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A support group pushing experimental medication

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Fibromyalgia
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Posted 9/16/2010 7:37 PM (GMT 0)
I found a message for people that suffer with fibro and cfs a few months ago. At first it was nice. But soon I was encouraged to try this medication that is not approved for fibro. Then there were negative articles posted about medications that treat mental illness. And just today the sight was encouraging people to drink cough medicine shocked

I asked for my account to be deleted.

Here you get support and not critcized for taking medication for pain. One person on the messge board said that if lyrica or cymbalta helped you then you don't have fibro. shocked

I'm glad that here you can relax and get support without being judged.
Posted 9/16/2010 7:41 PM (GMT 0)
Sheila, that board is playing with fire!  Some people might believe all of that and end up sick or overdosed or worse!

 

We say, over and over again, that what works for one doesn't necessarily work for another.  That's why you see so many of us taking very different things.  We do have to search to find what helps control OUR pain.

 

I'm glad you like it here and are hanging out with us.  We do have a great group, don't we!

 

Sherrine

Posted 9/16/2010 7:41 PM (GMT 0)
Well, whatever place that was, they sure didn't have their information or facts straight. That scares me, because others who are on that board are also "learning" the same thing and they need to be educated.

I hope more people find us here...it seems to be the definitive information source.
Posted 9/16/2010 8:08 PM (GMT 0)
There are people that drink cough syrup for fibromyalgia because it has pseudoephedrine, dextramathoraphan (sp) and guaifenison in some of it. A lot of people did that about seven or eight years ago. That was before cymbalta, lyrica and Savella. But the guaifenison makes your muscles feel good. That you can get by taking musinex. The pseudoephedrine gives you energy and I don't know what the other does for fibromites. But that is propbably why they are pushing the cough syrup.

And like was mentioned above, what works for one doesn't always work for another, especially with fibromyalgia. Sometimes it seems like nothing works.

I hope that you feel better soon.

Hugs, Karen
Posted 9/16/2010 11:08 PM (GMT 0)
wow, I would really be in trouble if cough medicine became our miracle drug because every time I take cough medicine I end up with pneumonia. Guess I will stick with my fibro. lol
Gentle Hugs
Shirley
Posted 9/17/2010 12:30 AM (GMT 0)
OMG, shocked What the heck are these people thinking.  They give good forums like ours a bad name. I registered on this site and another on the same day. I've still never heard from anyone on the other site, whereas here I already feel like I've found a great group of friends that understand me.  Cough syrup?? Yuck!

Stay positive,

Deb wink

Posted 9/17/2010 12:40 AM (GMT 0)
I just found an email that was sent to me regarding "transfer factor". It was from a gal named Miranda Hebert.  Some type of supplement that's suppose to help with Fibro. Sheila, is that the one you are talking about? It was from a website called 4life. I've never heard of it before. I'm always skeptical about stuff like that.
Deb
Posted 9/17/2010 2:15 AM (GMT 0)
I got the same email yesterday but it was about hepatitis C soooo I guess this transfer factor ids a miracle drug
Posted 9/17/2010 2:22 AM (GMT 0)
Thanks Denise, that's what I figured.
Deb
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