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[Alouqua47]

No sé qué quiero de esta publicación. A veces, simplemente me doy cuenta de lo que me pasa y puedo entrar en pánico. Entonces me concentro en leer sus historias, especialmente las de quienes han tenido problemas neurológicos y han mejorado. Intento animarme diciendo que es solo cuestión de tiempo y cosas así, pero luego empiezo a pensar... no, lo que tengo es grave. El dolor nervioso es muy intenso y constante.
El miedo siempre está presente, y si eso es lo que me impide sanar, no sé si podré salir de este círculo vicioso. Me encantaría hablar con personas que se recuperaron de afecciones muy graves, como... no sé, síndrome de dolor regional complejo, creo que se llama. Me cuesta creer cómo pudieron recuperarse, y luego pienso que probablemente les llevó años y que yo solo tengo que soportarlo día a día.
Sé que algunas personas aquí han pasado por algo similar, pero creo que lo que más me afecta es el lugar... que esté en mis brazos. Ojalá fuera algo que iba y venía, como les pasa a algunas personas. Cuando es constante y aterrador, lo sacude todo.
Sé que el mecanismo para revertir esto es el mismo para todos, ¿verdad? Perder el miedo. En general. Verlo con realismo. La dificultad es diferente. Algunas personas tienen un síntoma más típico, como dolor muscular o articular que se desplaza de un lugar a otro. Otros parecemos llenarnos de síntomas, y es aún peor cuando son de este tipo... como... no sé.
Lo siento. Solo necesito palabras de aliento. Que me digan que esto realmente puede revertirse, que no estoy loca, que no soy una anomalía, que esto existe, que el cerebro lo creó. Y aunque lo creo, me cuesta creer que pueda enseñarle a mi cerebro a no volver a crearlo.
No puedo creerlo. Siento que soy un caso único y que todo lo hago mal todo el tiempo. Intento vivir, ignorarlo, permitirlo... pero cuando se vuelve más fuerte, lloro. Y no puedo evitar pedir: por favor, que esto termine o al menos empiece a mejorar.
Y luego pienso… quizás lo estoy haciendo bien, pero quizás sólo sean necesarios años de sufrimiento.

 

[BloodMoon]

"I’d love to talk to people who’ve recovered from very serious conditions, like… I don’t know, complex regional pain syndrome, I think it’s called. It’s hard for me to believe how they managed to recover, and then I think that maybe it took them years, and that I just have to endure it day by day.

I know some people here have gone through something similar, but I think what affects me most is the location… that it’s in my arms. I wish it were something that came and went, like it does for some people. When it’s constant and frightening, it shakes everything."

@TG957 recovered from complex regional pain syndrome and her symptoms affected her arms and hands. This her excellent book about her recovery journey: https://www.amazon.com/Defying-Verd...d=1773012989&sprefix=tamara+gu,aps,205&sr=8-1

 

[Alouqua47]

Thank you for replying. Yes, I read some of the stories and watched a video where she was telling her story, but it left me very confused. She said that she lost her fear, of course, but she also practiced meditation, which I’m not necessarily sure is that important. In the end, it’s really about fear, right? She also doesn’t say how long it took her.
Maybe what surprises me is that people with such a high level of pain can keep living and not fall into catastrophizing or something like that. Sometimes when the pain is very intense, I feel emotionally exhausted from trying to hold in my emotions and not worry about the pain. I just can’t. Most days the pain is agonizing. I only have a few moments of relief, and sometimes it even gets stronger. It varies throughout the day. I don’t even know why.
I don’t know if you’ve ever experienced pain that strong. The truth is that I struggle a lot, because I also have symptoms in many places. When there isn’t pain, I feel uncomfortable. If I sit down, I feel burning on one side. Sometimes I feel like my body doesn’t belong to me.
I started doing the work, and instead of the pain disappearing, it moved somewhere else. It just spread to parts of my body that previously had nothing. Before that, I felt a bit more free—at least my thighs were okay—but everything has gotten worse. Trying to fix it only made the situation worse. I’m sorry for being like this. I’m emotionally exhausted.
Do you know what it’s like to walk all day to regulate yourself emotionally and train your fear? Even if the pain is lower, I still feel the need to do it. Sitting is uncomfortable, lying down is also uncomfortable. The only thing I really enjoy is the nighttime. Somehow I lie down and find a bit of safety from the pain. I read for a while, and eventually I fall asleep.
I think it was you who once shared a handout about your plan, though I’m not completely sure. I think it said to do different activities every half hour, which feels a bit stressful to me, and also that I shouldn’t do too much on the days when I feel well, which doesn’t always fit with reality.
I don’t know how you manage it or how you improved so much. How long did it take you to get to where you are now? Did you ever have very intense pain somewhere that you couldn’t stop worrying about? Or did you ever have pain in your hands that made it hard to do your daily activities and enjoy life, at least a little?

