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!