1 in 6 women have vaginal pain in their lives. (Photo: hyperscholar)                 .

I lived with vulvodynia for 10 years.

You’ve probably never heard of it, even though it’s so common. Basically chronic vaginal pain, to put it mildly.

I never had interstitial cystitis, but it’s chronic bladder pain. These two kinds of pain tend to run together. We found a strong association between the two, which independent studies published this year also confirm.

Here’s what we found…
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Women at CureTogether who report vulvodynia are eight times more likely to report interstitial cystitis than women with no vulvodynia. This comes from a study of 724 women sharing data online for the past year.

For details on this finding and how it matches up with other studies, read on… Read the rest of this entry »

This is an amazing story. A man who suffered from anxiety for many years has run across the entire country of Canada.

His name is Wayne Cho.

His mission is to raise awareness for anxiety and depression, and eliminate the stigma around these illnesses.

His message is one of inspiration and hope.

Here’s what he wrote to his Facebook followers after the successful completion of his run last week: Read the rest of this entry »

For all of you out there with headaches, this week is National Headache Awareness Week.

Here are some inspiring campaigns going on (and free stuff!) to celebrate everyone living with tension headaches, chronic headaches, migraines, and cluster headaches.

Wishing you a pain-free week!

American Academy of Neurology Foundation

The AANF has two websites to share for its “Buy a Brain” and BrainMatters campaigns:

https://www.TheBrainMatters.org/buyabrain
Buy a virtual brain online for as little as $5 through the American of Neurology Foundation in honor of a friend or family member. Your virtual brain will then float on the AAN Foundation’s wall of donations. Your donation will make a difference in the lives of people affected by a neurologic disorder because 100% of your gift helps fund vital research into tomorrow’s preventions, treatments, and cures for migraine, and hundreds of other neurologic conditions. You’ll also see Grey’s Anatomy recently picked the AAN Foundation as one of its favorite charities.

https://www.TheBrainMatters.org
TheBrainMatters.org is the American Academy of Neurology Foundation’s official website for patients and caregivers.  TheBrainMatters.org was re-launched in late April and features information on more than 250+ neurologic disorders, including migraine as well as some of the other chronic conditions listed on CureTogether’s website.

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National Headache Foundation

The NHF has these links to share for its Migraine Millions campaign and National Headache Awareness Week:

Since 1993, National Headache Awareness Week (NHAW), sponsored by the National Headache Foundation (NHF) aims to educate people about headache causes, impact and available resources. The theme for National Headache Awareness Week is Chart Your Course to Relief. The NHF is launching “Headache U:  It’s all about YOU,” a new patient education program. The first tool of the program features an online headache care tool called “Chart Your Course to Headache Relief: a personal headache care tool” and can be found on our Web site, www.headaches.org. The tool helps sufferers discover their personal headache patterns and the resources necessary to improve their headache care.

The NHF is also encouraging you to support the Migraine Million campaign. We are rallying one million of the nearly 30 million migraine sufferers in the United States to each donate $1 for migraine education and research. The NHF uses 82 cents of every dollar donated to support the programs and services that we provide to improve the lives of headache sufferers. One dollar at a time, we can improve headache care! To find out more, please visit www.headaches.org, call toll-free 1-888-NHF-5552, or visit the NHF on Facebook, Twitter or YouTube.

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Migraine Research Foundation

The MRF has a new initiative called For Our Children, to support pediatric migraine research. Definitely a great cause to support!

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And the Free Stuff!

Who doesn’t love free stuff? Here are some statistics we’ve gathered, all reported by CureTogether migraine members:

Symptoms

Treatments

Triggers

Related Conditions

And the new Migraine Heroes book, first crowdsourced book on migraines. Tell your friends about CureTogether and ask Alexandra for a free copy!

We are excited to announce today the release of “Migraine Heroes: 271 People Share Their Experiences and Treatments.”
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What’s Inside?

271 people share stories, symptoms, and resources
Surprising data on co-morbid conditions
Detailed comments on treatments by real patients
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Please spread the word!

