Do any medications/ supplements help?

[valdezfa48]

Hello @gravescal,

Yes! There are treatments that can help.

However, it can be a difficult, arduous process of trial-and-error, but I am heartened that relatively recent research is helping me (e.g. by David Systrom on Mestinon/Pyridostigmine). I have personally, and by sheer luck, experienced some improvement with the aforementioned drug (e.g. from 1 or 2/10 daily energy to now ~5 or 6/10...where 10 is a full tank and 0 is bedbound). But my doctor had to increase the dosage gradually. I've been on it since January 2023. It also has helped me with orthostatic hypotension, neurally-mediated syncope (fainting spells), and IBS-C.

My best tip is to find a medical doctor that is a good fit, and specializes in CFS/ME (waiting times can be long, but it's worth the wait). Personally, I haven't found much help in the way of alternative medicine. I stay away from it generally, because it doesn't seem to work for me, it is not as well-regulated, and can also be very costly (here in Canada, alt-med is not covered under public insurance).

Best of luck! Take care, and always remember to pace and protect your energy.

Bren, thx for your post. I took Mestinon and it made me feel normal for a day then dropped off. I’m on low dose Ritalin now which is helping with the sx you mentioned, but can you please tell me if Mestinon helped you with any cognitive deficits? Thank you for your time.

 

[AEW]

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, I was told by the doctor who diagnosed my fibromyalgia to take malic acid. I take it with magnesium in the form of magnesium malate and it is my pain medicine. I’ve taken it since 2008 and I’ve tried to stop it but can’t. It hurts too much without it. I take 3750 mg at bedtime.
Diet is a strong key. Get off gluten and sugar. Eat only whole fruits. Berries are best. A nutritionist told me to heal my gut. I’m still trying to figure out how to do that but a book I read recently called The Holistic Gut Prescription by Lauren Deville will help you. I discovered through reading it that I have SIBO and am treating that with antibiotics and low fodmap diet. It’s certainly helping my gut issues if not my fatigue levels.
Get allergy and thyroid tested.
Try PEMF. My fibromyalgia specialist put me onto that and it works for me. I invested in my own device and treat 3-5 times a day. Over 8 months it has helped with energy, pain, brain fog, arthritis of knee and hands, and a slight reduction of my POTS. The negatives are its expense and the time it takes. It’s running my schedule at the moment. (I chart everything I do, from treatments to food changes, and I recommend you do that too.) Another negative is the delicacy of the equipment. I am replacing the exagon sense attachment of my iMRS Prime device at a cost of $1000.00. I tried to stuff my hand into my pocket with the oximeter on and kinked the cord. The whole system costs $7,000. Treat it like gold. No, treat it like eggs.
Another book that helped me was Myofascial Disease and Dysfunction by Travell and Simons. Chapter 4 discusses perpetuating factors of chronic pain and I bought the book for that chapter alone. Some of its main take aways: pay attention to nutrition, thyroid, ergonomics, and pacing. Don’t do any activity for more than 2 hours. If your body is off-normal, get a work chair that puts your hips and knees at right angles, and your elbows should be at right angles on your work desk when you sit straight in your chair.
Exercise very gently. Tai chi and walking are good, if you’re able. Stretch every day. Keep a routine. Meditate.
Avoid toxic people.
Educate yourself. Find medical practitioners who will work with you even if they don’t understand your disease. If they won’t help, find someone who will. Good luck.

 

[jaminhealth]

My LONG TIME supplemenet has been Grape Seed Extract ,, been taking it 29 yrs soon....I deal with a load of arthritis, FM was always a questioh,n no CFS but plenty of fatigue at 86 soon, I could use more Thyroid but it's gotten so damn $$$...so I cut back.

A friend with ME for many yrs. believes MORE potassium is critical for more Energy....get your potassium tested and look at the potassium foods you eat. I like to see potassium level at mid range at leawst, not low on the range.....

Food does help but NOT ENOUGH...

 

[jaminhealth]

My LONG TIME supplemenet has been Grape Seed Extract ,, been taking it 29 yrs soon....I deal with a load of arthritis, FM was always a questioh,n no CFS but plenty of fatigue at 86 soon, I could use more Thyroid but it's gotten so damn $$$...so I cut back.

