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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Low Dose Naltrexone

DivineSilence
DivineSilence
I have been taking 4.5mgs of Naltrexone for all of 4 days now and there is a huge diffreence already. Saturday morning I woke up and started cleaning the kitchen like I always do but I used to get things organized, fill the sink with soapy water and begin..... then I was exhausted and would go rest or read for awhile.... about every hour I would get up and work for 10 or 15 minutes before going to rest again... I was lucky if I get everything done before the weekend was over. So Back to Saturday.... I got started then opened the fridge to get something for breakfast and thought "damn, this fridge is filthy".... so I cleaned it out then noticed how dirty the drawers and shelves were... so I took everything out and scrubbed the whole thing.... then I did all the dishes and scrubbed the floor... I was actually sweating. It's been so long since I've been able to do enough activity to sweat.... I had the entire kitchen clead and shiny by 11am. I also cleaned my room and organized my closet. Of course Sunday morning I was achy all over but it was a good achy..... Monday and today I just feel like I'm alive again. I'm still skeptical because I have a hard time believing that so innocuous a drug could have such a huge impact so fast and I'm wondering if it's all just a placebo effect though I never had that with any of the other drugs I've tried. Anyone else had success with LDN? How much success and did it last? I feel so good and I would really hate to have this taken away from me....
deleted_user
deleted_user
I started reading up on LDN a few months ago. It's got some anti-inflammatory properties so it makes sense that it would relieve some of your pain. There's definitely some potential but I'm going to wait until a few more studies are completed.

It's great to get the regular things done. Cool Beans!

Keep us updated on your progress, eh?
deleted_user
deleted_user
I currently take LDN at 4.5mg as well. I don't have nearly as great a benefit as you but then again I am not able to ever do chores or anything. (Bed/couch ridden). However, it does help with mental clarity to a slight degree and since it is an immune booster it can ward off other diseases. I know a lot of people on it and everyone has a different result. After 2 weeks the effectiveness wore off so I took a break and went back on. This is what works for me. Two weeks on and 5 days off. BTW despite what much of the literature says, it doesn't have to be taken at night. I take it in the AM. It is just as effective without causing insomnia (which it can in some folks). It is being used for cancers, MS, autoimmune illnesses including AIDS, etc.

Like any med. taken for this illness, it doesn't help everyone. So it is quite wonderful that it is helping you!!
Genie61
Genie61
I researched this also but my Rheumatologist said no when I asked about it. Apparently it has to be mixed a certain way by the pharmacy and there aren't many pharmacies that do that. I did do a check and found a pharmacy about an hour and a half away from me that's on the list. Still can't get my Rheumie to okay it.

I'm really interested in hearing what experience others have with this.
Thanks for sharing!
deleted_user
deleted_user
So excited to see your post. Have been on it for over 2 years and I have my life back. I have fibro. which is Chronic Fatigue with a side of pain for kicks. I was in a research study through Standford University. It has changed my life. Pain went from 8/9 daily down to a 4. 4 for me was manageable. Able to work but not much after that. Then I started working out (we are talking 1 hour/4 times a week with weights, cardo alone does nothing) and I can be pain free. The Naltrexone is the break through for me. For other reading this, there is now published studies through Standford that should help you get your dr's to consider it. My cost a month is $30. Kaiser will not cover it because they can not cut the pills themselves. It has to be done at a real pharmacy. But heck, $30 is cheap. My co-pay is $20....
Anyone want more info? just contact me. I am not here so much any more because I am back to living again but I check in about once a month.
I have posed this drug several times but no one has ever commented, sad a little but hey, you have some people responding. I hope more people try. OH- and little to no side effects!
-Cindy
DivineSilence
DivineSilence
My hair has been so lifeless and drab..... it used to be soft and wavy but it just hangs there all dry and blah.... Today it's wavy again?!? and soft and starting to look like it once did. I haven't changed shampoos or anything. Maybe a little thing, maybe not related but I keep noticing little stuff like my hair and that I can walk up the stairs at home without having to pause for a breath halfway up and without pain in my legs..... little things but they all add up. :)

There is a website www.lowdosenaltrexone.com which has links to half a dozen current studies and tons of info.
deleted_user
deleted_user
This is something I have been reading about and want to talk to my doctor about. It is supposed to help depression as well.

I started Cymbalta and the depression is better but the fatigue remains. I almost feel like the Cymbalta is making me feel sicker.
deleted_user
deleted_user
Cindy2008 - I am glad it has helped your pain. That is what I am hoping as well if I can even get my psychiatrist (who also does pain management for me) to go for the idea. I really want off the Tramadol for pain. Whenever I try to cut down by 50 mg., I feel pretty bad pain wise and like I am generally ill with something. Do you know if it affects the opioid system?