In an ongoing effort to raise awareness, the Rheumatoid Patient Foundation (RPF) has now established February 2nd as Rheumatoid Awareness Day. This is the first time ever that a day has been designated for rheumatoid disease and it will give a voice to the millions who are living with this condition.

Rheumatoid disease (also known as rheumatoid arthritis) affects nearly 2 million people in the U.S. and one percent of people worldwide. It’s a progressive inflammatory disease causing joint and organ damage that can lead to severe pain and joint disabilities. Studies have also shown that rheumatoid disease has an impact on the heart causing higher incidence of stroke for patients.

Want to get involved? The RPF is hosting several social media events and is asking everyone to share educational materials via social sites and blogs to raise awareness.

You can also connect with other rheumatoid arthritis (RA) patients just like you on PatientsLikeMe. Nearly 5,000 RA patients are tracking their health and learning from each other’s shared experiences every day. Add your voice to this growing community.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Burning. Stabbing. Aching. Throbbing. Dull. Have you used any of these words to describe pain?  Highly subjective to each individual, pain is a sensory experience triggered by the nervous system.  Some of the different types include nerve pain (neuralgia), muscle and joint point and arthritis pain.

If you’re living with chronic pain, it may feel like no one understands.  But pain is actually one of the top symptoms reported at PatientsLikeMe, affecting more than 40,000 of you and playing a role in so many different conditions, from fibromyalgia to rheumatoid arthritis to lupus. Over half of you rate your pain as “moderate” or “severe.”

How are fellow patients managing this “invisible” symptom?  Check out the pain symptom report as well as the hundreds of treatment evaluations for opioid painkillers such as Tramadol (Ultram) and Hydrocodone; anti-convulsant medications such as Gabapentin (Neurontin) and Pregabalin (Lyrica); and complementary therapies like acupuncture and massage. You can also join in on our forum discussions about pain for tips and advice.

Pain can make you feel alone – but you’re not.  Connect with thousands of others who can relate and share experiences.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Digestive and Intestinal Room, the Muscles, Bones and Joints Room or the Neurological and Brain Room?  Find your favorite room(s) and check out some of these active threads below.

• Shifting from “I can’t” to “I can” (FM/CFS/ME Room)
• Can a strict schedule stabilize you? (Mental Health Room)
• When one spouse becomes a recluse (Parkinson’s Room)
• Dealing with diabetic neuropathy (Diabetes Type 2 Room)
• When to tell a potential mate you have MS (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from longtime members.

WHAT MEN HAVE TO SAY

Last week was Men’s Health Week.  To honor the men in our community, we’ve spotlighted a few thought-provoking quotes by our male members.

“Along comes PD and life changes. Now, I get all anxious about having to be ‘on’ at parties and functions. But, I go to everything! My default answer is now yes instead of no because frankly it’s too much trouble to back out of everything I say yes to. I always enjoy myself and am glad I went. I push myself while I can and it seems to help. It is work, but it is worth it because it not only rewards me, more importantly, it rewards my wife.”

– Parkinson’s Pete, PD patient, 61 years old

“After a few days spent lazing about, I feel ashamed. I can look at this rationally and consider that in my current circumstances even surviving the day is an achievement but a lingering resentment at my inaction remains present nevertheless. I’m 50 years old, I’ve been unemployed for three months in my life, I’m now facing retirement and wondering whether I will be able to shake off this sense of negative self-perception.”

– Tommy Maker, ALS patient, 50 years old

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:

• Join a Walk to CURE FM event (Logan, UT, or Philadelphia, PA).
• Sign the “Pledge to Care” as a caregiver, friend or provider.
• Sponsor a “Light of Hope” candle in honor of a loved one with FM.
• Add your photo to the NFMCPA’s Faces of Courage Wall.
• Sign this Change.org petition started by a PatientsLikeMe member.

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.

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.