Do any medications/ supplements help?

[Kosmic Kitty]

I always worry about highly active folks contracting this illness, as conventional wisdom for recovery from illness has been "you just need more exercise..." Pacing is actually critical. In my 17th year, but did not start improving until after I quit my 55 hr/week management job 4 years into ME/CFS. I had a sore throat that lasted for months at a time. 3 week intervals where I was fine for 3 and down for 3. Literally could not put a sentence together one day and totally fine the next. Had problems putting one foot in front of the other during the relapses which really scared me - hence the pacing. Neuroinflammation was bad in early years. I used a cranial cap which I could put in the freezer. All these years later an Aleve will relieve the occasional neuroinflammation. I continue to look for supplements to help the Hypothalamus as I have from the beginning.
A little goes a long way with supplements for me. So I buy liquid and bulk when necessary to adjust the dosage more easily. Supplements that provide energy can keep you up all night!

Keep Vitamin D3 test levels above 50
Astralagus - I take this at start of relapse
Ashawgandha - don't take much lately but was fantastic with anxiety at one stage
L-Theanine - currently take for anxiety before I go to bed - 100 mg.
Magnesium
Tumeric
Kelp supplement of once a week or so for iodine as none in my salt
Fish oil
L-Tyrozine - affects thyroid balance
Cannabis products for pain
Homeopathic products like Arnica for pain
Pre/probiotics

Been fighting circadium rhythm issues forever. My best time of day is 11 p.m. I now take THC/CBN gummies and Hyland's Calms Forte for getting to sleep but still average 1 a.m.

Champagne, Cava or Prosecco have been VERY helpful over the years. People laugh, but I finally figured it out: Champagne increases the availability of Nitric Oxide in the blood, a vasodilator:
From Healthline: "Numerous fruits and vegetables, like spinach, beets, radishes, arugula, and leafy greens, contain nitrate [2]. Nitrites are created when bacteria eat nitrates in the mouth and digestive system. The subsequent conversion of nitrites produces nitric oxide, crucial for many physiological functions."

Thank you so much for your response while I am not in my 17th year what you explain is exactly what I’m going through in my second year after getting a Covid booster. It took a long time to reveal what was causing all the pain in my body, but it was finally found out that the Epstein bar virus is off the charts.
I went to functional medicine, doctor, etc. etc. and now realize I just need to learn what someone else said about keeping a log of what I’m eating so I can realize what’s reactivating the pain.
And I love your research on Prosecco! Lol
Cheers!

 

[Creekside]

and now realize I just need to learn what someone else said about keeping a log of what I’m eating so I can realize what’s reactivating the pain.

There's no guarantee that the factor is a food or an activity, but at least a journal gives you a chance to discover such a factor. My journal has definitely proven it's worth the effort of keeping. I learned of several foods and chemicals which reliably made my symptoms worse, and several treatments that were actually working.

This morning, the leg pains that I've been experiencing for many months were gone, and I managed to enjoy a nice hike in the woods. Now I can go over my journal and see what foods to test to see if any of the ones I tried in the last few days are responsible.

 

[emjo]

Over 2 years ago I started being serious about taking supplements having not been much of a pill taker all my life.. I have had CFS/FM since 1993. Pain and fatigue are my worst symptoms. Methocarbamol (Robax) was the only thing that helped (a little) with the pain. It is OTC here in Canada. Rest was the main thing that helped with the fatigue. CoQ10 and Acetyl L-carnitine also helped a little.

Since 1993, most days were spent with fatigue and many with pain which was less predictable. I crashed many times by exerting myself past my limits and it took miserable weeks or months to recover. My life got much smaller. I continued to work (teach) but every day was a struggle and all other activities went out the window.

Over the past 2+ years I have experimented with supplements on the basis that the pain is related to neuro inflammation and the fatigue is related to mitochondrial dysfunction which in turn is related to ER stress. The recent research in these areas has been so helpful in guiding my "experiments".

