Dear Sopgirl,
welcome to the forum. I am sorry this happened to you, but here you find a community of fellow sufferers who are determined to investigate the mechanism driving this condition.
There are several ways you can help us do that:
• Report your side effects to the authorities. See here for more Information on how to report your side effects: https://www.pfsfoundation.org/report-side-effects/ 3
• Complete the survey. For the first time ever, we will systematically generate data with regard to the numerous side effects of this condition and their Impact on quality of life. It will likely also show the unsurprising similarity in symptoms between PFS, PSSD, PAS etc. that have so far been considered as separate conditions, but are likely based in similar if not identical mechanisms. The survey will hopefully create awareness and leads for publications and research. And it only costs abount an hour of everyone’s time to complete it. See here for more details: Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate
• Provide 23andme data. This is a DNA test. We hope to compile as many samples as possible of DNA from PFS, PSSD, PAS etc. patients. This may generate leads with regard to our genetic predisposition that makes us suspectible to suffer from persistent side effects after the use of these meds. This would be of high scientific interest. It costs only about a 100 bucks to order the test. See here for more Information: Important Announcement: Two Community-Led Research Projects - Please Participate
Thank you and good luck! If you have any questions, let us know!