People in UK-With CFS

Discussion in 'Fibromyalgia Main Forum' started by Charleneyz1984, Sep 22, 2005.

  1. Charleneyz1984

    Charleneyz1984 New Member


    I really need some advice,

    Have you tried any supplements ar anything at all diet or suchlike that has helped with the cfs i want to try things but have no idea where to start!

    Please Please give me sum advice!

  2. smiffy79

    smiffy79 New Member

    im in uk,east anglia.
    i was using chelated magnesium until nuero told me to get off it as could be dangerous as i wasnt tested to see if i was actaully lacking, thats your first look out right there.

    what ever supplement you think of trying please dont do with out talking to your gp as it could cause more complications or not be compatable with your prescribed meds.

    i am trialing tizanidine a ms drug as some of me symptoms parallel ms in the same way as fm gets misdiagnosed arthritis.
    i am also on amitriptyline 50mg at night to get me to sleep.

    i also have fms,raynauds and so on.

    i do however watch very carefully what i eat and pile down the fruit and veg cutting out aspartame,tartazine and as many e numbers as i can.

  3. deliarose

    deliarose New Member

    cycle. But I can tell you that I have seen some benefits from the right sleeping medications and also VegEPa.. which is a specially formulated combination of Evening Primrose and EPA or fish oil. Available from a company in Cambridge. I can't post their website.. but you could google the name and get it that way.

    A top CFS specialist here in the US where I now live also recently put me on Enada/NADH 10 mg a day and 1cc of injectable Vit B12 every other day.

    Too early to evaluate their benefits, but like Smiffy I have also cleaned up my diet, and pace myself (I'm a freelance writer) and that's made a huge difference.

  4. deliarose

    deliarose New Member

    Another thought. There is a ton of stuff on here about people's experiences with supplements. You just have to wade through it, and, under the supervision of a doctor or naturopath, experiment.

    One thing I have learned after 10 years though is that you have to be consistent and try things out for a while. For example, my doc says u only see the benefits of Enada after 6 months.

    Otherwise, you're wasting time and throwing money down the drain. Having said that, I believe I saw the benefits of the VegEPA supplements in 6 weeks..

    BTW, a doctor at the Hammersmith Hsptl in London was the guy who turned me onto that. His name is Professor Basant K. Puri and he has a book on the subject.

    Also, u might want to do a search on this site under Dr. Sarah Myhill (sp?) who is a well-known UK doc specialising in CFS.

    Good luck
  5. Rosiebud

    Rosiebud New Member

    I take the following:

    B5 - Pantothenic Acid
    Evening Primrose
    Cod Liver Oil
    Flaxeed Oil
    Garlic capsules
    a good Multivitamin
    ZMA - from this shop

    and Echinacea tincture with water - you have to have a break in between taking this so I just take it every few months and am taking it now to prepare me for winter. I uesed to take C and complex B and think I will start those again.

    I havent had any bad effects from the supplements - they dont work miracles but I think they do me some good.

    Like Smiffy I try to watch my diet, lots of fruit, veg, no sugar, low fat milk, organic when I can afford it. When I'm having a flare though I find this impossible.

    [This Message was Edited on 09/22/2005]
    [This Message was Edited on 09/22/2005]
  6. tansy

    tansy New Member

    and yes I use supps and alternatives, without them I am a lot worse.

    I think Smiffy's neuro was OTT on the risks of taking Mg, many of us do well on it. My red blood cell Mg levels were low whenever I was tested so at least I knew low Mg levels applied to me. When PWME are tested there are usually found to be low in a lot of essential nutrients.

    Ken Lassesen has set up a web site for CFIDS/CFS and has devised a protocol which he calls FWIW - for what it's worth. This seems to be working well for a lot of PWME and CFS and it's a good place to start.

    I take high doses of fish oil. Evening Primrose Oil made matters worse for me; I benefit from the DHA in fish oil which Prof Puri's formulation avoids.

    The best place to start of course is a really healthy diet. Diet is often discussed here and whilst the ones we each find help differ they have major overlaps too.

    Most of us find the information on what might help us overwhelming, what works for one may not work for another, hence my recommendation to check out Ken's site.

    Love, Tansy

    [This Message was Edited on 09/22/2005]
  7. fibro-nut

    fibro-nut New Member

    Hi There,
    Iv'e hated trying loads of medication, to the point that i stopped them all. Nothing ever worked. So now the only prescription i have is amitryptaline 25mg thats to help reduce some of the cramping. Personaly i sware by Q10, it helps for energy, multi vitamin B.Which also helps with cramping and energy, last but not least i take ginko biloba for the fibro fog. I asked my neurologist if this medication was ok to take, and he was all for it. It's worked for me. Life is much more bearable. I have gone from being a blond bimbo to running my own small buisness. Of course i get re-lapses every now & then. But at least i can find my car now after iv'e parked it. And my re-lapses don't last so long. Another benefit is the fact that the medication is so much cheaper, than on prescription. Just remember they take time to get into the system. But do ask your doctor if these would suit you, before considering these drugs.Also remember that what works for one may not work for another, but i do hope you find something that will suit you soon. Best of luck mate. From a fibro-nut.
  8. deliarose

    deliarose New Member

    Yeah, I've read that article and it was interesting.. I need to re-read it though, because I think she is saying something slightly different from Paul Cheney on the subject.. and I need to understand the nuances.

    Very interested to hear you had some lab work (?) done relating to the Krebbs cycle. Can you share? What were the tests? Did yr PCP do them or did you do them thru a specialised lab somewhere?


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