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.

Tell me more about rfa

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@suesiegel

I am 63 years old. I was diagnosed with fibromyalgia, CMS and chronic fatigue syndrome in 2007. At the time I had a viral panel done that showed that, while I had antibodies for nearly everything except Lyme Disease, I had an active Epstein Barr infection. While I have never been able to make the connection, I don’t believe in coincidences.

I am lucky enough to be able to work from home. This gives me the schedule flexibility to function.

I have been through all of the medication protocols that the “experts” around here come up with, and none have worked for me. I had terrible reactions to Lyrica and Cymbalta, and the rest didn’t work. Despite what doctors think, anti-depressants do not work as pain killers for me.

My most recent issue has created terrible problems for me. 16 months ago I had serious open rotator cuff surgery. This required amputation of the end of my collarbone to remove large bone spurs, as well as repair of a large, full-thickness rotator cuff tear. I went through 6 months of PT and continue to work out at a gym. However, I still have severe shoulder pain. I have seen pain management specialists, neurologists and rheumatologists. Those who didn’t make me worse told me to get lost.

I really think I have reached the end of my rope, and don’t seem to have anywhere else to turn.

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@beverlymellskog Do not know who you are addressing, but gabapentin
does nothing for me – fibro or chronic back pain. ladyjane86

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Hi my name is Gary suffer from severe chronic pain surgery and my brachial plexus, a stinging pins needles and loss of left hand , Don”t know what to do. Multiple doctors medications all very scary stuff

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hi name is Gary

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@jimhd

I’m Jim, turning 66 tomorrow, 8/10/16. I’m here because of idiopathic peripheral neuropathy pain and for mental health issues, specifically depression, anxiety and PTSD. I’ve been seeking help for the chronic pain for around 3 years. Clinical depression was diagnosed 13-14 years ago. I’ve seen therapists between 2006 and 2015, and see a psychiatrist to check in with meds every 3 months. Dealing with such long term depression has been difficult and discouraging. I’ve tried every medication available to treat neuropathy, now on Cymbalta, tapering off morphine sulfate. Duloxetine (Cymbalta) is the last med on the list.

I retired at 55 on the advice of doctors and a psychiatrist, and was approved for Social Security disability for mental health, including multiple suicide attempts. My wife and I have only my Social Security income, but we’re fortunate to own our home, with no mortgage and no car payments, so with EBT and a couple of other assistance resources, we can survive.

I don’t know how much of this introduction is made public, so I’ll leave it at that.

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@jimhd

I’m Jim, turning 66 tomorrow, 8/10/16. I’m here because of idiopathic peripheral neuropathy pain and for mental health issues, specifically depression, anxiety and PTSD. I’ve been seeking help for the chronic pain for around 3 years. Clinical depression was diagnosed 13-14 years ago. I’ve seen therapists between 2006 and 2015, and see a psychiatrist to check in with meds every 3 months. Dealing with such long term depression has been difficult and discouraging. I’ve tried every medication available to treat neuropathy, now on Cymbalta, tapering off morphine sulfate. Duloxetine (Cymbalta) is the last med on the list.

I retired at 55 on the advice of doctors and a psychiatrist, and was approved for Social Security disability for mental health, including multiple suicide attempts. My wife and I have only my Social Security income, but we’re fortunate to own our home, with no mortgage and no car payments, so with EBT and a couple of other assistance resources, we can survive.

I don’t know how much of this introduction is made public, so I’ll leave it at that.

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Hi @upnorthnancy, it looks like you tried to post a message, but it is blank. Please send me a note using this contact form https://connect.mayoclinic.org/contact-a-community-moderator/ if you’re experiencing tech issues.

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@jimhd

I’m Jim, turning 66 tomorrow, 8/10/16. I’m here because of idiopathic peripheral neuropathy pain and for mental health issues, specifically depression, anxiety and PTSD. I’ve been seeking help for the chronic pain for around 3 years. Clinical depression was diagnosed 13-14 years ago. I’ve seen therapists between 2006 and 2015, and see a psychiatrist to check in with meds every 3 months. Dealing with such long term depression has been difficult and discouraging. I’ve tried every medication available to treat neuropathy, now on Cymbalta, tapering off morphine sulfate. Duloxetine (Cymbalta) is the last med on the list.

