Regarding kidney stones- I vomit every time one moves, so as soon as that starts, I call my urologist or head to ER. The 1st big one hit me so hard that I thought I was dying. I was alone with my then-4 year old & I remember laying on floor & praying that he didn't watch me die. In the ambulance, I managed to tell them no meds bc I'd signed a contract with my pain doc. When we got to ER, the wonderful docs gave me toradol and dilaudid, assuring me that they'd called my PM doc. At the next appointment he assured me that it was okay to take IV meds during a kidney stone, I didn't need to call him (lol) and I could even take 5 days of toradol away from hospital for stone pain. At the time, I had no idea that the drug that would work best for me for stones was toradol. I was SO scared that they'd overdose me, but that sweet ER doc was patting my shoulder and assuring me that they wouldn't. Since then I've had to go to ER 4 more times, and got a 7.5mm stone lodged in my ureter, that was my 2nd lithotripsy. They said I have spongy kidneys & need to see nephrologist (next month) and that I still have multiple stones in both kidneys. I've been through childbirth, RSD & appendicitis. Kidney stones are the WORST. I passed one a few months ago & as it was middle of the night & my son had school, I just threw up & moaned until I couldn't move due to dehydration. But luckily, I passed it before the ER visit & CT scan the next morning. I was bawling, because I was due to leave on my bucket list trip to Greece in 6 days. Thank GOD the stone passed.

Regarding marijuana, I grew up as asthmatic and while I outgrew it, I still get incredibly sick around cigarette smoke, or any smoke. I'm one of those rare people (total nerd) who never even tried a cigarette. I sure hope they're not replacing proper meds with weed. I mean, if it helps people, it should be available. My mom had terrible nausea when dying of cancer & was allergic, as I am, to Compazine. Nothing worked for her. I wish she'd had that option. But again, we're just not smokers in our family. But I would never judge someone who needed it.

JMan, I hope your pain gets better! I'm trying SO hard to get through a cut in my meds. I'm infuriated with the CDC for trying to push this one size fits all "solution" when we all have different pains, different levels, etc. I haven't slept more than 4 hours since Tuesday, when they cut my meds. After 19 years, my body is just not having it. I took just enough to get by. Now I'm counting the hours. I didn't think there would be such a difference between 12 hours and 8 hours. And this is warm weather! To quote Game of Thrones, "Winter is Coming" and my RSD reacts badly to cold weather. I can't imagine dealing with all of this when my pain levels are even higher.

Hugs to everyone- we need to stick together & fight!

Jer, you know we're good, your pain talks and that's fine, we all have bad days. As for some of your recent thoughts.....

Ummm...can't come up with a valid reason why the Government would want us all to be on illegal drugs like Heroin...not much of a fiscal upside for them on that one, unless they've made deals with South American Druglords that we don't know about...

Marijuana...not for me, I also have asthma, and if I didn't I wouldn't use it. I've never taken illegal drugs and I've never drank and I don't plan to start at 47.

And no I"m not telling you that a major amount of Drugs will let you run wild. Its a different thing for each person. For me it's an easy formula drug mg + verified amount of activity = pain number. I know that my pain number can be at a 5 all day, everyday and I can live with that. It lets me drive back and forth to work, work from my office for 25 hrs a week, M-Th. and Garden for 2 hours on the weekend. I also swim 3 nights a week, and do 30 min of cardio 2 nights a week. For pain flares I have Break Thru meds, which I never take everyday, because I firmly believe that once you take BT meds everyday, they then become part of your Medication Pain Mgmt Plan and don't work as BT meds. So that's how it works for me, and that's honestly about all I can do in a week, adding anything else is pushing it, and some days I work from home because I can't make the drive into the office.

Out of fear you're still not using your Long Acting med properly. The Methadone isn't going to work right until you take it on a regular level and it's able to build up in your BPL and get out of the "peaks and valleys" stage. I think you'd see a difference if you took it properly....but that's just my opinion.

Drs giving patients pain med in this high of a dose is one of the reason for the CDC Guidelines. I know that you aren't looking for a new dr, but you never know what could happen. One of the best drs that my ex and I had died suddenly at 40.

I don't think it is appropriate for ANYONE here to comment on who has a high dose or who doesn't. As long as the meds are being prescribed by a CP doc, a person highly schooled in meds, we have no right nor invitation to act like know it alls or bullies. I had 3 different CP docs- one retired, one died, and the current one. All 3 thought I was doing extremely well. 19 years without increasing a dose or changing a med is rare. RSD is a terrifying disease, and I managed without the CDC to live a full life. Now I'm looking at the possibility of quitting my job, my husband, and being a ghost of a mother to my 7 year old. He asked the PA if I was going to DIE. We both assured him, but he sees me in pain, unable to do much, and that is the saddest part for me. I care about everyone who is dealing with this ignorant CDC ruling. I don't BLAME anyone who has real CP. I don't care what their dosage is as long as it is legal and works. I could've changed my meds several times. I was offered a morphine pump, a switch to Fentanyl patches, etc. But I decided it was easier to stick it out with low level pain that is controlled by LA Morphine. Only God knows what will happen to me. I'm in high level pain, unable to sleep more than 3 hours, and dealing with terrible depression and worry regarding my next doctor appointment. This CDC ruling sent down from above like a Heavenly Law, was not thought through. It is not going to work. If only these things, the entire story, including CP patients' lives were broadcast like the Kardashians, people would care. We have to make people care.

Itsjustme - I can't even imagine having CP hit more than one person in a family. I'm sorry that happened and sorry that your good doctor died. It happened to me, too. My best doctor and a man who fought for CP patients died just days after I saw him last. He was keeping such long hours with CP patients that he ignored his own pain. He died suddenly of last-stage kidney cancer. He never knew he had it. I'm also sorry that the marriage ended. I can't even fathom my husband getting RSD or another CP disease. It's hard enough right now trying to figure out how we live with one of us possibly out of commission. I pray that doesn't happen.

I seriously only want what is best for all of us CPers. We need to stop attacking and stick together.