Old 04-15-2016, 12:20 PM #1 (permalink)
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Default Sources for information and news about fibromyalgia

I wanted to let you all know that Dr. Ginevra Liptan now has a blog (she is the doctor who has fibromyalgia herself; she wrote "Figuring Out Fibromyalgia" and "The Fibro Manual"). Some of her first posts are about low dose naltrexene and medical Marijuana. If you want to check it out you can Google "ginevra fibromyalgia blog". I'll try to spell out the link below

Drliptan dot com

I also found a fibromyalgia information /news site that is run by a journalist. If yyou search "fed up with fatigue" it should come up near the top.
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Old 04-15-2016, 04:24 PM #2 (permalink)
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Facinating DK...i have read about LDN before but like she says doctors are reluctant to prescribe and here you would have to persuade a doctor to do it off label and pay privately for the drug which is only made in a pharmacy in Scotland I think.

This so needs more publicising and doctors to inform themselves.

I recently discovered we have a marijuana based spray she mentions in UK but not licensed for fibro only MS.

My pain is getting to the point i think i would try anything although in truth i find these drugs pretty scary and fear side affects like impact on mental health as mine is pretty fragile.
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Old 04-15-2016, 05:43 PM #3 (permalink)
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Default Re: Sources for information and news about fibromyalgia

I hear you there, willow. Sometimes I wonder if I would be better off to try a different medication, but the prospect of side effects makes me think better of it. I have added hemp hearts to my diet. Legal, tasty and no side effects
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Old 04-15-2016, 07:57 PM #4 (permalink)
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Default Re: Sources for information and news about fibromyalgia

I was actually looking for a site like that one, I will give it a look because I really need to know a lot more about Fibromyalgia in general, thanks for sharing such important information.
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Old 04-16-2016, 02:52 AM #5 (permalink)
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I looked at hemp hearts DK as i have never heard of them...not to put you off but i did see high level of omega 6 can cause inflammation and other issues and has to be balanced with the amount of omega 3 intake.

Apparently many people already get to much hidden omega 6 from vegetable oils and there is a lot in hemp shells.

I know you do a lot of research and am sure you have the balance right. Hope you don't mind me saying but i was thinking about getting some hemp shells to try and stumbled across this info.

I tend to use a flaxseed and goji berry mix but quite frankly before fibro i knew none of this and just ate what i thought was a pretty healthy diet and didn't analyse foods in detail.

Aside from that i take a cod liver oil and evening primrose oil capsule most days which is high in omega 3 too.

Sorry a bit off topic again...my mind runs away sometimes!

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Old 04-16-2016, 03:33 AM #6 (permalink)
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Default Re: Sources for information and news about fibromyalgia

That is a good point willow. And of course I don't mind that you write what's on your mind
I always enjoy reading your posts!

The recommended ratio of omega 6 to omega 3 is between 4:1 and 1:4. Hemp hearts come in at the low-ish end of the recommended range with a ratio of 2.5:1.

When I take the rest of my diet into account I feel comfortable eating them. Plus I have noticed that I do feel a bit better when I include them.
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Old 04-16-2016, 03:39 AM #7 (permalink)
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HA Ha i knew of all people you would have done your research! Made me smile.

Yes i enjoy your posts too. You give great advice and know your stuff!!! and are full of understanding and compassion too.
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Old 04-16-2016, 03:45 PM #8 (permalink)
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Default Re: Sources for information and news about fibromyalgia

Utter felicitations for this lead. There are endless sources of information on fibromyalgia. Sifting through the massive database of information on fibro is where the real challenge lies. I wanted to start a blog on fibromyalgia but found what is available on the net is about enough and groundbreaking information can only only be sourced from a specialist.
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Old 04-17-2016, 01:22 AM #9 (permalink)
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Thank you, willow. I have to say you give good advice too. And you offer such compassionate understanding to everyone. You are a real gem
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Old 04-17-2016, 01:32 PM #10 (permalink)
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I love you both! I always read y'alls post, both compasion and knollege.
I too read about this therapy. Asked my pcp back in Feb. about it and he raised his eyebrow at me at first and questioned me then told me to ask my ruemotologist. When I went to my reumotolgist she opted to tender point me first leaving me barely able to talk. I'm glad you brought this one back into light for me. Next will be to find a doctor to consider it.
Also, thanks for the info on omega 6. Years ago a naturopath put me O3 and warned me no O6, now I know why!!!
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Old 04-17-2016, 10:12 PM #11 (permalink)
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Wow... this is the first time I hear about a doctor who admit she herself has fibro, and is actually trying to do something to help others in the same situation. I will check her out, I hope she has something to say about things like the migraines and horrible IBS flare ups...
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