Chronic Pain Sufferers Hit Twitter About Opioid Side Effects

Chronic Pain Sufferers Hit Twitter About Opioid Side Effects

Researchers have sifted through more than two billion tweets and online posts to study the side effects of opioid pain medicine.

Led by the Cedars-Sinai Center for Outcomes Research and Education, researchers reviewed the posts about the side effects of pain medication.

“Social media can be used as a huge epidemiological database, a treasure-trove of insights from patients about their illness experiences, their treatments, and their attitudes and beliefs about health and disease,” said Brennan Spiegel, MD, MSHS, director of Cedars-Sinai Health Services Research and director of the Center for Outcomes Research and Education.

The study appears in the Journal of Opioid Management.

Researchers collected 2.5 million tweets and 217,000 posts from health-related social networking websites, using keywords such as “pain meds,” “bloating” and “nausea.” They also searched for the names of several pain-controlling narcotics, including hydrocodone, morphine and oxycodone.

“Social media provides the opportunity to make observations about patient populations outside of a clinical or research context,” said Corey Arnold, PhD, from the UCLA Medical Imaging and Informatics Group. “We were able to filter key signals from the noise in these massive datasets, allowing us to more efficiently distill important patient perspectives that can inform clinical care.”

Gastrointestinal issues from narcotics, including nausea, vomiting and constipation, were the most frequently cited issue from the dataset. Many people described that severe constipation that was even more debilitating than their underlying illnesses.

Cedars-Sinai and UCLA researchers said that sifting through social media allowed them to generalize their findings to a broader population and showed them how healthcare providers can improve patient care.

“These types of insights provide a blueprint for how to do better,” Spiegel said. “By informing doctors and prescribers about these results, we can hopefully improve the communication and shared decision-making between doctor and patient around pain medications.”

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Authored by: Staff

There are 13 comments for this article
  1. Carla Cheshire at 8:36 pm

    From my experience nausea and vomiting are side effects when someone is new to opioid therapy. This stops soon. As far as constipation, I’ve never had great problems with it that can’t be solved with a stool softener/laxative. On my normal dosage I have no side effects other than tiredness. How anyone can do a study off social media without knowing anything about who the subjects are? How could you base a study on this and publish the findings as facts?

  2. Healthy me at 5:09 am

    We all know that there research will just result to only two, success or failure. Hopefully, they are successful to attain their purpose. For the mean time, if anyone of you here still suffers constipation then that was not a problem anymore because we have now Digestic which is very effective for constipation. It has already proven and tested so nothing to worry.

  3. Romy at 5:06 pm

    I’ve been on every pain med imaginable since 2002, everything from fentanyl thru to current daily methadone for a central nervous system thing called Radiculopathy & Thalamic Pain Syndrome. Dr’s don’t care about the side effects, and a huge majority of Tweeters & FB users are using pain meds for ‘fun’ not because of true pain – NOT the best group to aquire accurate data for a ‘breakthrough medical publication’. So tired of half-ass doctors, Big Pharm, & overpriced new drugs that are worse than the old ones. Given up, and just treading water, now. Good luck to all…

  4. John S at 10:40 am

    Social Media is for Entertainment not research.

    GOOGLE – social media side affects opiates and you can find the information used by Cedars. And they left out the part that has most folks complaining – Dr’s don’t take the time to tell patients about constipation and other side affects.

    What a waste of time and yet the average Joe will believe it to be a valid medical study. Might as well have used the print version – The National Enquirer. We all know what the side affects are, all Cedars had to do was ask us.

    Facebook & Twitter – LMAO

    John S

  5. Scott michaels at 9:57 am

    i dont k ow yow to twitter. but if someone were to go on twitter an start a page ” how has opioid therapt saved your life and what.life would be without it” would get a lot of followers. the trick would be to get back to this amd other sites to know its there and to follow.
    same with favebook. maybe a youtube video of a day without meds. vs a day with. that would speak a thousand words

  6. John S at 8:32 am

    social media is the last place to get real information – who goes online to be completely honest.

    The real subject is : Dr’s don’t take the time to explain the side affects from long term opiate use mainly OIC

    Why are the using such an unreliable source ?

    Thanks

    John S

  7. Diane Succio at 7:34 am

    Wow. I just tried to email them and can not. I for 1 want to be HEARD, not labeled as a drug user. Come on now stop and talk to REAL Pain Patients about the medication we are on and just how most likely it eases the pain but it NEVER fully makes it go away. I bet my last dollar that if 1 of them or even a member of their FAMILIES were chronic Pain suffers their time would change. Yes I know Drug seekers and know about Pill mills, how about cracking down on them and leaving HONEST PAIN DOCTORS ALONE.
    I go to A HONEST DOCTOR, take random drug tests, follow his orders and still barely have a quarter of my self back. I have ALL the necessary documents on my 6 failed surgeries, the permanent nerve damage. HOW DARE THEY TRY TO TAKE WHAT LITTLE OF ME I HAVE LEFT.
    WE NEED TO STAND UP AND BE HEARD.

  8. Kristi at 4:05 pm

    What a slap in the face to the chronic pain community. I’m sorry, but collecting data the way they did is the wrong way, and then to publish their findings…..I’m just floored that they did this. They just like to keep giving narcotics a bad name. And the thing that makes this “study” utterly ridiculous is that these are normal side effects of narcotics and you can find it anywhere if you Google it! My thinking is it’s just another ploy tactic to our community who suffer with chronic pain.
    Maybe we need a hashtag like #pronarcotics or something to the sorts. I’m just sick of these “big agencies” that are playing games with our lives by doing crap like this!
    I think we should flood their twitter account telling them that unfortunately, narcotics do save our lives and to quit interfering with the political issues that are involved in this!
    Shame on you Cedars-Sinai!

  9. Kristine (Krissy) at 12:03 pm

    Ed, Terri, others on staff, what is your opinion. Will some more specific results be published? This is something we could do.

    Krissy

  10. Sierra Williamson at 11:07 am

    How about sifting through tweets about how pain patients’ pain is under-controlled due to the DEA, the CDC and other entities pushing the restrictions on opiate medications? Perhaps we pain patients need to flood twitter with other information – our demand for adequate pain relief. I was not actually aware that any pain patients were getting adequate relief….I’ve not heard one patient express such concern about side effects. The biggest concern and worry is our under-treatment, our violation of rights as human beings to adequate pain relief, and the current situation that is the true epidemic…an epidemic of under or untreated chronic pain. Our doctors’ fear and reluctance to treat us for fear of being arrested, thrown in prison, or worse – which has been caused by the DEA and other government entities who have no business in the world of treating pain.

  11. Pharmacist Steve at 10:37 am

    Amazing they can data mine for the side effects of pain management, but they can’t/won’t data mine for the denial of care, non-treatment, under treatment of pain.

  12. Diane Succio at 10:03 am

    People in chronic pain MUST STAND UP to be heard. I do not need any pencil pusher sitting behind a desk dictating my medical condition and treatment. We Must Stand up and be HEARD…….

  13. Mona Twocats-Romero at 9:15 am

    I wonder if they searched for terms like, “I can finally function again” or “Opiates saved my life”? If they only searched for negative terms, they will get exactly what they want–only negative responses. This research study is rigged in the wrong way and cannot be accurate.