Blog or tweet http://www.curetogether.org/MHeroes/

All proceeds from Migraine Heroes go to fund the migraine data community at CureTogether.org.

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What People Are Saying

“The best Observations of Daily Life (subjective, ‘real-world’) I’ve seen!” — Jen McCabe (@jensmccabe on Twitter)

“Interesting crowdsourced clinical data.” — Chris Hogg (@cwhogg on Twitter)

“The book is excellent! So many people suffer from this debilitating condition. The information in your book is priceless and will undoubtedly help many.” — Annamarie, a migraine sufferer

“This is great. I am just starting to really appreciate what awesome power CureTogether can have.” — CureTogether member

To order your copy, visit http://curetogether.org/MHeroes/

Thank you for your support!

In the live, ongoing Migraine study at CureTogether, 271 people have so far been surveyed for having other, co-morbid conditions. 186 (69%) of the respondents reported having at least one other condition. A chart of conditions co-morbid with migraine is shown below (click on the chart for a larger view). We define a condition to be co-morbid with migraine if more than 5 people reported having both migraine and the condition.

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.Click on the graph above to see a larger version.

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Here is a list of the conditions found to be co-morbid with migraine in this survey, in order of prevalence.

Anxiety (102 people)
Depression (98)
Back pain (85)
Allergies (75)
Insomnia (69)
Common Cold (69)
Irritable Bowel Syndrome (68)
Acne (61)
Vulvodynia (59)
Acid Reflux (55)
Bladder Infection (49)
Endometriosis (47)
Candidiasis (42)
Vulvar Vestibulitis (38)
TMJ Disorder (36)
Cluster Headaches (33)
Chronic Fatigue Syndrome (32)
Restless Legs Syndrome (32)
Fibromyalgia (31)
Infertility (28)
Body Image Distortion (26)
Aging (25)
Eating Disorders (24)
Interstitial Cystitis (24)
Eczema (22)
Anemia (22)
Neuropathy (20)
Hypoglycemia (19)
Asthma (18)
Adrenal Fatigue (18)
Obesity (17)
Anal Fissures (17)
High Cholesterol (16)
Obsessive-compulsive disorder (15)
PTSD (12)
Binge Eating (11)
Alopecia (10)
Nickel Allergy (9)
Insulin resistance (9)
Pelvic Congestion Syndrome (6)

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Note: Information either on CureTogether’s website or presented in these results does not constitute medical advice. Please check with your doctor before making any decisions about your health.
Also, the 271 people with migraine who contributed the data presented here may not be representative of the general population of people with migraine. There may be a selection bias for people who are more likely to participate in online surveys. A larger study would need to be done using alternate methods of gathering information to reach the population of patients who are not online or not inclined to participate in online surveys. However, the results presented here are informative and suggest what a portion of the migraine population is experiencing.

I wrote a post today about how self-tracking can help migraines at the Quantified Self blog. It talks about research showing headache diaries to be effective in predicting and diagnosing migraine, shares a story of a migraineur who tracks herself, and calls for participants to join the CureTogether migraine study. Please read and share with any loved ones who suffer with migraine pain!

Another recent mention of migraine was by Josh Bernoff of Forrester Research at the recent HealthCamp Boston. One of his slides, shown below, suggests that migraine sufferers and people with chronic pain conditions are most likely to benefit from and to participate in online social networks (top right quadrant).

On the one hand, it’s great to see so much increasing attention on migraine and chronic pain conditions. On the other hand, there’s still a long way to go.

What do the 10 most active conditions at CureTogether have in common? As you can see from the chart below, most of them are chronic conditions, and many affect more women than men.* To learn more about what these conditions are, read on below the chart.

Vulvodynia saw a big surge in data around the release of the crowdsourced book, Vulvodynia Heroes, compiled by CureTogether with input from 190 women. This chart also only captures a representative portion of the data recorded by people with these conditions.

