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.

@092959

Hi, I’m Karen and I have fibromyalgia.

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Hello Karen, I also have Fibromyalgia. It is such a challenging condition isnt it? I have been unwell 16 years. Please feel free to msg me.

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@092959

Hi, I’m Karen and I have fibromyalgia.

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Thanks for replying. I will email you if I have any questions

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@092959

Hi, I’m Karen and I have fibromyalgia.

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SusieQ and sunshineme, you may also be interested in following the Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/ There are several members sharing about living with fibromyalgia there, in particular you may be interested in these discussions:

Managing fibromyalgia http://mayocl.in/2cYVbTL
Fibromyalgia effects my pupils http://mayocl.in/2co0y2P
Autoimmune Diseases and Fatigue http://mayocl.in/2cODJkx

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Hi, I have suffered with chronic pain since 1992. I injured my back at work and was unable to stand up straight, by noon I was seeing my doctor. He refered me to an orthopedic specicialist, within 6 months I had physical therapy, all kinds of test, then they did back surgery. The surgery took 8 hours, and I woke up on pain pump & unable to turn myself for a week, left hospital with no rehab. being done and in a wheelchair. Within 30 days I was back in ER in excruating pain, bone fragments had gotten loose and were down in my sciatica area. They did another 9 hour surgery right away. I woke up in ICU with spinal miningitis. Left hospital again in wheelchair, determined not to stay in wheelchair because my youngest son was only 2 at the time. I did make it out of that chair, and was able to hold my son again, but was never able to work again, ( really miss working), and found out that the metal put in my back during surgery was not FDA approved for backs only for hip & knee surgery. So they removed the plates & screws, and my back began falling apart literally…so now my strengh in my back is awful, disk are all falling apart, herniated & ruptured. I am on total disability now, I had a very good pain doctor for 13 years, he went on to become a Medical Director for Hospic. So I haven’t been able to find a good pain doctor since, that has been over a year. I suffer daily with pain so bad that I am not even hungry anymore, can’t sleep, No Quality of Life at all!!!!! Can no longer live alone, have caregiver, alot of depression…I have a 2 1/2 year old grandson that I seldom see because of my pain. I don’t want him to see me in all of this pain, it just makes me cranky & so not myself. In fact I have not really been myself since my first back surgery. How do they expect us to keep fighting to survive when doctors won’t help us to fight the pain, it really gets old and very hard to keep on going…can anyone relate??!! God Bless All..Gina54

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Hi my name is Candy Jackson, I live in Arkansas, I am a chronic pain suffer… I’ve been coming to Mayo since August of 2016 in Rochester Minnesota, if it wasn’t for them I would still be wondering what was wrong with me..

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@megwill100

Hi my name is Candy Jackson, I live in Arkansas, I am a chronic pain suffer… I’ve been coming to Mayo since August of 2016 in Rochester Minnesota, if it wasn’t for them I would still be wondering what was wrong with me..

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Hi Candy, I am Hosta, (Eve) You said you have been going to Mayo since 2016, What kind of treatment are they using and is it helping? Where is you pain coming from? I would like to know because I would like to go to Mayo.

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Rob here. Back pain for 27 odd years. 3 major operations including a double spinal fusion l4 L5 L5 S1. In 94 96 and 97. Narcotics changed to Oxy from codeine several years ago (good thing). Have a nerve blockh done at local hospital every 4 months. I use bridge, the card game as a distraction. take Naproxene for arthritic pain. have inversion table. Pain specialist gives me iMS needles and some frezzing every 2 weeks. Anti depressant. We just got a new Lab puppy and I am sore from playing and training. Had accupuncture/chiro/physio, gravity chairs, epidural needles with coctail of freezing and cortisone. But siatica pain went after disc removal. yah! Still unable to do most things. Take care out there.

