Facebook for PHN Discussions?? I'm not sure I want to go there

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I decided to check and see if there's a FB group for PHN, there is. I got accepted so I got to read the comments. It was interesting as quite early I read about a book that Ruth just recommended. But I'll be honest. Here, we can be anonymous and free to truly open up about our problems. I wouldn't do that on a FB page, even if it is a closed group. One of the very first comments was from one poster to another saying they tracked down info about the initial poster and saw they had things in common. I'm sure it was all done in the spirit of friendship and connecting, but I don't want that. I keep my FB life and my PHN life as separate as possible. Of course, they're intertwined, but I don't have to acknowledge that. I'll tell friends in a PM if I've had some major setback, but I wouldn't post it publicly, even tho I have high security settings.

Do any of you post on FB or did you join that group? I also found it too dang depressing LOL!

 

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  • Posted

    Hi Babs. I am not on FB. Tried it some time ago and it is not for me. But I have an ill family member currently and I have been communicating some with him on FB-using my husbands FB account. I am a very private person. Actually I told my family member this am that I am going to just communicate with him through email. I have a hard time following the various FB threads.

    I continue to read all the posts here. Haven’t  contributed lately because I am not doing well-depressing!

    To manage my PHN I have used lidocaine patches, an abdominal binder(sometimes pressure helps), Lyrica (200 mg twice daily), ice packs, heating pad and tried Cymbalta for over a year. Have tried several antidepressants since. Just finished an 8 week trial of Effexor XR- had nausea every day. Was seen last month by Neurology at U of M and I am now taking a second antisezure med- tegretol. Feel like I am walking underwater. This is into my 3rd year with PHN and the only thing that has really helped is oxycodone. And now with the opiod crisis I am being subjected to an arbitrary dose reduction. I have never abused or misused this drug. Never taken as much as I could have. So sorry to not to be able to offer encouraging words.

    I have read your recent posts.So sorry to hear how you are struggling. 

    Anyone out there who has needed to use opiod pain meds I would direct you to an article on Politico .com-“The myth of what is driving the opiod crisis “ by Dr. Sally Satel Feb 21, 2018. Jeaneen

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    • Posted

      I did read the article by Dr. Satel. Yes she's qualified and an expert, but that is HER expert opinion. There are many other experts who'd disagree with her. I disagree with her too. I think she simplifies the idea that people aren't dying for prescription opioids given by doctors, as much as they're drying from fentanyl and heroin. True, but from what I've read when the opoids seem to not work, they want an easier, cheaper high and then get caught in the heroin etc. cycle. Just because more people died from those drugs vs oxy etc. doesn't excuse the role that the original prescribed narcotic had in their downward spiral.

      I have a family member who was caught in this, but has now been sober for 5 years and is a counselor and I've been on committees in the past to help curtail drug usage. I'm not an expert at all, but as i said, that's her opinion and I and others may disagree.

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  • Posted

    Babs, yes, I am in the group.  I have a very small “friends” thing and I don’t post in that group.  Yes, I do read it and that’s where I found the book which I really like.  However, they post way too much stuff and it’s getting to be a nusience.  Hope you get that book!  It is quite new and informative.

     

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  • Posted

    Hi Babs. My initial reply is still being moderated and I have forgotten how to initiate a private message. Still somewhat clueless with social media type stuff. Any helpful hints. Jeaneen 
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    • Posted

      To send a private message to someone, click on their name. You'll then go to their account info and you'll see right below their name, it will say "message" and has an envelope on it. Then you just put a subject line in, write in the text box and hit "send". To read one, go to your own page (same as above) and you'll see off to the right side (at least that's how it looks on my PC) a section that says settings, messages, and notifications. Chose messages, and you'll see it there. It seems it doesn't have a "sent" and "in box". they're all grouped together. It's changed a bit in the last few months.

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