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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Has any medications helped with your CFS?

Messages
5
Hello, new here. Nice to meet all of you.

I was diagnosed with CFS at the end of last year. Since then, I have been on antidepressants (sertraline), and Clonazepam. Well, actually I've been on these meds for a few years prior to being diagnosed, but my doctor increased the dosage.

While these do help to some degree, they don't help much. I was wondering if there are any medications out there that others take that have helped them. I have a doctors apt in 2 weeks and I thought about bringing up to him about possibly changing medications.

Also, has anyone tried stimulants? I thought about trying them since I feel down all the time, but I'm afraid they will increase my anxiety.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Antidepressants and most psychiatric medications deplete B vitamins and damage mitochondria, both of which have been found to be impacted in recent ME/CFS research.

Supporting mitochondria and being on a customized nutrient protocol, low carb organic diet, and probiotics and prebiotics may all be helpful.

The meds I take that have helped are hormones, IVIG, antivirals, antibiotics, Mestinon, beta blockers, and MCAS meds.

Welcome - there's lot on this site on all of the above.

Best wishes...
 

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
The following all helped a bit, but so far only temporary (there was a plateau and relapse). But I'm still a bit better than before starting the meds:

- Calcium channel blockers (Nimodipine)
- Valacyclovir
- Lysine

My CFS is suspected to be cause by herpesvirus. Probably HSV-1 or EBV.
 

Wishful

Senior Member
Messages
5,680
Location
Alberta
I'd question whether the antidepressants are causing more problems than they reduce. Does anyone else here have experience with that, particularly going off it after being on for a few years? I only tried them briefly, and they didn't help, so I stopped. I'm of the 'avoid medications unless they clearly help' school.

As for medications, effectiveness varies greatly among ME/CFS victims. A medication may help one, and not another, and make yet another worse. You may also encounter treatments that work briefly, then stop working, so it's important to test occasionally whether it's still working.

For myself, in 17 years I've only found one supplement (T2 or iodine) and one herbal remedy (cumin) that work reliably. However, no one else (so far) has reported finding strong benefits from these. LDN reduced my muscle aches effectively, but stopped working after a year or so.

So far there don't seem to be any medicines that work reliably for ME/CFS victims in general, which is why there isn't a sticky for 'treatments that work'. The ongoing research may change that (hopefully soon).
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
In respect of pain and other strange and cumbersome feelings I experience a progredient long-term-improvement from manganese restricted food (especially avoiding beans and other pulse).
But I am -- non-progredient -- worse in thinking (it´s rather horrible), though sometimes good since half a year. So, taken together it´s a success. It also feels like so. I sleep well enough since Ive started.
I am afraid it will take two more years, because Ive eaten for five years manganese-rich food. I couldn´t find any treatment (though for 15 months 0.9l beer have been very comfortable).
The whole thing can be understood, and I would guess that it was the core of the disease. But maybe it´s not.

I should well say that I was bad. I could move and even do some kind of sports two times a week, but anything else got more and more impossible.