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My connection name is Fifi. I have narrowed space between C5-C6, perhaps a little in C1 too. I also have TMJ and some fibromyalgia. I don’t think my nerve is pinched in the neck but I have chronic headache travel from left shoulder thru the neck to the bottom of my head. Sometime, my ear and eye also hurt on the left side. I have tried everything over the years- acupuncture, steroid injections, facet injection, Botox, physical therapy, and chiropratic. Nothing really helps too much. I went to Chiro who manipulate your neck last year. It helped but I was worried about stroke possibility. I quit for a while but went back this year. It’s not working anymore and cause more pain. The reason I went back because the headache got worse and I can’t worry about stroke anymore. I am getting more desperate. I take low dosage doxepin every night and Valium occasionally. I also take hydrocodone when the pain is really bad. I don’t like medication and very sensitive to most of other med. I am thinking about disc replacement. Any one can recommend where to go and what dr. To see? Thank you

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@robeaver

Rob here. Back pain for 27 odd years. 3 major operations including a double spinal fusion l4 L5 L5 S1. In 94 96 and 97. Narcotics changed to Oxy from codeine several years ago (good thing). Have a nerve blockh done at local hospital every 4 months. I use bridge, the card game as a distraction. take Naproxene for arthritic pain. have inversion table. Pain specialist gives me iMS needles and some frezzing every 2 weeks. Anti depressant. We just got a new Lab puppy and I am sore from playing and training. Had accupuncture/chiro/physio, gravity chairs, epidural needles with coctail of freezing and cortisone. But siatica pain went after disc removal. yah! Still unable to do most things. Take care out there.

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@robeaver Oh, so like me…fusions, up to 5 surgeries bec had to have the nerve stimulator removed. None of the needle procedures work on me. And I do not respond to pain killers or have very bad reactions to them. Waiting to see if a radiofrequency ablation that I had about 5 weeks ago will show some relief to the 7 to 9 pain in lumbar. Also, have had painful compression fractures. Since nothing works, I have just started on a gabapentin schedule where I have a dosage that is upped little by little. It is something that is finally working some. My neurosurgeon said sometimes the simple and cheaper meds can work. Certainly, understand all your problems – mine have gone on nearly 30 years….
@ladyjane85

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@gina54

Hi, I have suffered with chronic pain since 1992. I injured my back at work and was unable to stand up straight, by noon I was seeing my doctor. He refered me to an orthopedic specicialist, within 6 months I had physical therapy, all kinds of test, then they did back surgery. The surgery took 8 hours, and I woke up on pain pump & unable to turn myself for a week, left hospital with no rehab. being done and in a wheelchair. Within 30 days I was back in ER in excruating pain, bone fragments had gotten loose and were down in my sciatica area. They did another 9 hour surgery right away. I woke up in ICU with spinal miningitis. Left hospital again in wheelchair, determined not to stay in wheelchair because my youngest son was only 2 at the time. I did make it out of that chair, and was able to hold my son again, but was never able to work again, ( really miss working), and found out that the metal put in my back during surgery was not FDA approved for backs only for hip & knee surgery. So they removed the plates & screws, and my back began falling apart literally…so now my strengh in my back is awful, disk are all falling apart, herniated & ruptured. I am on total disability now, I had a very good pain doctor for 13 years, he went on to become a Medical Director for Hospic. So I haven’t been able to find a good pain doctor since, that has been over a year. I suffer daily with pain so bad that I am not even hungry anymore, can’t sleep, No Quality of Life at all!!!!! Can no longer live alone, have caregiver, alot of depression…I have a 2 1/2 year old grandson that I seldom see because of my pain. I don’t want him to see me in all of this pain, it just makes me cranky & so not myself. In fact I have not really been myself since my first back surgery. How do they expect us to keep fighting to survive when doctors won’t help us to fight the pain, it really gets old and very hard to keep on going…can anyone relate??!! God Bless All..Gina54

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Wow, You really need to see a neuro surgeon for your back, a pain specialist, and what has been my savior for pain is Medical Cannabis. I’ve had Peripheral Neuropathy for about 12 years which caused me to lose my job and go on disability at age 57. I took numerous of prescribed meds for pain with only minimal relief from the. Last year I went through Mayo’s Pain Rehab course which has helped me “manage” my pain, but it is still a burden to live with. This summer my primary MD asked me how I felt about Medical Cannabis. After thinking it over for about 10 seconds, I replied “why not”. I am now PAIN FREE!!!! my only complaint is my seriously numb feet and lower legs. Walking is slightly more difficult due to this. But, all in all. I would recommend this treatment.

