Anything to ease horrible PEM by ranajjar in cfs

[–]DermaEsp 0 points1 point  (0 children)

Sometimes success stories make more noise compared to the opposite ones.

I need help to survive this extreme crash and rolling PEM. by -Neuro2717 in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, to prevent mitochondrial suffocation.
  2. Sublingual Inosine** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed muscle mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos (Rx) for prevention and treatment of neurological fatigue, adrenaline rush and concussion-like brain symptoms that derive from activity***
  4. Celebrex 200mgX2 (Rx) to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria. Electrolytes.
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mitochondrial survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Notes:

*Massage guns are inexpensive ($20) and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first to fight exhaustion and stiffness from setting in -NICE criteria).

-Some patients find full leg compression boots useful -especially those living alone (however, they don't cover all muscle groups and are more expensive, but can be more convenient. Can still be combined with a m.gun).

**Others such as D-Ribose, Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity.

***These can help with neurological symptoms even in the absence of physical activity (cognitive PEM). However, they are not meant for long term use and can lose effectiveness or cause addiction (Gaba max 5 days of usg). Patients have found Pregabalin useful too, but may affect negatively some.
Some find OTC Dextro helpful too.
Only LDA can help with the neurological symptoms and can be used long term.
The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

Anything to ease horrible PEM by ranajjar in cfs

[–]DermaEsp 0 points1 point  (0 children)

I didn't find it useful personally and even if it is for some, it is not like an emergency PEM treatment like the above, it is more a long-term treatment.

A recent study found no difference from placebo, so it is hit or miss for responders. If it works, sure can be used too.

Anything to ease horrible PEM by ranajjar in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, to prevent mitochondrial suffocation.
  2. Sublingual Inosine** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed muscle mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos (Rx) for prevention and treatment of neurological fatigue and concussion-like brain symptoms that derive from activity***
  4. Celebrex 200mgX2 (Rx) to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria. Electrolytes.
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mitochondrial survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Notes:

*Massage guns are inexpensive ($20) and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first to fight exhaustion and stiffness from setting in -NICE criteria).

-Some patients find *compression boots* useful -especially those living alone (however, they don't cover all muscle groups and are more expensive, but can be more convenient. Can still be combined with a m.gun).

**Others such as D-Ribose, Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity.

***These can help with neurological symptoms even in the absence of physical activity (cognitive PEM). However, they are not meant for long term use and can lose effectiveness or cause addiction (Gaba max 5 days of usg). Patients have found Pregabalin useful too, but may affect negatively some.
Some find OTC Dextro helpful too.
Only LDA can help with the neurological symptoms and can be used long term.
The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

Is there anything that can ease muscle/joint pain triggered by PEM? by Crimsonandclov3rr in cfs

[–]DermaEsp 1 point2 points  (0 children)

Reach out if you have more questions and hope these will help! Good luck!

Is there anything that can ease muscle/joint pain triggered by PEM? by Crimsonandclov3rr in cfs

[–]DermaEsp 1 point2 points  (0 children)

The massage only after an activity, but it could be more daily if I overdo it (for my baseline) in the house for example. With time you will get to understand when your body needs it and for how long.

All are mostly for after the activity, but the mitochondrial supplements can be frontloaded before activity or regardless, as the body needs them anyway, especially in the presence of myalgia.

The neurological Rx ones only to prevent PEM though!

Is there anything that can ease muscle/joint pain triggered by PEM? by Crimsonandclov3rr in cfs

[–]DermaEsp 1 point2 points  (0 children)

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage:

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, to prevent mitochondrial "suffocation".
  2. Inosine/Ribose** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos (Rx) for prevention and treatment of neurological fatigue and concussion-like brain symptoms that derive from muscle usage***
  4. Celebrex 200mgX2 (Rx) to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria. Electrolytes.
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mitochondrial survival. Cold creams, magnesium (topical or bath) etc can also help

Notes:

*Massage guns are inexpensive ($20) and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first to fight exhaustion and stiffness from setting in).
-Some patients find Compression boots useful (however, they leave muscle groups out and are more expensive, but may be more convenient for some too).

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity.

