I have tried many many supplements, too many to remember. But here are some of them... co-enzyme Q10, Acetyl L-Carnitine, vitamin B12, Alpha Lipoic Acid, Probiotics, D-Ribose, L-Glutamine, N-acetyl glucosamine, Vitamin C, Vitamin D, GABA, L-Tryptophan, Pantothenic acid, Melatonin, homeopathic remedies, VegEPA fish oil, SAM-e, DHEA, Evening Primrose oil, Vitamin B-Complex, NADH, Taurine, Tyrosine, 5-HTP and Magnesium.
The only things that helped me at all have been Magnesium, the Pantothenic acid (vitamin B5), the B-Complex and the SAM-e, all of which I am still taking.
What about medications? I have taken anti-depressants on a number of occasions, mainly for sleep, at times for depression. I came off the last anti-depressant that I was taking six months ago. The SAM-e is an effective replacement.
Other drugs I have tried include Hydrocortisone, Midon, Provigil, Low dose naltrexone, thyroid hormones and fludrocortisone. The hydrocortisone helped a little, but did cause some anxiety and was awkward when I got a cold as I had to increase the dose. The LDN did seem to give me a little more stamina, but added to added sleepiness, so I stopped it. The fludrocortisone does help a little, with staying upright and with keeping going, but only about 5%. Nothing else has ever done anything else useful for me.
And that's it. Fifteen years worth of pill popping and a lot of half full supplement bottles in my cabinet. My daily regimen of fludrocortisone, magnesium, B-vitamins, and SAM-e keeps me upright, just about.
I have also - though not for quite a while - tried those therapies and treatments farther out on the spectrum of available options. Reiki, reflexology, homeopathy, acupuncture, chiropractic, the usual gamut of 'alternative' approaches. For me they have been nothing more than placebo.
It is clear to me that if these therapies have any effect, it is simply because they are usually in a relaxing space, with a sympathetic person who will listen to you and take your complaints seriously.
In my experience, if there is to be any solution to this whole damn chronic situation, it has to come from the mainstream medical direction. And that involves research, and it also involves patients taking some responsibility for their own recovery. To do that you need information, and contact with other sufferers. Hence this blog I have started.
I only recently developed symptoms of CFS. Do you have any advice for managing it? I'm hoping that catching it early might help me improve my chances for remission or a good improvement. But I don't quite know what to do. Doctor is useless and has told me to exercise.
ReplyDeleteCheck out CFS Help.com run by Toby Morrison. He has some very useful advice also videos on Youtube and is on Facebook. Good luck, don't listen to your doctor but your body.
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