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What supplements can help?

Postby chimpeey on Wed Aug 14, 2013 8:35 pm

Hello,

I've been suffering with fibromyalgia for about 8 yrs but I was only diagnosed by my doctor 3 yrs ago, I have good days and bad days but every day I have pain somewhere in my body, I take Dosulepin and painkillers usually cocodomol, I was wondering if there are any supplements that I could take to help ease my fibro or help my low moods.
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Re: What supplements can help?

Postby happyturtle on Wed Aug 14, 2013 8:51 pm

My GP recommended Turmeric for pain relief. I tend to be very sceptical about supplements, but this one actually works well for me. I take 10mg tablets, one daily.
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Re: What supplements can help?

Postby Dr Charles Shepherd on Wed Aug 14, 2013 10:56 pm

There are a vast number of vitamins, minerals and supplements that are recommended to people with ME/CFS - some are sold as expensive combinations

However, there is no sound evidence that any of these products are effective

There are a few - eg carnitine, eicosapentaenoic acid/EPA - where there is some limited evidence from clinical trials but I don't usually recommend this route

The only vitamin that people really do need to take seriously is the possibility of vitamin D deficiency, especially in people who are housebound and lack regular exposure to sunlight and people on dietary restrictions

The MEA has information leaflets covering vitamin and mineral supplements and Vitamin D. Similar information, along with summaries of clinical trials, can be found in the Treatment section of the MEA booklet: 'ME/CFS/PVFS - An Exploration of the Key Clinical Issues'

MEA website + pdf literature order form: http://www.meassociation.org.uk
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Re: What supplements can help?

Postby stonebird on Thu Aug 15, 2013 9:04 am

I am very surprised at Dr Shepherd's statement that "there is no sound evidence that any of these products (vitamins and minerals) are effective." Not in our experience !

Briefly - for example :

Magnesium is involved in over three-hundred enzymatic reactions in the body. It is essential for energy production, nerve conduction, muscle function, and bone health. Supplemental magnesium can improve energy levels and emotional states, while decreasing pain; where muscle pain is a key symptom magnesium combined with malic acid has been found to be useful - in my wife's case, a life-saver !

Coenzyme Q10 is necessary for energy production, immune function and repair and maintenance of tissues. Coenzyme Q10 deficiency in ME has been found to be related to fatigue, autonomic and neurocognitive symptoms and is a risk factor explaining the early mortality in ME due to cardiovascular disorder.

Vitamin C boosts immune function and helps detoxification pathways ; some long-term M.E. patients report significant improvements with very high dose vitamin C treatment.

In some studies it has been shown that people with ME have a specific kind of B12 deficiency in the cerebral spinal fluid, the same as that found in Alzheimer's.

Significantly all the above are proscribed by NICE, for people with ME (NICE Clinical guidance 53 )- as in so many areas, NICE's guidance is greatly at odds with the medical research and the practical day to day experience of patients.
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Re: What supplements can help?

Postby Mimetic442 on Thu Aug 15, 2013 10:48 am

I am also very surprised by Dr Shepherd's reply.

I recently had blood tests that showed that I have magnesium, selenium, CoQ10, Vitamin B3 deficiency & very poor mitochondrial function. Up until this point (22 years as an M.E sufferer) the only treatment I have been offered is CBT (which is useless as a treatment for a physiological illness).

At least now I have a clear plan of action: magnesium injections & supplements to rebalance the above deficiencies as well as dietary changes to improve absorption. I feel heart sorry that there are many out there who have worse symptoms than myself & are in no position to afford these tests or treatments.
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Re: What supplements can help?

Postby Dr Charles Shepherd on Thu Aug 15, 2013 2:24 pm

I stand by my statements that there is no sound scientific evidence to demonstrate significant deficiencies of vitamins or minerals in ME/CFS (possible exceptions being, as already noted, carnitine, folic acid and EPA and the increased risk of vitamin D deficiency)

There is therefore normally no reason for people with ME/CFS to take expensive vitamins and supplements.

I am aware of the Lancet paper relating to magnesium deficiency (it is summarised in the MEA purple booklet) but this research has not been confirmed/validated and magnesium supplementation is now considered to be of no sound value

As someone who has ME, and obviously wants an effective form of treatment, I would be checking my levels and taking these products if I believed there was any evidence of efficacy. But it's just not there...
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Re: What supplements can help?

Postby Mimetic442 on Thu Aug 15, 2013 2:56 pm

Thank you for your responses to these questions Dr Shepherd.
Your energy, time & efforts are very much appreciated.

It makes such a difference to get advice from a medical professional who has the same condition & can see it from the patient's perspective. To use a popular phrase of the moment, we really are in this together!

Kind regards,

David
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Re: What supplements can help?

Postby Marie-Caroline on Thu Aug 15, 2013 7:18 pm

I have been taking magnesium with vitamin B for many years now, well before I was diagnosed with fibromyalgia, and it was actually recommended by the doctor I had in France. I do notice when I don't take it after a short while that I experience more pain in my muscles and it also affects my sleep. I would recommend discussing it with you GP anyway, and not all things are proven scientifically as there are no proper research done (lack of money and lack of interest). However, there are some papers that do support the use of magnesium as a supplement for muscular pain, even for hyper activity. The important thing, as for everything, is not to overdo it and take "everything and anything".
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Re: What supplements can help?

Postby Sue Luscombe on Thu Aug 15, 2013 7:41 pm

[quote="Dr Charles Shepherd"]I stand by my statements that there is no sound scientific evidence to demonstrate significant deficiencies of vitamins or minerals in ME/CFS
There is therefore normally no reason for people with ME/CFS to take expensive vitamins and supplements.

Thank you Dr Shepherd. I agree and completely endorse all your comments on Vitamin and Mineral supplementation. There is not the good quality research to support routinely recommending vitamin and mineral supplements for those with CFS/ME. I do also agree about what you have said about Vitamin D.
To understand vitamins and mineral in our diet additionally I would recommend websites such as NHS Choices and the British Dietetic Association.
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Re: What supplements can help?

Postby Valentijn on Fri Aug 16, 2013 1:01 pm

Since magnesium isn't recommended, is there something else that might help with my muscle twitches, spasms, cramps, and constipation? I have been taking it for two years and it seems to make a huge difference for those symptoms unless I stop taking the magnesium.

Is there something better researched which I should be taking instead?
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