CFS / Chronic Fatigue Syndrome

[Username]

Sorry for a long post. I promise that I made it as consise as I could! 

I always wondered why I had so strong reaction to exercising. I used to think that I'm more sensitive to exercise in a positive way - I was often super tired after a physical activity I didn't do for a while. For example if I didn't ride a bike for few months and then did a 100 km trip. Next day I had a 'hangover' that lasted for a week. I often asked friends if they had similar experience but nobody did. I had those symptoms for at least 15 years. 

This year I got a double diagnosis of Autism + ADHD. I'm 35 years old now.

Also finally after years of of being unemployed I stared making reasonable money selling stuff online. This also caused huge chaos in my life because I did not have enough place to store and organize my items. Around December/January I started feeling super tired. At worst I spent almost whole days laying in a bed and trying to sleep. 

I started taking Metylophendidate. It helped a lot until it did not. Than after increasing a dose it helped again but benefits seemed to wane over time. Now it became really bad that I am able to do maybe 20 or 30% of physical activity that my parents (they are in they mid 60) are able to do. Riding 20 km on a bike made me feel like I'm dying for a week. 

At first I thought it was just an autistic burnout, but it I seems to be a textbook PEM:

- becoming tired 24h after physical activity, that lasts around a week

- heavy brain fog especially in a first two says

- memory problems

- cold intolerance (it can cause PEM symptoms even worse that exercise alone)

- increase in a resting heart beat from 50-55 to 70 bpm

- I often had stuffy nose

- CRAZY sound sensitivity! 

- weak hand grip - stuff is falling out of my hands

- loss if physical coordination - bouncing into things

- lowered torelance to physical activity

- emotional dysregulation

- shallow breathing (however now I have it all the time)

- physically tired but unable to fall asleep because my brain is so wired

I also drink a lot and then pee - which seems to be common in CFS. Also using Coq10 immediately helped my with my supposed PEM symptoms. I'm still very tired but at least stopped getting crazy brain fog.

My GP said that there is enough going on and I don't need for another diagnosis. My bloodwork is almost perfect. There is no cure for CFS so there is nothing to do about it. She said that I might consult it with my psychiatrist because she can't help me.

My psychiatrist thinks that I have a psychosis / schizophrenia However it seems that she knows almost nothing about CFS. She also said that I will no longer prescribe Metylophendidate. She thinks that I'm making things up and reading too much.

 

I don't know what to do. I have another visit booked - another, better psychiatrist that I'm paying out of pocket. I do not have time to waste on a likely bullc#@p diagnosis. I just wish to be 50% physically functional and be able to work.

Edited July 11 by Username

[Harman]

Ngl idk what is going on but maybe it could be the basic of not getting enough vitamins or maybe not enough potassium with the weakness or could be that there maybe a problem in terms of condition sorry or not being of no help but i would check everything plus your diet plus your environment to the detergents your using  or any signs of heavy metals anywhere but again sorry for not knowing the situation more.

[Username]

I did a bloodwork - everything perfectly fine.

In my childhood I got really sick. I had a solid fever - almost 42 Celsius degrees or 107 F. Than for a week I had 40 Celsius degrees fever. I remember that after that I felt weaker. That could be a reason but I don't really know.

I found a doctor in my city that has a good track record for CFS.

In a worst case scenario DIY euthanasia is an affordable option 

[Username]

Oh. I didn't want to make my post too long. I'm currently supplementing: 

- CoQ10 (large doses of powdered form and smaller capsules  with fat) - life saver

- NADH

- l-carnitine

- spiruline

- ribose

- magnesium malate

- potasium malate

- fish oil

- EEAs

- glicine

- curcumin

[Michael569]

@Username Welcome back, haven't seen your mushroom avatar for a while

I'm curious did you have CFS diagnosed? Did you match the diagnostic criteria for CFS and PEM? Or was it mostly assumption by the doc? 

Do you know how it was triggered? Seems that it could have been around the time when you had lots of stress with sorting out the storage and maybe that whole resale experience was a p[articularly stressful event. 

Also, have you had any major infection or covid recently? Long covid can be a trigger for these things as well. 

Other things I'd be curious to know more about: your iron status, your thyroid health, full blood count, vitamin D levels. 

