Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

@gingerw

@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

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Hi Ginger I could not pass up the opportunity to tell you what happened to me that you could relate to unfortunately.

I had intense groin pain and had to crawl up my stairs in my home for a month. I had a negative x-ray so my PCP sent me to ortho. By this time I could barely wait bear and was on crutches.

He ordered me an MRI and that as well as the X-ray came out negative. What he said to my husband and I when I went back even worse, to discuss the MRI results, was and I quote verbatim, " you know you're getting older, you are going to have pain, you need to take that pain put it in a box and store it in the back of your brain and the worst thing you can do is to stay off your leg."

It took us a few minutes to pick our Jaws up off the floor but we did and went home. There was a voicemail waiting for us and it was my PCP who said she wanted me to go over and get a bone scan which I did.

Usually you wait and a tech will come out and say thank you, you may go home now and someone will get back to you. This time it was the radiologist and he told me I had two broken pelvic bones and to stay off my foot!

So they will take me out in a wheelchair and ever since then I have wanted to write a note to this Ortho doctor saying something like, you know, I did not come to you for a psych eval. But I never did. Clearly he had second thoughts and called my PCP to see if I had had a bone scan.

Now here is the real clincher, after that over the years, I have had negative bone scans and a positive MRI which is in Reverse of what happened then. My PCP told me that a radiologist had told her that daily steroids can interfere with results so now if one diagnostic is negative they proceed with the other and vice versa. There is no Rhyme or Reason and it makes no sense. Now that I have a new PCP I will have to go over all that with that person and I know they usually don't believe me.

It is no pleasure and not fun being a Perpetual patient. But I know God has his purpose in it so I accept it but still advocate for myself. It has taken me so many years of learning so much to be able to do that and I really feel for the people who do not have that knowledge because they have not worked in healthcare and do not understand system errors and because they just do not have knowledge of what their rights are or how to advocate for themselves.

Take good care of yourself, Sunny flower. @gingerw. @faithwalker007

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@jimhd

@faithwalker007

I can't get my new laptop to recognize Internet sources, so until I get that fixed I can't print online things. Our daughter and family are coming for Thanksgiving, and I hope her husband will be able to help me. He's an IT with the Coast Guard. I should be able to print wirelessly from my phone, and did it easily with my old pixel 2, but I haven't been able to get the printer to connect with my new LG. I guess I need to just play with it until I get it set up.

Thank you for your suggestions. I'm going to start putting together in a notebook the things you listed.

Are you doing better than you were a few days ago? I miss the days when life was on an even keel, before I climbed onto the roller coaster. You were in a ton of pain and were mostly in bed when you showed us the picture of your beautiful dog, if I remember correctly.

Jim

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My laptop is an elderly turtle in every way.

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@gingerw

@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

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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. 🙏😊🤗

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@sunnyflower

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. 🙏😊🤗

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@faithwalker007

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.

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@faithwalker007 I'm sorry your on so much pain I've noticed same thing when the humidity and dew point are high Im low in pain Funny how much weather effects the body .Hope for better day tomorrow for you .

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@faithwalker007

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.

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Renee, That's a bummer for sure. I'm very sorry to hear this. A therapist suggested that those who love you don't want you to be ill so it's easier for them to be ignorant and /or in denial. They don't want to lose you. Also, people fear more will be required in a relationship with an afflicted person so they distance themselves. They feel it will be an unequivalent relationship but they rob themselves bc we have so much to give.

Being close to someone who is suffering reminds them of their own mortality and vulnerability ; that they could become ill. Also, they don't want you to be hurting. It's awkward and uncomfortable for them bc they don't know how to comfort you or what to do.

Oy vey, such a problem! Thus, the need and purpose for this blog!!

Take good care of yourself, Sunnyflower. 🙏😊🤗🌹

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@faithwalker007

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.

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Amen, well said! When I Was preparing to become a physician assistant I had 200 index cards of the most used drugs of that year from whatever the name of the pharmacist Journal was at the time that I used. I tried to commit them abd their categories and mechanism of action to memory. I couldn't do it now but I sure loved it back then! Sunny

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@jimhd

@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

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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. 🙏😊

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@artscaping

@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

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@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

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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.

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@jimhd

@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

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My laptop is toast. It’s old but works. The problem is that I don’t have enough RAM. It freezes up as soon as I log on and work for a few minutes on anything. I’ve had it cleaned and it doesn’t do anything.

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@sunnyflower

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. 🙏😊

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@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

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