I have gone from regular pain and fatigue, barely being able to do my ADLs (activities of daily living) and not being able to have any social life ( I am retired) to being much improved. For example 2 years ago I missed my granddaughter's graduation due to having bad days, compared to recently being able to plan to be at my youngest grandson's grad with no problems. I now can plan activities and know I will have the energy to do them.

Though it doesn't feel like it is going to happen to me, I am aware that some people have found apparent solutions which have lasted for a while then failed them. So far so good for me. No crashes for a long time despite pushing my energy limits. Normal tiredness after a busy day is a joy.

I have also started practicing deep breathing to reduce stress and anxiety/assist with sleep by stimulating the parasympathetic system. I still take periods of rest/quiet time as I feel I need them. which is much less frequent than before.

Over these same two years I have downsized a 6 bedroom family home, got it on the market and moved into a new home, doing all the unpacking myself. The limiting factor with the unpacking has been some arthritis in my right hand, which is normal at my age, rather than the CFS/FM.

Speaking of age I am 86 and if my life can improve as much as it has in the past two years, I would encourage others to have hope and to work for improvement in their lives.

Also I have a Master's degree in Human Physiology which has helped me in terms of general understanding of and doing online research into the various aspects of these conditions and in taking the approach that I have. This is to restore the imbalances in the body, to make up deficiencies, and to aid the body to heal itself. I am not healed as I need the supplements but they have restored me to a point to normal functioning.

I also practice and believe in the importance of a healthy lifestyle - diet e.g. good nutrition, not over caffeinating, no alcohol, etc., exercise as you can, walking, I do squats which keep my knees from aching, adequate sleep/rest, hobbies/interests which benefit me mentally, healthy relationships which benefit me emotionally, prayer/meditation, dealing with the stresses in my life, dealing with any infections quickly etc. Pacing is very important too. Again always working on keeping a good balance in my life. These, I believe, are essential to health and well being along with the supplements.

What spurred me on is that 4 years ago my mother died, aged 106, and I couldn't face the possibility another 20+ years, at that time, of living in the fatigue and pain and crashes I had for the past 20+ years. Apart from CFS/FM I am healthy and in terms of prescription meds I am only on thyroid meds for years now and low dose antidepressant for the FM. My dr. gives me annual check up and then meds for the year.

I am writing up my supplement regime and rationale and will send it in to Health Rising. I am constantly monitoring and considering changes such as reducing magnesium as I have been on it for several years now and any deficiency is likely made up. I watch for side effects and look for alternatives if I have them. In principle, I like to take a variety of lower doses of supplements to deal with an issue e.g. neuroinflammation as opposed to taking higher dose of one as I think it is easier on the body.

I don't think there is a "magic bullet". though I know for some, certain meds have made a big difference e.g. LDN. A magic bullet would be nice.

 

[madie]

I've done a lot of brain retraining. None of the psychology-based ones have helped at all, and one in particular feels silly. However the Buddhist systems of watching and learning the workings of our minds has been a life saver. Not in any curative sense, but enormously in coping, de-stressing, and shifting out of an illness mindset.

I recently bought Herbal Antivirals (2nd edition only!) by Stephen Buhner. There's a whole chapter on "Post Coronavirus Syndrome" which is pretty much what I've lived with for 38 years. On page 111 is his powdered herbs formula that is "very specific for reversing fatigue, especially if it's chronic." I do not have high viral titers. I took his recommended dose of 1/4c at night for about 10 days before cutting back to 1/8c 2 days ago because I felt overexcited. So now I'm working out my best dose. You can buy this formula on Etsy from SusqBotanicals, "Buhner's Herbal Formula, Powder, Dry." 1/4c = 1 ounce.

I had also started garden of life sport protein powder to get 30 grams of protein in the morning. The energized feeling hasn't changed on days I don't take the protein powder.

It's all extremely personal; I'm just sharing the first thing that's worked for me in all these years for brain fog and exhaustion.

 

[TJ_Fitz]

Brain retraining is mainly for fixing a deficient immune reaction, e.g. the inadequate antibody creation against biotoxins that leads to CIRS; this is because chronic hyperarousal suppresses the immune system, and brain retraining is supposed to calm down hyperarousal.

