Am I Screwed?

[Jackb23]

So back in February, I did neurofeedback which I have done for the last 4-5 years with varying degrees of success. We did a "Squish" protocol and it made me remember just how unfun fatigue is. We did 40 minutes total so not that much. This amounts to like 1.5 sessions. I was absolutely exhausted after. My girlfriend would ask me to come talk to her in the bathroom and I would just lay on the floor because I couldnt sit up straight.

After the squish I did a different neurofeedback protocol (5 min) and gave myself horrible derealization. I thought I was going to have to kill myself because it was so uncomfortable. This has since greatly improved and I dont see it sticking around for much longer, but the fatigue is still there.

I lifted 5 days last week and I walked 5 miles most days as well. I have never had to worry about PEM, but all of a sudden I did. I was probably at 99% functioning before this session. I am totally exhausted now.

I would say that my fatigue is probably 30% better than it was in February. I dont have the mental endurance like I had in the fall but this adds up. I guess I just need to be smart in the meantime, sleep as much as possible and get ready to work again in 2 months. I also need to avoid working out and super long walks. I hope that this crap wears off because this has been the hardest time of my life.

Since I got ME/CFS, I have always been in the mild category. I could go to school full time and didnt really have to watch my activities at all apart from one time when I was taking stimulants everyday for about six months, etc. The brain fog was a pain in the ass and really took away from a lot of my life. Last summer, I had all but forgotten about ME/CFS. My mood was good, my energy and sleep were good, and even my brain fog was gone but I gave myself pretty bad OCD with what I did to get there. I have gotten covid twice and both times it screwed me up for about a month but then I returned to my previous status.

Am I screwed?

 

[linusbert]

Am I screwed?

yes

pretty much everyone is here in this forum.

there seams to be factors which make you improve bigtimes... or other way, factors which make you decline big times. you really should figure those out besides covid. covid is just the rotten cherry on top, but something else is brewing.
you are seamingly younger, so the earlier you fix it the easier it will be.
if you didnt already you should do hardcore analysing, track everything, the foods you eat, the places you go, the weather, mold? the training you do. parfums etc. furniture, even drinking water. the devil could be in any of those.

you also should have vitamin D levels up to at least 40ng/ml in blood.

 

[Tsukareta]

I would say no, your functioning level is pretty good, I was only like that for the first 6 or 7 months of my CFS, then I turned severe, bypassing moderate, had a bad time in the summer of 2016, barely able to eat, move, had very bad light sensitivity, felt hot and uncomfortable not restful, remember crawling to the bath a couple times a day, that seemed to help me cool down, had weird rashes on the fingers/ knuckles like fairy rings that spread into big red patches, later arthritic fingers and sore forearm muscles ( tenderised with a hammer?! ) could barely watch TV or use a computer. I survived by convincing myself I was a different person with much different interests and way of thinking, so I could forget about everything I usually hold on my mind, I watched nature documentaries on TV and things like that, slowly improving a little each day, trying little bits of food. I watched Forgotten Plague (?) on an old junk windows xp laptop I sometimes used to watch Youtube videos on ( very slow old pc ) and was inspired by the stories from the David family etc and what became the OMF. I remember watching tv shows like Top Gear, River Monsters, Around the world in 80 days, I bought the video series of that and a DVD player and watched all of it. Those little things stand out as good experiences among a very bad experience. A doctor came to see me and could see nothing wrong, though to me without touching anything with my hands I could feel my heart pounding strongly when if I was healthy I would barely be able to sense it. I took probiotic pills and avoided gluten foods and milk, because when the big crash started ( from severe to very severe ) I'd had sudden bloating and acute lactose intolerance to cereals. Slowly I improved any by winter I was moderate, the next year I started driving my mothers mobility scooter, then started fishing, was playing a lot of video games, things continued to improve from there.

It wasn't really until 2022 that new symptoms and problems started, and the nature of them is quite different from what I typically experienced in the first 6 years of the illness. I live in a tent in the garden now since mid april and I fear heatwaves, winter, chemical exposures / my MCS flaring up, mold exposures and becoming more sensitive to mold. The is probably the worst situation i've been in since 2016.