"I’d love to talk to people who’ve recovered from very serious conditions, like… I don’t know, complex regional pain syndrome, I think it’s called. It’s hard for me to believe how they managed to recover, and then I think that maybe it took them years, and that I just have to endure it day by day.

I know some people here have gone through something similar, but I think what affects me most is the location… that it’s in my arms. I wish it were something that came and went, like it does for some people. When it’s constant and frightening, it shakes everything."

@TG957 recovered from complex regional pain syndrome and her symptoms affected her arms and hands. This her excellent book about her recovery journey: https://www.amazon.com/Defying-Verdict-Defeated-Chronic-Pain/dp/1653507837/ref=sr_1_1?crid=8ISGDTD9XUHO&dib=eyJ2IjoiMSJ9.ltvTdPXFu6sML4ZHAFDeuA.qUZ8TU1dR7gAYi_T9694OZ1e-fA6P1Y_xxz13jZtgOQ&dib_tag=se&keywords=tamara+gurin+books&qid=1773012989&sprefix=tamara+gu,aps,205&sr=8-1

 

[Rabscuttle]

Thank you for replying. Yes, I read some of the stories and watched a video where she was telling her story, but it left me very confused. She said that she lost her fear, of course, but she also practiced meditation, which I’m not necessarily sure is that important. In the end, it’s really about fear, right? She also doesn’t say how long it took her.
Maybe what surprises me is that people with such a high level of pain can keep living and not fall into catastrophizing or something like that. Sometimes when the pain is very intense, I feel emotionally exhausted from trying to hold in my emotions and not worry about the pain. I just can’t. Most days the pain is agonizing. I only have a few moments of relief, and sometimes it even gets stronger. It varies throughout the day. I don’t even know why.
I don’t know if you’ve ever experienced pain that strong. The truth is that I struggle a lot, because I also have symptoms in many places. When there isn’t pain, I feel uncomfortable. If I sit down, I feel burning on one side. Sometimes I feel like my body doesn’t belong to me.
I started doing the work, and instead of the pain disappearing, it moved somewhere else. It just spread to parts of my body that previously had nothing. Before that, I felt a bit more free—at least my thighs were okay—but everything has gotten worse. Trying to fix it only made the situation worse. I’m sorry for being like this. I’m emotionally exhausted.
Do you know what it’s like to walk all day to regulate yourself emotionally and train your fear? Even if the pain is lower, I still feel the need to do it. Sitting is uncomfortable, lying down is also uncomfortable. The only thing I really enjoy is the nighttime. Somehow I lie down and find a bit of safety from the pain. I read for a while, and eventually I fall asleep.
I think it was you who once shared a handout about your plan, though I’m not completely sure. I think it said to do different activities every half hour, which feels a bit stressful to me, and also that I shouldn’t do too much on the days when I feel well, which doesn’t always fit with reality.
I don’t know how you manage it or how you improved so much. How long did it take you to get to where you are now? Did you ever have very intense pain somewhere that you couldn’t stop worrying about? Or did you ever have pain in your hands that made it hard to do your daily activities and enjoy life, at least a little?

Meditation is so useful. It helps detach from our thoughts and realize that they aren’t really us. Alouqua, it’s very clear you are struggling with ocd looping thoughts. You’re predicting a terrible future that is destined for pain and horror. The pain sucks, I know, but it’s really those thoughts of, “is this the rest of my life?” That completely obliterates us. If the pain can jump around or increase in severity or decrease at night why can’t it shut off completely?

