Chronic Pain members - Welcome, please introduce yourself

The weather is still not cooperating. We haven’t had a nice clear day in 5 days. We’ve been at 95% or higher humidity and only 35-40 degree temperatures, much lower at night. It’s making my osteoarthritis in my knee, shoulders and hips flare as well as my CRPS. I’ve been spared a migraine so far. I’ll probably get nailed with one of those when the barometric pressure starts to rise and this crap moves out of here.
I’m trying to start a new book but I can’t concentrate on anything but the pain in my legs. Feels like they are being squeezed in a vice, at the same time someone is beating me with a baseball bat and I’m standing in a slushy, icy mountain lake.

Family is hard. My parents finally believe the pain I’m in but they are here in town. My brother still believes I am exaggerating and my son has lived with my husband’s pain and surgeries his whole life. He compares mine to his which are not the same. CRPS is worse but I gave up.
My other family ignores it and pretend I’m “fine.” They are not in the same state or region but I really wish they would try harder to understand and read about it because they could give mom and dad support.

That is why I said at the beginning to tell your family and all those you trust around you. You need to know who believes you and those who don’t . Who is on your team and who isn’t. Who will stand by you and those who refuse to listen.

My advocate is my husband. He is with me at every appointment. He stands by my words, actions, and deeds. Holds me up and catches me when I’m crushed. I cry every disappointment on his shoulder, son every betrayal in his ear, and then do the same for him at this trials by fire—he’s disabled as well, remember?

I’m sorry you have been self-advocating for so long. It’s a chore and weakens a determined will only to steel the spine when necessary.

Nothing I say in this is guesswork or out of naivety. It is from experience either in healthcare as a pharmacist or personally from being the caregiver of a man who suffers from severe, agonizing pain every day of his life, or as a progressive CRPS type 2 patient who has no hope of remission and only 40% control and who struggles for any form of relief on a daily basis.
Life was never promised to be easy but we don’t need to live it alone. We do need to be wise and smart though and THAT is all I was saying.
Today’s healthcare isn’t the same as it was 10-20-30 years ago. To act like it is, is asking for you to fall victim to malpractice.

@faithwalker007 @lorirenee1 @jakedduck1 @jesfactsmon
and my other pain warrior friends.

I just spoke with my pcp. I reminded him that before my scs implant, I was taking mscontin 30mg tid, and dropped down to 15mg tid because the stimulator was helping so much. He finally gave in and advised 30mg bid until my November appointment with the pain specialist. He didn't want to increase it any more than that without approval from the specialist.

OK. Now for things he said. Opioids are for short term use only. Patients build up a tolerance. National protocol says that it loses its effectiveness in treating chronic pain. National protocol says that it isn't indicated for neuropathic pain.

I told him that I know all about that, but I'm one of those people whose pain is relieved long term by opioids, and because I've run out of options, because I don't abuse meds by taking more than I'm prescribed, and morphine is the only medication that's been of any help.

Oops. Time for my zoom with the therapist.

Jim

@faithwalker007

Good job...........and important to know that the records and regulations do exist.
What kind of laptop do you have? Does it have a page for internet accounts? I just went through that issue. There is a young man in Dallas named Jeff who devoted three hours to help me so all my devices are "cohabitating" in the same internet world.

May you have peace and happiness today.
Chris

@artscaping

My new laptop is an Asus, and it connected to my phone perfectly for the first few months. Then a couple of weeks ago, nothing. I followed the instructions from an online article - actually, several articles - but it won't detect any internet connections. My tablet connects fine. It's not a big deal, because I can do pretty much anything I need to on my tablet or phone.

Jim

Hi Jim, so glad your doc approved an increase in your morphine. I will be praying that you will like the pain doc and that that person will be a good fit for you. I pray they will be compassionate and not have opiophobia and have the wisdom to make your pain manageable.

Keep us posted! Sunnyflower. 🙏😊

It takes a pharmacist years of education and training to learn the different classes and medications and their MOAs — mechanisms of action— to assume, memorize, or wing it—is dangerous. Memorizing does not work because different drug classes work/don’t work with and interact with disease states, drugs, allergies, environments, and food. The only way to know how a particular drug affects any or all of these factors is knowing how the drug works on the body at the systemic and cellular if not atomic level and to do that you must know and understand its mechanism of action.
From there you can understand the class and defer the knowledge to the class with... caveats to the particular drug in question.
That’s why pharmacists have such extensive chemical, therapeutic, and biochemical knowledge.
It’s also why we’re called the GATEKEEPERS.

@sunnyflower

The pain specialist I've been seeing for several years isn't an opiophobe, but he is certainly an " opioids don't treat neuropathy pain" doctor. He doesn't try to make me stop taking them, though it's pretty clear to me that he doesn't like it. But then, nothing he's had me try has worked, and we've tried a LOT of medications.

Today, I put a coat of deck stain on the railing I built yesterday, and did some yard work preparatory to winter's arrival. With the adjustment of my scs, down one notch from where the rep set it, my pain level is down a notch as well. Of course, it takes a couple of days to know. Sitting with my feet on the ottoman, it's down to 7 - better than 9, for sure.

Looking online for a pain management doctor who isn't afraid to include opioids in the treatments he offers, I found one who was an anesthesiologist for a long time before changing direction to opening a pain clinic. He had a life changing accident that resulted in severe chronic pain, and decided to return to college to train for treating others who are living with the level of pain he lives with. I'm going to call his clinic tomorrow to see if they could help me more than my current doctors are. Their website doesn't mention pain pumps, but who knows. Maybe he would give me unbiased information, being a relative newcomer.

Jim