Almost recovered but still PEM after Sports - any advice?

[nico87]

Hello,

first of all I am from Germany so my English might not be perfect. I have posted in this forum about a year ago and I was suffering from severe CFS and tons and tons of symptoms. This forum content and some youtube channels helped me to recover a lot (maybe around 90 %) - so I will soon do a success story. But I want to be very well to do that, otherwise it doesn't seem right for me.

I had all kinds of strong fibro pains (muscle, joints, tendons) which basically are so much better. When I don't do any sport, I still feel them but almost back to normal. My problem now is when I do too much sports, my muscles and joints still react a lot - and I have stonger pains for 3 to 5 days for it to get better. My motivation is to build my muscles up again - and I am in this process now for a couple of months. Still it is very hard for me to do sports but not to overdue it. The line is very thin, sometimes I play soccer and I am ok, sometimes I workout just a little too much and I spiral for 3-5 days.

Does any of you experienced the same and has some advices how to deal with that? Sometimes I am still unsure, if this is mainly my mind reacting to sports, or if it is still too much for my body at this time.

I have basically three thoughts:
1) I continue like this with sports and hope that it gets better in some weeks/months.
2) I draw back a lot and only do very little sports. I kind of tried this a lot of times, kind of weird - but it is hard for me. When I do little, I still feel ok. After some time I increase and feel worse again. Like I said the line is very thin.
3) Withdraw from sport totally and just enjoy life for some weeks or months - hoping that it will resolve itself.

My motivation is not that I have to do sports right now because of the sports itself. It is more that I want to find a way for the rest of my body symptoms to disapear and to sports in the future again like it used to be. After this period of over 2 years I want to ski and surf again.

 

[Cactusflower]

#1
Do your sports and keep giving yourself reminders that sometimes we feel things in our bodies after a good workout.
In my experience, challenging symptoms gives me more temporarily because the brain still tries to protect you from doing things or maybe even experiencing events that bring tough emotions. Don’t worry! You are teaching the brain that this movement is safe, these emotions are safe. Sometimes it takes time.
Learning patience and kindness to your mind and body is part of overcoming symptoms. You don’t baby things, you just remind yourself this is all temporary!
Keep your eye on that 90% victory! Congratulations!!
Return your mind to just enjoying sports. Doing them will not “heal you”, just enjoy the moment you are moving your body and take that moment to focus on the positive of how far you come.
You are doing great!

 

[Baseball65]

I workout just a little too much and I spiral for 3-5 days.

All of us ended up here over-educated about the fragility of our body and the danger we are in if we "over do it".

When we come here and learn that is NOT the case, there is still a lag time between our understanding what's going on and our results (being pain free and free from fear)

What you describe really sounds like your unconscious still acting out on that old bad conditioning. We all had to work through that. I was told if I ever jogged again I risked paralysis...pretty scary. And a complete LIE. But they don't know any better and neither did we.

Now that we DO know better from Reading Dr. Sarno it's just a matter of sending messages to the unconscious that we are OK and that it is NOT normal to be out 3-5 day from just slightly over doing it. This is where Dr. Sarno's strategy of "Talking to your head" can come in handy. I literally would say to my brain/body... "I am strong, the spearhead of God's creation and evolution and you are not going to trick me into thinking I am a delicate gossamer because I am Not"

How or what you say isn't as important as the Message. Start advertising in your own head. I used to make lists of stuff that was bugging me... then when I felt the creep of pain or a spasm I would forcefully turn my mind to that problem (Pg 77 of healing back pain)..... I must have looked dazed to my fellows, BUT It works, as insane as it might sound.

It is more that I want to find a way for the rest of my body symptoms to disapear and to sports in the future again like it used to be. After this period of over 2 years I want to ski and surf again.

Keep that in the front of your mind...not In the future....NOW. Tell your unconscious that you can and will surf and ski again and that there is nothing wrong with your body and it will be true...the unconscious is sticky, but not unchangeable.

You CAN do it. Read. Move. Re-educate yourself about yourself...Do anything and everything you want to!!

 

[Diana-M]

I was told if I ever jogged again I risked paralysis...pretty scary

Scary! And hard to get past. I was told my neck was so fragile that if I so much as blew dried my hair with my head upside down, I could become paralyzed. This from an orthopedic surgeon who wanted to operate on my neck. Just out of spite, I blew my hair dry that way on purpose for a while. And I refused the surgery. That was nearly 30 years ago. Still Not paralyzed. It’s unethical in my opinion to scare people into surgery. But that’s exactly what happens all the time. It is SO hard to trust doctors.