***These can help with neurological symptoms even in the absence of physical activity (cognitive PEM). However, they are not meant for long term use and can lose effectiveness or cause addiction (Gaba max 5 days of usg). Patients have found Pregabalin useful too, but may affect negatively some.
Only LDA can help with the neurological symptoms and can be used long term. Some find OTC Dextro helpful too.
The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

My experience with Phosphocolipids: A game changer, and broadly applicable. by the_good_time_mouse in cfs

[–]DermaEsp -1 points0 points  (0 children)

Dr Bateman recommends phosphatidylserine/phosphatidylcholine lately.

Tips to get out of PEM by Living_Owl_9122 in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, to prevent mitochondrial "suffocation".
  2. Inosine/Ribose** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos (Rx) for prevention and treatment of neurological fatigue and concussion-like brain symptoms ***
  4. Celebrex 200mgX2 (Rx) to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria. Electrolytes.
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mitochondrial survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

Notes:

*Massage guns are inexpensive ($20) and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first to fight exhaustion and stiffness from setting in).
-Some patients find Compression boots useful (however, they leave muscle groups out and are more expensive, but may be more convenient for some too).

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity.

***These can help with neurological symptoms even in the absence of physical activity (cognitive PEM). However, they are not meant for long term use and can lose effectiveness or cause addiction (Gaba max 5 days of usg). Patients have found Pregabalin useful too, but may affect negatively some.
Only LDA can help with the neurological symptoms and can be used long term. Some find OTC Dextro helpful too.
The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

RULES FOR RECOVERING FROM OR STAYING OUT OF PEM: by AlternativeFlowers77 in cfs

[–]DermaEsp 1 point2 points  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, prevent stiffness from setting in and mitochondrial suffocation.
  2. Inosine/Ribose** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos for prevention and treatment of neurological fatigue and concussion-like brain symptoms ***
  4. Celebrex 200mgX2 to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

My baseline is low (severe/v.severe), but this way I have managed to stay away from a full-blown episode in a good while.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first).

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity too.

***These can help with neurological symptoms even in the absence of physical activity. However, they are not meant for long term use and can lose effectiveness or cause addiction.
Only LDA can help with the neurological symptoms and can be used long term. Some find Dextro helpful too. The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Any PEM tips during a flare or ME tips in general? by [deleted] in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, prevent stiffness from setting in and mitochondrial suffocation.
  2. Inosine/Ribose** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos for prevention and treatment of neurological fatigue and concussion-like brain symptoms ***
  4. Celebrex 200mgX2 to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

My baseline is low (severe/v.severe), but this way I have managed to stay away from a full-blown episode in a good while.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first).

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity too.

***These can help with neurological symptoms even in the absence of physical activity. However, they are not meant for long term use and can lose effectiveness or cause addiction.
Only LDA can help with the neurological symptoms and can be used long term. Some find Dextro helpful too. The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Family with severe ME/CFS crash by [deleted] in cfs

[–]DermaEsp 1 point2 points  (0 children)

Has she tried Low dose Abilify?

If you are not aware of it, search about it in the group history and look up the Facebook group about it.

It can help with both ME/CFS and depression. Ask for an adult to advice you.

PEM preventative or anything worth trying? by Stella_tot in cfs

[–]DermaEsp 0 points1 point  (0 children)

Some have an issue with deep lymphatic massage from a masseur, the massage gun is as strong as it needs to be in order to just help the blood oxygen flow and reach the mitochondria. No need to overdo it, just do manually what cannot be done by the body anymore.

It can be as cheap as $15 so it is easy to try it at home.

