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.

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

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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?

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@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.

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@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

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@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?

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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

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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

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@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

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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.

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@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.

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@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.

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@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

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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
@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
@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

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Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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Mayo Clinic Info new experience for me-
been treated for severe bursitis with cortisone shots (both hips)–think trauma from shot in one leg (modest residual lymphedema from 5 year old mastectomy) resulted in extensive swelling in ankle/foot. Swelling is down, now have pain in that foot–feels like I am walking on potatoes and have extensive cramping. Is there something I can do to relieve this?

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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Robin, I feel very badly for you, but I am not convinced I have anything to add. Only, to keep on keeping on. We have a woman at church who has a lot of the same stuff, I think. She comes to church in her “electric cadillac”, but she is there every time the weather is good enough. I just appreciate her being there. She often pulls up beside me, and sings and participates. I thank her every week for being there. And same to you.

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@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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Hi Robin I’m Paul suffering with nerve pain 2 1/2 years after a bout with shingles.

On my 4th pain dr, the third talked me into getting a spinal cord stimulator before doing other therapies
and it really hasn’t done it’s job.

My new dr is trying different meds and next month will change some of them.

We just have to push ourselves into enjoy some kind of life.

I hope you get some relief soon

Have a great day

Paul

REPLY
@rsuda

Hi my name is Robin. I am looking for support and can also be supportive to others with chronic pain. I had surgery May of 2016 on the t-9 in my spine for a very large herniated disc. I really think it had been there most of my life. At first I had remarkable pain reduction but in a few months my back burned like a horrible sun burn. I was told it was neuropathy and that my nerves were affected from my back procedure. I have used so much advil and tylenol it was dangerous. I am allergic to most pain pills and break out in hives so stay away form them. I also am a Type 1 diabetic for 35 years so my Dr. really fround on the over the counter meds and put me on Neurontin. I am now on a dose of 300 mg tid. Plus I wear a lidocaine patch. I have done months of Physical therapy with some relief. I am now being seen by pain specialist today for the results of my recent MRI. Yuck
I want to do more activites, walk, play with the kids, enjoy gardening and my pets. I am married but not much fun because every night I sit with an ice bag on my back. Overall I am very happy and continue to do things. My friends and family can tell I hurt and this makes me sad. What do you think? I have never been a support system before but my Nurse Practitioner said to try it. hank you Robin

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Hello @rsuda (Robin), welcome to Connect. Thank you for sharing your story. I enjoyed the part where you shared that you are still happy and continue to do things despite your pain. I am glad a few members jumped in to welcome you as well. You will find that the Chronic Pain group has many supportive and active members with a LOT of experiences. We are glad to have another willing supporter as well.

You mentioned a few different issues in your post, and I would like to give you a few links to discussions that talk specifically about those:

– Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq (discussions take place regarding various neuropathy)
– Diabetes and Endocrine System, http://mayocl.in/2eUNVZY
– What to expect with back surgery, http://mayocl.in/2lfVI81 (brief discussion, but I think your input could spark some great conversation)

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