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What treatment for your CFS has worked for you? What hasn't? Share your stories!

By HERWriter Guide October 28, 2010 - 10:09am

If one particular treatment has or has not worked for you - please share it!

Obviously we call react to certain treatments for any condition differently but it'll be good to know for our own research - what has worked and what has seen no results.

I hope you can share your tips!


By HERWriter June 28, 2012 - 3:09pm

Good luck. :)

June 28, 2012 - 3:09pm
By June 28, 2012 - 1:59pm

Thanks for getting back to me! I was looking around if there is anything I can change in my lifestyle or diet and I found this all new form of healthtap.com! It looks like it is mostly free, and you can pay a bit for premium services like direct connection with a doctor. I think I'll give that a try as well!

June 28, 2012 - 1:59pm
By HERWriter June 26, 2012 - 7:24pm

Welcome, orangebricks.

That's a good question. There were periods when I just made a point of wearing some makeup for that reason. A little concealer for the dark shadows and bags under my eyes. A little mascara to make my eyes look less like burnt holes in my face. A bit of blush to take away from the pastiness. Maybe a bit of lip gloss. I found that doing this, while it was all totally superficial, did make me feel a bit better. I felt more normal. And when I looked in the mirror I looked more like "me".

Mind you, the hours spent in bed meant I dealt with mascara raccoon eyes a fair amount but during those times I decided it was worth the nuisance.

That's all I got for now. :)

June 26, 2012 - 7:24pm
By June 26, 2012 - 6:29pm

Do you have any suggestions on how to appear less tired, even if I don't feel any less tired. I would just like people to stop commenting on how tired I look all the time. I feel like it just makes me feel worse.

June 26, 2012 - 6:29pm
By April 11, 2011 - 2:25pm

OMG KLM, we sure have walked this lonely road together! I so relate to your journey and all you have tried. I was first diagnosed 30 yrs ago and am at a point in my life where I am so alone in this. I have found that periods when I get sleep make a HUGE difference in my energy after a few days! Now, I am my own worst enemy when it comes to staying on any schedule and gettling to bed before midnite and I sabotage myself over and over and forget' what I absolutely NEED to be doing to stay well. As far as what has worked for sleep....nothing magical. When I have tossed and turned for awhile I have forced myself if I get up to NOT turn on lights, TV or 'puter. I meditate and pray and if I have to turn on a small light and make notes of all the things that are coming to mind that I have to do! I take melatonin (3 mg) and a mirapex for restless leg that seems to help. I am going to try valerian root again.
I have had success with the herbal remedies for feeling better overall for cleaning up my system. But after a few months have had to stop as I am having a shoulder replacement in a few wks. I will go back to it as I do believe that getting the gut and intestines cleaned is the place to start for anyone and almost any illness. Taking 3-4 different herbal antivirals/fungals.bio twice a day has helped me. I am trying to avoid toxins, meds and stress. I massage my dogs, get out in fresh air everyday with them and breath and smile. I try very hard to keep a possitive attitude and stay spiritually fit. I find that if I get in fresh air for at least an hr in the early evening that I will sleep better....even if it is just laying down outside. Anyway, I am blabbing....and sorry no better suggestions.....but I have been working so hard on KEEPING a healthy pattern as with the cognitive stuff self-sabotage can easily take over! Has anyone else experienced problems with that?? Blessings, Mar

April 11, 2011 - 2:25pm
By April 9, 2011 - 8:02am

I have been diagnosed with sleep apnea and narcolepsy. For the sleep apnea, I use a cpap machine every night. For the narcolepsy, I take 250mg. of Nuvigile. Prior to going on the Nuvigile, I could not set at my desk and work or drive my car without dozing off. However, I am still chronically tired. I recently asked my doctor if it is possible to be so tired that your bones ache for that is exactly how I feel. People are constantly commenting on how tired I look.

April 9, 2011 - 8:02am
By HERWriter Guide April 7, 2011 - 8:45am


Thanks for joining our Group and for telling us a little about your life. Your CFS seems to be a rather serious case and I'm sorry you're still in so much pain. Just be reading what you are doing to help yourself shows you're certainly not watching life pass you by although I can imagine the days of severe pain make you too tired to try - that's very understandable.
I haven't heard of the new therapy you're talking about but I'm going to read about it so I can have a better understanding of it. Hopefully some of our members will have some input.

Thanks again and welcome!

April 7, 2011 - 8:45am
By April 2, 2011 - 3:01pm

Hello to all of you. I have just joined the group. I have been dealing with CFS for years and have tried so many things--a huge range of supplements, alternative therapies (acupuncture, healing touch, massage, body talk, body management), I see a naturopath regularly and she is trying a variety of strategies with me, I watch my diet, I have tried rest with no exercise and have for the past few months added walking (actually more like staggering--very short distances--with a cane) and do some yoga, I have tried meditation, have recently taken up Tai Chi, and nothing is helping me feel better. I had to go to Mayo Clinic to get a diagnosis as no one in my home town was able to tell me what was wrong with me but they were not able to suggest anything for healing that is different from what I have tried or am trying. I live a very limited life at present--I am on sick leave and spend huge chunks of my days on the couch and often even have trouble mustering the energy to read. I have just heard about a new approach called Mickel Therapy and have seen a practitioner once. I am curious if any of you have heard of this strategy. Dr. David Mickel believes that CFS is caused by the hypothalamus gland getting stuck in overdrive which then triggers the fatigue, brain fog and digestive disorders (overload of stomach acid). Also, I know that a significant factor for me is sleep. I cannot nap even when I can't move or keep my eyes open, and I need to take sleeping pills to sleep at night. Have any of you been successful in dealing with this issue? I am looking forward to being a part of this group--it is a lonely journey. KLM

April 2, 2011 - 3:01pm
By March 20, 2011 - 10:31pm

Thanks for sharing this Dreambirdie. I had been considering trying this again and now will! I was first diagnosed with Fibro/CFS about 1982ish, so have tried a whole gamut of different things. I have recently been doing the anti-viral/bac/fungal herb routine and cleanses and they make a minor difference. I am also taking GSE. I am at a point where I am using quite a few together as I have been growing so tired of this. This winter was the roughest time of my life so far, so I am glad I have found this website. Thanks all!

March 20, 2011 - 10:31pm
By HERWriter November 24, 2010 - 2:00pm

Thanks for the suggestions, Dreambirdie.

I'll see what I can get into him. :)

Susan, for some of us with CFS diet seems to play an important role. Each person also seems to be unique. What works for me would make someone else with CFS more ill.

Diet isn't the only factor but getting it working better can make a huge difference.

November 24, 2010 - 2:00pm

Group Leader

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