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.

At the National Fibromyalgia & Chronic Pain Association, this year’s Fibromyalgia Awareness Day is themed CURE FM (Campaign for Understanding, Research & Education of Fibromyalgia), and many of our members are working to do just that.

Beginning as early as January, our fibromyalgia members have worked together to order t-shirts, send letters to TV shows and spread the word about fibromyalgia through their online social networks.

So what’s fibromyalgia really like? The best way to find out is from patients directly. Since we opened our doors to fibromyalgia patients in November 2008, we’ve had 13,826 fibromyalgia patients join our community and share their real-world experiences with this chronic pain disorder, which is characterized by pain or aching in the muscles as well as multiple points of tenderness.

Among other things, patients with fibromyalgia have reported that:

• The most prevalent symptoms include pain, fatigue and memory problems
• The most widely used prescription drugs are Duloxetine (Cymbalta), Pregabalin (Lyrica), Tramadol (Ultram), Gabapentin and Cyclobenzaprine (Flexeril)
• The most common lifestyle modifications are rest, physical activity and exercise as tolerated and hot showers

They also share practical tips for living with this debilitating condition in our forum every day. Some of the most popular topics in the fibromyalgia forum room include sleep issues, pain, research, coping and support.

Here are some recent forum comments about the disease’s effects:

• “Sometimes I wonder who I am. It is like all the pain and problems define me. The pain controls my life.” -Fibromyalgia patient, age 50
• “Being sick has permeated so much of my life that it comes up in almost every conversation I have.” -Fibromyalgia patient, age 33

To learn more about living with fibromyalgia, you can also explore individual patient profiles to see what people are saying about their symptoms, treatments and quality of life.  Get to know one of our fibromyalgia patients today.