What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March 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

Flare.  Exacerbation.  Attack.  Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however.  This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more.  Just check out all the threads tagged with either “flares” or “relapses” across the forum.

How do you get through an attack?  In a recent discussion in the MS forum, suggestions included lots of rest, watching movies, a pinch of good humor, letting go of guilt, accepting help, pacing yourself, having easy-to-prepare food on hand, talking to your doctor and trusting that “this too shall pass.”

And in the FM forum, one patient has shared her unique trick: a “bad day box” full of uplifting items.

Got your own coping techniques?  The forum is all ears.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of the recent threads about flare-ups below.  Then jump in with your own questions and answers.

• The link between flares and weather changes (FM/CFS/ME Room)
• Off meds for surgery – will I have an RA flare-up? (Immune Room)
• Having a major flare today and can’t leave work (FM/CFS/ME Room)
• MS, pregnancy and the possibility of relapse (PatientsLikeMe Room)
• I’m newly diagnosed.  How long can a FM flare last? (FM/CFS/ME Room)

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

LABS, LABS AND MORE LABS

Things have gotten a lot more lab-tastic at PatientsLikeMe. Thanks to your requests and suggestions, we now offer some 200+ labs to help you monitor your health conditions.  Here’s a sampling of some of the new labs and tests you can add to your profile:

• Vitamin B12
• Total Testosterone
• Breast Cancer Gene 1 & 2
• Prostate-Specific Antigen (PSA)
• Lipoprotein Insulin Resistance (LP-IR)
• Bone Mineral Density Test (T-score & Z-score)
• Levetiracetam Blood Levels
• Hand Grip Strength Test
• JC Virus Antibody

Wondering about another lab?  Search for it here.

With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another.  Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).

Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.

DID YOU KNOW…

• Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
• Approximately 31% (or 27,013) of patient members across all communities experience depression.

How are you treating your condition?

• You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
• One of the top lifestyle modifications reported by our members is heat avoidance; and physical exercise is the #1 exercise cited.
• The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta).
• The top 3 supplements reported by all patients are Vitamin D, Omega 3 Fish Oil and Multivitamins.

What are your major symptoms?

• The 5 most common primary symptoms reported include fatigue, anxious mood, depressed mood, pain and brain fog.

What are you talking about?

• Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.

A special thank you to all of our members for continuing to share your data and experiences to help others just like you.