Thank you so much for link & all your videos,really appreciated.Stay as well as possible with this ghastly & misunderstood disease.Not much energy for anything,but sometimes I'm so angry due to Drs attitudes & ignorance,other times I just cry,due to the hopelessness.We shouldnt have to be our own Drs in 2024!! All the best Johnny😊
They always told me to exercise. As a teen, early on I took this advice but always got worse. They refused to believe me and just thought I was lazy. Before I was sick at 13 I was stacking dozens of 75 lb hay bales on our family farm. I went from mild to moderate-severe but still have the strength to lift heavy objects (once) then I will crash for days after. Pain medications made it possible to keep doing things but my energy envelope has only gotten smaller and smaller. I can’t leave the house now without crashing, even if it’s just sitting up in the car.
I had a so-called doctor who really did not know about MECFS. She prescribed for me physical therapy and the physical therapist did not know anything about MECFS, either. For me, I was still learning about the illness.....so after a session of the PT, all I could do was crash.....😢😢😢. Not fun to be misunderstood 😔 😑 😔 😑. Today, I am about 80 percent better, but still don't really exercise. I will take walks a few times a week to keep moving. Years ago, I could walk 18 holes of my golf with my bag on my shoulder (about 30 pounds) and sometimes another 9 holes !!! Now, I am happy to walk about a mile at best. Thanks for the report. Keep up the good work, John. Miss Monique 🙂 🙏 🌷 💗
I hear that. I went to a dr who first visit put the pieces together for long cvd, but by the second visit had white(lady)washed the story in his mind to be that I was depressed. He wnated next step to be a PT full assessment, which I knew was counterindicated for ME and so I knew from that and from his "hysterical womaning" me in his memory bank that he was not the dr for me. The words "people don't know what they're capable of until the PT pushes them beyond where they think they can go" was plenty of malpractice and red flag for me. I'm not getting PEM because of your malpractice, that's for sure. I'm sorry that happened!
Hi from Australia, thank you for your videos 😊 GET is dangerous for most people with mecfs, this form of treatment sent me downhill. I have had mecfs for 24 years. I am mostly housebound these days
Hey from Montreal Canada🍁 yea the number of times I’ve heard “just do yoga and light weights, go for short walks” (which I was already doing and still getting worse) made me beyond frustrated and upset. Thankfully my family is slowly coming around but each time i see a new specialist I brace myself for those comments. Thanks for making these videos 😊
OMG right? MANY of us with these complex conditions have lifestyles as clean as the driven snow and have been teaching that stuff for decades before eastern traditional practices became westernized/whitened to "CBT". I get so tired of being in FB groups where people are giving advice when none of us 1)are legally allowed to give med advice and 2)know each other on the daily to be able to speak to one another's real needs moment by moment. Unless I have that level of contact with a person, I couldn't possible know what they need. These conditions are too dynamic.
I’ve had moderate-severe ME/CFS for 6 years, but I have been symptom free for over 2 weeks. Don’t know what’s happened, but it’s incredible to feel healthy again. Stay strong guys. Don’t lose hope. Recovery is possible. ❤️
Im on the other side of the World & Absolutely Horrified to have recently heard,from our Countries Body for ME/cfs whom Im a member,that the General Practitioner's Recent Handbook is NOW in 2024 !! recommending GET for ME/cfs!!! It is currently being taken to the Highest level & ALL below,to have this removed.Devastating news!! Many thanks Johnny for all the info & support you continually give us,World Wide.Followed you 4 a long time but mostly unable to comment.Hope you're doing ok.Off to watch your Full version now😊
Thankfully I never was told to do GET. I remember when everything closed down from COVID and I wasn’t able to go climbing in the gym anymore, and when it reopened, I never got back to my normal difficulty level. I couldn’t understand what was wrong with me when everyone else bounced back to normal, I was only getting worse. I started struggling with routes that were originally a little harder than warmups, and continued to struggle despite climbing 6 hours a week and exercising on the other days. No matter how hard I tried and even though I continued to get stronger (I could hang on four fingers total) I was worsening to the point my old coach noticed. I got bronchitis and never recovered. I remember in my early days of being ill I tried forcing my self to run down my driveway thinking I was out of shape from the bronchitis and couldn’t without feeling like I was going to fall over and pass out. I walked in stores until my body literally gave out and would shrivel up in on itself, I basically had no choice but to get a wheelchair. Before I got sick I unknowingly had POTS and EDS, but I think I my ME/CFS was coming on for a long time. I thought it was normal to be climbing or exercising and fight the urge to pass out and struggle to breathe because of lightheadedness and exhaustion. I definitely have gotten worse over time, but I got worse despite fighting and trying to ignore my symptoms as long as possible until I couldn’t without endangering my health. I pushed the limit and clung to my old life until I couldn’t anymore.
