Curable app

[jamie13]

I'm not sure the best place to post this, but I just discovered this app called Curable, and I hope it could be of some help to some of you. I completely understand that our illness won't be cured with therapy (I've tried for years, hoping therapy could at least be a piece of the puzzle for me, but it hasn't shifted anything in my illness for me), but Curable seems a bit different. It's focused on chronic pain. I'm not an advocate just yet, but I have listened to about five of the videos so far, and I do find it interesting. I don't have a chronic PAIN anymore, I'm left with chronic fatigue, so I think it would potentially help some of you who do have chronic pain even more than me, so I just wanted to share.

It's free to download in the app store, but I think they do ask for a subscription after you've gone through a certain portion of the program. I haven't gotten that far yet.

Sorry if this has already been discussed. I didn't see a topic for it when I did a quick search.

 

[xebex]

i have significantly reduced my back pain and muscles spasms using curable techniques. once the pain and spasms had gone (it took about 4-5 months ) I could feel how unstable my spine was and realised it was causing my issues - I do believe it's causing my nervous system to shut me down to try and protect me - brain training has also been helpful to calm that response - now using the Cusack protocol to tighten the ligaments which I do belive are made lax by our weird immune state and am already having some improvement after a couple of weeks!

 

[wabi-sabi]

This looks like it's based on the BPS model which I've come to hate as well as pain reprocessing therapy. I just don't believe that's how pain and the brain work, based on my experience of them.

Now if it gives you some relaxation techniques, that could be useful...

 

[jamie13]

i have significantly reduced my back pain and muscles spasms using curable techniques. once the pain and spasms had gone (it took about 4-5 months ) I could feel how unstable my spine was and realised it was causing my issues - I do believe it's causing my nervous system to shut me down to try and protect me - brain training has also been helpful to calm that response - now using the Cusack protocol to tighten the ligaments which I do belive are made lax by our weird immune state and am already having some improvement after a couple of weeks!

that is great to hear.
to clarify, it took you 4-5 months using curable’s techniques to significantly reduce some pain?

what is the Cusack protocol?
So glad that’s helping you too! I LOVE to hear when others find some relief!

 

[jamie13]

This looks like it's based on the BPS model which I've come to hate as well as pain reprocessing therapy. I just don't believe that's how pain and the brain work, based on my experience of them.

Now if it gives you some relaxation techniques, that could be useful...

what is BPS model?

I know it does include some meditation stuff but I’m not there yet in the program.

 

[wabi-sabi]

what is BPS model?

BPS means biopsychosocial. It's rather a large and problematic kettle of fish. On the good side, it means that any disease affects people on all three levels and that healthcare people should look after all three levels.

For people with ME/CFS, this model has been used to claim that we don't have a real illness-that it is all in our heads. The BPS people are the ones that came up with the idea of GET and CBT to treat ME/CFS. The psych part- our mistaken thoughts that we are truly sick-make us behave in a certain way-resting a lot. Resting a lot makes us out of shape-bio part-and being out of shape makes it hurt and tire us when we work out. Therefore we mistake these feelings for being actually sick and rest yet more. A vicious circle ensues. Socially we enjoy the sick role- all those disability payments you know so we don't have to work and family members bringing us chicken soup and fussing over us. This social reenforcement for "acting sick" again makes us stay sick.

It may be that the BPS model is workable for other illnesses, but it has been used to positively harm people with ME/CFS and stop research into real causes and real cures for our disease. As a pwME, I hate the BPS model passionately and automatically distrust anyone who advocates it. That could be unfair on my part.

Anyone with chronic illness, fatigue, or pain knows that those conditions affect you psychologically and change your social interactions very profoundly. The BPS model dumbs down and trivializes these real and painful connections and doesn't really provide help for them. Most importantly it denies the biologic and physical realities of disease and encourages practitioners to deal with physical diseases on an emotional level, thus hindering research that would actually cure or treat the disease.

Upshot: Yes, I have noticed that having a serious illness makes me sad and lonely. I don't need a fancy model to tell me that. Have these researchers really thought about how condescending that model is? But if you keep focusing on the sad and lonely part you will never cure the illness that causes them.