CIRS (aka mold exposure illness) is the main cause of ME/CFS for me. I grew up in a water-damaged home and have lived, learned, and worked in many water-damaged buildings since. Combine that with significant childhood trauma, and my immune system couldn't deal with the exposure.

What's working/worked for me? For calming my brain:
-Antidepressants (Paxil, Prozac, and currently Zoloft)
-Lamictal
-Trauma-focused therapy.

For CIRS, the Shoemaker protocol is working for me. It's costly, but it gets at the root of the problem if biotoxin exposure is your issue. I now live in a clean, safe home so I'm not suffering chronic exposure, and I've been taking VIP nasal spray (last step of the protocol), and it's been wonderful: I've been able to start a mild strength training program since I started it 5 weeks ago!

The other likely contributing factor for me is fluoroquinolone antibiotics. When I took Ciprofloxacin 2.5 years ago, I got very sick and my right shoulder froze. After I finished it and my brain started working again, I did some research and learned about fluoroquinolone-associated disability (FQAD). I think I got off pretty easily compared to others, but it was still bad for me. There isn't a evidence-based treatment protocol in place for FQAD, so I'm not sure what will help with it.

TLDR: what works for you depends greatly on what made you sick in the first place: post-viral illness, microbiome problems, FQAD, biotoxin exposure, vax reactions, or a variety of other things.

 

[Laura S]

Hi, I was recently diagnoised with ME/CFS. I have gone from a high functioning, very active person, to basically home bound. Are there any medications or supplements that have helped you?

I am in 2 CFS education/ online help groups (brain retraining).

Does anyone have any advice for a newbie?

I am very grateful for this community.

Thanks in advance.

Hi there, I found Neuromind supplements helpful to a degree with brain fog, but what has helped me the most is pacing and yoga nidra. you can find tons of yoga nidra recordings on Insight Timer - a free app. Hang in there! progress is slow and infinitessimal. brain retraining, in my opinion as a psychologist, supports balancing the autonomic nervous system (sympathetic/parasympathetic). There are many ways to do this and info is available for free on the internet. I don't think we should be paying people thousands of pounds/dollars for info that is already out there. Good luck!

 

[CRCowtan]

Rest was the main thing that helped with the fatigue. CoQ10 and Acetyl L-carnitine also helped a little.

Hi Emjo.
I related to much of your experiences, downsizing the house, leaving teaching, tired of crashing, etc. I'm impressed by your active assessment of supplements and your findings. Would love to know more. I'm just starting on a serious investigation after 10 years of symptoms and having seen 4 naturopaths and over 15 doctors and specialists. None of whom have really stopped my decline from being an active outdoors person, to using furniture to assist me moving through my house.
I'm happy to read you have found some relief and hope you continue to find the best combo of treatments for you.
Cheryl

 

[emjo]

Hi Emjo.
I related to much of your experiences, downsizing the house, leaving teaching, tired of crashing, etc. I'm impressed by your active assessment of supplements and your findings. Would love to know more. I'm just starting on a serious investigation after 10 years of symptoms and having seen 4 naturopaths and over 15 doctors and specialists. None of whom have really stopped my decline from being an active outdoors person, to using furniture to assist me moving through my house.
I'm happy to read you have found some relief and hope you continue to find the best combo of treatments for you.
Cheryl

Hi Cheryl I am sorry for what you have gone and are going through. It has been on my mind to "finish" (relative as this is a work in progress) writing up the supplements I am taking and other tips. I have been challenged by the move in various ways but am getting back on track again. I haven't found any professionals to be of any use to me. Thank you for responding to my post and giving me motivation to post again with more detail. I'll get on to it and hope that something in my experience with help you. Joan (emjo)

 

[emjo]

Hi Cheryl I am sorry for what you have gone and are going through. It has been on my mind to "finish" (relative as this is a work in progress) writing up the supplements I am taking and other tips. I have been challenged by the move in various ways but am getting back on track again. I haven't found any professionals to be of any use to me. Thank you for responding to my post and giving me motivation to post again with more detail. I'll get on to it and hope that something in my experience with help you. Joan (emjo)