This was me, pretty much, except I was lifting weights. If only there was a test to catch M.E early, perhaps others won't have to go through what we did 😢
So tired of doctors implying that I have this condition they will not name because I am depressed and out-of-condition. I didn’t start out like this. I used to walk easily for miles and climb mountains. I back-packed around the world. I am depressed and out-of-condition BECAUSE I have ME. The medical “experts” nearly killed me with their GET. They still blamed me for not trying hard enough.
Sending gentle hugz. I've posted my abbreviated back story further up the thread, but just so you know, I hear ya. Everyone that I have come across with M.E. was always incredibly active , I was too on my good cycles, so you are not alone. 🕊
I'm very lucky, I figured out that too much exercise made me crash very early on in my health journey. I didn't know I had ME at the time, but I knew I had to stay within my limits to avoid crashes, and I did a lot of other things that (I like to think) slowed my decline. My diagnosis gave me access to LDN, and now I feel so much better. Not 100 % but maybe 90 %. I can do much more too, before I crash. That's not due to GET at all, but to LDN, and I'm very lucky my body can handle the medication. I do exercise, but gently, and I mind the balance between rest and activity. That's just how it is. NEVER listen to anyone that tells you that you should "push yourself". Listen to your body, let it guide how much you do. Only you can know where your limit is.
It was interesting, years ago before my condition reached its current diagnosable state I heard an interview with Debra Messing, who I shared a body type with and who described exercise as not in her life because "every time I exercise, I get sick. I finally stopped because I just get sick every time." I experienced that too - I'd have to stay within very specific micromanaged parameters. Of course I still had some alcohol in my diet then and I don't know anyone who can actually stay well with that input (sometimes they don't call it "ill", but if they're always on OTC drugs or have a sinus infection, they're ill). I suspect if someone had taught me what a terrible input that is in any amount, I would have declined that as a younger person, but everyone's so in denial about that being a toxin that no one told me to keep my liver well sheltered so that later in life I'd be more protected. At this point I'm in a stage of not doing anything even when I have energy for a little bit, because I feel I have to save it up. It's a real state to work through since deconditioning is so dangerous as well.
@@amandacampbell4479 Ya, people get really sensitive about that. I can see why he didnt mention it. But I also agree that they probably had something else going on
I think some of them just happened to improve at the same time as trying GET - for example, in my case I had active CMV infection for two years straight. Another year of laying in bed then my family forced me to start doing things again. No one knew I had ME or anything. I was in agony and crying on the floor every morning but over the course of 2 years I “got better” but only in the sense that I was doing things again but not much. I was still extremely sick and any exertion made it worse. I think I had a remission to mild severity for a year or two then I went back to moderate because “pushing through” makes you worse even if you have temporarily gotten better for a little while. I think a lot of people saying they got better are in denial about their illness. If they can get a part time job again it’s easier to believe the gaslighting from doctors and family. But unfortunately you are likely to end up back at housebound level if you were like me and ignored your symptoms and kept pushing through. I was able to work 15 hours a week at my best during this illness. Now I haven’t been able to do any work at all not even one hour for over 4 years.
If Post exertional worsening of symptoms is the key characteristic for a diagnosis of M.E. then it must be impossible for GET to help an ME sufferer. It could surely only make us worse. But if it has helped a patient, it just means they had a different illness.
(Very short this time from self)Ur very correct johnny when i do simple everyday things i get out of breath easy with palputations so i have to sit down to get my breath back & stop the palputations...i know these are very simple things but i cannot do them 80% of the time..stay well👍
I have quite bad fibromyalgia. I get severe fatigue with it, sadly. I get fed up of medical professionals telling fibromyalgia to do exercise as part of their recovery. I've tried doing exercise and it makes me poorly afterwards. Even gentle exercises like tai chi, swimming or walking can be painful or cause me fatigue sometimes. On a rare good day, I can only do very short and slow walks. But on a bad day, I'm housebound or bedbound.
