12 posts from May, 2012

Fibromyalgia Awareness Day Is This Saturday

Posted May 10th, 2012 by

What Are You Doing for Fibromyalgia Awareness Day?

Sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA), Fibromyalgia Awareness Day (Saturday, May 12th) is an annual event dedicated to raising awareness of this complex chronic pain disorder.   Fibromyalgia (FM) affects an estimated 10 million people in the US, 75-90 percent of whom are women—but it can also occur in men and children.

The 2012 theme for Fibromyalgia Awareness Day is “Make Fibromyalgia Visible.”  There are several ways you can help do this:

You can also take a moment to brush up on this often-misunderstood condition, which is characterized by pain or aching in the muscles (myalgia) and multiple points of tenderness (trigger points).  With more than 23,000 patients, the fibromyalgia community at PatientsLikeMe is a great place to gain knowledge.  Some of the most commonly reported symptoms in our community include muscle and joint pain, brain fog, pain in the lower back and balance problems.

Fibromyalgia Awareness - Symptoms Commonly Reported by PatientsLikeMe Members with Fibromyalgia

What are our members doing to cope?  Commonly reported treatments include selective serotonin and norepinephrine reuptake inhibitors (SSNRIs) such as Duloxetine (Cymbalta) and Venlafaxine (Effexor); analgesic and anti-convulsant medications such as Pregabalin (Lyrica) and Gabapentin (Neurontin); and muscle relaxants such as Cyclobenzaprine (Flexeril) and Carisoprodol (Soma).  Click on each treatment name to see how patients evaluate the effectiveness, side effects, cost and more.

For more insight into living with the “constant, widespread pain” of fibromyalgia, check out this video made by a recently diagnosed patient. And if you’re a PatientsLikeMe member, don’t miss the forum tag Life with Fibromyalgia.

Spotlighted Blogger: Meet Jessica of “Jessica and Psoriasis”

Posted May 8th, 2012 by

Psoriasis Blogger Jessica Gough of "Jessica and Psoriasis"

Welcome to the latest installment of our “Spotlighted Blogger” series.  This spring we are focusing on psoriasis patient bloggers, starting with Lissa back in March and Alisha B. a few weeks ago.

Today, we’d like to introduce you to Jessica Gough, a 19-year-old from the UK who recently started a blog called Jessica and Psoriasis.  What kind of reaction has she gotten?  And what tips does she have for those who feel isolated due to this chronic skin condition, which can cause itching, rashes and plaques (scaly patches)?  Check out our interview below.

1.  How are you feeling about being a newly minted “psoriasis blogger”?

The best word to describe how I feel about being a psoriasis blogger is relieved. I chose relieved because there is so much I have experienced throughout my psoriasis journey – both positives and negatives – that I wanted to talk about that even my closest friends and family were unaware of.  By writing my blog I have been able to explain all of my experiences without having to face the challenges of approaching the subject in general conversation. I have also found that by using my blog to share my journey with psoriasis it has enabled me to talk and share information with other psoriasis sufferers, which I have found warming and comforting.  Since starting my blog the support and feedback I have received has been overwhelming.

2.  Tell us how psoriasis affects your daily decisions – from shaving to clothing.

I believe with psoriasis you choose how much you let it affect your daily life and decisions. For me I would say my psoriasis majorly affects my decisions based upon the way I present myself for the day. If I wake up and skin has flared up or has worsened, I find I have to choose the right kind of clothes. I tend to wear leggings most of the time as the material doesn’t rub my skin and they are cool in comparison to jeans for example. Also if I want to wear a jumper I make sure I have a top protecting my skin underneath so my skin doesn’t become itchy.

Jessica's Arms During a Psoriasis Flare-up

Dependant upon the look of my skin also affects decisions such as whether I can wear makeup or whether I can shave my legs in the shower. If my skin is red and flaky I try as much as possible not to touch it with products that could make it worse. This includes shaving my legs, although if I am going out to a nightclub or party, though, I will plan in advance in order to make sure I can shave my legs, and I will use moisturizers to make my face suitable for makeup. Other than clothes and personal care, I try to make sure my psoriasis does not affect my decisions.  However, sometimes with a flare-up my mood can be worsened, and I tend to find things harder to cope with generally.

3.  What is your personal recipe for getting through a psoriasis flare-up?

My personal recipe probably has to be not to give up. When you have a flare-up, it is a perfect opportunity to put tips and techniques to the test, ask other people what they would recommend or go back to your consultant and ask for help. I do usually have a routine of making sure I have a bath every night to relax and then covering myself in moisturizers and creams before bed to help me sleep better. I also wear socks and gloves depending how bad my skin is to stop me itching and making my skin bleed. I find the more I itch, the more distressed I become, which obviously worsens the flare-up. So I try to stop it from becoming a cycle.

4.  Any advice for someone who feels alone or isolated due to psoriasis?

I think feeling alone is a common feeling amongst psoriasis sufferers, and I certainly felt alone before writing my blog. My advice would be to talk to other people, find out about chat boards, blogs and charities relating to psoriasis, and use these resources to share ideas, stories and experiences with others.  You may be surprised at some of the feedback you receive. I used to feel that even though I had support from many people around me, no one ever actually understood what I was really feeling and what I was going through. Talking to other people gave me the freedom to say how I really felt and not be embarrassed. I personally believe that talking with others about living with my psoriasis has been part of my therapy.