@ Cheryl My current supplement list. I am still working on it, trying to find what I need and not take what doesn't seem to help. This is such an individual journey and supplements are expensive. It takes a while. I have researched each of these so have my rationale for taking each of them

The biggest change has been to the muscle pain and brain fog. I hardly have them anymore. That in itself has helped with energy levels. I don't crash as I used to, probably partly due to taking rest when I need it (pacing) and also due to the supplements. If I do crash it is very short lived like a day or two of tiredness as opposed to a week or a month. I am able to exercise a little - carefully. I am also working on gut issues (IBS like). If you have any questions I am happy to address them.


Feb 2024

Prescriptions

Fibromyalgia - fluvoxamine 12.5mg (Luvox, antidepressant – helps with pain/stiffness)
Synthroid (Eltroxin) – 100 mcg 45-60 minutes before eating or drinking.

Supplements: x2 means twice daily - morning and evening

General

Calcium 1000 mg (366 mg am, 650 mg pm)
Magnesium 250 - 500 mg (150 am plus what is in other pills) (not taking at present)
Glucosamine Chondroitin MSM 500/400/400
Vitamin D 1000 – 2000 IU
Multivitamin

Muscle/Mitochondrial support

Vitamin B1 100-200 mg (not taking at present)
Coenzyme Q10/ 200 mg (up to 300mg) 2x daily
Acetyl L carnitine 500 – 1000 mg
L carnitine 500 -1000 mg
NMN 250 mg
Tudca (can’t say I have noticed it makes me feel better but I look better)
ginkgo biloba -80 mg x2 for energy (not taking at present but prob going back on it)
Alpha Lipoic acid 250 mg (not taking at present)
NAC (not taking at present)
D ribose as needed (not taking at present)

Analgesic/Anti-inflammatory (pain/brain fog)

Dextromethorphan 15 -20 mg 2 x daily
Quercetin with bromelain or Vit C 400 mg x2
Resveratrol 200 mg (up to 1000 mg.)
Acetaminophen 500mg 2x daily
Fisetin 100 mg
Relora 300 mg
CoQ10 2x daily
GABA 100 - 600mg as needed for anxiety
Robax (methocarbamol) as needed for pain

 

[emjo]

@ Cheryl My current supplement list. I am still working on it, trying to find what I need and not take what doesn't seem to help. This is such an individual journey and supplements are expensive. It takes a while. I have researched each of these so have my rationale for taking each of them

The biggest change has been to the muscle pain and brain fog. I hardly have them anymore. That in itself has helped with energy levels. I don't crash as I used to, probably partly due to taking rest when I need it (pacing) and also due to the supplements. If I do crash it is very short lived like a day or two of tiredness as opposed to a week or a month. I am able to exercise a little - carefully. I am also working on gut issues (IBS like). If you have any questions I am happy to address them.


Feb 2024

Prescriptions

Fibromyalgia - fluvoxamine 12.5mg (Luvox, antidepressant – helps with pain/stiffness)
Synthroid (Eltroxin) – 100 mcg 45-60 minutes before eating or drinking.

Supplements: x2 means twice daily - morning and evening

General

Calcium 1000 mg (366 mg am, 650 mg pm)
Magnesium 250 - 500 mg (150 am plus what is in other pills) (not taking at present)
Glucosamine Chondroitin MSM 500/400/400
Vitamin D 1000 – 2000 IU
Multivitamin

Muscle/Mitochondrial support

Vitamin B1 100-200 mg (not taking at present)
Coenzyme Q10/ 200 mg (up to 300mg) 2x daily
Acetyl L carnitine 500 – 1000 mg
L carnitine 500 -1000 mg
NMN 250 mg
Tudca (can’t say I have noticed it makes me feel better but I look better)
ginkgo biloba -80 mg x2 for energy (not taking at present but prob going back on it)
Alpha Lipoic acid 250 mg (not taking at present)
NAC (not taking at present)
D ribose as needed (not taking at present)

Analgesic/Anti-inflammatory (pain/brain fog)