I hear ya! I have Fibromyalgia as well as M.E. (and other things too unfortunately) You are absolutely not alone in what you are going through and your experiences with medical community are similar to what we have all been through at various stages. Sending gentle hugz 🕊
I wasn't aware that ANYONE with ME has been helped by GET. If so, I'm not sure ME is the correct diagnosis for them, lol. But yeah, standard story here: made worse by following shitty, harmful advice. I used to be a competitive athlete! I loved it but had to quit because I was struggling to work even part time.
I’m a bit of an anomaly perhaps, because I still go to the gym and train; I’m a former athlete, despite living with ME/CFS, and the ME Association told me that training is controversial. And yet I do. However, it’s not one size fits all for any of us. Sometimes I’m not able to do it and that’s ok, and I still don’t really know if it’s the right thing, however I choose to carry on and I’m not prepared to give it up for the benefits mentally and physically, that I gain. I’ve trained for almost 30yrs and I also do know my limits; of course I’m not able to lift weights in the way that I could..but still.. Like I said it’s not one size fits all, and the so called experts need to reeducate themselves x
GET can be useful if used extremely slowly, always dictated by the sufferer, always within the current baseline without causing significant PEM, probably starting with about half of what you think you can do, half as often as you think you can do it, doing something you enjoy, and focusing on strength training or stretching, not cardio. Also, if there is any significant PEM, it has to be paused. It's like a delicate dance. I don't think anyone can prescribe a program that covers all of these variables. GET absolutely has to be patient led, and it's not about reconditioning per se. It's about making new neural connections in the brain. When ME/CFS patients increase their baseline, it's like a form of GET, but they are often doing it through every day living. I started with three reps of 5 exercises with a small weight. I can now do a full set with a higher weight. I'm about to go on a walk outside with a walker which I couldn't do before as I was mostly bed bound. Used incorrectly GET is an absolute disaster, and in my opinion, is not something that could ever be 'prescribed' for ME patients.
The difficult part is when you don’t know if you have just POTS, or POTS + ME/CFS. Because with POTS, exercise is the recommended treatment. But with ME/CFS, exercise can be harmful. I’m diagnosed with POTS. I think I also have ME/CFS but I don’t have a diagnosis. I am in cardiac rehabilitation right now doing exercise 2x a week for POTS. Even though I am fine working out, I am feeling very poorly overall and have very little energy now. People around me keep saying I just need to push through and I’ll eventually get stronger and build up more stamina. That it gets worse before it gets better. But I am worried that I will just keep being in a perpetual state of near-crash. How long until it starts to get better? None of the doctors can tell me.
Like I said in my comment, I have both, and if you have ME/CFS you need to be EXTREMELY careful. Exercising might help temporarily but may come back to bite you in the long run. Post exertional malaise is a huge indicator of ME/CFS. If you have ME/CFS and are okay working out but are getting worse, you might have mild ME/CFS. Some people who are on the milder side can handle light exercise. Even if you just have POTS I would be careful, pushing yourself past your limit could make it worse. Honestly people who keep telling you to keep pushing (as good as their intentions may be), who refuse to listen to your thoughts on the matter will continue to tell you you’re not doing enough, because to a healthy person our best is often way worse than their worst, so it looks like we aren’t trying enough. Society has pushed this idea of pushing through, if you’re sick you “just have to fight hard enough”. Sometimes “fighting hard enough” means balancing trying to improve and also resting and stopping when your body is saying enough. I’m too sick to exercise for POTS but I find high quality electrolytes, medication, compression socks, and not sitting up or standing as much as possible, don’t get rid of the symptoms -including POTS fatigue, but do help majorly. Health Rising .Com has information that can help you figure out if you have ME/CFS.
Was was an athlete my whole life until I came down with CFS. Exercise always sends me into a crash cycle. It's the worst part of this illness - not being able to exercise.
It's definitely not the worst. You are obviously very mild if you say this. Laying in a dark room 24/7 not able to eat or to go to the bathroom without help while enduring relentless symptoms is the worst about this illness. Pure torturous suffering. This illness should be called Melignant Neuroimmune Syndrome, not CFS.