 

[Jettie1989]

Scary! And hard to get past. I was told my neck was so fragile that if I so much as blew dried my hair with my head upside down, I could become paralyzed. This from an orthopedic surgeon who wanted to operate on my neck. Just out of spite, I blew my hair dry that way on purpose for a while. And I refused the surgery. That was nearly 30 years ago. Still Not paralyzed. It’s unethical in my opinion to scare people into surgery. But that’s exactly what happens all the time. It is SO hard to trust doctors.

wwwhat, that is so unethical indeed.. and damn so much respect that you where able to turn that around!

nico, it is so inspiring to hear you healed your cfs so much, I'm in this right now and I have noticed major improvements with tms techniques. I'm also still hung up on the 'how much is really too much' question.

I lately try to see my symptoms as an opportunity to 'stretch up' what my mind thinks it is acceptable.
if I'm becoming mad tired I try to see it as an opportunity to try and get myself to switch up my mindset and get excited about the growth I can get from this. If I'm able to do that (see it as an opportunity) it can change pretty quickly for me. (saying this while being MAD TIRed though, so still a long way to go XD)
Maybe that's something you could try and see if the symptoms respond to that?

Question for you, you seem to have some doubts on the fibromalgya pains, but not on the chronic fatigue aspects.
How did you overcome those same doubts? like I'm trying to convince myself that my tiredness isn't because of the amount of stuff I did yesterday, but my fear and my environment (worried people) kinda work against me. Also when you've had cfs you know how tired you can get, and that it can be extremely convincing. Do you have any thoughts on that?

 

[nico87]

Thank you all for your answers and feedback. You are a wonderful community.

But that’s exactly what happens all the time. It is SO hard to trust doctors.

Yes, I went to soo many doctors, it is just devastating. Unfortunaterly, our medical system is so so broken. I think for tms as even for real diseases. I saw some videos - one on amazon prime (living proof) and on youtube about mental diseases (crazywise). Also, listen to Gabor Mate on Youtube.
I really have to say that so many doctors have no clue what is happening in our body. All they do is sell some medication, which is not helping or often times makes things worse. It is very very sad that after all this years of modern research, investing billions and billions we are still at this point. Broken!

o much respect that you where able to turn that around!

Yes, I think everyone going through CFS should receive a medal of honor.

I'm also still hung up on the 'how much is really too much' question.

I have some thoughts on that- I think it is really important to build up consistency. With CFS, you can't just lie in bed, you need to increase activity and teach you brain that it is save to do so. So in my opinion, you should increase activity and you will experience some amount of symptom flare (for the moment).
But it should only be to the amount that you can repeat the same activity on the following day. Otherwise you did too much and have to draw back a little and then try again.
This is infact much easier said than done. Even after 2 years I have trouble doing it. A lot of times I feel good doing an activity (e.g. I'm working out at the gym) and after that I have to pay for it on the next day. I think the reason for that is that we are so primed to work hard, to give our best that - at least for me -
sometimes it is not so easy to do less, e.g. work out for 10min and then stop.
Other than that I also think that feeling bad or doing too much is just part of the process. It is so hard, impossible to figure out all the triggers. Maybe it is just part of our journey to feel bad again and again until it gets slowly better. Do you know Miguel Bautista from CFS recovery on youtube? He is teaching a lot of stuff
to get better from CFS. You don't need to sign up for the expensive programm, all the information are out there on youtube for free. His mandra is that the better you respond during flare-ups, the faster your recovery will be.

Question for you, you seem to have some doubts on the fibromalgya pains, but not on the chronic fatigue aspects.
How did you overcome those same doubts?

The answer to this is because of two things: 1) All the neurologial stuff (tiredness, pots, diziness) resolved much quicker for (after 1,5 years) than the fibromyalgia (more physical stuff like pains, stiffness). The 2nd reason is that for me, it was easier to accept that e.g. tiredness or accelerated heartrate is only a brain function. Look, when you are tired, there is no torn muscle, no broken bone. With the fibromalgya pains, it feels so physical. If my tendons, joints and muscles are so hard and cracking, I have a much harder time to accept that there is no physical damage. But these things get better as well, it just take a lot more time.

ike I'm trying to convince myself that my tiredness isn't because of the amount of stuff I did yesterday, but my fear and my environment (worried people) kinda work against me.

In my opinion this thought is not so helpful. I did this a million of times, asking myself why am I so tired, why do I have pain today, why am I so dizzy. Is it because I did too much, becaue of the coffee, because of my fear? There are so many things happening in a day, your activities, your social interactions, your fears, your sleep, your tiredness... just to much to evaluate. Instead of thinking about the triggers all the time, just be loving to yourself, don't do too much and accept that symptom flares are simply part of the process. Even though I am a strong supporter of TMS, I also believe that there are many physical things happening to your body. Maybe your hormons are off, your blood pressure is off and and and... which is tireing and just needs time to heal and adjust. In the end, it does not matter so much why you are feeling bad. Be loving, accepting and never forget that you will get better.

lso when you've had cfs you know how tired you can get, and that it can be extremely convincing.