Dextromethorphan 15 -20 mg 2 x daily
Quercetin with bromelain or Vit C 400 mg x2
Resveratrol 200 mg (up to 1000 mg.)
Acetaminophen 500mg 2x daily
Fisetin 100 mg
Relora 300 mg
CoQ10 2x daily
GABA 100 - 600mg as needed for anxiety
Robax (methocarbamol) as needed for pain

I would add that Dextromethorphan, Quercetin, Resveratrol and Acetaminophen are the supplements that made the difference in my FM pain. Of course they were added later in my "trials" so I have no way of knowing whether on their own they would have made a difference, but since they reduce brain inflammation it stands to reason that they would.
Also I have added Terry Naturally HRG80 Red Ginseng Energy supplement which I find does make a difference energy-wise. I am worse without it,

 

[Woundedwarrior]

I have severe ME, over 45 yrs now. ME isn't a psychogenic disease so nothing psychological is going to help with anything other than coming to terms to life being limited, and in very slow motion. There's no effective treatment, but learning to Pace effectively to prevent Post Exertional Malaise has been consistently found to help prevent or slow down deterioration. Gains from it, if they come, are likely to be modest, less gains if you do than losses if you don't, but as the disease is very disabling, can be fatal, and PEM is strongly associated with deterioration, it's worth paying attention to preventing PEM. (You can't have a diagnosis under current guidelines without PEM as a symptom.) Things I've found helpful - I take LDN as it is thought to help remediate the loss of function of NK cells, characteristic of ME. Some find it takes the edge off pain or helps with brain fog etc. I don't know if I've seen any improvement but I've deteriorated less since starting to take it several years ago. B12 patches from Amazon (as a supplement, not to remediate a deficiency) definitely give me a bit more mental clarity while I'm able to be active below my PEM triggering threshold of exertion. It doesn't raise it, nothing raises it. Magnesium is a sensible one to take and my consultant recommended that along with vits C and D, and Omega 3. TVNS (tens machine, ear clip) seems to help my sleep and gut issues, as does sodium cromoglycate capsules. Visible App and heart monitor worn on my arm is doing a very good job of helping me pace accurately, using heart rate and heart rate variability. My overall focus, for safety reasons, has to always be pacing effectively. I recognise PEM when it happens as it is clearly disproportionate to the preceding mental, physical or sensory input exertion, it is delayed 12-72 hours, typically for me about 18-24 hours, and it lasts longer than 24 hours. It is also multisymptom and makes me feel as though I have flu, amongst other horrible symptoms. I can't do anything when it happens other than get to short distance from bed to the loo and back , eating is a struggle, etc.

 

[bobnajera]

I completely understand what you're going through. When I was diagnosed with ME/CFS, I felt lost too. In terms of medication and supplements, everyone's experience varies, but I found some relief with certain supplements like magnesium and vitamin D. Also, exploring relaxation techniques such as meditation and gentle yoga helped me manage symptoms.

 

[Ken Lassesen]

There are many supplements found to improve ME/CFS from studies. I assembled this list a decade ago - focusing on keeping costs down

A Frugal List of Supplements​

A Frugal List of Supplements

In the US, the degree of social safety net for people with CFS/ME/FM/IBS is horrible. In a few countries it is “livable” without excessive stress (which would hinder recovery). This post is for a v…

cfsremission.com

 

[marthe]

I think that's a fair point, but I like to be medically guided personally rather than experiment on my own. I've done both, and got results from the former. Also, my MD (an Environmental Health Specialist who has a very Integrative approach) also had me on various herbs and supplements (over 20 at one point)...some were okay, most didn't do much, and some had intolerable side effects (especially herbal tinctures). Mestinon really worked, and without side effects. You're right that it's really *very* individual, but the problem with only trying "herbs and spices from the grocery store" is that you have no access to prescription medications that *could* help. Also, if you like DIY, you can totally do that with a doctor; a good doc will be open to you bringing up suggestions - prescription or nonprescription.
I really did not reply to impose my approach on anyone; I just spoke from my own experience of 7 years of moderate-to-severe ME/CFS.
Thanks for your input; I have no more energy to debate this so this will be my final posting on this thread.
All the best to all.

