Monday May 21, 2012
A lot of us with fibromyalgia and chronic fatigue syndrome turn to the Internet for not just information, but for support and friendship. However, when you're discussing your health online, it pays to think about protecting your privacy.
The main thing to remember is this: EVERYTHING you say in public online forum, whether it's a blog comment or on a Facebook page, is indexed by search engines. That means when you (or anyone else) Googles your name, it'll all come up.
Over the past few years, I've gotten several requests to remove comments - usually by people who didn't realize that anyone at all could see them. That includes your soon-to-be-ex spouse, your boss or prospective employer, and anyone else who could have a reason to do a search for you. These days, you have to assume that people and companies will make those searches and use what you've said against you.
Here on this page, it's easy to get around that - just don't use your full name. A first name, initials, or an alias will keep your comments from being connected to you.
On a Facebook page, it's a little harder. Any comment you make there is automatically linked to your account and therefore your name. If you're concerned about privacy and still want to participate, you might want to consider creating a separate account for that under a different name. (This is only for pages that you officially "like" and comment on, not for personal accounts.)
Have you learned this lesson the hard way? What happened? How do you protect yourself now? Leave your (anonymous) comments below!
Learn more or join the conversation!
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Saturday May 19, 2012
One of the classes of drugs frequently prescribed for fibromyalgia is anti-epileptic drugs. The first drug approved for this condition, Lyrica (pregabalin), was from this class.
Anti-epileptics work well for a lot of us, but, like all drugs, they come with possible side effects and other risks. To learn more about the dangers and benefits of these medications, see:
Have you taken meds from this class? How did they work for you? Leave your comments below!
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Friday May 18, 2012
It's a question I get all the time - why isn't fibromyalgia classified as an autoimmune disease when the immune system is clearly involved?
Yes, we do have evidence for immune dysregulation in many cases of this illness, but that doesn't mean it's autoimmune. To understand why immune-system involvement isn't the same as autoimmunity, you have to understand what each term means as well as what is (and isn't) known to be part of fibromyalgia.
You can find the answer to this question here: Why Isn't Fibromyalgia an Autoimmune Disease?
You will come across some healthcare workers who inaccurately lump fibromyalgia in with autoimmune conditions. Watch out for them - they'll recommend treatments that generally don't work for us (anti-inflammatories) and may actually make us worse (steroids, immune suppressants.)
Have you been given inappropriate treatments or bad advice based on this misconception? Leave your comments below!
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Wednesday May 16, 2012
What you eat - or don't - can have a big impact on your fibromyalgia or chronic fatigue syndrome symptoms.
There's no single diet that works for all of us - our symptoms and dysfunctions are too varied for that - but some things are more likely to help us than others. Sometimes simple dietary tweaks work, while other times it takes major changes. We just have to figure out what works for each of us.
A recent Readers Respond comment demonstrates just how effective dietary changes can be:
"Per recommendations from this article, I eliminated sugar, alcohol chocolate and cut back on caffeine 2 weeks ago. I noticed less pain and good mood. The following week I added the gluten-free recommendation to the experiment. I feel I've been given a new lease on life, achiness almost totally gone, sustained energy levels and great mood. To keep sustained energy levels I need to be mindful of including a protein with each meal. As a vegetarian now leaning towards veganism I find gluten-free somewhat challenging but so worth the effort! I feel like a new person. It appears I am gluten sensitive, per a lifetime of symptoms. Grateful gluten is one of the recommended items for the Fibromyalgia elimination diet, otherwise I'd still be in pain. (As a side bonus, my girlfriend, also doing the diet, has found similar results including adult acne is clearing up!)" ~Dimples
I know I feel better when I eat more fruits and vegetables and less sugar and processed foods. I've written a lot about being gluten intolerant, but oddly enough, that sensitivity now appears to be gone.
If you haven't experimented with your diet, it could be something to try. These articles can help you get started:
What dietary changes have you tried? Did they help? Leave your comments below!
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