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.

@wsh66

How about if everyone who reads this fills in the blank. I don’t feel pain when…..?

For me, I don’t feel pain when I’m petting my dogs and they’re showing me affection. Now you try it.

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I would have expected that from the screen name “sandytoes”! The coast does always seem to make things better.

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My name is Georgia and I’m from Atlanta, Ga. I have arachnoiditis. Pain for 10 years and getting worse last 2 years. I’m close to not being able to walk now. You al are right about doctors blowing you off. I’m so desperate for pain relief, but now with this “opioid”crisis, seems can’t get much more than baby aspirin.
I’m housebound in a recliner now; can barely make it to kichen, then standing is so painful.my left leg is useless. Good to know other people understand. Our families get so tired of us talking about pain, but how can you not when it is so bad.

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Hi Georgia,

Welcome to the group. What type of relief have you sought from the pain? Do you have prescriptions or any medications or therapy that you complete? Is there anything that has produced better results for you than other things?

It can be hard, you can only say you are in pain so many times before you start to feel guilty or imagine that those around you begin to resent the complaining, but I have found that so much of that is just guilt I deflect on to them, and really they are just feeling as helpless as you are.

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I am Oregon girl and I live with pain day in and day out

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16+ physicians (most of them at Mayo Clinic – Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking, and up until recently still thought, that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case – not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show…'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Thomas Shives. Dr. Stephen Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. William Cross who removed a broken distal screw previously holding my nail in place – failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain – fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar – that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy – stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 – July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck – no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers – to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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@leahklein

16+ physicians (most of them at Mayo Clinic – Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking, and up until recently still thought, that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case – not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show…'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Thomas Shives. Dr. Stephen Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. William Cross who removed a broken distal screw previously holding my nail in place – failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain – fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar – that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy – stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 – July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck – no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers – to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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Maybe it's not related to your previous issues. Perhaps you have a knee that needs to be replaced. You mention running, you run long enough, you will need new knees. I've had to accept that that is where I'm at. If I spend too much time on the cross trainers, I wake up with a note on my pillow from my knee's, "We''ll come back when you stop."

I also use a number of alternative therapies which may not cure me but they increase my sense of well being enough that my pain becomes more manageable. I use Qigong, meditation, Healing touch, exercise, rubs, (ketoprofen), and I used to do yoga. I also have a pain pump that I got at the U of MN. It is the "bomb". Keep looking, if the Docs ain't gettin it, look to the alternatives. Qigong is also the , "bomb". Good luck.

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@galady

My name is Georgia and I’m from Atlanta, Ga. I have arachnoiditis. Pain for 10 years and getting worse last 2 years. I’m close to not being able to walk now. You al are right about doctors blowing you off. I’m so desperate for pain relief, but now with this “opioid”crisis, seems can’t get much more than baby aspirin.
I’m housebound in a recliner now; can barely make it to kichen, then standing is so painful.my left leg is useless. Good to know other people understand. Our families get so tired of us talking about pain, but how can you not when it is so bad.

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@galady,

I see you mentioned having arachnoiditis. You may be interested in meeting some of our other members discussing this rare condition. Here are a few discussions you may find worth your time:

https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

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@leahklein

16+ physicians (most of them at Mayo Clinic – Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking, and up until recently still thought, that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case – not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show…'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Thomas Shives. Dr. Stephen Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. William Cross who removed a broken distal screw previously holding my nail in place – failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain – fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar – that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy – stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 – July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck – no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers – to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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Is your pain pump for back pain or other all over pain?

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I believe it for all over. A catheter runs up your spine and leaks out about 3 mg of Dilaudid every 24 hours. It has been about 80% affective on all my pain. It has not allowed me to walk without pain. It so much better than large doses of oral drugs. I rarely have any pain when seated or lying down. I used to have serious pain 24 hours a day. My guy is Dr. Park at MHealth in Mpls. 612-624-6666

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Hello….I’m Janine and feel extreamly greatful to be a member of this community. I have a story that began in 1997 and continues today, some good years and some not so good. This year has been the worst I have experienced, I don’t know if it’s my age (71) or the longer this thing has ahold of ones body the worse it gets. I have two questions I would appreciate input on. The first is does the disease get worse the longer it is in your body? And secondly I need to chat about meds with someone from AZ, we are selling our home and moving to that great dry climate. Currently I live in NC and my Dr works with a pain mgmt Dr to keep me comfortable and my Hugh fear is I will not have the same exceptional care in AZ as I do here. So glad to be here!!!