I've had two weeks vacation which has been anything but. I allowed myself to push through thinking if have time to recover, I've not had that time and i don't think I'll have the time to recover when i get home either. I feel this is now me, I'm not going to bounce back from this. It's crazy, i know if i even walk sort distances i crash, what was i thinking? But that's it isn't it, thinking! 8 years in and I'm still fighting against this and making myself worse. Do you know, it was self imposed GET which made me realise i had this in the first place. Thankfully, my current GP does not subscribe to the practise, actually, i just had offered to up my medication!
Is it possible for a spinal fusion surgery to cause ME / CFS? I had that surgery when I was 12 or so if I remember correctly & then at 21 I was down for 2 weeks with Covid for the first (& only time) before getting vaccinated
Some (not all) folks attribute their ME to inoculations. Also there are a lot of medications including surgical ones that contain preservatives containing mercury, and I know for some of us our heavy metal overage really contributes to the inability of the body to convert oxygen into energy (ME issue), so depending on how the surgery was done and with what implements/medications, you know your body better than anyone else does. The only purpose in knowing a cause is if it gets us further in knowing how to help ourselves, though, and I'm not sure it would in this case, other than perhaps looking into heavy metal amounts in the organs, but everyone should do whatever they feel is best for them
My family has always been hard on me because of my illness. Constantly they would say exercise it'll make you better. So stupid me; I tried to placate them. I started exercising. Not much. 5 to 10 minutes a day. But even that was too much it seems. It got to the point where my heart felt like it was gunna burst outta my chest. I grabbed my sister (stupid judgemental bitch) and said I need to go to the Chemist to get my blood pressure checked. It was 198/124. Lesson? Don't exercise. It's very dangerous for people with ME/CFS to do physical activity.
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Thank you so much for link & all your videos,really appreciated.Stay as well as possible with this ghastly & misunderstood disease.Not much energy for anything,but sometimes I'm so angry due to Drs attitudes & ignorance,other times I just cry,due to the hopelessness.We shouldnt have to be our own Drs in 2024!! All the best Johnny😊
They always told me to exercise. As a teen, early on I took this advice but always got worse. They refused to believe me and just thought I was lazy. Before I was sick at 13 I was stacking dozens of 75 lb hay bales on our family farm. I went from mild to moderate-severe but still have the strength to lift heavy objects (once) then I will crash for days after. Pain medications made it possible to keep doing things but my energy envelope has only gotten smaller and smaller. I can’t leave the house now without crashing, even if it’s just sitting up in the car.
I had a so-called doctor who really did not know about MECFS. She prescribed for me physical therapy and the physical therapist did not know anything about MECFS, either. For me, I was still learning about the illness.....so after a session of the PT, all I could do was crash.....😢😢😢. Not fun to be misunderstood 😔 😑 😔 😑.
Today, I am about 80 percent better, but still don't really exercise. I will take walks a few times a week to keep moving. Years ago, I could walk 18 holes of my golf with my bag on my shoulder (about 30 pounds) and sometimes another 9 holes !!! Now, I am happy to walk about a mile at best.
Thanks for the report. Keep up the good work, John.
Miss Monique 🙂 🙏 🌷 💗
I hear that. I went to a dr who first visit put the pieces together for long cvd, but by the second visit had white(lady)washed the story in his mind to be that I was depressed. He wnated next step to be a PT full assessment, which I knew was counterindicated for ME and so I knew from that and from his "hysterical womaning" me in his memory bank that he was not the dr for me. The words "people don't know what they're capable of until the PT pushes them beyond where they think they can go" was plenty of malpractice and red flag for me. I'm not getting PEM because of your malpractice, that's for sure. I'm sorry that happened!
Hi from Australia, thank you for your videos 😊
GET is dangerous for most people with mecfs, this form of treatment sent me downhill. I have had mecfs for 24 years. I am mostly housebound these days
That sounds quite like me. Isn't it funny how all our stories resemble each other? All over the world?
Hey from Montreal Canada🍁 yea the number of times I’ve heard “just do yoga and light weights, go for short walks” (which I was already doing and still getting worse) made me beyond frustrated and upset. Thankfully my family is slowly coming around but each time i see a new specialist I brace myself for those comments. Thanks for making these videos 😊
Hey there!
OMG right? MANY of us with these complex conditions have lifestyles as clean as the driven snow and have been teaching that stuff for decades before eastern traditional practices became westernized/whitened to "CBT". I get so tired of being in FB groups where people are giving advice when none of us 1)are legally allowed to give med advice and 2)know each other on the daily to be able to speak to one another's real needs moment by moment. Unless I have that level of contact with a person, I couldn't possible know what they need. These conditions are too dynamic.
