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Bad day, bad week, bad life

Jan 21, 2015 8:33 PM

I was taken off Tramadol ER and Oxycodone about two and a half months ago, and given Butrans patches and Hydromorphone tabs for breakthrough instead. It wasnt until the patch got bumped to 20mcg that I even started to feel some pain relief. At first, I felt great; like maybe thirty percent of my pain was finally under control. I had a weekend I was able to go shopping with my mom no problem. I was thrilled and hopeful. Then, it's been all downhill from there. One Hydromorphone no longer helped. They upped me to two twice a day. Barely feel a difference at all. The patch no longer feels like it's working much; maybe down to like fifteen or twenty percent. Just last week they took me off of the 3600 mg a day Gabapentin tabs and put me on an increasing scale of something called Gralise, which is basically Gabapentin ER. The burning in my bladder the past couple weeks has been so bad I've had to resort to taking the newly OTC Uricalm (phenozopyridine) at night to stop both the burning and the terrible spasming that paralyzes me by causing the burning to becoming FIRE inside me. That only helps the bladder portion of the burning, though that is a big part of it. My mass of scar tissue wrapped around my lower abdomen and attached to every organ down there has been awful as well. Between the pressure that gets so unbearable it causes me to be short of breath, the deep and constant aching, and the days where it literally feels like its tearing itself and everything else apart Im losing the hope in this doctor and losing hope in general pretty quickly. This week has been an anxiety filled one as well as pain filled and last night through now I'm treading the edge of devastation and despair. I'm anxious to the point of dread, frustrated, almost out of hope and trying not to cry every second. I was born with this medical condition, been dealing with it all my life, dealing with shitty doctors who said they knew how to help me but lied and even some that actually made it worse. If this pain doctor (who I really like) can't help me and my urology team (they will be doing my hysterectomy) can't help me either I simply can't live like this anymore I can't do it. There won't be anything left to hope for. Sorry if I am being depressing, but since I'm depressed I can't help it...

Jan 21, 2015 9:29 PM

I know that feeling of despair all too well. I have a list of diseases and syndromes as long as my arm, all of which cause chronic, dabilitating pain. I'm on 300mg of Morphine a day, 120mg of Oxycodone for breakthrough, 16mg of Zanaflex a day for the horrendous spasms, 3mg of Ativan for Anxiety, 200mg of Zoloft for depression and 30mg of restoril to try to sleep. With all of those meds you'd think I'd be a zoned out zombie incapable of functioning. The opposite is true... Many days my pain level is an 8 out of 10 and that's 45 minutes after I've taken a pain pill. It's frustrating, exhausting, depressing and many other adjectives you can think of. I haven't slept in a bed in around 8 years because it hurts my spine and other areas too badly to lay down. I sleep (or try to sleep) in a recliner. Sometimes in the middle of the night I look at the bed and cry because I just want to lay down to sleep like a normal person. I just literally bought a special recliner that cost me $2,500 and is custom made to each person's height, weight and medical issues. I'm praying that when it arrives (in 4-6 weeks) that it does help me sleep better and will allow me to lay down flat for periods of time. Please don't be sorry for being depressed, there are MANY of us here to listen and help out if we can. Hang in there, keep with our pain community and do the best you can. It's all we can do. One more thing, make sure, always, to be proactive in your own care. Look into naturopathic medicine, check out different foods that help relieve inflammation and read up on your diagnosis. I'm here at least once a day so if you need me, just send me a post and I'll get back with you, as will everyone else here. In this group you will receive understanding, compassion, empathy, prayers, positive feedback and friendship. It's a good place to be... Welcome to the group.

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