Can people share their experiences of non-prescribed products that have helped them with CFS please.

Not an answer, sorry - I haven't found anything that helps yet! - but I'm curious if you find St Johns Wort improves your symptoms at all? I was prescribed an antidepressant and read such terrible things about it I decided not to take it, but I'm intrigued by the possible effects of antidepressant-like drugs on energy levels and if there is a less dangerous option would be interested to try it.

I also have trouble with sleep and was prescribed melatonin but it doesn't seem to be doing anything. I hadn't heard about magnesium helping with sleep. Does it help you at all?

Sorry again that I don't have anything useful to suggest! If I find anything I'll certainly share it here.

Following on rom Norwegian research which suggests that the Mitochondria energy cycle is damaged in some way and they found taking protein (mainly men  or taking fatty acids(mainly women) as a supplement may help. I now take a daily does from a UK supplier of three times 1500mg of amino acid complex. I have found this has more or less removed brain fog and has improved by around 20% energy recovery from sore muscles. From reading about Phosphate buffers being used I use sodium bicarbonate (baking soda) for when my legs are either restless or feeling sore (lactic acid effect - as a senior athletics coach and athlete  I understand and know the feeling) This improves both .. the restless legs less so but enough to enable a better get to sleep process. I am currently looking at the energy cycle systems again and trying out various amino acids to see if there is a best one of best two or three. Turmeric seems to be an effective anti inflammatory and seems to help... Q10 at 200mg a day seems to make a difference too, both when not taken I feel worse. AS a biochemist and the coaching background (level 4 UK in various professional qualifications I feel that the reactions I have had does support research which suggests this is an illness of the mitochondria. I hope this helps.   

Hi there,

I was taking something called Feroglobin and i think with this condition there needs to be a sense of caution in that, I'm sure most on the forum will agree, we want what we had before right?! We want our health back!

So, when the question is "anything that has helped" I am saying that this helped in the sense that things were not as bad if that makes sense? I didn't get well but, i didn't get to bed bound awful as much. I haven't carried on taking it as i meant to get some more and keep forgetting. I'm also trying not to overdo things presently so, i feel that it's a combination of things. I also don't have milk or wheat, coffee, am vegetarian, not had alcohol in ages (last time i did i could not sleep at all, it was awful) i try to have chai seeds and omega seeds as often as possible. I have recurrent laberynthtitis and (pre cfs/me) it was noticed when i had a bad patch of feeling very dizzy plus palpatations, that my b12 was deficient. The b12 really helped with both of them. I was falling to one side a lot too (laberynthtitis affects balance). The feroglobin contains a range of vitamins including b12 and iron.

It's interesting but I've read a few things recently containing reference to cfs/me and blood including lower blood volume in the condition . Iron helps oxygen transport and red blood cell formation. Which helps with fatigue so I've read. This, i believe is in healthy individuals and so, like i say, caution is needed. The cfs/me inhibits "normal" functioning. Therefore I'd say, yes it helped me. I was also trying to eat a salad a day for health. Plus, when i remembered calcium and magnesium tablets to help with bone/muscle function. I get a lot of pain in legs/back etc. I should add i can't carry things because of the back issue without pain so my overall functioning is lowered.again, this may contribute to my own unique manifestation of cfs/me. I definitely think doing less, plus vitamin supplementation, helps me. I don't have restful sleep but, i don't have many nights where there's no sleep. Pain sometimes keeps me awake, other times sends me to sleep. At present my cycle is 6/7 hours with often a bathroom break or several! Not long periods of awakeness like others though.

With regards sleeping, i hope the magnesium helps. Also, try to do things that relax you before bed time. Lower the lights, a bath, reading, relaxation tape etc. Lavender is said to help. Anything that has helped in the past? If you overthink at night, Write things down and say to yourself that's for tomorrow.

The doctor can refer you to all kinds of services and maybe able to help. Has Sleep apnae clinic been suggested?

Hope that helps

Beverley

Evening primrose oil capsules have helped me. I take 1000mg twice a day.

Sorry, I forgot to mention that I also take Spatone iron supplements.