I’ve had moderate-severe ME/CFS for 6 years, but I have been symptom free for over 2 weeks. Don’t know what’s happened, but it’s incredible to feel healthy again. Stay strong guys. Don’t lose hope. Recovery is possible. ❤️
And I agree, GET didn’t work for me.
Im on the other side of the World & Absolutely Horrified to have recently heard,from our Countries Body for ME/cfs whom Im a member,that the General Practitioner's Recent Handbook is NOW in 2024 !! recommending GET for ME/cfs!!! It is currently being taken to the Highest level & ALL below,to have this removed.Devastating news!! Many thanks Johnny for all the info & support you continually give us,World Wide.Followed you 4 a long time but mostly unable to comment.Hope you're doing ok.Off to watch your Full version now😊
Thankfully I never was told to do GET.
I remember when everything closed down from COVID and I wasn’t able to go climbing in the gym anymore, and when it reopened, I never got back to my normal difficulty level. I couldn’t understand what was wrong with me when everyone else bounced back to normal, I was only getting worse. I started struggling with routes that were originally a little harder than warmups, and continued to struggle despite climbing 6 hours a week and exercising on the other days. No matter how hard I tried and even though I continued to get stronger (I could hang on four fingers total) I was worsening to the point my old coach noticed.
I got bronchitis and never recovered.
I remember in my early days of being ill I tried forcing my self to run down my driveway thinking I was out of shape from the bronchitis and couldn’t without feeling like I was going to fall over and pass out.
I walked in stores until my body literally gave out and would shrivel up in on itself, I basically had no choice but to get a wheelchair.
Before I got sick I unknowingly had POTS and EDS, but I think I my ME/CFS was coming on for a long time.
I thought it was normal to be climbing or exercising and fight the urge to pass out and struggle to breathe because of lightheadedness and exhaustion.
I definitely have gotten worse over time, but I got worse despite fighting and trying to ignore my symptoms as long as possible until I couldn’t without endangering my health. I pushed the limit and clung to my old life until I couldn’t anymore.
This was me, pretty much, except I was lifting weights. If only there was a test to catch M.E early, perhaps others won't have to go through what we did 😢
So tired of doctors implying that I have this condition they will not name because I am depressed and out-of-condition. I didn’t start out like this. I used to walk easily for miles and climb mountains. I back-packed around the world. I am depressed and out-of-condition BECAUSE I have ME. The medical “experts” nearly killed me with their GET. They still blamed me for not trying hard enough.
Sorry to hear this. Ya GET is dangerous. I can't believe people are still prescribed that.
Sending gentle hugz. I've posted my abbreviated back story further up the thread, but just so you know, I hear ya. Everyone that I have come across with M.E. was always incredibly active , I was too on my good cycles, so you are not alone. 🕊
I am so sorry. I know exactly what you mean. ❤
Same here :( 💔 I’m so sorry friend, you don’t deserve this (nor do any of us!), I hope the days ahead are kinder to you.
Yes, same experience here.
I'm very lucky, I figured out that too much exercise made me crash very early on in my health journey. I didn't know I had ME at the time, but I knew I had to stay within my limits to avoid crashes, and I did a lot of other things that (I like to think) slowed my decline. My diagnosis gave me access to LDN, and now I feel so much better. Not 100 % but maybe 90 %. I can do much more too, before I crash. That's not due to GET at all, but to LDN, and I'm very lucky my body can handle the medication. I do exercise, but gently, and I mind the balance between rest and activity. That's just how it is.
NEVER listen to anyone that tells you that you should "push yourself". Listen to your body, let it guide how much you do. Only you can know where your limit is.
It was interesting, years ago before my condition reached its current diagnosable state I heard an interview with Debra Messing, who I shared a body type with and who described exercise as not in her life because "every time I exercise, I get sick. I finally stopped because I just get sick every time." I experienced that too - I'd have to stay within very specific micromanaged parameters. Of course I still had some alcohol in my diet then and I don't know anyone who can actually stay well with that input (sometimes they don't call it "ill", but if they're always on OTC drugs or have a sinus infection, they're ill). I suspect if someone had taught me what a terrible input that is in any amount, I would have declined that as a younger person, but everyone's so in denial about that being a toxin that no one told me to keep my liver well sheltered so that later in life I'd be more protected. At this point I'm in a stage of not doing anything even when I have energy for a little bit, because I feel I have to save it up. It's a real state to work through since deconditioning is so dangerous as well.