 

[Emeline]

I wouldn't say you're screwed, I would say that your future is uncertain, though. It's really not clear how many people recover from CFS somewhere between 5 and 99%... which is not a very helpful range.

This forum is biased towards non-recovery, because almost everyone who recovers leaves, and doesn't think about CFS any more, as I'm guessing you're familiar with. Most people with CFS are undiagnosed, and presumably, some of them recover without ever knowing they have CFS.

Every time to push yourself into PEM, every time you get sick, you're risking permanent deterioration.

My advice is to track your activity, both physical and mental. Don't stop exercising entirely, if you can, but don't risk triggering PEM, if you're going to push yourself, go so incredibly slowly. Track your food, medication, and sleep. Get a blood test done if you can, make sure you don't have any deficiencies. Travel, if you can, and see if your symptoms are lesser outside your current environment - there might be mould or other environmental triggers. Take care to wear high quality masks in crowded spaces - you are medically vulnerable.

Act sensibly, but don't despair.

The fact you've had a period of remission before is a great sign, and the fact that there was a clear trigger for this relapse is also encouraging.

 

[Wishful]

My opinion is "no". ME changes over time, with ups and downs even if you don't change any factors that you're aware of. Did your neurofeedback session cause worsening, or was that just a non-causal correlation? Hard to tell. Maybe you got an asymptomatic viral infection at that time, or had a previously not encountered food ingredient. Maybe this "down" will last a short time, or maybe it will linger. Maybe you'll try a supplement or other treatment from your "didn't work" pile, and you'll snap back to the pre-down baseline. ME just keeps surprising us.

and the fact that there was a clear trigger for this relapse is also encouraging.

It's only a clear trigger if it's repeatable. Otherwise it could just be an accidental correlation.

Every time to push yourself into PEM, every time you get sick, you're risking permanent deterioration.

It may not be permanent degradation; it just may be locking into a long-term state, but which could be recovered from, slowly or quickly. Also, I think there are subsets of people who are susceptible to long-term effects from PEM, and others who aren't. I had countless episodes of PEM, but never had any long-term effects from them. I think that after some number of PEM episodes, we figure out which category we are in, and thus how important it is to avoid PEM.

 

[Judee]

We did a "Squish" protocol

After the squish I did a different neurofeedback protocol

I lifted 5 days last week and I walked 5 miles most days as well.

I could go to school full time and didnt really have to watch my activities at all apart from one time when I was taking stimulants everyday for about six months, etc

Am I screwed?

If you keep doing stuff like this, then yeah, you very well could be.

You need Aggressive Rest Therapy and like Linus said, start watching for exposures, food and otherwise, that seem to make your symptoms worse and eliminate those things one by one as well.

The following thread (compilation) make a very good case for rest especially if you are young and especially since it sounds like you are in the early years of your disease: https://forums.phoenixrising.me/members/judee.28070/#about

...if you don't want to end up with ever worsening ME for the next 40+ years!!!!

 

[Jackb23]

If you keep doing stuff like this, then yeah, you very well could be.

You need Aggressive Rest Therapy and like Linus said, start watching for exposures, food and otherwise, that seem to make your symptoms worse and eliminate those things one by one as well.

The following thread (compilation) make a very good case for rest especially if you are young and especially since it sounds like you are in the early years of your disease: https://forums.phoenixrising.me/members/judee.28070/#about

...if you don't want to end up with ever worsening ME for the next 40+ years!!!!

I’m in year 8.

 

[Judee]

I’m in year 8.

But it sounds like you could still be in the years where your battery will sometimes recharge a bit. Why not give it a chance to by resting?

 

[Jackb23]

My opinion is "no". ME changes over time, with ups and downs even if you don't change any factors that you're aware of. Did your neurofeedback session cause worsening, or was that just a non-causal correlation? Hard to tell. Maybe you got an asymptomatic viral infection at that time, or had a previously not encountered food ingredient. Maybe this "down" will last a short time, or maybe it will linger. Maybe you'll try a supplement or other treatment from your "didn't work" pile, and you'll snap back to the pre-down baseline. ME just keeps surprising us.


It's only a clear trigger if it's repeatable. Otherwise it could just be an accidental correlation.