So what are these conditions? While they are all common, some of them are not commonly known, so you may not have heard of them. Here’s a quick run-down:

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Vulvodynia

Affects: 16% of women at some point in their lives. That’s 48 million women in the US alone.

What it is: A chronic condition characterized by pain and burning in the vulva without infection or other disease present.  Most commonly reported symptoms are burning, stinging, and/or rawness.  Some women describe the pain as “acid being poured on their skin” or as “constant knife-like pain.”

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Endometriosis

Affects: 5 – 10% of women.

What it is: A condition where tissue similar to the lining of the uterus is found elsewhere in the body. The most common symptom is pelvic pain, which for many women is severe and debilitating. An estimated 30-40% of women with endometriosis may not be able to have children.

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Migraine

Affects: 12 – 28% of people at some point in their lives, women 3 times more affected than men.

What it is: A neurological syndrome involving painful headaches, altered bodily experiences, and nausea. A typical migraine headache is unilateral and pulsating, lasting 4 to 72 hours. Estimated US medical costs for migraine are $1B a year, with lost productivity estimated at $13-17B a year.

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Depression

Affects: 8-12% of people at some point in their lives, women twice as affected as men.

What it is: A condition characterized by a pervasive low mood, low self-esteem, and loss of interest or pleasure in normally enjoyable activities. Depression often co-occurs with other conditions like anxiety, ADHD, pain disorders, and PTSD. It also commonly occurs after childbirth.

Anxiety

Affects: Anxiety disorders affect 16% of people at some point in their lives, women more than men.

What it is: A physiological and psychological state characterized by uneasiness, apprehension, or worry. While anxiety is a normal response to stress, anxiety disorders include panic disorder, OCD, post-traumatic stress disorder, generalized anxiety disorder, and phobias.

Irritable Bowel Syndrome (IBS)

Affects: Up to 20% of the US population, women more affected than men.

What it is: A condition characterized most commonly by cramping, abdominal pain, bloating, constipation, and diarrhea. Most people can control their symptoms with diet, stress management, and prescribed medications. For some people, however, IBS can be disabling.

Vulvar Vestibulitis

Affects: A subset of women who have vulvodynia (see above).

What it is: A chronic condition where pain is felt only in the vestibule, and only during or after contact. Burning sensations are the most common symptom and may be experienced with: sexual intercourse, tampon insertion, gynecologic examination, bicycle riding, or wearing tight pants.

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Insomnia

Affects: 21% of the US population, women 1.4 times more affected than men.

What it is: A symptom of a sleeping disorder characterized by persistent difficulty falling asleep or staying asleep. It is often followed by functional impairment while awake. Insomniacs may be unable to close their eyes or “rest their mind” for more than a few minutes at a time.

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Acid Reflux

Affects: 5-7% of the global population daily, up to 1/3 of Americans.

What it is: A symptom of GERD (Gastroestrophageal Reflux Disease), along with heartburn, that occurs when the lining of the esophagus is exposed to acidic contents from the stomach if the lower esophageal sphincter does not seal off the esophagus from the stomach.

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Back pain

Affects: 80% of the US population at some point in their lives.

What it is: Pain in the back, often the lower back. Back pain is one of the most common reasons people go to the doctor or miss work. It can often be prevented or improved with proper body mechanics, regular exercise, chiropractic care, acupuncture, or massage.

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*The data presented above reflect only the current population of members at CureTogether, which may not be representative of the larger population of global health citizens. It does serve as an interesting snapshot of the direction that CureTogether members are telling us to take in this great, crowdsourced research project.

CureTogether will soon release “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments”. It’s the first crowdsourced health condition book, about a condition that affects 16% of women at some point in their lives.

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The book has already received a lot of positive feedback from patients, doctors, health 2.0 enthusaists, and researchers. Here are some recent blog posts about it:

Dealing with Pain and Dysfunction: Vulvodynia Heroes

ScienceRoll: First crowdsourced health condition book by CureTogether

Servicing the Chassis: almost famous

Biogeekblog: crowdsourcing + patient empowerment

Tweet by Jen McCabe Gorman: “checking out first condition specific ‘experiential’ author project from CureTogether = awesome”

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More information about the book can be found here. Please help spread the word by blogging or tweeting this link: http://www.curetogether.org/VHeroes

Thank you and Happy V-Day!