Think of those purchases as lottery tickets: most of the time you just lose your money, but if you never buy a ticket, you're guaranteed to never win. If you hadn't tried all those things, you wouldn't be sure that one of them wasn't helpful for you.

In my 20+ years of ME, I've probably only spent hundreds on possible treatments, mostly because I didn't match the symptoms/responses of people who touted their treatments, and because I didn't feel that the theories some of the treatments were based on were valid (viral cause, mitochondrial cause, etc). I did try some immune modulators, with no success, so wrote off that category. I tried some other categories, with no success, so wrote them off too. I did manage to accidentally stumble across two treatments that did work really well for me (cumin and T2 (3-5 diiodothyronine)), so those were "winning tickets". LDN was the only treatment I tried based on other people's success stories, and it did work well for me, although in a different way (pain blocker) than most reported.

I've also chewed on various bits of plants I came across on my walks in the forest, just in case one of them happened to have just the right chemical to be helpful (no wins so far). I think that for many of us, there is some natural treatment that would help. Unfortunately, that specific leaf or bark or fungus or maybe even insect might be found only in a tiny patch of remote rainforest, with no way to know in advance where to look. Still, you could stumble across something in your local grocery store or maybe an ethnic store, so pay attention to any unexpectedly better days: it may let you figure out what you ate/did differently that had an effect. Paying attention to things that make your symptoms worse is important too, because aside from knowing what to avoid, it could lead to figuring out what might have the opposite (beneficial) effect.

Oh, one more example of accidental treatments/cures. My ME started as what seemed to be a type IV food sensitivity, which gave me what I didn't realize were ME symptoms for 2.5 years. Then I made some curry with canned coconut milk that I didn't realize had spoiled. After a night of unpleasant discomfort and mess (typical food poisoning), my type IV reaction to foods was gone. Food poisoning for the surprise win! My guess is that my immune system was reacting to some bad bacteria, and the flushing out eliminated it, whereas several treatments of antibiotics didn't eliminate it.

So, don't give up "buying lottery tickets (ME treatments)"; there's always the possibility that one of them will be a winner, and effectively treating even one ME symptom might be worth at least thousands of dollars to you.

Hello ~ If you're still here . . . I read that Mestonin worked for you. How long did it take for you to notice the effects, and what were they? I hope they're still helping.
I just started a couple weeks ago and am impatient and it's hard to find reports on it's off-label use.

 

[bobnajera]

I completely understand what you're going through. When I was diagnosed with ME/CFS, I felt lost too. In terms of medication and supplements, everyone's experience varies, but I found some relief with certain supplements like magnesium and vitamin D. Also, exploring relaxation techniques such as meditation and gentle yoga helped me manage symptoms.

Oh, and speaking of supplements, I stumbled upon this natural CBD brand, trythecbd.com, through a friend's recommendation, and it's been surprisingly helpful in easing some of my symptoms.

 

[Carl#1]

IN my personal opinion, Brain retraining will only be useful if your root cause is your brain, or if it's a contributing factor. If you have underlying pathologies or deficiencies then they need to be diagnoses and treated. But learning to manage thoughts and regulate your nervous system can be a really good part of the overall healing process.
Health Rising has the best information out there for us. Cort does an incredible job of distilling the research so that we can make some sense of it. I have basically cured myself from reading this website over many years, then taking my hypothesis and questions to my medical team. It took LOTS of trail and error but I gradually improved.

Good Luck on your journey!

Brain retraining is a bogus idea IMO and will only work for people who don't really have ME or Fibro. Since when did thinking cure a biofilm protected pathogenic infection.......never. Anyone who promotes such ideas is a fraud.

Supplements which can be helpful. Vitamin B2 Riboflavin 5 Phosphate form which is only suitable for people with high digestive permeability because in a fully functional digestive system the phosphate is removed. In ME/Fibro the digestive system is so hyper permeable that R5P is absorbed intact and is fully usable. B2 is used to activate other vitamins including B6 therefore it can be very helpful. Lots of B5 can help a little but it doesn't help to a very noticeable degree for that morning tiredness when the adrenals are pumping out cortisol.