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@fifi

My connection name is Fifi. I have narrowed space between C5-C6, perhaps a little in C1 too. I also have TMJ and some fibromyalgia. I don’t think my nerve is pinched in the neck but I have chronic headache travel from left shoulder thru the neck to the bottom of my head. Sometime, my ear and eye also hurt on the left side. I have tried everything over the years- acupuncture, steroid injections, facet injection, Botox, physical therapy, and chiropratic. Nothing really helps too much. I went to Chiro who manipulate your neck last year. It helped but I was worried about stroke possibility. I quit for a while but went back this year. It’s not working anymore and cause more pain. The reason I went back because the headache got worse and I can’t worry about stroke anymore. I am getting more desperate. I take low dosage doxepin every night and Valium occasionally. I also take hydrocodone when the pain is really bad. I don’t like medication and very sensitive to most of other med. I am thinking about disc replacement. Any one can recommend where to go and what dr. To see? Thank you

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I just tried medical cannabis for the first time. Very impressed and hopeful it continues to work. Why not give it a try?

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@robeaver

Rob here. Back pain for 27 odd years. 3 major operations including a double spinal fusion l4 L5 L5 S1. In 94 96 and 97. Narcotics changed to Oxy from codeine several years ago (good thing). Have a nerve blockh done at local hospital every 4 months. I use bridge, the card game as a distraction. take Naproxene for arthritic pain. have inversion table. Pain specialist gives me iMS needles and some frezzing every 2 weeks. Anti depressant. We just got a new Lab puppy and I am sore from playing and training. Had accupuncture/chiro/physio, gravity chairs, epidural needles with coctail of freezing and cortisone. But siatica pain went after disc removal. yah! Still unable to do most things. Take care out there.

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Thank you for your understanding. Hope that you find some relief.

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I wanted to try desperately but we live in Florida. It is not legal here yet. I don’t know how to get some. I know lots people here use but I have no source. I don’t know why. May be because I don’t look like the type. I am not worry about addiction. I think I am not the type.

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@gina54

Hi, I have suffered with chronic pain since 1992. I injured my back at work and was unable to stand up straight, by noon I was seeing my doctor. He refered me to an orthopedic specicialist, within 6 months I had physical therapy, all kinds of test, then they did back surgery. The surgery took 8 hours, and I woke up on pain pump & unable to turn myself for a week, left hospital with no rehab. being done and in a wheelchair. Within 30 days I was back in ER in excruating pain, bone fragments had gotten loose and were down in my sciatica area. They did another 9 hour surgery right away. I woke up in ICU with spinal miningitis. Left hospital again in wheelchair, determined not to stay in wheelchair because my youngest son was only 2 at the time. I did make it out of that chair, and was able to hold my son again, but was never able to work again, ( really miss working), and found out that the metal put in my back during surgery was not FDA approved for backs only for hip & knee surgery. So they removed the plates & screws, and my back began falling apart literally…so now my strengh in my back is awful, disk are all falling apart, herniated & ruptured. I am on total disability now, I had a very good pain doctor for 13 years, he went on to become a Medical Director for Hospic. So I haven’t been able to find a good pain doctor since, that has been over a year. I suffer daily with pain so bad that I am not even hungry anymore, can’t sleep, No Quality of Life at all!!!!! Can no longer live alone, have caregiver, alot of depression…I have a 2 1/2 year old grandson that I seldom see because of my pain. I don’t want him to see me in all of this pain, it just makes me cranky & so not myself. In fact I have not really been myself since my first back surgery. How do they expect us to keep fighting to survive when doctors won’t help us to fight the pain, it really gets old and very hard to keep on going…can anyone relate??!! God Bless All..Gina54

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I have seen neurosurgeon and pain specialist. Nothing helps too much. It is not legal in Florida yet to use M. I have no source for that.

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I would love to try too, but like you live in Florida.

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