Resources

Topics

Ehlers-Danlos Syndrome

Connective Tissue and Collagen Basics

Fibromyalgia

Mitochondrial Disease: an Invisible Illness

Reliable Complementary/Alternative Medicine Info

Antidepressant Drugs

Pain Organizations


Finding reliable information online is difficult, so here are some legitimate scientific sources:

Ehlers-Danlos Syndrome, Hypermobility Type – free full PMC article

Common Opiate Pain Medications: Naming and Composition
https://edsinfo.wordpress.com/resources/common-opiate-reference/

Pain Management – Symptoms, Causes, Treatments, Medications for Chronic Pain
http://www.practicalpainmanagement.com/patients  (9/23/13)

National Center for Complementary and Alternative Medicine (NCCAM)
http://nccam.nih.gov/health/mindbody  (9/23/13)

Inspire forums for excellent up to date information and support from other patients:

Other EDS and pain-related blogs:
https://edsinfo.wordpress.com/tag/blogs/

Scientific and evidence-based reviews of pain research:
http://pain-topics.org/

Health Rising: excellent explanations of the latest research on FMS and ME(CFS)
http://www.cortjohnson.org

Search for All Things Neuroscience:
http://www.neuinfo.org/

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8 thoughts on “Resources

  1. Cole

    Please make it clear that there are different types of steroids. Corticosteroids are not the same as Anabolic Androgenic Steroids, which absolutely would be safe to use as an EDS patient under the supervision of a doctor. I say they are safe for use, because TRT is a legitimate medical treatment. I was extremely worried to find an EDS patient sharing VERY positive results of his doctor’s testosterone prescription, only to hear that he has since stopped. He cited your website as the reason.

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      1. Cole

        Man I terrible at this, I didn’t even reply to your comment. I just posted a new one.

        “It is! I don’t know how to navigate your site.

        https://edsinfo.wordpress.com/pain-mgmt/steroid-injections-and-eds/

        There is absolutely NOTHING wrong with your information! It just upset me that someone had great success with TRT, and had stopped taking it because he thought it was harmful. He cited that page as evidence as to why he stopped. He didn’t understand the difference between AAS and Corticosteroids.

        If you feel my comment is inappropriate or unwarranted, I apologize.”

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        1. Zyp Czyk Post author

          I’ll help you with this later by moving your comment to the article where you meant it to be and identifying it as yours.

          I’ll also make a point of clarifying that there are different steroids and which ones are being referred to.

          Lost in all this is that you’ve made an excellent point! I didn’t even make the connection with anabolic steroids, so thanks for pointing it out,

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          1. Cole

            THANK YOU SO MUCH! I have EDS, very mild hypermobility. I’ve spent the last few years reading up on AAS(and hormones in general), because I strongly believe it’s going to play a huge role in my quality of life. I was diagnosed a decade ago and haven’t done any research on EDS since, so I decided to start researching EDS again. Naturally, I started by looking for people who had been prescribed AAS or hormones. I found a very old post on Reddit and the user shared his story and it was nothing but positive comments. I PM’d him to ask if he’d be willing to share more information. He advised me to stay away from steroids and cited your website. I could tell he misunderstood. It crushed me because I want to pursue a medical career, either research or practicing, in order to assist people with problems like ours.

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  2. Cole

    It is! I don’t know how to navigate your site.

    https://edsinfo.wordpress.com/pain-mgmt/steroid-injections-and-eds/

    There is absolutely NOTHING wrong with your information! It just upset me that someone had great success with TRT, and had stopped taking it because he thought it was harmful. He cited that page as evidence as to why he stopped. He didn’t understand the difference between AAS and Corticosteroids.

    If you feel my comment is inappropriate or unwarranted, I apologize.

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      1. Cole

        Thank you! I just feel like AAS has been demonized and is wildly misunderstood. It’s not really seen as an option, while I believe it to be crucial with how fragile our bodies are. If our bodies refuse to function properly, I feel we should optimize our hormones so our bodies don’t have to experience the negative symptoms associated with low testosterone and fluctuation of hormones in general.

        I don’t think the article is the problem! There was nothing wrong with not including AAS. It’s just viewed so negatively in society I feel that people immediately lump it together with Corticosteroids.

        I really appreciate you taking the time to edit your blog page. It means a lot to me that I was able to provide a slightly different perspective.

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