Yes, I know how crushing this is. At my worst, I was sleeping until 1 pm in the afternoon. I had to get a paper from my medical doctor (which took 10min to walk) and I had to sleep another 6-8 hours to recover from that. Again, I think you can try to figure out where the fatigue comes from. But you will not end up with a solution (a day is very complex, a lot of things happen). Maybe, just try to accept that it is what it is for the moment. Meditation really helps. Don't be too hard on yourself, it is all a process and it takes a lot of time.

One last thing.. even understanding how hard it is. How many times you crush, how many times you are tired. Things are going to get better. You will get out of this. No matter what your brain tells you, finding explanations and making up some crazy stories of all that is happening in your body. Don't listen. You will get out of this!!

 

[Diana-M]

I lately try to see my symptoms as an opportunity to 'stretch up' what my mind thinks it is acceptable.
if I'm becoming mad tired I try to see it as an opportunity to try and get myself to switch up my mindset and get excited about the growth I can get from this. If I'm able to do that (see it as an opportunity) it can change pretty quickly for me. (saying this while being MAD TIRed though, so still a long way to go XD)
Maybe that's something you could try and see if the symptoms respond to that?

This is a Great thought! I love it and I’m going to try it! I fall back on feeling sorry for myself a lot. If I think a new way, this could help!

 

[Diana-M]

@Jettie1989 and @nico87
I have fibro-like symptoms, and it is very tempting to think it’s something physical. It’s just so overwhelming. How could this be caused by my brain? I also have weakness, which doesn’t make any sense. Lately, I started reading all the books about healing anxiety by Claire Weekes. And it all started to make sense. She explains how adrenaline from anxiety can cause a lot of symptoms, including exhaustion. It can cause weakness and even cramps and spastic twitching and all the stuff I have. She is amazing— I can’t say enough about her. Check her out! She has audio books too. It will change your life. MEDITATION and calming safe head talk is a big part of the cure. (I’m still in the process!)

 

[Jettie1989]

This is a Great thought! I love it and I’m going to try it! I fall back on feeling sorry for myself a lot. If I think a new way, this could help!

I love that Diana because you have helped me so much too! The post about hair painting and small steps is still one of the most inspiring posts to me

yay us!

 

[Jettie1989]

The answer to this is because of two things: 1) All the neurologial stuff (tiredness, pots, diziness) resolved much quicker for (after 1,5 years) than the fibromyalgia (more physical stuff like pains, stiffness). The 2nd reason is that for me, it was easier to accept that e.g. tiredness or accelerated heartrate is only a brain function. Look, when you are tired, there is no torn muscle, no broken bone. With the fibromalgya pains, it feels so physical. If my tendons, joints and muscles are so hard and cracking, I have a much harder time to accept that there is no physical damage. But these things get better as well, it just take a lot more time.

Wauw that's so funny because to me, it's the other way around. I had a lot of pain tms in the beginning and I could get rid of most of them fast because it sounded so logical to me. To me that's such a clue. You find it easier to believe the fatigue is tms and I find it easier to believe pain is tms, and look at our results, that's amazing.

One last thing.. even understanding how hard it is. How many times you crush, how many times you are tired. Things are going to get better. You will get out of this. No matter what your brain tells you, finding explanations and making up some crazy stories of all that is happening in your body. Don't listen. You will get out of this!!

Thanks so much for these kind words. I had a rough day today and I need to remind myself of this and also that I have made so much progress with these techniques already.
I think you can do it too, you are in the last 10%! I know you'll figure this out

 

[Diana-M]

I love that Diana because you have helped me so much too! The post about hair painting and small steps is still one of the most inspiring posts to me

Really?!!! I’m so glad it helped you! Sometimes I feel I’m saying too much, but you just never know when you’re helping someone! Your post was inspired today! Yay us!!!

 

[JanAtheCPA]

Wauw that's so funny because to me, it's the other way around. I had a lot of pain tms in the beginning and I could get rid of most of them fast because it sounded so logical to me. To me that's such a clue. You find it easier to believe the fatigue is tms and I find it easier to believe pain is tms, and look at our results, that's amazing.

Loving this. It's the TMS mechanism on full display! And unmasked!

I have lifelong exercise anxiety, which is laughable since I've also spent a lifetime being active in all kinds of activities. At some very advanced point (I'm 73 now,) I simply accepted that this is something I need to remember whenever I feel any kind of symptoms (like vestibular imbalance or queasiness) when I'm out engaging in exercise, which is usually just brisk walking. It's as if my unconscious brain finds some reason to feel threatened or unsafe in the surroundings. The big clue is that I never have symptoms when I'm working out at home with my online aerobic and strength training classes, even though I always push myself to do more and increase my heart rate. So when it happens outside of home, I say to myself - "wait - this is just your exercise anxiety", then I take a few deep breaths, calm down my brain, and before I know it, the symptoms have passed without me being aware. Works every time.