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.

I never had any problems in Arizona. Except extreme heat. You might have to curtail you outdoor time to shady days and evenings. But, do NOT move to Texas. The leaders of the government here seem to think they can control us by not having the meds we need available. Now that the Federal govt is getting involved, we are facing hard times.

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Hi all I am lost, can you point me to the comments of the last hour please.

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@janet111

Hi all I am lost, can you point me to the comments of the last hour please.

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I feel like a little one in diapers with thumb in mouth, holding her bottle crying MaMa. Is this what we call fibro fog!

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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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Thank you for your encouragement. I did receive a call back from Mayo regarding a neurostimulator. I'm cautiously optimistic.

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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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if you go in the hospital and have an operation so it's painless. the pump is on the left side of my stomach. I don't remember any pain at all after the surgery. Just make sure you don't go home until your bladder opens completely and you pee like a racehorse. just take that as good advice or I'll tell you what happened to me, a Calamity of my own doing.

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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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Like a charm. Better than monkeys in clown suits dancing on your kitchen table.

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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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The best part is, when you have pain, you pick up your little remote control, called a bolus. You turn it on and you hold it over the spot where your pump is on your tummy, you hold the button down and it gives you an extra bump of Dilaudid. The pump gives me 2.75 mg a day evenly over the course of 24 hours. I have another one mg of Dilaudid which is broken into 10 doses that I can give myself once an hour 10 times in 24 hours. it gives you a great sense of control. My doc has also left me with very small doses of Narcotics to take orally. theoretically they are not enough to do me any good but they function is a very helpful placebo, so he says. I think every little bit helps and I still take Tylenol from time to time for headaches or arthritis pain, I take Lyrica for neuropathy and I also take amitriptylin for these very extreme pains that I get shooting through my toes. all in all I'm in very good shape. The last two drugs I mentioned Lyrica and amitriptyline I need because I'm a Survivor of a very rare cancer which left me with its own kind of pain from the chemo treatments. Hopefully you never go there. And don't forget to meditate. and don't forget to take Qi Gong.

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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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@oregongirl

I don't know if you're referring to the spinal cord stimulator implant, but if you are, there are just a couple of small incisions, so surgical pain is low. Recovery takes 6 weeks, though, to allow the body to heal the leads into the nerves. No bending, twisting or lifting.

Jim

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@janet111

Hi all I am lost, can you point me to the comments of the last hour please.

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@janet111

If you click on view and reply, you'll be directed to the discussion you're in. If you want to see conversation from another discussion, go to the chronic pain home page and click on the discussion you're interested in.

Jim

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@janet111

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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@janet111

What kind of pain do you experience?

By the way, if you respond to something someone writes, it's very helpful if you enter their name somewhere. My habit is to write the name as a header, as you see at the top of this note. It's important to use the right format, so you type the @ sign, followed by the name, with no spaces. I hope this helps you navigate the site more easily.

Jim

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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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I grew up in Minnesota. I wish I were still there. The medical is amazing in Minnesota. I attended the U of M and had one of my babies at the hospital there. YEARS ago

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@janet111

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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No problems in AZ you will find that Marijuana is available also. But don't move to Texas. Nothing available. MAYO is in Arizona also.

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@janet111

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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Arizona is good medical. Mayo is there also. My Texas Medical is wonderful, but no curtailing the pain makes it very hard. I had two infustion in last month. They seem to help for about 3 to 4 days

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@oregongirl

I never had any problems in Arizona. Except extreme heat. You might have to curtail you outdoor time to shady days and evenings. But, do NOT move to Texas. The leaders of the government here seem to think they can control us by not having the meds we need available. Now that the Federal govt is getting involved, we are facing hard times.

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I'm 75 and moved to Calif for my grandson When he was younger we got really close I suffered but played with him now I can't but I have Cbd oil balm I use for trigger points really helps can you get it? I'm on Cymbalta helps me along with Tramadol.I use some homeopathic meds that help me

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Certainly have little good to say about health care in IN. Likely the same no matter where one lives. Even my x-rays show there is pain-take tylenol and aleve together…I do what I can to respect my liver, kidneys and other vital organs. Weather is warming soon so I will get out and walk on hard pavement which is hard on the body. Quit whining as it gets one nowhere. I became brave enough to ask for a small amount of hydrocodone (5 mg) and was told to get out and walk. Left feeling like the dregs of society for even asking.

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