Chronic Pain members - Welcome, please introduce yourself

@faithwalker007 Renee, I have had to be my own advocate since 1988 when I went through a long diagnosis period for systemic lupus. The one dr told me it was "all in your head"!
While your list is great, and is a wonderful resource for everyone, I must add on that not everyone will feel comfortable approaching their medical teams with facts and factual information, ready to self-advocate. Some people may want or need a cohort to stand by them and back them up. Enlist that person now, if possible! And be prepared for a less-than-positive response from your medical team. They aren't used to patients standing up to them and demanding good treatment. I've been there, done that.
Ginger

Hi Ginger, I am sorry for the pain and problems you have had with your journey with poor health.

Would you mind taking me through the sequence of you're getting diagnosed with systemic lupus?

I have a mixed connective tissue disease and they've called it collagen vascular disease but I've noticed there are something like 86 autoimmune diseases and many, many of them share many of the same symptoms.

If you are comfortable with sharing the process you went through to get diagnosed and the lab test and values I would be very interested to know.

You can private message me if you want.

I do not mean to be crossing any boundaries so if you are not comfortable sharing these things with me, then no worries at all.

I have been taking a demodifying anti Rheumatic drug (DMARD) called Auranofin aka Ridaura, for 23 years. At the same time I was put on daily prednisone and Plaquenil AKA hydroxychloroquine.

After 21 years, the Plaquenil caused some tissue death in my retina so I had to get off of it immediately. However, were I to get Covid-19, I would take it temporarily in a heartbeat!

My rheumatologist, pharmacist and nephrologist could not agree as to whether or not the auranofin was causing my stage 4 kidney disease.

I tried to get off of it 8 or 9 times but when it wore off I was in such intolerable pain that I said each time, never, never, ever again will I make an attempt to get off of this drug! It was so bad yet I still to this day want to try. But now that I have adrenal insufficiency and am steroid dependent because of my daily steroid use for so many years, my rheumatologist and I don't know what to do but we think we will try again.

My pain now with my neuropathy and other health problems is so much worse that I just don't know if I can do it or we'll try.

Besides being a long-term patient of many specialists, I also worked in healthcare for over 20 years and my career goal was to become a physician assistant. I became so ill that I never could accomplish that. But I have been a diagnostician since birth and am fascinated with the human body and pathology so that is why I asked you to share your journey and also because I might find a piece of the missing puzzle for myself.

I hope you are having some victories today and I will be praying you can experience relief and the comfort of God and peace of Christ which surpasses human understanding (Philippians 4 :7). Many blessings, Sunny flower. 🙏😊🤗

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. 🙏😊