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...

1,560 Members
7,095 Posts
0 Online
Muscles & Bones
/ Chronic Fatigue Syndrome Support Group

supplements advice

luna991
luna991
Hi

Just wondering if anyone has any thoughts on supplements, I am currently taking Vitamin c, b vitamin complex, calcium,magnesium zinc and vit d mix and fish oils

I struggle already to pay for these every month and have now been recommended by a naturopathic doctor to start taking co Q10, d ribose, Acetyl l-carnitine, and nitotinamide apparently these will help me with low atp and mitochondria function These are obviously all together quite expensive

I have probably tried half of these before but separately and the idea this time is to take them all together but will obviously be for a long period

I just wondered question 1 is does anybody have any supps that they know work well or ones that dont

And secondly by paying out for these supps I am leaving myself with no money for the little treats in life like a meal or coffee out or a new book etc, I know everyone is different and I would happily spend all I have on getting well if it was a sure thing, but am I being stupid by then cutting out other things in my life that are enjoyable.

Hope the ramble makes sense, just wanted to share my thoughts I guess, anyone got any thoughts on this?

Luna x
luna991
luna991
im just thinking I should give this programme a try, alsomst like one last shot and if it doesnt help that just accept condition and get on with things rather than keep searching!!!
deleted_user
deleted_user
my thoughts on supplements are stop...I took 100 worth a month and later found out they were making me ill although I thought they were helping. I believe supplements overload the body, especially when it is in a fragile state. There is a big supplement industry trying to make money and I rather cynically think it's all rather dodgey. For me giving up supplements and pills and caffeine has been a big part of my recovery. Also, coffee is is really really bad for the liver. Just my opinion. Everyone is different. Sorry if that's not what you were looking for. I'm sure other people can recommend stuff. I think alot of ME is the liver being overwhelmed.
skinnybinny
skinnybinny
ditto what boing said.
deleted_user
deleted_user
I am not anti suppliment neither for them but occasionally will take three plus child multi vitamin minerals also make food such home made soup find if made all freshest vegetables help pick me up.

I have also found coconut oil beneficial extra virgin cold compressed definately helped energy levels
Ruby30
Ruby30
I started taking liquorice and rhodila on advice from my naturopath and the next day my symptoms were much worse, they continued for about 5 days and now I am feeling better but I am reluctant to say they are from the herbs. All up the cost me over $200 and now I am really starting to wonder if they are worth it. I mean how much money do we throw at an illness if there is no known cure?? I mean I don't want to give up on getting better but I am really not sure if these make much difference. The first naturopath I saw gave me something to lift me and when I came off them (ran out) I actually got better. This is such a fluctuating illness so it is soooo difficult to know whether good/bad days are due to supplements. I am going through the same dilemma as you are right now. I starting acupuncture and massage 2 days ago and I think I would rather spend my money on that because at least it helps the aches and pains instantly.
Probably didn't help you much.............sorry!
As I said I am in the same boat with making a decision.
countr
countr
For me being diagnosed with Celiac disease and sticking to a gluten free diet has helped greatly. Prior to the celiac, I too would take vitamins, supplements, herbs, anything that might provide improvement but I never felt better. The past year we have discovered that I do not absorb vitamins and supplements due to all my GI issues. My physician gives me IV Vitamin Complex, IV Vit C, IV Glutathione. After the first IV treatment I felt better. My GI system is also doing alot better without all the PO vitamins, herbs, and supplements. I almost think my stomach is telling me "thank you." These are all decisions you make out of trial and error. Financially speaking, I go with "balance." I know I have to balance my medical expenses along with what I enjoy doing inorder to have a quality of life that is important to me. I wish you much happiness, and hang in there. This too shall pass.
luna991
luna991
when i say go out for coffee I actually have herbal tea but still say go for a coffee habit i guess never drank coffee in me life.

Thanks for the suggestions so far

Luna x
deleted_user
deleted_user
My doctor has me on:

For nutritional immunomodulation:
Vitamin A: 10,000 iu/day, preformed or mixed carotenoids, not beta carotene
Vitamin D: 4,000iu/day
Alpha lipoic acid: 400mg 3xday = 1,200mg total/day
Borage oil for GLA 1,000mg/day
Fish oil for EPA+DHA = apx 1,000mg/day

For Mitochondrial dysfunction:
CoQ-10: 100mg/day
Acetyl-L-carnitine: 1,000mg 2xday = 2,000mg total/day

Plus a very restrictive diet. All the details are on my blog:
http://ldndiary.wordpress.com/2012/08/23/my-new-supplement-plan/

She asked me to give it three months and so far, after one month, I don't feel any better, of course. And it sure is expensive. I will literally try anything to get better. Maybe that's because I've only been sick for a year, but, I can't do this much longer. I don't know how to be sick. I would lose everything and give anything to get better.
deleted_user
deleted_user
EMilo, please be careful with the restrictive diet. I was on a very restricted diet at one point...just protein and green veg! and I got much much worse. I ended up bedridden completely for 6 months. If you show any signs of going downhill then stop. I really think with a good normal diet and not overloading the liver and careful balance between rest and activity the body can heal. Obviously give up anything you think your body can't handle but other than that I'd be careful. Also would recommend the Gupta programme.