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@leahklein

16+ physicians (most of them at Mayo Clinic – Rochester), 20+ conditions/ailments/diseases ruled out and countless therapies, procedures, injections and you name it have been tried. I'm disappointed to say the least. I grew up going to Mayo Clinic Rochester my whole life. I now live about 3.5 hours away out of state. I grew up thinking, and up until recently still thought, that Mayo Clinic was the place you go when where you've been doesn't have the answers. I've heard, "Sorry I can't help." more than I can count. The doctor's I've seen have ruled out their specialty problem and closed my case – not referring me elsewhere, not helping me think outside the box and certainly not following up to see how I'm doing. I literally am looking for a doctor who is a replica of Dr. House from the hit show…'House'. In 2007 I had cystic fibrous dysplasia in my left femur. Successfully removed & repairs by Dr. Thomas Shives. Dr. Stephen Sems inserted a nail for healing and stability. Typical recovery and rehab from that surgery. Fast forward 2013, pain begins in my knee during my regular running exercise. I was seen in 2013 by Dr. William Cross who removed a broken distal screw previously holding my nail in place – failed attempt to remedy my knee pain. 2013-2014 saw a slow but steady increase in my knee pain from just daily walking with additional pain into my left interior thigh and groin. 2014 had a meniscus tear repair by Dr. Nwakama at SW MN Orthopedics. This again was an attempt to remedy my knee pain – fail. 2014-2016 increased intensity and frequency of pain with the solidification of a clear and unwavering pain path from left groin to behind left knee cap. You could take a string, tie it in my groin and tie it behind my knee cap and pluck it like a guitar – that is my pain path. 2016 due to my extensive history with Mayo Clinic, my WI primary care physician sent me back. Dr. Sutka, finding "nothing wrong" referred for intense physical therapy – stressing that I should find a physical therapist willing to be aggressive and think outside the box. January 2016 – July 2016 weekly physical therapy. This did not yield positive results as my pain was so intense that the majority of exercises could not be completed. Physical Therapy approaches tried: routine PT exercises for specified areas of pain, dry needling, meditation, ultra sound, massage therapy and mirror therapy. Seeing no results, my PT recommended I see a Pain Specialist. Sept. 2016 I had SI Joint Injection. Oct 2016 S Nerve Block Lumbar injection. Both no help. Dec. 14, 2016 Dr. Mangold and Dr. Sems (Mayo Clinic) found nothing wrong with the nail inserted almost 10 years prior and said they couldn't help. Dec. 15, 2016 Ortho consults with Dr. Kollitz and Dr. Mabry. Their thought was possible dysplasia of the hip and referred me to Dr. Trousdale who said any hint of dysplasia he was seeing on my x-ray was no cause for concern and said he could not help. Jan 6, 2017 left hip injection with Dr. Duck – no help. Jan 6, 2017 Pain consult with Dr. Pittelkow, requested i follow up with Dr. Mary Gutierrez. Feb 3, 2017 follow up with Dr. Gutierrez, recommended trial nerve block of left knee for possible ablation. March 21, 2017 left knee nerve block by Dr. Michael Carl of Neuroscience Group in Neenah, WI. No help. March 2017-June 2017 several attempts to contact Dr. Gutierrez's office to follow up on neuromodulation which was another recommendation of hers – to this day i have not had a response. February 2018 pain is at a constant 2 out of 10 with 7 out of 10 by noon through the night. I haven't taken one step with my left leg without pain in YEARS. I need help. I need an advocate at Mayo Clinic and a doctor who is willing to explore any and everything for an answer. I'm 29 years old and the thought of "pain management" (which has been 100% unsuccessful) is just not an option. ANY and ALL suggestions/advise welcome!!!!

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Does the pain pump work?

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@wsh66

I believe it for all over. A catheter runs up your spine and leaks out about 3 mg of Dilaudid every 24 hours. It has been about 80% affective on all my pain. It has not allowed me to walk without pain. It so much better than large doses of oral drugs. I rarely have any pain when seated or lying down. I used to have serious pain 24 hours a day. My guy is Dr. Park at MHealth in Mpls. 612-624-6666

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Did it hurt to have it placed on your spine.

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