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Giraffe - February 19

Hi everyone. I've just discovered this site, hoping to get some support for my son who is "diagnosed" with fibromyalgia. I know it is extemely frustrating to be put in this bucket of quasi-diagnosis, and totally understand the desperation to find help where our medical systems fail us. But I am particularly distressed by people on this post who recommend 'miracle cures' you buy online. Please, before you spend your limited dollars, goolge the scam reports such as Kyani scam and Monavie scam. Hard to believe but some people will pose as "cured victims" to promote their snake oil and profit for themselves. Check the ingredients: blueberries and omega 3? think you really need an expensive juice to get these?


Jocelyn - March 4


I agree with you that there are a lot of scams out there, but I don't think the scams will ever end. Our telephones ring with other types of scams everyday, our emails and regular mail are full of scams and products that are failures.

Your advice is very good and I always stay away from expense cure drinks or cure food because, all those things can be made all by yourself.

It is most unfortunate, that people on this and other sites are in so much pain that they are willing to try anything to relieve their pain and they are the best prey for these companies.

The internet is full of source information for helping oneself. Again, even these things will not help everyone. We are all so different.

As a reminder, as said above, please don't be desperate and buy into big money drinks and foods unless your Major Hospitals are testing them. Believe me, Large Hospitals around the United States are testing simple things, like fish oil and flaxseed oil for medical purposes. I have Sjogrens along with Fibro and my eyes have been a nightmare. My doctor in Boston told me to take 1000mg of flaxseed oil twice a day. He said that in clinical trials they have had great results. And believe it or not, my eyes are 80% better after two months on such a simple organic natural oil and that came from a reputable doctor, not a sales pitch online and I didn't have to buy expensive harmful medicine, which I was on before! I was put on plaquenil for my eyes, and my skin was so discolored from the drug and my eyes so sensitive to the light, plus having to see an eye doctor every 6 months because the drug is toxic to the eyes. I take flaxseed oil, it was that simple. So...things are being looked into.

When in doubt, ask your doctor, if he/she doesn't know find another doctor, do some goggling and research and hopefully, you will find something helpful.

Best to all of you and stay well.


piper30 - March 12

I am curious if I may ask why the posts stating a cure haven't been deleted? I imagine it would make some shy away from the site if not informed or educated much on Fibro?


Jocelyn - March 12

Hmmm.....I'm not sure if delete just delete's it from your view or everyone's view. However, you can complain, I think most people how are sick, know that these things are a scam. If they weren't doctors would use them and more people would be saying how great they are.

I prefer to ignore them.


January - March 22

Hi piper30 and Jocelyn. I've been on this site for well over a year - and we didn't have scammers on here very often. Suddenly the site opened up to Facebook, etc. and there were a million scam posts, from the same people over and over.

I know that back when they started, some of us complained to "whoever" runs the website - and some of our regular posters even told the scammers to buzz off. I think most of the regulars on this site are intelligent enough to avoid them. And the problem seems to have lessened somewhat.

I wanted to add that I have dry eyes too - and my new eye doctor told me to take flaxseed oil as well! (I was thrilled to have a doctor suggest something natural - although he did, of course, first offer a prescription drug - which I turned down.) I take a variety of oils, Omega 3s, flaxseed, evening primrose oil - but I rotate them, because if you take too much it can cause your blood to thin out. One capsule in the am, one in the pm. The doctor also told me to run a humidifier to help my eyes. Those can be a pain because you have to clean them a lot. I found that it was just as helpful to keep a bowl of water in my closed bedroom, right by the air outlet.


Jocelyn - March 24

Hi January,

I am so glad to hear that your eye doctor recommended flaxseed oil, too, the alternative medications really doesn't work, however I am not sure what was offered to you, either restasis or plaquinil. It has worked so well for me I can't believe it. I have suffered with Sjogren's along with Fibro and Chronic Fatigue for years. It was so nice to come of the meds and take the Flaxseed Oil. Like you said, you have to be careful how much take because it does thin your blood. The reason Flaxseed helps more than Fish Oil is because it contains 50% more Omega 3's than Fish Oil. I take only Flaxseed Oil, 1000 mg 2xdaily. I feel it has a calming effect too. My eyes are still improving, I am just completing my 3rd month which is usually your maximum improvement time, and I am very happy. I have had a couple of bloody noses, which I believe comes from the dryness of the nose and the flaxseed oil. I run a vaporizer every night during the winter and it does help, but I don't think I need it anymore since taking the flaxseed oil. I had a bad reaction to Restasis and Plaquinil. I'm glad I don't use any of them anymore.


January - March 24

Hi Jocelyn - I was offered Restasis. It comes with nasty side effects, I checked on that first!! I was very sick for 5-6 years, and I am sure it was due to many different drug side effects and interactions. None of the doctors picked up on this - they just wanted to add MORE drugs! (And the sicker I got, the more they didn't want to see me.) I learned my lesson - I now take as little as possible of the pharmaceutical stuff and a lot of natural supplements. I also went gluten free, and amazingly, I don't get flus and colds like I used to.

I did not know that flaxseed had so much more Omega 3. I take more fish oil right now, but I think I'll decrease that and increase the flaxseed. My eyes feel dry, but it's not too bad. I'm so glad to hear the flaxseed works well - I am definitely going to use more of it! Thank you for the information!



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