I took Lambert's supplements for years as advised by my consultant who diagnosed ME . They are hypoallergenic and high potency . Also took high potency GLA. Eventually stopped as not doing anything for me . oral magnesium made me feel dreadful. So stopped that too. CQ 10 did nothing for me either. Tried all sorts and I took them for a while to give them a chance .the only thing that helped a little was magnesium by injection. Had hardly any of the horrid effects from taking it orally.

FOR ME SYMPTOMS

St John's Wort was recommended by my 1st specialist. It is very good but it is very time specific: 1800 mcg got me through four hours of mental concentration - sermon study back when I still worked. Then it ran out quite dramatically and I got dizzy and went home to bed. (Lost my job soon after...)

Cortisol was also prescribed and it has helped some people. Nowadays I chew 5mm of licorice root in the morning or before going out which is much more effective - it helps the natural cortisol stay in the bloodstream for longer, thus supporting your adrenals ( which are prone to over-stimulation in CFS)

NADH 'Enahda' was recommended by my 2nd specialist. 3 tablets with 200 ml of water on an empty stomach in the morning. Gives you energy, but expensive and I think only really helpful if taken consistently.

GENERAL HEALTH

With all the inactivity health suffers.

I would always keep a multivitamin B near to hand if your body shows a deficiency.

I try to take vitamin E when financially possible as it battles the scar tissue that can build up in the arteries with the unavoidable obesity of fatigue starts to protrude from your waist!

2-3 units of alcohol a day plus 3 portions of oily fish a week and Benecol instead of butter  was prescribed by my doc for dietry means of lowering cholesterol.

 

Over the last 10 years i have tried many things, initially at the start B12 injections gave me a bit of a boost then after around 2 years my levels were too high so was advised to stop them. Prescription drugs do not work for me, I always suffer far worse with anything I’ve tried, so I try to stick to more natural remedies. 5 years in I had a massive relapse & had to give up my hairdressing business. I have tried many things to help with sleep, valerian root being 1 but can only be taken for short periods. I felt it made me more lethargic during the day so gave up on that. After a break I then tried 5HTP which I found very good & also helped my mood massively (these cannot be taken with antidepressants) my sleep was more restful & I felt cfs/me symptoms improved a little but had to be careful not to over do it as it would still come back to bite me on the bum. Again they can only be taken around 4 weeks at a time with a few weeks break in between so not consistent. About 2 years ago I started taking Proargi 9 plus. This helped regain strength in my legs to stand a little longer (which I was struggling with as felt so very weak) I had reiki healing before I started it & was told he’d never experienced anyone with such weak muscles -other than a 93 year old woman!! I’m 48! (Rolling eyes) Over time my muscles became stronger & I felt a bit more energy. Not bundles but more than I’d had in a long while. I believe it speeds up the transportation of blood around the body (blood coagulation) the main ingredient is l- arginine.  It’s very good for the heart & contains other essential vitamins. I’ve tried leaving it off & go down hill very quickly. I wouldn’t be without it but I will warn you it is not cheap!!  

Recently I have been taking cbd oil capsules. It’s been about 5 weeks so fairly early days & they say you need a good few months to feel the real benefit. Anyway they’re really helping cfs/me symptoms.  I feel less pain, sleeping better, feel a lot calmer and generally more cheery, I’m even stronger on my legs & feel more energy at times, although I’ve been coping with another infection of late so I’m excited to see if I continue to make progress with it. I know we’re all unique & what works for 1 doesn’t always work for another. I believe you cannot take the cbd oil if you take antidepressants so may be wise to talk to your GP anyway (if you have one that understands!) 

I also take omega 3 & msm tablets, Rescue remedy night drops & lavender oil or spray on pillow. 

Apologies for the long post. Phew! 

Pet  

I'm finding raw cacao powder (which also contains magnesium as well as iron) give me a boost. It's the proper unprocessed kind and not the cocoa powder you get in supermarkets.  I drink it mixed with skimmed milk and it gives me a little surge of energy. 

I’ve recently started taking BCAA’s i read somewhere they helped, it has been long enough so notice the effects (due to a very bad cold) but i hope that i notice a difference next week!