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Thanks, Charles, BView Thread

Completely off now -- 12 mcg's is like nothing anyways. Some strange experience with the Xyrem. Ends up helping with pain, and definitely daytime fatigue.View Thread

I haven't been on at all so I didn't worry about your response. No, I have not heard from Mpathia.
i hope she is doing alright.
i have been in pain hell too and was just informed by my prolo doc that he will end our relationship/treatment if I don't ween off all narcotics.
The very medications I rely on to take care of my son, function, sleep, etc. should be a thing of the past. I'm not in a great state of mind to just drop the use of a fentanyl patch.
I'm sorry to hear you are having a rough time. I feel bad for you knowing that you rely on very little medication in order to function and have to deal with so much pain.
I don't know if you will come accross this post, but if you do,just realize that I'm pulling for you (and thinking/praying) that you find relief. You are such a kind person.
Take care of yourself, BView Thread

I was a tennis player who played up to 10hrs/week. I was a cyclist who rode 25-30 miles at a time/2-3 days a week. I'm competitive, but love to do it for the fun. I haven't missed my sports, soccer included, as bad as I have the past couple of weeks. I'm HATING spending most of my days lying on the couch. Watching Animal Planet, Sci-Fi, most recently (probably why I'm so bummed): the Olympics. I used to be an ameteur skateboarder. I flew down stairs and rode as fast as I could down hills. The rush I got from all these sports I loved was incomparable to anything I've ever experienced; much like the feeling displayed on athelete's faces as they push themselves to the limit while millions watch.
I would trade anything, especially the handful of med's, to get back to that place. I don't accept that I'll never return there. I just can't. I also can't accept that 20+ doctors cannot figure out why I have chronic pain in my leg, on my sit bone, SI joint, buttock, down the leg. Recently it has caused a pinching pain in my low back. That "insignificant disc bulge at L-5,S1 is not that bad", according to the docs. "Arthritis in (my) SI joint is common and no cause for concern"...
Well doc, IT F-kin' hurts! I was riding my bike one day, slipped off the pedal and crashed on the seat from a standing position...not a big deal, so I rode another 25 miles. It happened twice. I kept riding and playing Tennis. I had a 9-5 deal where I was expected to sit before a computer all day. I hated sitting. Dealt with some awful burning pain down the leg, in my crotch, for about 2 months until my boss forced me to go to urgent care...that was the death of me. I NEVER imagined I would still be in this much pain years later.
Sometimes I feel like my docs are my opponent. My family no longer cheers me on. My team consist of a 4 yr old and a wonderful spouse of whom shouldn't be asked to take on such a burden. Sometimes I wish I could suffer in silence. I'll take pain over imposition any day. These boys are the light of my life. Well, what's left of it.
I'm no longer planning competitions, play dates nor family vacations. I'm a slave to the medication but still can't function on an acceptable level. If I state this, I "must be seeking a fix", or "must be in need of more drugs"...
Well, f-U medical community. Gimme back my bike. Gimme my tennis racket and some balls. Gimme a chance to play on the floor with my son. I want to clean my house!! I want to go to work. I want to go to the beach.
If only I could be as determined as those athelete's competing in the Olympics. That's what I want. Not another doc appointment. Not another pill.
If only my family (extended) could understand what it's like to be so stuck. None of them have ever felt this way, yet they are convinced it's in my head. So weeks, months, a year goes by and my son grows older; yet hardly any phone calls, only guilt-coated comments they breathe my way as if I wasn't suffering enough. No wonder my dad "checked out" after 26 yrs of chronic pain/Fibro/CFS.
I would never cause such devestation to my family, but the lack of support is enough to drive anyone mad.
So I ask, why me?? Why not my sister, or brother? I wouldn't wish this on anyone, but I cannot accept that this is a life sentence. I refuse to. Yes it sucks. Maybe I've become a stronger person for it all....but Christ!! Lessons learned! Let me move on!
I wonder if anyone else feels like the dark cloud hovering over the hopes, dreams and aspirations that every healthy individual within their family circles? They always forecast a dark day where I am concerned so avoidance, like an umbrella, protects them from me. GEESH!! All I did was push myself as hard as I could. I am an athelete. I have to get back in the game! HELP!View Thread



I'm trying to keep my head up, thanks, BView Thread

I get do frustrated that I haven't received a diagnosis, may never get one. But waiting so long, I have slipped in that chronic pain category. The chances of me getting healthy again seem slimmer.
But overall I need to remind myself that there are so many people out there who are afflicted with worse pain conditions, Parkinson's, Lou Gherrig's disease, cancer, RSD, Failed Back Surgery Syndrome...all who won't get back to their former lives.
I'm glad you wrote. Thanks, BView Thread


I'm sorry to hear about your loss. I hope that you can get the support you deserve.
I have created this community to offer support to those afflicted with chronic pain (and their families). I hope you don't run into any remarks on this board that are hurtful, but I do not have the ability to delete comments.
I see you are having trouble navigating between communities. Maybe I can clarify a few things and encourage you to continue to seek help within the forum that's going to offer encouragement, rather than play 20 questions.
The other board, where you received many questions about your treatment, is moderated. A webMD staff member is able to delete inappropriate comments. Also their are 2 PM Docs who offer input from time to time.
People living in pain tend to be grumpy, eccentric and sometimes cynical--I know I can be at times. Whatever happened over there should not warrant your withdrawal from seeking help and support; however, I would hope that you find more compassion here.
If you want to track conversations you're involved in, click add to my watch list & a link will be provided in an email from WebMD that you can click to take you to the right board.
I noticed you had a few messages here that you meant to post over in the moderated community.
I kinda feel partly to blame for bringing those comments to your attention. I didn't think it was necessary for you to look them up, I just assumed that you may have viewed them already. I think you would have been better off just reading what Anon 160... & I initially posted.
All that being said, it's time to move forward. I sincerely hope that you can get the support & help that EVERY chronic pain patient deserves.
Are you learning cognitive behavioral techniques from the psychiatrist? Certain psychiatrists are trained in helping us patients deal w/ the pain just by a change in thought patterns-biofeedback is a successful way to trick your brain, so it will help to interprate pain signals differently.
I have ideas to share, support to offer, but I just want to see if you're still here. You need help. So do I. Please try to continue an open dialogue. It's safe here.
Btw, don't apologize! You didn't do anything wrong. It was a huge misunderstanding.
Hugs, BView Thread
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