I like the supplemental protocol btw, pretty neat combination for deep cellular support! Kuddos on putting that together yourself

Edited July 12 by Michael569

[Username]

16 hours ago, Michael569 said:

@Username Welcome back, haven't seen your mushroom avatar for a while

I focused on my ADHD and Autism diagnosis and developing my (mostly) online business - I was practically unemployed most of my adult life. 

I think that a big factor is that English is not my native language. So when I had a brain fog (which probably happened often) I did not have any desire to post. It's like having English somewhere deeper in my brain and it's harder to reach when memory doesn't works properly. 

16 hours ago, Michael569 said:

@Username

I'm curious did you have CFS diagnosed? Did you match the diagnostic criteria for CFS and PEM? Or was it mostly assumption by the doc? 

It was entirely my idea. I stumbled many times on a CFS term while reading about autism in reddit. Finally checked what it really is and everything made sense. The tipping point was my PEM after quite short and gentle cycling. I have red CFS diagnosis criteria and had enough symptons.

My GP did not question my self diagnosis (as it is something common and a lot of people can function with) but also did not investigate it further.

16 hours ago, Michael569 said:

@Username 

Also, have you had any major infection or covid recently? Long covid can be a trigger for these things as well. 

I only had long vaccination It caused my worst PEM ever.

I'm 99,98% sure that worsening was caused by forcing myself to do stuff when I was very tired. I used nootropics that enabled me to push even harder. It wasn't just me doing to much because of my ambition. It was rather listing stuff and that needing to tidy up in the morning. Also constant meltdowns (being pushed or nagged by others) and emotional dysregulation added up. 

16 hours ago, Michael569 said:

@Username 

Other things I'd be curious to know more about: your iron status, your thyroid health, full blood count, vitamin D levels. 

TSH 1.92, FT4 0,86, B12 278.0

I attached photos - I hope it's readable.

17 hours ago, Michael569 said:

@Username 

I like the supplemental protocol btw, pretty neat combination for deep cellular support! Kuddos on putting that together yourself

There might be still something to add to my stack. Those are the most common supplements. Spirulina should be helpful to replanish blood, creatine for energy and better focus, EAA to maintain muscle mass. I ordered some small stainless dip containers so I will be able to prepare for few days in advance. I would definitely skip supplementing when most needed.

 

[Michael569]

@Username hey, sorry for late response. 

Tests are looking fine except the cholesterol panel. Your Total and your LDL are higher than I would like for a 35 year old male. I'd try to get your LDL as close to 1.8 as possible. 

But other than that things are alright. 

How is your blood pressure? 

How are your anthropometrics? Have they checked your BMi? Weight? Height? 

From some experience working with c Long Covid and Fibro and what I found nearly always is that there is a reduced stress tolerance so one of the most important things is to plan your energy expenditure. Even like using some kind of numerical evaluation. This is a little bit intuitive and you kinda design it with regards to past onset of PEM but it would go something like this. 

Assume you have, in the day, 10 units of energy. And if you hit 0, you will experience PEM and severity of symptoms. So your goal is to kinda end your day with 2 or 3. And then you would rate activiities such as. 

• exercise:  -5 units 
• walk:  -3 units 
• nap:  + 3 units 
• cooking session -3 units. 

And so on. Basically using your intuition by journalling on what activities drain you and sort of observing yourself on how depleted you get if you stack a walk + study session + exercise and how likely it is that you end up with symptoms the next day and then sort of working your way backwards from there. 

Gradually as you strengthen the body, you will find that you can tolerate more and , for example, exercise may go from 5 to 3 or a session of socialisation will drain 4 instead of 7 and so on. 

But ignore if this doesn't make sense 

 

Also, I didn't ask this but how is your diet? Are you eating a lot of red meat or things like bacon and butter ? Curious if that would explain the elevated cholesterol? 

Edited July 15 by Michael569

[integral]

On 2024-07-12 at 2:34 AM, Username said:

Oh. I didn't want to make my post too long. I'm currently supplementing: 

- CoQ10 (large doses of powdered form and smaller capsules  with fat) - life saver

- NADH

- l-carnitine

- spiruline

- ribose

- magnesium malate

- potasium malate

- fish oil

- EEAs

- glicine

- curcumin

Are you taking any vitamins and micro nutrients? Like zinc? None of the supplements you listed are stimulating. On top of that fish Oil will drop your blood pressure and make you super tired all the time. Magnesium will also make you really sluggish if your body is in a specific state Lacking other synergistic nutrients.