None of this is easy. It’s hell. I’ve dealt with horrible pains and horrible thoughts that had me stare at my gun and wish I had the strength to end it. I’m still here. And as a whole I’ve made such good progress. But still it’s a battle. Still the flares have me fall into old thought patterns, the catastrophizing, but I snap out quicker, see the light sooner. It’s not passive, it is consistent work to oppose those thoughts in our heads saying everything is fucked and ruined. It isn’t. But it’s up to us to show our brain that it can trust us again. Earning that trust looks different to everyone, for some it’s the emotional work, others it’s resuming life in-spite of symptoms. I too have found the most success with meditation. But I’m also trying to be kinder to myself, to reengage with life and people and starting putting myself out there. Closed off and alone is not a good place for a tmser, despite our brain telling us otherwise.

 

[BloodMoon]

but she also practiced meditation, which I’m not necessarily sure is that important.

I believe that with Tamara’s recovery meditation was the key thing that got her better. It is true that not everyone who recovers from mind–body pain and other symptoms uses meditation; however, you wanted to hear about a recovery story from complex regional pain syndrome, and that’s how she did it.

She also doesn’t say how long it took her.

She does in her book. I believe it took about 2 years to fully recover from all of her symptoms, but the pain left her sooner than that (I’m not sure precisely how long that took). Bear in mind that a good part of those 2 years initially involved trying/experimenting with different approaches.

I feel emotionally exhausted from trying to hold in my emotions

To recover you need to do the opposite of holding in your emotions: you need to acknowledge them, feel them and release them in a safe way; your emotions are energy that is building up like a pressure cooker. A lot of people use journaling for that; if writing is difficult for you, you could release them by talking into your phone or into a dictaphone instead.

I don’t know if you’ve ever experienced pain that strong.

I have experienced excruciating pain – I was bedridden due to it for a total of over 18 months and housebound for many years. I also know what it’s like to hurt from head to toe all of the time. I suffered from a myriad of uncomfortable and disabling symptoms, too numerous to list here; they popped up all over the place like in the game of whack‑a‑mole. So, it might feel like it, but you’re not a “special” case, far from it.

did you ever have pain in your hands that made it hard to do your daily activities and enjoy life, at least a little?

Yes, both hands and wrists (and arms and shoulders) have hurt at various times for varying periods of time over the years. The worst was when my right hand (my dominant hand) suddenly felt like a truck had run over it (and I’m not exaggerating at all about that!)… I couldn’t move it due to how severe the pain was and couldn’t even do basic things like brushing my teeth for many months.

I think it said to do different activities every half hour, which feels a bit stressful to me, and also that I shouldn’t do too much on the days when I feel well, which doesn’t always fit with reality.

The idea behind it is that you take baby steps with doing things where you can. I started my recovery from “rock bottom” bedridden. I couldn’t weight‑bear or stand without severe pain, so at the start of my journey I began by standing for just a minute a day and gradually built from there (to now being able to stand in front of the TV doing some moderate exercises for around 35–45 minutes at a time, twice a day).

A few gentle ideas that might help you right now...

• You don’t have to use formal meditation if that puts you off – anything that helps you 'sit' with your sensations without fighting them (very simple breath‑focused mindfulness, a body‑scan audio, or even just noticing “this is fear, this is pain” for 30 seconds) is already training your brain in a new direction.

• Instead of trying to hold everything in all day, experiment with one small “emotional outlet” window: 10–15 minutes of raw journaling, voice‑notes, or even speaking out loud what you’re actually feeling (anger, grief, fear, frustration) so your body doesn’t have to carry it all.

• Because your pain moves around, you can assume your system is overprotective rather than broken, so you can pick one tiny activity (for example, a few minutes of a hobby you miss) and repeat it daily, letting your brain learn “I can do this and be safe”, and only increasing very gradually.

• Nights feel safest for you; you could build on that by creating a brief soothing “evening ritual” (reading, very gentle stretching, a short meditation or breathing practice) and then borrowing a tiny piece of that same ritual in the daytime so your body starts to associate the day with a bit of that safety too.

I know you are utterly exhausted by all of this and it makes complete sense that you feel that way. You are not failing; your system is just working overtime to protect you, and with small, kind, consistent steps it can learn that it no longer needs to stay on red alert all the time.