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Chronic Pain members - Welcome, please introduce yourself

Chronic Pain | Last Active: 15 hours ago | Replies (6914)

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@faithwalker007

My name is Renee and I have Complex Regional Pain Syndrome. I live in Wyoming. I developed this disease after my knee replacement in 2017 and have been fighting for a diagnosis, medical treatment for the pain, and a continual search for quality and hope in life. As most know, in today’s paranoid, narrow-minded view of pain and its treatment, it’s becoming harder if not impossible to do so.
Life though isn’t about pain, it’s about joy. It’s not about control and manipulation but strength and courage. And most of all, love. I’ve learned I’m never in this alone because even if I don’t have friends or even family by my side during the hardest, most unbearable days of my life, I always have the One Person who has never left my side and remains beside me today— my Friend, Jesus.

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Replies to "My name is Renee and I have Complex Regional Pain Syndrome. I live in Wyoming. I..."

@faithwalker007

Hi Renee. I'm 70, and have been dealing with sfpn since the beginning of 2013. Doctors have prescribed one medication after another. A few gave limited relief for a limited time. Others have had no effect, while others have had minor to severe side effects. Early on, I was prescribed morphine sulfate contin, 30mg tid, and it's the only medication that's helped long term. I still have significant pain but mscontin takes the edge off.

A few years ago I wanted to see how much it was helping, so I slowly tapered off it, and after 2 or 3 weeks, it was clearly treating my pain. So I tapered back on it, but found that 15mg tid was adequate. Big mistake! Shortly after that, my pcp told me that he would NOT increase it. I really do need to get back to the 30mg tid, but he says that I'd just be needing more because I've built tolerance. I also take 1mg of Clonazepam for anxiety, and it has done its job for 14 years. But now it's a crime to take an opioid and benzodiazepines together. So, now I have to apply for prior authorization through my doctor. Did that in September, and it's only good until the end of the year.

My pain started in the balls of my feet and now it's hurting all of my feet and has moved up to my ankles.

If I stay busy, I'm distracted from the pain, but the pain is 5-7. When I sit down, stand still, or lie down, it ramps up to8-9. And that's how it feels taking mscontin. If I'm not hurting too much, I only take one in the morning and one at bedtime. If my feet and ankles hurt too much (9), I take the 3rd one at bedtime, and taking 30mg at one time makes a difference. After an hour, the pain is down enough to go to sleep.

Two weeks ago I had surgery for severe spinal stenosis at L3-L4, and L4-L5, hoping that releasing the pressure on the nerves will reduce the pain enough to allow the SCS to be adjusted and help with pain control the way it did 2 years ago.

I retired at 55 on Social Security disability because depression, anxiety and PTSD had left me unable to function in my job as a pastor. With the help of some good doctors and therapists and medications, those things are pretty much under control, though not completely gone.

Pain is a factor in the mental health challenges that I face. When it's a level 9, my mood is definitely affected. I need to communicate that to my pcp somehow. I've been talking about this with the therapist, figuring out how he can advocate for me. I do advocate for myself as much as I can, but I know it's not enough. The opioid legal information you mentioned is exactly what's going on here in Oregon. The decision makers are out of touch with a realistic view of the pain relief needs of those with chronic intractable pain, and whose pain is relieved only by opioid pain meds. And mental health seems to be totally off the radar. So what if the benzodiazepine is keeping anxiety under control. It doesn't seem to matter.

Well, by the end of November I'll be pushing my prescription drug providers to get the process of prior authorization approval started, in time to get it cleared before I run out of mscontin. I really hope that this won't be a quarterly hassle. It is certainly having a negative effect on my anxiety level.

I should have taken my meds an hour ago, so I need to quit writing and get ready for bed. I hope and pray with you that some of these issues will be resolved without having all of the collateral damage to those of us who need pain medications and take them responsibly.

Jim