 

[wabi-sabi]

MEpedia says it better than I do.

https://me-pedia.org/wiki/Biopsychosocial_model

 

[wabi-sabi]

The ME Association does a good job too.

https://meassociation.org.uk/wp-con...y-Review-MECFS-and-the-BPS-model-29.06.18.pdf

 

[jamie13]

BPS means biopsychosocial. It's rather a large and problematic kettle of fish. On the good side, it means that any disease affects people on all three levels and that healthcare people should look after all three levels.

For people with ME/CFS, this model has been used to claim that we don't have a real illness-that it is all in our heads. The BPS people are the ones that came up with the idea of GET and CBT to treat ME/CFS. The psych part- our mistaken thoughts that we are truly sick-make us behave in a certain way-resting a lot. Resting a lot makes us out of shape-bio part-and being out of shape makes it hurt and tire us when we work out. Therefore we mistake these feelings for being actually sick and rest yet more. A vicious circle ensues. Socially we enjoy the sick role- all those disability payments you know so we don't have to work and family members bringing us chicken soup and fussing over us. This social reenforcement for "acting sick" again makes us stay sick.

It may be that the BPS model is workable for other illnesses, but it has been used to positively harm people with ME/CFS and stop research into real causes and real cures for our disease. As a pwME, I hate the BPS model passionately and automatically distrust anyone who advocates it. That could be unfair on my part.

Anyone with chronic illness, fatigue, or pain knows that those conditions affect you psychologically and change your social interactions very profoundly. The BPS model dumbs down and trivializes these real and painful connections and doesn't really provide help for them. Most importantly it denies the biologic and physical realities of disease and encourages practitioners to deal with physical diseases on an emotional level, thus hindering research that would actually cure or treat the disease.

Upshot: Yes, I have noticed that having a serious illness makes me sad and lonely. I don't need a fancy model to tell me that. Have these researchers really thought about how condescending that model is? But if you keep focusing on the sad and lonely part you will never cure the illness that causes them.

ohhhh, gosh. Gross. I hate that. BPS Model is crap! I don’t believe any of that, and I don’t get the impression that is the Curable app’s intention either. I could be wrong because I’m not far along in the program, but I don’t feel that way so far.

again, the Curable app is probably best for people with true physical pain, which I don’t technically have. But having a very chronic ailment of debilitating fatigue, I thought I’d give it a try. I don’t think therapy is the answer, and I wouldn’t suggest that.

I think therapy might help some of us “cope”, but it won’t fix what is truly wrong. It’s never really even helped me personally cope that much, lol. But I’m sure it’s beneficial for some, as long as you don’t believe the illness is in your head because we know it is not!!!!

 

[wabi-sabi]

Curable has the BPS model in their FAQ section, so it seems like it's a guiding principle for them. They try to put a good spin on it, and since you've tried the app and I haven't they might be doing a good job of it.

As I said, after the harm that's been done to ME/CFS patients under the auspices of BPS, I hate it. There are healthy and positive ways to take account of a person's emotional and social states and how they relate to physical pain. Maybe curable gets this right.

My fears with pain reprocessing treatments are that we are training the brain not to feel the pain, rather than dealing with what's causing the pain. Based on some people's positive experiences, that seems very possible. Trouble is there's an assumption in healthcare that acute pain is a warning sign from the body that damage is happening and you need to stop what you're doing and take care of it. Chronic pain is seen as warning signal in the absence of damage. You should ignore it or turn off the signal, as PRT tries to do.

Based on my experience of chronic pain, I think it is just as much a warning of real damage as is acute pain. I don't want to take the batteries out of the smoke detector with PRT. I want to put out the fire with medical treatment.

 

[Rufous McKinney]

I think it is just as much a warning of real damage as is acute pain.

I think you've hit on a major point there.

Its one thing to distract oneself, in a manner which reduces the attention going to Pain X or Y. But thats entirely different from the Pain means nothing, should be ignored and you should go hike anyway.

