Chronic Pain members - Welcome, please introduce yourself

Take 2. I have no idea where my first attempt went.

Some of you have wanted me to share the details of my appointment with the neurologist today. I'll tag as many as my brain allows.

@jesfactsmon @lorirenee1 @gingerw @hopeful33250 @bustrbrwn22 @colleenyoung @faithwalker007 @sunnyflower @merpreb @artscaping @lioness and anyone else who cares.

I imagine the doctor thought I'd never stop asking questions. I had a long list in Evernote on my phone. I'll try to be brief.

He agreed that a pain pump could be a good solution to my ongoing hassles over pain meds, specifically morphine sulfate contin. I'm going to have a consult with a physiatrist who can order the implant and manage the medication, probably dilaudid.

I'm going to see a GI to find out if there's anything that can be done to improve my swallowing, which is neurologically related.

He agreed that IVIG could be considered after the pain pump is in place.

He said that, yes, I do have CIDP - something else for me to learn about.

I start Cymbalta as soon as I get it from the mail order pharmacy.

Nothing much can be done for double vision, but the hope is that prednisone will slow down the progress, not only of that, but pn in general.

After the pain pump is in place we can start to consider mm and CBD products.

I have small, involuntary movements in my hands and fingers and feet, and pretty much anywhere, and he said that he had noticed it, and it's likely a symptom of restless leg syndrome. Because I take Clonazepam, my legs don't move around at night, for which my wife is thankful. I just figured I was acting out my dreams.

I think that summarizes our conversation. It seems that every time I have an appointment with the doctor, I find out that something else is askew. I'm really hoping that the pain pump implant won't be considered an elective surgery. Because of covid, that would mean an indefinite wait.

Thanks for your interest and thoughts and prayers.

Jim

Jump to this post

@busterbrown Mine aren't that long sorry can you tie them in a knot to shorten them?

Jump to this post

@lioness I’ve tried. Part of the problem is I have to put on the bottom of my feet daily since my sciatica is acting up most there right now. They electrode cords they make aren’t for midgets like me, only 5’2”. Then I trade off with my butt and hamstring adjusting carefully so when I pee I don’t hit it. I wish I could patent a blue tooth model.

Jump to this post

@jimhd Wow, Jim, I am glad you are getting somewhere with perhaps finally, managing pain. The pain pump sounds like it might be excellent for you! Was the implanted device that is in you now, mentioned at all? I know you were thinking of turning it back on. I don't know what CIDP is, at all, so I can't comment on it. I just pray that you have found workable answers in this journey with pain. Love to you, Lori Renee

Jump to this post

My hubby tried the decrease dosing before one of his many surgeries, but it didn’t work. Nothing could relieve the pain of his TKR and revision surgeries. I guess next surgery we’ll try the vacation.

Jump to this post

Take 2. I have no idea where my first attempt went.

Some of you have wanted me to share the details of my appointment with the neurologist today. I'll tag as many as my brain allows.

@jesfactsmon @lorirenee1 @gingerw @hopeful33250 @bustrbrwn22 @colleenyoung @faithwalker007 @sunnyflower @merpreb @artscaping @lioness and anyone else who cares.

I imagine the doctor thought I'd never stop asking questions. I had a long list in Evernote on my phone. I'll try to be brief.

He agreed that a pain pump could be a good solution to my ongoing hassles over pain meds, specifically morphine sulfate contin. I'm going to have a consult with a physiatrist who can order the implant and manage the medication, probably dilaudid.

I'm going to see a GI to find out if there's anything that can be done to improve my swallowing, which is neurologically related.

He agreed that IVIG could be considered after the pain pump is in place.

He said that, yes, I do have CIDP - something else for me to learn about.

I start Cymbalta as soon as I get it from the mail order pharmacy.

Nothing much can be done for double vision, but the hope is that prednisone will slow down the progress, not only of that, but pn in general.

After the pain pump is in place we can start to consider mm and CBD products.

I have small, involuntary movements in my hands and fingers and feet, and pretty much anywhere, and he said that he had noticed it, and it's likely a symptom of restless leg syndrome. Because I take Clonazepam, my legs don't move around at night, for which my wife is thankful. I just figured I was acting out my dreams.

I think that summarizes our conversation. It seems that every time I have an appointment with the doctor, I find out that something else is askew. I'm really hoping that the pain pump implant won't be considered an elective surgery. Because of covid, that would mean an indefinite wait.

Thanks for your interest and thoughts and prayers.

Jim

Jump to this post

Hi Jim, we must be related bc I've spent literally hours typing messages and they disappear!

I hate that you have CIDP but am glad they found the, or one of the culprits responsible for your suffering. I so hope the Cymbalta works well for you and that the IVIG may also be something that gives you HUGE relief!

Jim, my heart is so heavy to know what you go through. Please Father, bathe Jim in your presence, Your incomprehensible love, comfort, peace and hope. In Christ's unfathomable love, Sunnyflower
@jesfactsmon, @colleenyoung, @lioness, @lorirenee1 @bustrbrwn22, @hopeful33250 @gingerw @faithwalker007 @merpreb @artscaping

Jump to this post

Oh my GRACIOUS! Once I D/C'd my Tramadol before a surgery bc I didn't want to be too sedated. As you can imagine, I suffered a brutal textbook withdrawal! I waited days and then called a doctor friend and he explained it all to me and gave me some meds to help. This was for several days post-op. I've learned a lot over the years about opiates the hard way! Blessings, Sunny flower

Jump to this post

@lorirenee1
I'm meeting with the Abbott rep tomorrow to try adjusting the scs. We didn't talk a lot about it, just acknowledging that it's still on, and that I'll be trying to get it adjusted. The doctor said CIDP is an umbrella label for neuropathies.

Jim

Jump to this post