Got to take each supplement consciously and carefully observe how it affects your body. Like a scientist experimenting on their own body.

also I keep repeating this a lot but if you have chronic fatigue there’s a bunch of problems going on in your body and you probably don’t want to be ejaculate anymore. you wanna go about three months with out ejaculation so your body can fully recover. At the very least experiment not ejaculating for a week and see how your energy levels are in comparison.

also experiment with liquid vitamins they hit completely different.

The supplements that you listed above is like drinking a glass of water you’re not gonna feel anything or worse it’s gonna put you to sleep it’s like a bedtime routine supplement stack.

Are you crashing after exercise?

Edited July 15 by integral

[Username]

@Michael569

Thank you  There is no point in being too quick. 

I'm 179 cm, probably 68 kg or slightly less. I used a scale to check my post composition - probably not very reliable. I suspect that I have around 15% now, I used to be closer to 12% when doing keto. I don't remember my exact muscle mass but I guess it was 36 or 37 kg. I have thin bones, long arms and legs (but shorter neck), narrow hands and head on a smaller side. 

Interestingly I was suuuper tired/sleepy after eating oatmeals but not anymore. 

My blood pressure is on the higher side. I guess something like 125-130/70-75 - I can make some more mesurements. As far I know blood pressure is misleading because measurement is made in rush. Proper mesurement requires 30 minutes of rest and dark room. At the moment my room feeks like sauna - probably there is 30 °C - so this will also make mesurements less useful.

Idea if calculating points makes sense but sadly will be impractical in my case. I'm living on the fourth floor. I have to be very careful not to rise my heart rate. Today just going 600 meters in total (to ship parcels) and walking up the stairs (with a short rest) forced me to sleep for two hours. In my experience it might be easier to just feel my body. One thing can be too much at one time but it will be totally do do twice as much two hours later. At this point I'm trying to save as much energy as possible.

Two-three years ago I used to be on keto. I eat some meat, cheese and usually 3 eggs a day. I rather try to avoid butter. I feel better on a high fat diet. I'm trying to switch from saturated fats. For this reason I ditched peanuts for macadamia. I also limited my cheesecintake I'm dying after eating things like regular ice cream or cakes containing wheat and sugar. This things make me feel terrible and can cause brain fog. I avoid sugar as much as possible. Fruits like banana or dates are totally fine.

If you have any questions let me know. I'm glad to be used as your reaserch mice

[max duewel]

Hey there, just wanted to share my experience. Two years ago I became sick every month every time I worked too much or stayed up too late. that was very unusual for me because I was very healthy and energetic before that. For over a year the frequency of me getting sick became higher and eventually, I developed a chronic fatigue/ sickness (Disclaimer: I was never diagnosed). I stayed in a state of extreme fatigue for about 5 months and it got  worse every month. I had extreme trouble concentrating, remembering was very unmotivated and phyiscally incapable to do anything. If I exerted myself too much my symptoms became worse the next day. I googled chronic fatigue and self-diagnosed. I thought i would never be better. Now about 6 months later that time Im fully myself again and I have my energy back. It was a gradual process of regaining that. My issue was not solved on the physical level, the deeper problem where undigested emotions from childhood and my belief system that made life extremely exhausting. By releasing the emotions and changing my way of thinking I became better physically again

[Username]

1 hour ago, integral said:

Are you taking any vitamins and micro nutrients? Like zinc? None of the supplements you listed are stimulating. On top of that fish Oil will drop your blood pressure and make you super tired all the time. Magnesium will also make you really sluggish if your body is in a specific state Lacking other synergistic nutrients.

Got to take each supplement consciously and carefully observe how it affects your body. Like a scientist experimenting on their own body.

 

I do not take any vitamins. I more than willing to take suggestions what should I use and about dosage. I just compiled ME/CFS recomendations but I may be still missing stuff in my list.