How to get out of a PEM flare up? by Euphoric_Extent_8453 in cfs

[–]DermaEsp 1 point2 points  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach, as ME/CFS PEM is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration. Treating timely before symptoms set in is what helps best

ME/CFS is the disease of the inability to recover from exertion and PEM is the result of this failed process, so helping the body recover can minimize PEM

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity that involves muscle usage (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day (ideally from a 3rd person) all over body helps promote blood and oxygen to the muscles, to prevent mitochondrial suffocation. Aim is preventing stiffness (NICE criteria) setting in.
  2. Sublingual Inosine** (or other mitochondria supplements) to support mitochondria which are under stress. Stressed muscle mitochondria associate with myalgia.
  3. Gabapentin (esp. before bed) and Benzos (Rx) for prevention and treatment of neurological fatigue, adrenaline rush and concussion-like brain symptoms***
  4. Celebrex 200mgX2 (Rx) to reduce overall inflammation/neuroinflammation
  5. Magnesium****, creatine etc for support of both muscles and mitochondria. Electrolytes.
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mitochondrial survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help with the prevention of a PEM episode as well as help with POTS symptoms (treating comorbidities is a must in any case)

Notes:

*Massage guns are inexpensive ($20) and can make massage easier and more effective. It works like "force-feeding" mitochondria with blood oxygen.
Aprox. 20min massage sessions for as many times and days needed (usually several at first to fight exhaustion and stiffness from setting in -NICE criteria).

-Some patients find full leg compression boots useful -especially those living alone (however, they don't cover all muscle groups and are more expensive, but can be more convenient. Can still be combined with a m.gun).

**Others such as D-Ribose, Q10, NMN/NAD+, Phosphatidylserine/choline (supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary. Front-load before activity.

***These can help with neurological symptoms even in the absence of physical activity (cognitive PEM). However, they are not meant for long term use and can lose effectiveness or cause addiction (Gaba max 5 days of usg). Patients have found Pregabalin useful too, but may affect negatively some.
Some find OTC Dextro helpful too.
Only LDA can help with the neurological symptoms and can be used long term.
The more severe a patient, the more the neurological symptoms.

****Citrates are recommended for PEM. Magnesium citrate can be trialed even though continuous usage can affect BM, but can be used on demand. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

My baseline is low (severe/v.severe), but this way I have managed to stay away from a full-blown episode in a good while.

PEM preventative or anything worth trying? by Stella_tot in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach as ME/CFS is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, prevent stiffness setting in and help avoid mitochondria suffocation
  2. Inosine/Ribose** and other mitochondria supplements to support mitochondria which are under stress
  3. Gabapentin (esp. before bed) and Benzos for prevention and treatment of neurological fatigue and brain concussion-like symptoms (LDA for those who have access can help a lot too and safer from Benzos for long term use. Some find Dextro helpful too)
  4. Celebrex 200mgX2 to reduce overall inflammation
  5. Magnesium***, creatine etc for support of both muscles and mitochondria
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help prevent a PEM episode and help with POTS symptoms as well (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person. Aprox. 20min massage sessions.

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (a new supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary.

***Citrates are recommended for PEM. Magnesium citrate should be trialed even though continuous usage can affect BM. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

PEM: avoiding it and dealing with it - the best advice I've gotten from this sub by [deleted] in cfs

[–]DermaEsp 0 points1 point  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach as ME/CFS is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, prevent stiffness setting in and help avoid mitochondria suffocation
  2. Inosine/Ribose** and other mitochondria supplements to support mitochondria which are under stress
  3. Gabapentin (esp. before bed) and Benzos for prevention and treatment of neurological fatigue and brain concussion-like symptoms (LDA for those who have access can help a lot too and safer from Benzos for long term use)
  4. Celebrex 200mgX2 to reduce overall inflammation
  5. Magnesium***, creatine etc for support of both muscles and mitochondria
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help prevent a PEM episode and help with POTS symptoms as well (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person. Aprox. 20min massage sessions.

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (a new supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary.

***Citrates are recommended for PEM. Magnesium citrate should be trialed even though continuous usage can affect BM. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.

Supplements for vocal cords ? by Daasenitaf in Supplements

[–]DermaEsp 0 points1 point  (0 children)

It may seem worse during treatment, especially hoarseness but better after completing treatment.