 

[xebex]

@jamie I reduced my pain significantly using the curable model plus radical acceptance and EFT in about 4-5 months, but I’m still working on it all the time. The problem is still there but I now have the energy and resilience to actually deal with it because the pain is so considerably better. To give you an idea of how much it’s helped I was walking 500steps a day 10minths ago and yesterday I did 7000! my average is about 3500. I still get the pain and there is still something wrong with my spine but my quality of life is sgnificanltly improved. 10 months ago I could not stand up for more than 20mins 1x a day. I couldn’t prepare my own meals and I was very near severe. I was essentially bed ridden though it was actually the sofa. I can now be upright for 30mins every hour I can do a 30min walk every other day I have even rolled around on my skateboard! I did NOT do graded exercise and it Isnt about making myself believe I was better with magical thinking I have tried that, it doesn’t work.

i do believe it has its limits and if you are dealing with an injury that is still “active” so to speak it’s not going to fix it. It’s mainly meant for old injuries in which the nervous system is still in protect mode and you are essentially stuck in a loop and need to calm the nervous system and tell it it’s safe. There’s also lots of stuff about psychological pain caused by emotional trauma but my pain is not from emotional trauma but physical trauma and it has still helped immensely. Of course my ME is still active but crashes aren’t being triggers by pain or being upright so much anymore. it’s ISNT a cure as I do still crash but my god am I grateful for persevering with it! I was suicidal a year ago and now I’m sitting at the skatepark with my kid!!!!

The cusack protocol is designed for people with EDS. I don’t have EDS but I do believe the immune state in ME causes ligament laxity and all sorts of terrible spinal problems which cause a lot of pain and trigger the nervous system to shut you down. It involves several supplements the main ones being maitake or George’s fractionally distilled aloe which are polysaccharides which can help strengthen the lax ligaments.

 

[jamie13]

@jamie I reduced my pain significantly using the curable model plus radical acceptance and EFT in about 4-5 months, but I’m still working on it all the time. The problem is still there but I now have the energy and resilience to actually deal with it because the pain is so considerably better. To give you an idea of how much it’s helped I was walking 500steps a day 10minths ago and yesterday I did 7000! my average is about 3500. I still get the pain and there is still something wrong with my spine but my quality of life is sgnificanltly improved. 10 months ago I could not stand up for more than 20mins 1x a day. I couldn’t prepare my own meals and I was very near severe. I was essentially bed ridden though it was actually the sofa. I can now be upright for 30mins every hour I can do a 30min walk every other day I have even rolled around on my skateboard! I did NOT do graded exercise and it Isnt about making myself believe I was better with magical thinking I have tried that, it doesn’t work.

i do believe it has its limits and if you are dealing with an injury that is still “active” so to speak it’s not going to fix it. It’s mainly meant for old injuries in which the nervous system is still in protect mode and you are essentially stuck in a loop and need to calm the nervous system and tell it it’s safe. There’s also lots of stuff about psychological pain caused by emotional trauma but my pain is not from emotional trauma but physical trauma and it has still helped immensely. Of course my ME is still active but crashes aren’t being triggers by pain or being upright so much anymore. it’s ISNT a cure as I do still crash but my god am I grateful for persevering with it! I was suicidal a year ago and now I’m sitting at the skatepark with my kid!!!!

The cusack protocol is designed for people with EDS. I don’t have EDS but I do believe the immune state in ME causes ligament laxity and all sorts of terrible spinal problems which cause a lot of pain and trigger the nervous system to shut you down. It involves several supplements the main ones being maitake or George’s fractionally distilled aloe which are polysaccharides which can help strengthen the lax ligaments.

Oh WOW. I am SO happy for you!!! What an amazing improvement. Thank you for sharing your story, it's inspiring. I know you aren't completely cured/healed, but if you have a lot of your quality of life back, I feel like that's all we can ask for at this time, so I am thrilled for you.

 

[jamie13]

I think you've hit on a major point there.

Its one thing to distract oneself, in a manner which reduces the attention going to Pain X or Y. But thats entirely different from the Pain means nothing, should be ignored and you should go hike anyway.

10000% agree!

I would never suggest that any of you or myself "ignore" and use our non-existent energy anyway.

