I don't think you need completely unshakable belief to start recovering—many don't. But what comes through clearly in your forum posts (including this one) is that you're doing the right things from a place of extreme doubt—not just about if it's working now, but whether it's even possible to fully calm your brain/nervous system and for the symptoms to go. I see how that terrifies you, making the process harder.

Even a tiny shift toward a more hopeful mindset could help those safety signals land stronger. It's the underlying belief that's the real lever.

 

You're right. I have a lot of doubts. I think it has a lot to do with the level of pain and the sensations I’m experiencing. It’s as if I feel that, in the middle of this chaos, I can’t teach my brain a sense of safety, or that I have a brain that isn’t very receptive. Even though it sounds silly to say that, because I haven’t been doing this for very long. I suppose it will take time before I start to notice something positive.