A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Posted February 1st, 2013 by

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below.

PatientsLikeMe member DarkAuburn with her son

1. Tell us a little about the PatientsLikeMe fibromyalgia community.

I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find.

2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients?

It’s staggering. I didn’t know much about fibromyalgia before I was diagnosed. I can’t say I’m an expert now either. But the information has helped me better communicate with my doctor.

3. As a wife, mother and grandmother, how has fibromyalgia affected your family?

People ask my husband all the time how I am doing. He will tell them that I have good days and bad days, and we have learned to take each day as it comes. When I told my children, they were concerned. My daughter is a research junkie, and she looked it up and explained to her brother what I have. His response was, “That explains a lot.” Since I don’t get to see my children and grandchildren on a daily basis, I just deal with fibromyalgia and play with my grandchildren.

4.  What’s the most important thing you’ve learned from other patients?

I have learned that I am not alone in this.


6 Comments

  1. has anyone seen the new drug being tested for cfs and fibro?

  2. No, I have not. Always ready to learn of a possible treatment that may improve on what I have tried.

  3. Glad there is this group!!

  4. I have Fibro , bad disc .Art , I am on heavy meds which I hate . They never get rid of all the pain .Having bad headaches and neck aches .Then days it is all over . Sometimes legs ,shoulder etc. I am not one to complain but if it helps find a cure I am all for it.These cold days makes it worse .I pray God would heal everyone of us .

  5. I have multiple health issues, several are auto immunes, along with the usual age related OA/OP. Very drug sensitive. Docs don’t take the time to read reaction list before they write scripts. Nor do I want Narcotics to control pain that are not only ADDICTIVE, but side effect riddled. FMS, OA, OP, are painful enough to deal with, with out adding drug addiction or reactions to meds. Give me the tools that work for me, not a narcotic to addict me or a drug to create worse brain fog than FMS does. For me those tools are Toredol 10 mg at night, reduces the pain, and inflammation, it is a NSAID and not addictive and the pain control carries over into the next day for several hours, more than likely it is the reduction in inflammation, no side effects in the 3 months I’ve been on it. I’ve had FMS nearly 25, been on every latest new drug, that have lots of bad side effects. What works best for me is Valium 10 mg twice daily has no side effects, is NOT addictive at that level. But that Lyrica at 50mg has HORRIBLE side effects 1 pill and I returned it to the pharmacy to recycle with their outdated drugs in a safe bio hazard way, you do not flush them down the toilet or put them in the trash. Same as I did for the replacement of Lore Tabs, NARCO 1 pill, does not work well, lots of side effects, for 3 days. , I can not ‘get use to’, restricts my quality of life, addictive too. Has been RETURNED, and placed on bad side effect list.

    One of the problems I run into is doctors who do not have open minds. Nor cross check what they write scripts for with other health issues. Some of those drugs are not compatible for Thyroid patients. No one knows your body better than you. Why do you label the drug I do best on high’ liver damage’, when nearly every drug on the market including OTC ones have that same warning as will as Kidneys. Why do you want to force expensive high side effect riddled drugs on me, mind fogging ones, addictive stuff like Xanax, which is now on my Bad side effect list. When older ones work better!

    Then there is that STUPID FDA Bad Drug Hot Line. Well it is a worthless number, there is NO HUMAN to talk to, just some stupid form to down load and send in and you never hear from them again. Got news for government NOT all seniors have computer skills or own computers. PUT in HUMAN BEINGS to answer calls. Next gripe, when a doctor writes a script there should be full disclosure of side effects, as well as how successful the drug is. Not how wonderful the Drug Co Rep says it is. And doctors DO NOT REPORT SIDE EFFECTS! They just switch meds to find 1 you tolerate better. FDA is NOT LISTENING to Patients, who are effected by these horrible side effect drugs, they just keep expanding the usages for them. Some palm greasing is going on.

  6. Narco clearly states it is not to be given to patients with Thyroid problems. If the PCP had done his home work, he would have found that out. It is also may cause liver damage. It is not the patients responsibility to look up the drugs and cross check them. It is the doctors who write the scripts.

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