It makes me wonder if people who recover through GET actually had ME in the first place.
I almost mentioned that in the video, but I did not want to alienate anyone. But I wonder the same thing.
@@fight4me747 it's not meant to disrespect anyone, but it's possible they had another issue rather than ME.
@@amandacampbell4479 Ya, people get really sensitive about that. I can see why he didnt mention it. But I also agree that they probably had something else going on
I think some of them just happened to improve at the same time as trying GET - for example, in my case I had active CMV infection for two years straight. Another year of laying in bed then my family forced me to start doing things again. No one knew I had ME or anything. I was in agony and crying on the floor every morning but over the course of 2 years I “got better” but only in the sense that I was doing things again but not much. I was still extremely sick and any exertion made it worse. I think I had a remission to mild severity for a year or two then I went back to moderate because “pushing through” makes you worse even if you have temporarily gotten better for a little while. I think a lot of people saying they got better are in denial about their illness. If they can get a part time job again it’s easier to believe the gaslighting from doctors and family. But unfortunately you are likely to end up back at housebound level if you were like me and ignored your symptoms and kept pushing through. I was able to work 15 hours a week at my best during this illness. Now I haven’t been able to do any work at all not even one hour for over 4 years.
If Post exertional worsening of symptoms is the key characteristic for a diagnosis of M.E. then it must be impossible for GET to help an ME sufferer. It could surely only make us worse.
But if it has helped a patient, it just means they had a different illness.
Hello from Sweden
Hello there!!
@@fight4me747 i hope you feel ok.
(Very short this time from self)Ur very correct johnny when i do simple everyday things i get out of breath easy with palputations so i have to sit down to get my breath back & stop the palputations...i know these are very simple things but i cannot do them 80% of the time..stay well👍
I have quite bad fibromyalgia. I get severe fatigue with it, sadly. I get fed up of medical professionals telling fibromyalgia to do exercise as part of their recovery. I've tried doing exercise and it makes me poorly afterwards. Even gentle exercises like tai chi, swimming or walking can be painful or cause me fatigue sometimes. On a rare good day, I can only do very short and slow walks. But on a bad day, I'm housebound or bedbound.
I hear ya! I have Fibromyalgia as well as M.E. (and other things too unfortunately)
You are absolutely not alone in what you are going through and your experiences with medical community are similar to what we have all been through at various stages. Sending gentle hugz 🕊
Thank you, makes a lot of sense.. I’m from Australia .
Hello ! From California!
I wasn't aware that ANYONE with ME has been helped by GET. If so, I'm not sure ME is the correct diagnosis for them, lol.
But yeah, standard story here: made worse by following shitty, harmful advice. I used to be a competitive athlete! I loved it but had to quit because I was struggling to work even part time.
I’m a bit of an anomaly perhaps, because I still go to the gym and train; I’m a former athlete, despite living with ME/CFS, and the ME Association told me that training is controversial. And yet I do. However, it’s not one size fits all for any of us. Sometimes I’m not able to do it and that’s ok, and I still don’t really know if it’s the right thing, however I choose to carry on and I’m not prepared to give it up for the benefits mentally and physically, that I gain. I’ve trained for almost 30yrs and I also do know my limits; of course I’m not able to lift weights in the way that I could..but still.. Like I said it’s not one size fits all, and the so called experts need to reeducate themselves x
So helpful
GET can be useful if used extremely slowly, always dictated by the sufferer, always within the current baseline without causing significant PEM, probably starting with about half of what you think you can do, half as often as you think you can do it, doing something you enjoy, and focusing on strength training or stretching, not cardio. Also, if there is any significant PEM, it has to be paused. It's like a delicate dance.
I don't think anyone can prescribe a program that covers all of these variables. GET absolutely has to be patient led, and it's not about reconditioning per se. It's about making new neural connections in the brain. When ME/CFS patients increase their baseline, it's like a form of GET, but they are often doing it through every day living.
I started with three reps of 5 exercises with a small weight. I can now do a full set with a higher weight. I'm about to go on a walk outside with a walker which I couldn't do before as I was mostly bed bound.