It may not be permanent degradation; it just may be locking into a long-term state, but which could be recovered from, slowly or quickly. Also, I think there are subsets of people who are susceptible to long-term effects from PEM, and others who aren't. I had countless episodes of PEM, but never had any long-term effects from them. I think that after some number of PEM episodes, we figure out which category we are in, and thus how important it is to avoid PEM.

I don’t know the purpose of the protocol was to trample my brain waves because I was getting huge adrenaline surges. It started the day of treatment. To me, I have no doubt that is what caused the fatigue. I didn’t do a ton so it should wear off according to the doctors. I have already recovered 30% and it’s only been 3 months.


As for what is causing the PEM. This is what’s interesting. I didn’t have PEM for the first two months, I was just really, really tired. I started benzo withdrawal around the same time that this PEM started. It could just be “benzo flu”. I have had this since 2015 and have never had a hard time with PEM so it’s odd.

 

[Jackb23]

But it sounds like you could still be in the years where your battery will sometimes recharge a bit. Why not give it a chance to by resting?

I’m going to now since I have two months off work. It’s just never been my experience that I need to recharge. It was more that my baseline was just a little lower and my brain was a little different compared to pre ME.

The only times I’ve crashed in the past were when I got pneumonia or covid. I quickly returned to baseline after these things occurred.

 

[Judee]

I quickly returned to baseline after these things occurred.

But you're not now so something has changed and you need to pay attention to that.

Edit: Here start with this one. Long first post but lots of good info although I would do tart cherry instead of the rx sleep aid. https://forums.phoenixrising.me/threads/long-sleep-therapy-for-healing.88000/#post-2404470 (go to the top of the page)

 

[Jackb23]

But you're not now so something has changed and you need to pay attention to that.

Edit: Here start with this one. Long first post but lots of good info although I would do tart cherry instead of the rx sleep aid. https://forums.phoenixrising.me/threads/long-sleep-therapy-for-healing.88000/#post-2404470 (go to the top of the page)

Just went through it. Thank you for sending it my way.

 

[Wishful]

It’s just never been my experience that I need to recharge.

As Judee says, ME changes over time, so past experience doesn't guarantee future experiences. I've had quite a few foods be safe for years, but then suddenly start worsening my ME symptoms. I've had treatments that worked for 2+ years turn into permanent cures ... at least until something changes and the symptoms return.

So, if you've noticed that something you considered safe now causes problems, just toss out the old "safe" designation. If it's something that provided useful benefits before, you can consider retesting it after your guess of a safe period of time. Treatments that work should also be retested occasionally, to see whether they're still working, or maybe the optimum dosage has changed.

 

[Jackb23]

As Judee says, ME changes over time, so past experience doesn't guarantee future experiences. I've had quite a few foods be safe for years, but then suddenly start worsening my ME symptoms. I've had treatments that worked for 2+ years turn into permanent cures ... at least until something changes and the symptoms return.

So, if you've noticed that something you considered safe now causes problems, just toss out the old "safe" designation. If it's something that provided useful benefits before, you can consider retesting it after your guess of a safe period of time. Treatments that work should also be retested occasionally, to see whether they're still working, or maybe the optimum dosage has changed.

Yep. I’m going to try BCAAs, Wellbutrin and be very careful about breath work after I get totally over the derealization and the benzo withdrawal.

 

[linusbert]

Yep. I’m going to try BCAAs, Wellbutrin and be very careful about breath work after I get totally over the derealization and the benzo withdrawal.

Jack my boi, listen, dont do crazy stuff!
instead of pumping, do things which increase your oxidative capacity. the boring stuff, walking, jogging carefully slowly short times!! or on a bike trainer. and its very very important that you measure bio information very carefully. that means pulse, oxygen maybe even lactate, you can do those tests at the doctors.
also resting pulse when you get up in the morning. this gives you clearly early signs of worsening or improving.
usually before a crash there are very very very subtle signs of the body that he actually needs rest. find these signs and prevent crashing.
the goal is oxidative capacity, if you can get it up, it protects you also from crashing and regenerating. sadly many of us cannot get this up a alot. but if you can pump, you should be able to do some improvement here.
for muscles you can do pilates or thai chi or yoga or something.
i know, young boy wants big muscles, but big muscles do not provide much benefit for health. you can take some creatine, that gives you pump without much training.