My blood pressure was always rather higher than lower so lowering it would be rather beneficial. I do not feel sluggish, sometimes even opposite. I may even forget that running up the stairs isn't a good idea

Also regarding Magnesium - it's usually (always?) an ingredient of electrolytes for dehydration.

1 hour ago, integral said:

also I keep repeating this a lot but if you have chronic fatigue there’s a bunch of problems going on in your body and you probably don’t want to be ejaculate anymore. you wanna go about three months with out ejaculation so your body can fully recover. At the very least experiment not ejaculating for a week and see how your energy levels are in comparison.

I'm not perfect at nonejaculating. I'm good enough at controlling and do not loose much semen. I'm 90% there but there is still some improvement to be made. I'm also using antidepressants so ejaculation isn't even easy anymore. Definitely ejaculation depleted my energy and caused brain fog.

2 hours ago, integral said:

Are you crashing after exercise?

I can't exercise. Keep in mind that I may be in a prolonged PEM because I overextended myself I did not rest properly. Any exercise would definitely make me crash. I'm only able to cycle 4 km one way, than sit and relax for 45 minutes and go back home. I do it every other day.

When I walk op the stairs I have to lie down on my bed immediately to lower my heart rate.

[Username]

Update! 

It got so bad that I was barely able to leave my home (lack of elevator was the biggest issue). Than I got an e-bike so I wold be able to get around without excessive effort. I rode ten kilometers on "turbo" mode.. and something happened. After just a few days of riding I do not have problems with fatigue (I was tired but in a different way).

I guess in my case there is an issue with oxygen delivery that caused CFS symptoms. Moderate phisycal activity depletes oxygen and makes me feel bad. I always had to do some vigorous execises at least once a week otherwise I felt lethargic. Lately I was taking Metylophenidate which probably masked lack of exercise.

I probably have some kind of hypoxia but I don't know yet how to identyfy the root cause.

 

 

[Ulax]

@Username Burn out from untreated adhd could be a possibility too. Have you tried stimulant medication?

Edited August 13 by Ulax

[Michael569]

20 hours ago, Username said:

probably have some kind of hypoxia

interesting observation. Do you feel like you have a tension on your chest when you exercise? Like you want to take a deeper breath but you can't? 

Is the feeling solely a tension (like somebody has stepped on your chest) or do you feel that it is also in your upper breathing aparatus (feeling of having someone's hand over your throat) 

Do you experience things like nasal congestion and runny nose / itchy eyes a lot? 

Edited August 14 by Michael569

[Username]

On 8/13/2024 at 5:35 PM, Ulax said:

@Username Burn out from untreated adhd could be a possibility too. Have you tried stimulant medication?

It started right before diagnosis and using stimulants. ADHD medication helps but it's rather just masking symptoms. It's still useful because it makes resting much easier.

On 8/14/2024 at 1:33 PM, Michael569 said:

interesting observation. Do you feel like you have a tension on your chest when you exercise? Like you want to take a deeper breath but you can't? 

Is the feeling solely a tension (like somebody has stepped on your chest) or do you feel that it is also in your upper breathing aparatus (feeling of having someone's hand over your throat) 

Do you experience things like nasal congestion and runny nose / itchy eyes a lot? 

Good question. I can somewhat relate to having tesion and definitely often struggle to breathe fully. However NEVER when I exercise. When I'm cycling it's almost the only time I can breathe normally - I do not feel that the air flow is constricted. I'm often oxygen thirsty while laying on the bed. I have to breathe faster because I can't get enough air in.

This year there was a time when my breathing became very shallow. It felt like it takes much more effort. I was unable to breathe deeper even when tried to do it consciously. Definitely felt more like something was pressing on my chest. I didn't feel that my throat is an issue. Interestingly I did one day test with peak flow meter and got result around 7 liters. 

I'm allergic to grass but I did desensitization for 5 years. This year I experienced those issues for one month. Otherwise not.

 

I suspect having hypovolemia. That seems to match best with my symptoms. Yesterday I did a 100 km trip on my folding ebike and had crazy vertigo when tried to get up.

 

 

 

 

[Ulax]

1 hour ago, Username said:

It started right before diagnosis and using stimulants. ADHD medication helps but it's rather just masking symptoms. It's still useful because it makes resting much easier.

@Username Gotcha. All the best with it mate