I retired at 55 on the advice of doctors and a psychiatrist, and was approved for Social Security disability for mental health, including multiple suicide attempts. My wife and I have only my Social Security income, but we’re fortunate to own our home, with no mortgage and no car payments, so with EBT and a couple of other assistance resources, we can survive.

I don’t know how much of this introduction is made public, so I’ll leave it at that.

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I was a minister for 35 years when I retired, and will always be as active
in the church as I’m able. My last two years in ministry were extremely
difficult because of the deep depression I was living with. We moved away
from that town ten years ago, and I continued to be in a dark place for a
few more years.

I have always enjoyed working outside in the yard, as well as painting
(houses) and making things with wood. I’ve been a volunteer for Hospice for
a few years, visiting patients weekly. My therapist was unsure about me
doing that, but I think it’s been helpful. I’ve always enjoyed visiting
people as a pastor, and this has fitted well with me. Many of the patients
want me to pray with them, though I don’t impose my faith or beliefs on
anyone. Mostly, I’m there to listen and encourage.

Our home had very little landscaping when we moved here, so I pretty much
had a blank slate. Now there are lots of plantings, an orchard, a
combination perennial/shrub/tree /vegetable garden that’s fenced to keep
the deer out. I painted houses and other buildings to supplement my church
income, and have painted our house twice, the barn twice, a garage and a
new storage building for my wife’s sewing supplies.

I play the piano for a Sunday evening service, something I’ve done most of
my life. I have a B.A. in music, with a piano major.

I haven’t seen a therapist for about a year now – there’s no one in town
who accepts Medicare. There are days when I wish I could, though summer is
a better season for my mental stability. I take Bupropion for depression,
Klonopin for anxiety, and Cymbalta for peripheral neuropathy, plus a few
other meds. I often struggle with suicidal thoughts when I open the
medicine cabinet at bedtime. I have plenty of things I could OD on, but
those thoughts aren’t nearly as strong as they were 5 years ago. In 2005
and 2006, suicidal ideation was a very real issue, and I attempted several
times, and spent a month in a small, new facility for people who have
attempted, and a second shorter stay a few months later. After all the
counseling and therapy, I’m better equipped to handle the thoughts.

I must stop writing and go install the door on my wife’s new shed, and do
what I do every day – water lawns and gardens. It’s a job that’s never
finished.

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Hi my name is sue and i have found that finding out everything i can about my deseases and conditions helps to find treatments. I also found theres no one thing that will work. I have Degenerative disc disease with many damaged disc’s. Along with with that i have different injuries from over the years and my other diagnosis. Its a degenerative desease so it started young and slowly i had to adjust to losing different parts of my life of activity. So i understand what alot of you are going through. I go to a pain clinic and i like it there and my Dr. But I’ve changed treatments many times over the years. I still have pain crises even with the meds I’m on and epidurals I have.

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@jimhd

I’m Jim, turning 66 tomorrow, 8/10/16. I’m here because of idiopathic peripheral neuropathy pain and for mental health issues, specifically depression, anxiety and PTSD. I’ve been seeking help for the chronic pain for around 3 years. Clinical depression was diagnosed 13-14 years ago. I’ve seen therapists between 2006 and 2015, and see a psychiatrist to check in with meds every 3 months. Dealing with such long term depression has been difficult and discouraging. I’ve tried every medication available to treat neuropathy, now on Cymbalta, tapering off morphine sulfate. Duloxetine (Cymbalta) is the last med on the list.

I retired at 55 on the advice of doctors and a psychiatrist, and was approved for Social Security disability for mental health, including multiple suicide attempts. My wife and I have only my Social Security income, but we’re fortunate to own our home, with no mortgage and no car payments, so with EBT and a couple of other assistance resources, we can survive.

I don’t know how much of this introduction is made public, so I’ll leave it at that.

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@jimhd Jim: Thank you for sharing more of your life story with us at Mayo Connect. How wonderful that you still involve yourself with people who have needs, especially Hospice. There is a great deal of strength that comes from communing with those who are facing end of life issues with courage and strength. I continue to admire the way you have scaled the mountain called depression and reached out to help others and keep active!

Are you familiar with an organization called Pastors in Residence (PIR)? It is an organization for pastors who have and/or had problems remaining in the ministry for one reason or another and PIR offers them support and help in adjusting to the changes. I’m not sure what area you live in, but I know that PIR has “churches of refuge” and are always looking for more pastors to be involved. If you go to their website: pirministries.org, you can take a look a their specific ministry and see the supportive activities they offer. Even if you don’t involve yourself in their work, you might find it interesting to see what they are doing. Your story inspires and helps me, please continue to share with us! Have a blessed Sunday.

