Chronic Pain members - Welcome, please introduce yourself

Very well said @faithwalker007 . It can also be of value to not say we feel a certain way rather we have observed such and such.

A little bit off subject but in regard to family members or friends or people in our lives that need to adjust their expectations of us, it can be beneficial to show them the list of your medical conditions and diseases and point out specifically which ones are painful in nature. If the people care about you and you care about your relationship with them, you could say that you felt you needed something from them and that was to understand your situation so that they can adjust their expectations and then show them the list. That way, you are almost put into the position to have to show them to make for the best relationship. You have not accused them of doing any thing wrong rather it is something you need from them and important to you because you value the relationship.

I had to do this with my daughters at separate times but was resentful because they put me in the position to have to validate myself. I spoke to this some time ago when one of my daughters said she had talked with the other and they had agreed they would take turns coming every other week or so to help me with things. When it never happened, the daughter who told me about it, alluded to the fact that the other had said that they wanted to be careful they did not enable me.

They knew about all my doctor appointments, Diagnostics, procedures, surgeries and illnesses for years so that should have been enough and that really hurt me and made me resentful.

It could be a very helpful thing to do what I did only before resentment builds.

Blessings, Sunnyflower

Very well said @faithwalker007 . It can also be of value to not say we feel a certain way rather we have observed such and such.

A little bit off subject but in regard to family members or friends or people in our lives that need to adjust their expectations of us, it can be beneficial to show them the list of your medical conditions and diseases and point out specifically which ones are painful in nature. If the people care about you and you care about your relationship with them, you could say that you felt you needed something from them and that was to understand your situation so that they can adjust their expectations and then show them the list. That way, you are almost put into the position to have to show them to make for the best relationship. You have not accused them of doing any thing wrong rather it is something you need from them and important to you because you value the relationship.

I had to do this with my daughters at separate times but was resentful because they put me in the position to have to validate myself. I spoke to this some time ago when one of my daughters said she had talked with the other and they had agreed they would take turns coming every other week or so to help me with things. When it never happened, the daughter who told me about it, alluded to the fact that the other had said that they wanted to be careful they did not enable me.

They knew about all my doctor appointments, Diagnostics, procedures, surgeries and illnesses for years so that should have been enough and that really hurt me and made me resentful.

It could be a very helpful thing to do what I did only before resentment builds.

Blessings, Sunnyflower

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 Renee, I read everything you post, and you bring such great wisdom, compassion, kindness!!! I am touched by the love you and your husband have for eachother, and how you support eachother with both your serious illnesses. Your insights into family are spot on. Your courage astounds me, as CRPS is utterly devastating. You are a true hero, and a tough, but loving soldier!!!! I so admire you. I really do. And you help so much. Lori Renee

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.

@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 The last pharmacist I had was a wonderful man from South Africa. I strongly suspect he had a different education, perhaps even a physician's degree, as his wealth of knowledge was astounding. He caught several things that my drs didn't. He guided me a lot in the early days of my rare kidney disease. On the other hand, my PCP freely used his apps to look up medications and interactions when we discussed things, to make sure he was accurate. I appreciated that he had not tried to "wing it" or "assume"; there is no way one human can keep all that information readily at hand in their mind!
Ginger

@sunnyflower Hi there, Sunny. My heart breaks that you even had to feel you needed lists to share with your daughters to defend yourself and prove you need their help and their love. This is so awful, so unnatural. Good, caring daughters would be attune to you, naturally. This just kills me inside. And to then write to us, telling us here that a daughter said she spoke with her other siblings and they said they did not want to be "enabling?" How sick do you have to get, before they just help you? This infuriates me. You poor, poor, lady. I am sure they will say how much they loved you after you are gone. Just words. Love should be practiced and witnessed while we are still alive. I am heartsick from your daughters, Sunny. You give so much. And by the way, I have only one son, and he is no better. Perhaps I did something wrong as a parent, a long time ago, because he doesn't seem to connect with my pain at all. If he does, he does not show it. My love to you, Sunny. Lori Renee

@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