1. < Chronic Pain

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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Mentor
Jim, Volunteer Mentor | @jimhd | Jan 28, 2017

Another note: my pcp told me that he could no longer prescribe opiates if I start mm, but the pain specialist said taking mm might reduce the amount of morphine sulfate I'm taking.

Jim

REPLY
oldkarl | @oldkarl | Jan 28, 2017

Jim, I know that finding the right MD is the toughest part of chronic illness. My serum FreeLightChain protein in the blood was running at about 250 mg/24hr, back in September, which means FLCDD. And I have high eosinophils, and anemia, and biopsy proven cancers in prostrate, stomach, esophagus, thyroid, and proven amyloidosis in my eyes, skin, and very bad edema in R leg and foot, with a large thrombus in the lower lobe of each lung, with kidney and liver failure. Yet my doctors refuse to do another FLC test. All this proven by Mayo. and cortex white matter deposits. I am now in the search for MDs who will take this setup seriously. Where do I go next?

REPLY
1 reply
19lin | @19lin | Jan 28, 2017
In reply to @carolinapearl53 "It's medical marijuana. It has helped me twofold. I have an awesome pain management doctor on..." + (show)
@carolinapearl53

It's medical marijuana. It has helped me twofold. I have an awesome pain management doctor on Hilton Head Island, SC. However, I would rather be in zero pain and not take any drug. Right now I take hydrocodone, I have a fentayl patch and because I can't sleep for more than 2 hours at most, I am taking amytriptolene and dronabiol at night. I wonder if, the Mayo Clinic could help me with my diagnosis. Talk with your doctor about prescribing the medical marijuana. It could help a lot.

Jump to this post

@carolinapearl53 I have to add that the first lie of medicine that I found was that there is no such thing as pain free, pain medicine at best reduces pain and makes it more tolerable. I have found fentayl patches to be the most helpful for me, but they do not work on all types of pain. As I have said before pain suffers need to get together and file group lawsuits or the families of pain suffers after the family member dies from lack of proper care. 19lin

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Jan 28, 2017
In reply to @oldkarl "Jim, I know that finding the right MD is the toughest part of chronic illness. My..." + (show)
@oldkarl

Jim, I know that finding the right MD is the toughest part of chronic illness. My serum FreeLightChain protein in the blood was running at about 250 mg/24hr, back in September, which means FLCDD. And I have high eosinophils, and anemia, and biopsy proven cancers in prostrate, stomach, esophagus, thyroid, and proven amyloidosis in my eyes, skin, and very bad edema in R leg and foot, with a large thrombus in the lower lobe of each lung, with kidney and liver failure. Yet my doctors refuse to do another FLC test. All this proven by Mayo. and cortex white matter deposits. I am now in the search for MDs who will take this setup seriously. Where do I go next?

Jump to this post

What's your chief complaint? I suppose you've seen various specialists. If I were in your place, where I would want to go would be easy - Heaven! No more lists of illnesses, doctors or meds. That's what I'm looking forward to.

I've been fortunate to have had some good doctors, including a pain specialist.

jim

REPLY
paulbklyn | @paulbklyn | Jan 30, 2017

I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years.
Had the Nevro spinal cord stimulator implanted 4 months ago, has helped
some, still getting night pain so I can't really sleep so called normal hours.

They are weening me off Fentanyl 75 mg now 12 mg I ran out of Tramadol
cant get it till first week of Feb. Still Take Lyrica 300 mg 2x a day,,Duloxetine
30 mg 1x day.

Pain is now in my neck and right shoulder

On my 4th pain dr he seems to be care and is encouraging.

That's my story

Hope they find something to help us all

REPLY
4 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 30, 2017
In reply to @paulbklyn "I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years. Had the Nevro spinal..." + (show)
@paulbklyn

I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years.
Had the Nevro spinal cord stimulator implanted 4 months ago, has helped
some, still getting night pain so I can't really sleep so called normal hours.

They are weening me off Fentanyl 75 mg now 12 mg I ran out of Tramadol
cant get it till first week of Feb. Still Take Lyrica 300 mg 2x a day,,Duloxetine
30 mg 1x day.

Pain is now in my neck and right shoulder

On my 4th pain dr he seems to be care and is encouraging.

That's my story

Hope they find something to help us all

Jump to this post

Hello Paul. Thank you for the update on your spinal cord stimulator and what is happening with your pain meds.

You may want to also pop in to the discussion Postherpetic Neuralgia here, http://mayocl.in/2iiJEo7.

REPLY
Jen, Alumna Mentor | @sandytoes14 | Jan 30, 2017
In reply to @gailb "Actually, I'm new here and I'm not sure I signed up correctly. I also didn't give..." + (show)
@gailb

Actually, I'm new here and I'm not sure I signed up correctly. I also didn't give a very complete description of all the issues I'm dealing with. The MRI they did showed a compression fracture at the C7 in my neck, a herniated disc at my L4, pressing on my right side sciatic nerve, the L5-S1 pressing on my sciatic nerve affecting my left side with acute pain several times over the years.