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@briansr

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Hi Brian,
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Thanks
Colleen

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@mojoearle

Hello group! I’m almost 34 years old and suffer from Chronic pain. I have had 16 surgeries and have been a patient at the Mayo Clinic in Scottsdale for almost 3 years now but I live in Idaho and have to travel down to Arizona every three months for a month or so of treatment and testing and Doctor appointments and just even thinking of packing and flying down makes me hurt even more. But in all seriousness I do struggle with the long trip down to Scottsdale and then making it to all of my appointments and giving hundreds of vials of blood and doing all the test and my existence is just painful all the time 24/7! I have a pain Doctor in Boise but they make everyone at their clinic only take extremely low doses of pain medication a day and DONT GET ME WRONG I WOULD KILL TO NEVER HAVE TO EVEN LOOK AT A NARCOTIC PAINKILLER AGAIN BUT I DONT EVEN GET TO A 5-6 ON THE PAIN SCALE!

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I went through their Pain Rehab program last year. it helped me a lot in “managing” my pain and I would heartily recommend it for all dealing with chronic pain. It was a three weeks, 8 hrs. per day. It taught me ways to avoid painful activities/ situations and to change my ways to avoid more pain. It also got me off Opioids which I would recommend for all who suffer. They present a real “slippery slope” in your life. I was technically driving under the influence for about 10 years. Thankfully I never got caught.

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@suesiegel

I am 63 years old. I was diagnosed with fibromyalgia, CMS and chronic fatigue syndrome in 2007. At the time I had a viral panel done that showed that, while I had antibodies for nearly everything except Lyme Disease, I had an active Epstein Barr infection. While I have never been able to make the connection, I don’t believe in coincidences.

I am lucky enough to be able to work from home. This gives me the schedule flexibility to function.

I have been through all of the medication protocols that the “experts” around here come up with, and none have worked for me. I had terrible reactions to Lyrica and Cymbalta, and the rest didn’t work. Despite what doctors think, anti-depressants do not work as pain killers for me.

My most recent issue has created terrible problems for me. 16 months ago I had serious open rotator cuff surgery. This required amputation of the end of my collarbone to remove large bone spurs, as well as repair of a large, full-thickness rotator cuff tear. I went through 6 months of PT and continue to work out at a gym. However, I still have severe shoulder pain. I have seen pain management specialists, neurologists and rheumatologists. Those who didn’t make me worse told me to get lost.

I really think I have reached the end of my rope, and don’t seem to have anywhere else to turn.

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Hi, Sue. It’s been 10 days since you wrote this. I’m wondering how you’re doing. You sounded pretty discouraged, and I can surely relate to that. Do you have someone to talk to about how you’re feeling? Talk therapy has been a help to me. I don’t know if I would have been able to climb out of the dark hole of depression without the help of counselors. I’m still not the same person I was pre-depression, and maybe 6 is my new 10. I have learned one thing, which is redirecting my thoughts. When suicide comes up, I recognize the thought and move my focus to something else. Sometimes I pray at times like that, and I find that when I do, the negative thoughts become much less obtrusive.

It’s time to get to sleep, so I have to stop writing. I’ll pray that you will find encouragement that will offset some of the discouragement.

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I am glad the Mayo Rehab worked for you. I was hoing to do a 3 week
inpatient headache clinic in Chicago, until I realized I am already doing
everything they offer. I called Mayo, but they want me off opiates for 2
months before seeing me. I won’t do it. I only get 2 doses per week, I have
never nor would I ever drive while taking them (even though I do not feel
high or impaired in any way while taking them. It is just common sense not
to drive while on narcotics.) The few hours a week of pain de-escalation I
get from percocet give me the will to live, to keep fighting. It allows me
to pay bills online, take a shower, do a load of laundry. I have simple,
low-expectation goals. Someday a better cure may come along for migraine. I
have taken percocet for 15 years or more without incident, addiction, or a
slippery slope. Everyone is different. We also must recognize that pain
medication decisions are often being made by legislators, insurance
companies, and health care providers trying to protect their licenses.
Politics is driving medicine’s attitude regarding opiates as much as
anything else.

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I see there hasn’t been any activity in this discussion group for a while so I’ll look for another one.

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