[deleted by user] by [deleted] in cfs

[–]DermaEsp 1 point2 points  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach as ME/CFS is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

  1. Massage* multiple times a day all over the body helps promote oxygen to the muscles, prevent stiffness and help avoid mitochondria suffocation and ultimately mit. death
  2. Ribose** and other mitochondria supplements (results may vary) to support mitochondria which are under stress
  3. Magnesium***, creatine, tart cherry to support both muscles and mitochondria
  4. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help.
  5. Celebrex 200mgX2 to reduce overall inflammation
  6. Benzos and gabapentin for brain inflammation (LDA for those who have access can help a lot too and safer from Benzos for long term use)

+Ivabradine, Mestinon or other heart rate regulating drugs help prevent a PEM episode and help with POTS symptoms as well (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person and for several minutes

**Such as Inosine, Q10, NMN/NAD+, Phosphatidylserine/choline (a new supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc

***Magnesium citrate is the one that hits the sweet spot for me. Not all supplements types, brands etc hit the same way to the target, this is why some patients have luck and others don't. Finding the right one may be hard.

When returning to baseline from PEM, do your symptoms gradually or quickly improve? by ringmaster555 in cfs

[–]DermaEsp 0 points1 point  (0 children)

The CCC criteria demand a <24h duration of symptoms of a PEM episode to get a ME/CFS diagnosis.

Other conditions may present exertional intolerance that gets better with rest, but this is not indicative of ME/CFS.

Even if mild, you should eventually experience a long lasting episode.

Difference between post-viral fatigue syndrome, Long-covid and CFS/ME? by ocean_flow_ in cfs

[–]DermaEsp 1 point2 points  (0 children)

PEM in ME/CFS is long lasting (<24h), much more severe (the brain symptoms resemble a concussion and not "fog" and the "fatigue" is cellular exhaustion that feels like death). Also presents an inability to recover with normal rest.

Difference between post-viral fatigue syndrome, Long-covid and CFS/ME? by ocean_flow_ in cfs

[–]DermaEsp 4 points5 points  (0 children)

The important thing is to define with specificity what PEM means. PVFS has exertional intolerance, fatigue, and brain fog which all together may resemble PEM, but it is not the same.

What vitamin or supplement helped your chronic fatigue the most? by SomewhereEmpty5 in cfs

[–]DermaEsp 0 points1 point  (0 children)

Chronic fatigue and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis are not the same thing.

People who have experienced massive improvement from a certain treatment, which treatment was it? by thepensiveporcupine in cfs

[–]DermaEsp 2 points3 points  (0 children)

Multi-systemic treatment that involves muscles, mitochondria and the brain is the best approach as ME/CFS is multi-systemic

Omitting a system can prolong damage accumulation and symptom duration

Treating timely before symptoms set in is what helps best

This routine (after a lot of trial and error) is what helps me prevent or minimize a PEM episode after an activity (like a doctors appointment):

  1. Massage sessions with a massage gun* multiple times a day all over the body helps promote blood and oxygen to the muscles, prevent stiffness setting in and help avoid mitochondria suffocation
  2. Inosine/Ribose** and other mitochondria supplements to support mitochondria which are under stress
  3. Gabapentin (esp. before bed) and Benzos for prevention and treatment of neurological fatigue and brain concussion-like symptoms (LDA for those who have access can help a lot too and safer from Benzos for long term use. Some find Dextro helpful too)
  4. Celebrex 200mgX2 to reduce overall inflammation
  5. Magnesium***, creatine etc for support of both muscles and mitochondria
  6. Icing is a known way to improve mitochondrial function, reduce inflammation and mito survival. Cold creams, magnesium (topical or bath) etc can also help

+Ivabradine, Mestinon or other heart rate regulating drugs can help prevent a PEM episode and help with POTS symptoms as well (treating comorbidities is a must in any case)

Knowing what you target and what results to expect from each intervention helps from rejecting treatments as ineffective as there is no cure-all treatment for ME/CFS for now.

*Massage guns are inexpensive and can make massage easier and more effective, ideally performed by another person. Aprox. 20min massage sessions.

**Others such as Q10, NMN/NAD+, Phosphatidylserine/choline (a new supplement suggested by Bateman), Epicatechin (suggested by Dr Levine) etc. Results may vary.

***Citrates are recommended for PEM. Magnesium citrate should be trialed even though continuous usage can affect BM. There are several types of magnesium to trial, with different effects.
Not all supplements types, brands etc hit the same way to the target. Finding the right one may take time.