and the other thing, you should take every OTHER day
- 5g creatine (get NON-chinese manufacturer, CREAPURE is from germany thats good manufacturer)
- 500mg l-carnitine or carnitine-fumarate or acetyl carnitine. (carnipure is good manufacturer - no china!)
- find a good multimineral complex the size of 100% daily RDA
- magnesium 100-400mg, potassium (in form of food or coconut water)

and ONCE a week
- vitamin D 20.000 - 40.000 iu (and check after 3 or 6 month blood levels with your doctor, you want 30ng/ml+ at best 40-60ng/ml) , instead of 20-40k a week you can split the dose up over the week if you want.
- a high dose b-complex, i recommend country life coenzyme b-complex . its important to get 500-1000 ug B12 per week to protect you from ONOO

adjust dosage to your personal tolerance limit, do not take more than you tolerate!
nothing of this is medical advice - just personal opinion. always check with your doctor first.

and eat frequently runny eggYOLKS. can also eat whole egg. but the yolk is the important stuff.

 

[Jackb23]

Jack my boi, listen, dont do crazy stuff!
instead of pumping, do things which increase your oxidative capacity. the boring stuff, walking, jogging carefully slowly short times!! or on a bike trainer. and its very very important that you measure bio information very carefully. that means pulse, oxygen maybe even lactate, you can do those tests at the doctors.
also resting pulse when you get up in the morning. this gives you clearly early signs of worsening or improving.
usually before a crash there are very very very subtle signs of the body that he actually needs rest. find these signs and prevent crashing.
the goal is oxidative capacity, if you can get it up, it protects you also from crashing and regenerating. sadly many of us cannot get this up a alot. but if you can pump, you should be able to do some improvement here.
for muscles you can do pilates or thai chi or yoga or something.
i know, young boy wants big muscles, but big muscles do not provide much benefit for health. you can take some creatine, that gives you pump without much training.

and the other thing, you should take every OTHER day
- 5g creatine (get NON-chinese manufacturer, CREAPURE is from germany thats good manufacturer)
- 500mg l-carnitine or carnitine-fumarate or acetyl carnitine. (carnipure is good manufacturer - no china!)
- find a good multimineral complex the size of 100% daily RDA
- magnesium 100-400mg, potassium (in form of food or coconut water)

and ONCE a week
- vitamin D 20.000 - 40.000 iu (and check after 3 or 6 month blood levels with your doctor, you want 30ng/ml+ at best 40-60ng/ml) , instead of 20-40k a week you can split the dose up over the week if you want.
- a high dose b-complex, i recommend country life coenzyme b-complex . its important to get 500-1000 ug B12 per week to protect you from ONOO

adjust dosage to your personal tolerance limit, do not take more than you tolerate!

and eat frequently runny eggYOLKS. can also eat whole egg. but the yolk is the important stuff.

The resting pulse thing is actually a very good idea. I will try this and track my HRV. I guess it’s just hard because all summer and fall I was working out 5 days a week and woke up feeling well rested. I could work as much as I wanted. I had no ME limitations. In fact, I had different issues: I would have adrenaline surges that no amount of Ativan, cbd and neuroleptics could quell (in tandem).

I am hopeful that my brain waves just return to their previous state in 6-12 months but will be careful not to push it too hard in the meantime.

Also, I have a job that I love and my priority is keeping that. I could care less about muscles. I was working out to prove to my parents that I want to get better as they have been worried that I am going to take my life these past few months because of the derealization. I have an apartment in Austin, but was too freaked out to be alone down there.

I was really lucky in that the past 3 years I have maybe thought about ME a dozen times until the latest dumb ass Neurofeedback treatment. Do I have other afflictions, sure, but don’t we all.

I will look into those supplements that you recommended. I did a metabolomics study years ago and they recommended BCAAs. The only issue right now is that most things help one issue but make a different one much worse. For instance, Zoloft helps big time but makes my insomnia terrible. I don’t know if Wellbutrin will do the same. I also cant tolerate VNS after doing Neurofeedback with it on all fall, but I may try meddling with the settings so that I am getting the absolute smallest dosage.

The best outcome would just be my brain healing from that one session or at least getting 70% better as we did the squish for a reason.