Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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Bluebonnet08 07/10/2017

What is the thing that has helped you most so far with this illness (if anything)? Thought it might be helpful to share.

I've tried a multitude of treatments and most have made me worse. The one thing that has helped a little has been saline IVs every two weeks. I only get half a bag, now with a little bit of B-12 added to it. It helps my blood pressure overall, lowers my HR, and keeps me out of "crashes". I see an improvement of energy of about 5%... it's not great and I'm still really suffering, but it's the difference between being able to sit up and pay some online bills, maybe tidy for 5 minutes, and watch a show.. VS lying flat in the bed with the curtains drawn! It has helped me a little, with the biggest things being able to pull me out of crash and keep my heart rate lowered.

The worst things I've tried has been any type of hormone (birth control pills & progesterone cream).. made me 1000x worse!

Currently I am looking into some new tests.. I am getting the Lyme test, viral/bacterial testing, gut bacteria testing, and a more in-depth sleep study. I also did a 30 day hormone test, so I am awaiting the results of that!

okiebug 07/11/2017

Hi,
The one thing I feel has helped me the most is a probiotic with Lactobacillus rhamnosus in it.

I have a very sensitive stomach and tried many others probiotics that didn't work. I finally tried one with L. rhamnosus in it and it helped balance my stomach and has made me a lot more functional. It hasn't solved all my stomach trouble but it certainly has made a difference.

I take other vitamin & supplements, not too sure if they help but I need to try something. Also have been tested for other diseases, so far, nothing.

I'm really interested to hear from anyone who is taking or has taken Low Dose Naltrexone for CFS. I tried to get it from my Dr. awhile back and she nixed it. She offered me Provigil & at $25 a pill I've held off due to the cost. I think I will try again and see if she'll prescribe me LDN, better than just sitting here.

triunfadora 07/11/2017

Hi, dear friend. I really wish I could get IV's. I feel like thy would help. Do they make you swell up? It just isn't something that is offered out here in no-mans land.

I have taken steroids, BP meds, antidepressants, stimulants, and a whole bunch of natural remedies. In my case, I have yet to find something that helps. Most things made me worse. I will need to look into the probiotic. That might help some. I learned at Johns Hopkins that there are a third of people who respond well to treatment, one third that make some improvement, and one third that see little or no improvement. I have come to the conclusion that I am in that final third. My help is in God alone at this point. I have not had good experiences with doctors, but I go to my appointments and try to control the symptoms. I do hope you find something that helps. I think it is a good idea to share stories. Maybe there is something out there that can help.

Much love.

2DanceAgain 07/12/2017

I take a fair amount of supplements suggested by my alternative medicine nurse practitioner. I feel like they make it possible to have somewhat of a life (able to work part time, do some things I enjoy, interact with friends, etc.) The supplements I take give me extra B vitamins, Vitamin C, folate, and minerals such as calcium and magnesium. I also take a capsule that has lavender and it really helps with my mood. The prescription meds that I take are for my thyroid, my slightly high BP, and an anitviral (acyclovir). I have also taken probiotics on a fairly regular basis.

Bobbii 07/19/2017

I also take probiotics to help with the gut. I take an oral B complex. And magnesium. Among other supplements. Little helps. I try to control stress. I rely heavily on God to get me through. I try not to think too far ahead so I won't stress. I do one day at a time. I push through every single day. That's really all I can do.

Nina1959 07/19/2017

I do probiotics as well. They do help. I take Saccharomyces Bouldarii, it's specifically for helping C-diff issues, keeps that bug at bay. Got it for hubby as he had Cdiff 15 yrs ago and his stomach never recovered but this has helped immeasurably. https://smile.amazon.com/Jarrow-Saccharomyces-Boulardii-Intestinal-Digestive/dp/B0013OVW0E/ref=sr_1_1_a_it?ie=UTF8&qid=1500489362&sr=8-1&keywords=probiotic%2Bfor%2Bc%2Bdiff&th=1 Not trying to sell for Amazon, just hard to type the whole name ;) I also do enzymes and powdered whey protein for some pure protein twice a day. I keep away from grains as well. Otherwise for me it's all about meditation and acceptance of my life path as it is now. You might not be there yet, it's been 24 yrs for me.

Bluebonnet08 07/30/2017

Thanks for the replies! I just started some probiotics. I read that some strains can cause inflammation in people with CFS (releasing histamine)... I am trying the "Prescript Assist" from amazon, which had good reviews. I think I can see a slight difference from taking them. I found something called "Deep Sleep" an Herbal Supplement that I also just started which has helped me with my sleep. My sleep still isn't great, but at least I sleep a little bit now!
I use sea salts in my bath each night, which helps a lot with relaxation. I also do external castor oil packs about twice a week. It was recommended by a Natural Doctor years ago. It is supposed to be a gentle liver detox and I find it helps a bit.

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