Number one tip: avoid taking different antimicrobials because the cause of ME/Fibro will adapt to them rendering them useless and will make it significantly more difficult to solve the causative problem. If you have to take antimicrobials then stick to a small number of antimicrobials which address the gram bacteria type. That will mean that all your future cure options do not disappear.

 

[Cicero]

Hi, I was recently diagnoised with ME/CFS. I have gone from a high functioning, very active person, to basically home bound. Are there any medications or supplements that have helped you?

I am in 2 CFS education/ online help groups (brain retraining).

Does anyone have any advice for a newbie?

I am very grateful for this community.

Thanks in advance.

Hey, I can't speak for anyone else but you can try taking Polaramine or Phenergan at night. They are very strong antihistamines and can cause drowsiness. I've been taking Polaramine for 3 months now and I have more energy and less crashes. One other person in my ME support group tried Phenergan and said it helped.

This is a very small sample size but they are over the counter pharmacy medication so it might not hurt to try. But of course as always talk to your doctor first before trying medication.

 

[valdezfa48]

Hi, gravescal, I’ve tried the brain retraining and it did help me a little yet short-term. I agree with the others re: causes and nervous system focus. The greatest help I’ve received is from low dose Ritalin. Higher than 5 mg worsened symptoms although for some it appears they can handle it e.g. per other ME CFS docs. It cuts the PEM and I’m not bedridden though can still crash. Here is an article: https://www.healthrising.org/treati...nidate-chronic-fatigue-syndrome-fibromyalgia/. Take care 🤞

 

[valdezfa48]

I agree with you about antihistimanes—interesting secondary effect. However, with some research it is an anti-inflammatory. Levocitrizine has the same impact for me even if it wore off in the past. I started it again recently and it works again. We’ll see how long.

 

[valdezfa48]

I always worry about highly active folks contracting this illness, as conventional wisdom for recovery from illness has been "you just need more exercise..." Pacing is actually critical. In my 17th year, but did not start improving until after I quit my 55 hr/week management job 4 years into ME/CFS. I had a sore throat that lasted for months at a time. 3 week intervals where I was fine for 3 and down for 3. Literally could not put a sentence together one day and totally fine the next. Had problems putting one foot in front of the other during the relapses which really scared me - hence the pacing. Neuroinflammation was bad in early years. I used a cranial cap which I could put in the freezer. All these years later an Aleve will relieve the occasional neuroinflammation. I continue to look for supplements to help the Hypothalamus as I have from the beginning.
A little goes a long way with supplements for me. So I buy liquid and bulk when necessary to adjust the dosage more easily. Supplements that provide energy can keep you up all night!

Keep Vitamin D3 test levels above 50
Astralagus - I take this at start of relapse
Ashawgandha - don't take much lately but was fantastic with anxiety at one stage
L-Theanine - currently take for anxiety before I go to bed - 100 mg.
Magnesium
Tumeric
Kelp supplement of once a week or so for iodine as none in my salt
Fish oil
L-Tyrozine - affects thyroid balance
Cannabis products for pain
Homeopathic products like Arnica for pain
Pre/probiotics

Been fighting circadium rhythm issues forever. My best time of day is 11 p.m. I now take THC/CBN gummies and Hyland's Calms Forte for getting to sleep but still average 1 a.m.

Champagne, Cava or Prosecco have been VERY helpful over the years. People laugh, but I finally figured it out: Champagne increases the availability of Nitric Oxide in the blood, a vasodilator:
From Healthline: "Numerous fruits and vegetables, like spinach, beets, radishes, arugula, and leafy greens, contain nitrate [2]. Nitrites are created when bacteria eat nitrates in the mouth and digestive system. The subsequent conversion of nitrites produces nitric oxide, crucial for many physiological functions."

Jiki, thanks for this post ❤️—I find Alleve has the same neuroinflammation reduction for me too—given the long term effects. How often do you take Alleve? Also, could you tell me more about the cranial cap please?