Used incorrectly GET is an absolute disaster, and in my opinion, is not something that could ever be 'prescribed' for ME patients.
The difficult part is when you don’t know if you have just POTS, or POTS + ME/CFS. Because with POTS, exercise is the recommended treatment. But with ME/CFS, exercise can be harmful.
I’m diagnosed with POTS. I think I also have ME/CFS but I don’t have a diagnosis. I am in cardiac rehabilitation right now doing exercise 2x a week for POTS. Even though I am fine working out, I am feeling very poorly overall and have very little energy now.
People around me keep saying I just need to push through and I’ll eventually get stronger and build up more stamina. That it gets worse before it gets better. But I am worried that I will just keep being in a perpetual state of near-crash. How long until it starts to get better? None of the doctors can tell me.
Like I said in my comment, I have both, and if you have ME/CFS you need to be EXTREMELY careful. Exercising might help temporarily but may come back to bite you in the long run. Post exertional malaise is a huge indicator of ME/CFS.
If you have ME/CFS and are okay working out but are getting worse, you might have mild ME/CFS. Some people who are on the milder side can handle light exercise.
Even if you just have POTS I would be careful, pushing yourself past your limit could make it worse. Honestly people who keep telling you to keep pushing (as good as their intentions may be), who refuse to listen to your thoughts on the matter will continue to tell you you’re not doing enough, because to a healthy person our best is often way worse than their worst, so it looks like we aren’t trying enough. Society has pushed this idea of pushing through, if you’re sick you “just have to fight hard enough”. Sometimes “fighting hard enough” means balancing trying to improve and also resting and stopping when your body is saying enough.
I’m too sick to exercise for POTS but I find high quality electrolytes, medication, compression socks, and not sitting up or standing as much as possible, don’t get rid of the symptoms -including POTS fatigue, but do help majorly.
Health Rising .Com has information that can help you figure out if you have ME/CFS.
Was was an athlete my whole life until I came down with CFS. Exercise always sends me into a crash cycle. It's the worst part of this illness - not being able to exercise.
I completely agree. I miss the "high" from exercising and feeling amazing after leaving the gym.
So absolutely true!
It's definitely not the worst. You are obviously very mild if you say this. Laying in a dark room 24/7 not able to eat or to go to the bathroom without help while enduring relentless symptoms is the worst about this illness. Pure torturous suffering. This illness should be called Melignant Neuroimmune Syndrome, not CFS.
@@AlbaLynxQueen I understand. And I agree 💯
I feel you 🧡
I've had two weeks vacation which has been anything but. I allowed myself to push through thinking if have time to recover, I've not had that time and i don't think I'll have the time to recover when i get home either. I feel this is now me, I'm not going to bounce back from this.
It's crazy, i know if i even walk sort distances i crash, what was i thinking? But that's it isn't it, thinking! 8 years in and I'm still fighting against this and making myself worse.
Do you know, it was self imposed GET which made me realise i had this in the first place. Thankfully, my current GP does not subscribe to the practise, actually, i just had offered to up my medication!
🥀👍NO GET.🥀
❤
Is it possible for a spinal fusion surgery to cause ME / CFS? I had that surgery when I was 12 or so if I remember correctly & then at 21 I was down for 2 weeks with Covid for the first (& only time) before getting vaccinated
Some (not all) folks attribute their ME to inoculations. Also there are a lot of medications including surgical ones that contain preservatives containing mercury, and I know for some of us our heavy metal overage really contributes to the inability of the body to convert oxygen into energy (ME issue), so depending on how the surgery was done and with what implements/medications, you know your body better than anyone else does. The only purpose in knowing a cause is if it gets us further in knowing how to help ourselves, though, and I'm not sure it would in this case, other than perhaps looking into heavy metal amounts in the organs, but everyone should do whatever they feel is best for them
Hallo from Germany ❤
Ich gehe zu keinem Arzt mehr 😢.
Wofür … 🧐
HELLO!!!
My family has always been hard on me because of my illness. Constantly they would say exercise it'll make you better. So stupid me; I tried to placate them. I started exercising. Not much. 5 to 10 minutes a day. But even that was too much it seems. It got to the point where my heart felt like it was gunna burst outta my chest. I grabbed my sister (stupid judgemental bitch) and said I need to go to the Chemist to get my blood pressure checked. It was 198/124. Lesson? Don't exercise. It's very dangerous for people with ME/CFS to do physical activity.