On December 22, 2016, I had outpatient surgery for the L5-S1 problem and have had immediate relief. I will start on Physical Therapy in February. I am very happy with the results of the surgery. However, I have had chronic pain from my sciatic nerve on the right side since March, 2016. It awakens me every night 1 to 3 times. Sometimes i want to cry or scream the pain is so bad. I can't walk far or stand for any length of time, go up steps, etc. due to the pain. My doctor's only been treating the pain, until the MRI was done for my left side acute episode. Now they said they need to do a major surgery to insert rods and pins to fix the problem on my L4, which is out of alignment 7.3 mm. Im good with this because the outpatient surgery was so successful. At my last appointment I saw a new PA in my surgeon's office (My usual PA is on maternity leave.) who wants to give me steroids first and see how I do. I have had a year of constant pain, and I really don't want to go through the shots in my spine. My regular PA had recommended the surgery. Both my older brothers have had the same problems--it's a genetic issue--and they ended up with the surgery. Is it reasonable for me to ask them to just do the surgery that is inevitable? And, how long after my current surgery should I wait? How long does recovery from the major surgery take?

Last, I am very concerned that the new administration will cut Medicare coverage, without which I will be unable to pay for this surgery. Thanks for any information you can give me.

Jump to this post

@gailb I did the epidurals over a time period of 6 years. I felt like a pin cushion and "guniea pig" with all the different procedures after a while. I'm not a good canidate for surgery at this time. My husband and I are about to relocate to Florida so I have been holding off on any other procedures.

REPLY
philio66 | @philio66 | Jan 30, 2017
In reply to @paulbklyn "I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years. Had the Nevro spinal..." + (show)
@paulbklyn

I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years.
Had the Nevro spinal cord stimulator implanted 4 months ago, has helped
some, still getting night pain so I can't really sleep so called normal hours.

They are weening me off Fentanyl 75 mg now 12 mg I ran out of Tramadol
cant get it till first week of Feb. Still Take Lyrica 300 mg 2x a day,,Duloxetine
30 mg 1x day.

Pain is now in my neck and right shoulder

On my 4th pain dr he seems to be care and is encouraging.

That's my story

Hope they find something to help us all

Jump to this post

Actually, I believe that the opioids are no longer effective. I was warned by a surgeon about 7 years ago that if you take them too long, they won't work when you really, really need them. That is where I am and have begun a program to wean off gradually. I will just have to deal with the pain I have. So within 6 months or less I will really know how much pain I do have.

REPLY
lauriedr | @lauriedr | Jan 30, 2017
In reply to @paulbklyn "I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years. Had the Nevro spinal..." + (show)
@paulbklyn

I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years.
Had the Nevro spinal cord stimulator implanted 4 months ago, has helped
some, still getting night pain so I can't really sleep so called normal hours.

They are weening me off Fentanyl 75 mg now 12 mg I ran out of Tramadol
cant get it till first week of Feb. Still Take Lyrica 300 mg 2x a day,,Duloxetine
30 mg 1x day.

Pain is now in my neck and right shoulder

On my 4th pain dr he seems to be care and is encouraging.

That's my story

Hope they find something to help us all

Jump to this post

I concur that the opiods are less effective for me now, after 15 years, and that I would benefit from a dosage increase. In my situation, I do not respond to pain preventives or the usual pain abortives for my condition. Going without opiods would confine me to bed at least 5-6 days per week. As it is, I take opiods only twice per week, which allows me limited hours being upright and functional, without immense pain, vomiting, vision problems, and extreme dizziness and vertigo. My pain level averages 8 on a 0-10 scale; 9 sends me to the ER. For me, I would question the value and point of my existence without the few hours per week on opiods, which take the edge off my pain, to a more manageable 6-7. I hope and pray that you are able to wean yourself off opiods. I have decided that is not an option for me, and I will continue to self-advocate for better pain management. I appreciate and take to heart your thoughts. I wish you all the best.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Jan 30, 2017
In reply to @paulbklyn "I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years. Had the Nevro spinal..." + (show)
@paulbklyn

I'm Paul from NYC suffering with posthepetic neuralgia for almost 3 years.
Had the Nevro spinal cord stimulator implanted 4 months ago, has helped
some, still getting night pain so I can't really sleep so called normal hours.

They are weening me off Fentanyl 75 mg now 12 mg I ran out of Tramadol
cant get it till first week of Feb. Still Take Lyrica 300 mg 2x a day,,Duloxetine
30 mg 1x day.

Pain is now in my neck and right shoulder

On my 4th pain dr he seems to be care and is encouraging.

That's my story

Hope they find something to help us all

Jump to this post

A few months ago, after I started Cymbalta, I wondered how much Cymbalta was doing, so I weaned off morphine sulfate contin 90mg/day. I gave myself 3 weeks off morphine, and went back to morphine because the pain was too much. But, so far, I only take 15mg tid, half of what I was before. I plan to ask the doctor to increase the midday dose to 30mg , hoping that afternoon and evening will be more tolerable. I still have a few more things to try, so I'm still holding out hope.

Jim

REPLY
View MoreView Less
Please sign in or register to post a reply.