 

[jamie13]

Curable has the BPS model in their FAQ section, so it seems like it's a guiding principle for them. They try to put a good spin on it, and since you've tried the app and I haven't they might be doing a good job of it.

As I said, after the harm that's been done to ME/CFS patients under the auspices of BPS, I hate it. There are healthy and positive ways to take account of a person's emotional and social states and how they relate to physical pain. Maybe curable gets this right.

My fears with pain reprocessing treatments are that we are training the brain not to feel the pain, rather than dealing with what's causing the pain. Based on some people's positive experiences, that seems very possible. Trouble is there's an assumption in healthcare that acute pain is a warning sign from the body that damage is happening and you need to stop what you're doing and take care of it. Chronic pain is seen as warning signal in the absence of damage. You should ignore it or turn off the signal, as PRT tries to do.

Based on my experience of chronic pain, I think it is just as much a warning of real damage as is acute pain. I don't want to take the batteries out of the smoke detector with PRT. I want to put out the fire with medical treatment.

Okay, so this is what I found out last night from watching another video in the program on Curable. The logic of the app is using the idea of TMS, like this website talks about: https://unlearnyourpain.com/

I am not sure if that is the exact same thing as BPS or not, I am just now learning about any of this, so I apologize if it is the same as BPS, which does not sound like I agree with at all...

And yes, I agree with you! The pain is real and should be treated properly.

 

[jamie13]

Here is a CFS story on that website I shared:
https://www.unlearnyourpain.com/ryans_story

I have NOT read through Ryan's story yet myself, so I don't have any comments. I'm only sharing if anyone is interested.

 

[wabi-sabi]

Just a quick google- TMS is an acronym for tension myositis syndrome. It's one of the hypotheses for what causes fibro pain. I haven't looked into how much evidence there is for this hypothesis yet. The idea, very simplified, is that muscle tension is causing much of the pain and if that muscle tension were to go away, so would the pain. Unfortunately, this muscle tension is caused be emotional tension, which is why people can't just "relax" and have the pain go away. Hence brain training and relaxation techniques.

i still think this is mostly a misinterpretation of what's going on. 1- lack of evidence for TMS. 2- of course we're all tense and stressed. 3 relaxation helps chronic pain in general and any way you use to relax will be beneficial. Doesn't prove the hypothesis. Will explain better later when able.

 

[wabi-sabi]

The problem is still there but I now have the energy and resilience to actually deal with it because the pain is so considerably better.

Can you say which part of the program helped the most o the techniques you used? I'm quite curious about this, but I don't want to give them my email address and get inundated with endless spam.

I'm also curious about which parts it didn't help for you. Do you have a sense of why?

 

[Azayliah]

I also use Curable. I find some of the meditations helpful for pain. It doesn't remove the other symptoms (ex: muscle tightness, migraine pulses), but the pain eases.

The writing exercises have been useful for understanding what it means to release emotions, but I'm not sure that they have helped with pain. I haven't participated in their community at all, so if there's a support group aspect to the treatment, I'm not getting that at this time.

I found a free pain relief meditation on Curable's podcast and thought, well, why not? It worked for me. @wabi-sabi I think this is the meditation, no signup required: https://www.curablehealth.com/podca...soZglKcCETorhSascL05q655KECHPfnhoCLh0QAvD_BwE

 

[wabi-sabi]

@Azayliah
Thanks so much for sending this. I gave the meditation a try. Would you say that's typical of curable? I find I prefer Insight Timer meditations better, and that app has the benefit of having quite a bit of free content. I also do quite a few free meditations on youtube like this.

What I find so frustrating about curable, other than the paywall, is that I have a pretty good meditation and relaxation practice already, and while I see the benefits for chronic pain, it is very, very far from a cure. Been meditating and relaxing 7 years now and I'm not "cured" yet. Still longing for actual medical treatment. Now I'm at risk of devolving into snark.

I appreciate that these sorts of things help people, and I would certainly be lost without my meditation practice. But I really feel that if my brain were capable of being "retrained" not to feel pain, it would have happened by now. Whatever the curable people are trying to cure, it's not what I have. It feels like a very emotionally painful bait and switch.