A friend with ME for many yrs. believes MORE potassium is critical for more Energy....get your potassium tested and look at the potassium foods you eat. I like to see potassium level at mid range at leawst, not low on the range.....

Food does help but NOT ENOUGH...

 

[Woundedwarrior]

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.

I am not a doctor and what follows should not be taken as medical advice, just someone with M.E. sharing their experience. The two vital bits of information are that pacing is vital to prevent Post Exertional Malaise which is harmful and strongly associated with deterioration. So how you use your energy below that threshold that triggers PEM is up to you, but no amount of 'thought retraining' or exercise, or 'building up', or 'activity management' that takes you over that threshold and triggers PEM is going to help - it will simply be making you deteriorate. The deterioration can be anything from virtually imperceptible but building up slowly over time, to sudden and drastic. The second is that the disease can kill, so don't mess with it by overdoing it as it's possible to deteriorate fast. Remember the disease is multisystem - impacts GI as well as muscles, brain, breathing etc.
Regarding supplements, there are two medications that come first to mind, before supplements. They are LDN and LDA, Low Dose Naltrexone, which may not give you any improvement you can notice, but which is thought to be helping to restore NK Cell function. You can google what NK cells do and why they are important. They are apparently compromised in ME/CFS. Low Dose Aripiprazole (trade name Abilify) is widely used, and has side effects but can be a game changer for some. It is the only thing I've found in 46yrs of the disease that can raise my PEM threshold. When you are very low in function, even a small improvement feels large, but take care to read take medical advice before deciding. Supplements - my consultant recommended Magnesium, quercetin, Vits C, D, B12 (which helps energy while you are below PEM threshold), zinc, selenium, flushing niacin. Be careful not to take too much of anything - read, check, follow medical advice. I also take Coq-10 particularly when in PEM or brushing the threshold, and that seems to help a little. For generalised pain, I don't use opiates as my gut problems get worse, so I rely on nortryptyline on prescription, plus paracetamol when needed. Transcutaneous Vagus Nerve Stimulation (a regular tens machine, ear clips right on the body of the earlobe close to the scalp, 30 mins x 3 a day, the settings are on the facebook group A Vagus Adventure. There's studies ongoing, but it seems to enable me to get deep sleep, so I don't just doze on and off at night, I can get a proper night's sleep even if I still wake up with an 'uncharged battery'.
I have to take about three different antihistamines to handle MCAS which often comes with ME/CFS, and supplementary fluids are vital for many of us because so many of us get orthostatic intolerance (difficulty standing, being upright for any length of time even sitting etc) due to low blood volume. So hydration is really important. I also take sodium cromoglycate tablets to damp down gut problems/food intolerances and it definitely helps. I don't know if any of that is any use - if you have low mood and need an antidepressant, some are recommended for people with ME/CFS and some not, but I don't have that information. I do hope you improve, don't waste money on people who claim to be able to cure you, it's snake oil. The only private treatment I'm aware of that has anything remotely like a positive reputation is HELP Apheresis, controversial, and very expensive, only available in a few places in the world. It removes microclots among other things, in LC and ME. However, having done the 'home test' for microclots I don't seem to have them - so it may be it is more helpful for a subset of people with Long Covid than for ME/CFS. According to Prof. Pretorius our microclots are different to those with LC. The pace of research is picking up, so don't give up. Even life in bursts of two or three minutes between long rests can be worth living.

 

[ediirwin]

I was helped by studying the book ME/CFS/PVFS The MEA Clinical & Research Guide An Exploration of the Key Clinical Issues. This book is from the UK ME Association April 2022. Been taking acetyl-l-carnitine 750mg twice per day for stamina, Duloxetine 650mg/day, and Low Dose Naltrexone 4.5mg/day. (Used to be on Neurontin for pain, but it can cause respiratory depression.) This combo is not ideal, and I take Tylenol Arthritis or acetaminophen with a muscle relaxant.

 

[ediirwin]

I also take Efamol evening primrose oil and a drop of Oregano oil in water.