If you’re like many people, winter can be a sad time. The grey clouds, cold weather, and long nights contribute to a feeling of the winter blues, or seasonal affective disorder (SAD). SAD is estimated to affect up to 25% of people living in North America*.

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For some people it goes deeper. The Depression and Bipolar Support Alliance reports:
The “lifetime prevalence” of depression is 24 percent for women and 15 percent for men. This means that, at some point in their lives, 24 percent of women and 15 percent of men will experience an episode of major depression.

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As someone who has suffered from depression, I was grateful to see so much activity in CureTogether’s depression community. Depression is the 5th most populated condition here, after vulvodynia, endometriosis, migraine, and irritable bowel syndrome. The most commonly reported symptoms are loss of interest and sadness, each affecting 97% of CureTogether members with depression.

Where it gets most interesting is in the treatments and triggers people report. I’ve compiled the top ways to fight depression below, each recommended by over 50% of members in the depression community (links added by me).
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How to Fight Depression
1. Get enough sleep. This can be hard to do, but focusing on good sleep hygiene can make a big difference.

2. De-stress. It’s easy to forget to make time for yourself, but even 20 minutes a day can be a great gift. The Mayo Clinic gives some advice on relaxation techniques like meditation, tai chi, and massage, all of which can help.

3. Talk to someone. Find a professional counselor with cognitive behavioral therapy techniques, or a good friend with a cup of tea and a friendly ear. Breaking the isolation and getting out there is an important step in beating depression.

4. Move your body. Regular, daily exercise is good for your body, your mind, and your mood. One thing that can help is to keep your shoes beside your bed. As soon as you get up, head right out the door for a brisk walk. It really sets the tone for the whole day.

5. Try SSRI’s. For clinical depression, or if the above suggestions are not effective, you may want to get medical help. SSRI stands for Selective Serotonin Reuptake Inhibitor. Prozac was the first of this class of drugs. There are risks and side effects to SSRI’s, so talk to your doctor.

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Choose one of these things and do it right now.

For more symptoms, triggers, and treatments for depression, and to find a community of people going through the same thing, visit CureTogether. We wish you wellness and happiness.

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*Rosen et al (1990)

Stay hydrated, find time to sleep, and when all else fails, break out the Imitrex. These are some of the most highly rated tips posted in the Migraine data-sharing community at CureTogether (full list below).

Migraine is a disease that affects 30 million Americans. The Migraine Research Foundation estimates that every 10 seconds, someone in the United States goes to the emergency room with a headache or migraine. And with the added stress of the winter holidays, some migraine doctors see a 30 to 40 percent increase in office visits, according to the Headache Institute.

To help manage their migraine pain and find solutions for it, a community of migraine sufferers is growing here at CureTogether (http://www.curetogether.com/Migraine). People are sharing treatments, rating their effectiveness, and writing reviews of their experience. This data is continually gathered into live statistical charts that show how many people have tried a given treatment and how effective it was, on average. One member commented that the statistical data was “very useful”; another said “It’s helpful to see what triggers other people have and what they’ve tried, and a good reminder to focus on avoiding my triggers as much as I can over the holidays, and afterwards!”

The top 12 tips for dealing with migraines as suggested and ranked by CureTogether members are*:

1. Reduce stress
2. Sleep
3. Ibuprofen
4. Avoid dietary triggers
5. Avoid caffeine
6. Imitrex
7. Don’t stare at a computer/screen too long
8. Stay hydrated
9. Neck massage
10. Maxalt
11. Chiropractic treatment
12. Magnesium

For more migraine treatments, visit http://www.curetogether.com/Migraine/_treatment/.

*Please note that this list of tips and all other information on CureTogether.com does not constitute medical advice.