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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.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

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jacpoymark | @jacpoymark | Nov 5 9:16pm

Going on 10 years some nights seem like a year! Just seeing what others do living in this hell have tried everything just got my new round of injections today. Left therapy last week. Excuse me got thrown out of therapy, because there was nothing they could do!! But had to satisfy Insurance! I had to laugh today when the doctor told me I needed to work on my sleeping positions. I looked at him square in the eyes and said I don’t get to sleep. Just looking to talk see what everyone’s going through out there I can’t be alone in this .

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dohendertryonest | @dohendertryonest | Nov 6 11:16am

My name is Doug and have chronic pain as a result of having a Shingles attack which lasted for over 15 weeks. Then it turned into neurology. Still very painful taken several medicines with no results.

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jw9 | @jw9 | Nov 6 12:06pm
In reply to @pat19631944 "Pat M I have pain that occurs mostly at night, while supine that roams throughout my..." + (show)
Profile picture for pat19631944 @pat19631944

Pat M
I have pain that occurs mostly at night, while supine that roams throughout my body. My knees ache, my right calves hurt. When in the shower, I can’t stand on my right leg very long, it creates such pain that I can’t put weight on it. I am temporarily unable to walk without holding onto a wall. After massaging the pain subsides . I’ve had gel injection in my right knee, the pediatrician recommended knee replacement surgery. At my age ( 80 ) I’m reluctant to have surgery. I was taking Tylenol, but now am using pain gels. I really need coping skills.

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@pat19631944
It's exhausting dealing with ongoing pain. I completely understand your reluctance to have knee replacement surgery. Your physician must think you are a good candidate but it's up to you. It would help with your pain. it's good to consider what the rehab looks like, you will have to be committed to the physical therapy for it to be a success.

My pain is often worse at night also. That is true about osteoarthritis. It's good that you joined this support group. I think it's important you talk to your doctor with your questions about coping.

It has changed for me over time since I have lived with chronic pain for 30 years. I see a pain management specialist and I highly recommend this. this is who helps me with coping skills and who understands chronic pain.

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phoenixcholla | @phoenixcholla | Nov 6 1:30pm

Hi, I am Molly, living with 5 + years of TMD gives me the pulling down of my jowls and eyes with fatigue daily. Diagnosed with arthritic jaws and neck 3 years ago. Since 2022, non invasive modalities of Lavage, Chiropractic, Physical Therapy, Massage, Medications of muscle relaxants, anti-depressants, neuropathy have not lessened the intermittment pulling/tightning sensations. Possible right jaw is locked, another Jaw MRI to confirm. Next step is an arthroscopy, taking the needle into my right jaw with the camera to clean out any scar tissue. Any thoughts? Thank you.

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raymond111deluca | @raymond111deluca | Nov 6 1:51pm

Hi My name Raymond DeLuca In 2006 had a hemipelvectomy and had Right llium removed in leg along with muscles, glands and other unknown parts . I had chondrosarcoma and lege was removed and at 1st was permanent but they had to reattach after bleeding to death 30 pints transfusions at Slone Kettering in NYC. Since then pain indescribable with Vascular issues an issue since Blood not moving back towards heart as it should . So i take an opioid since then and only issue is they consider us all addicts because of government not knowing the facts of each patient. i even reduced to keep brain functions normal. I got an Online degree while in rehab and that is an every day PT workout and swim laps 2-3 a week at local YMCA a must to keep weight down since I cannot walk at all. So I am alive and I fight to stay that way and yes fear that it may return in another form always there. Enough PEACEt

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cyndigarrison | @cyndigarrison | Nov 8 3:35pm
In reply to @maritwelker "@cyndigarrison I love your mindset and it's one that seems to be commone on here. People..." + (show)
Profile picture for maritwelker @maritwelker

@cyndigarrison I love your mindset and it's one that seems to be commone on here. People have their lives turned upside down, few people believe it, and yet we are happy and making the most of the lives we have been given. Your faith in the Lord is inspiring. I would be nothing and nowhere without my faith. Instead, I've gotten well enough that I am working again and starting a business targeting women who are going through this without relying on God and without knowing this is a beautiful life anyway. Crazy that it's come to this, but I feel like it brought me to where /i'm supposed to be, doing what God wanted me to do all along. I still have fibromyalgia, arthritist in my hands and wrists, and am prone to post viral syndrom (long covid is a form of this) and I have to be very careful with my energy levels, but my life is wonderful and I'm truly grateful for it!

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@maritwelker thanks so much sweet girl! God always blesses us in His way and His time. It sounds like He has led you there. That is wonderful. We are always fulfilled when we follow where the Holy Spirit guides us. Thank you so much for doing what you are doing. It helps those suffering to know that they're not alone and to have someone like yourself as a loving guide. Keep up the great work!

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cyndigarrison | @cyndigarrison | Nov 8 3:39pm
In reply to @heisenberg34 "@cyndigarrison That is a very difficult load to carry. I am sure that all of us..." + (show)
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@cyndigarrison That is a very difficult load to carry. I am sure that all of us fellow commenters/patients here on Mayo Connect can empathize with you and hold you up with our prayers. May the Lord give you better days ahead!

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@heisenberg3thanks so much. And you as well.4

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cyndigarrison | @cyndigarrison | Nov 8 3:43pm
In reply to @jw9 "@cyndigarrison Thinking of you. I want to tell you how much I relate to your story...." + (show)
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@cyndigarrison
Thinking of you. I want to tell you how much I relate to your story. I was an RN in Oncology and became ill with RA, Fibromyalgia...I had just turned 30. No diagnosis for many years. Now my rheumatologist wonders if I've had Psoriatic Arthritis instead of seronegative RA. I spent my 30's resting in bed. I also had surgery and radiation treatments for a cancer diagnosis in those years. Because of that severe disabling fatigue and pain I lost my career. To close a practice and get on disability is life changing loss. We keep on going though! It's not the life I thought it would be but I'm grateful for living and for love. I became a published poet and jewelry maker. Creativity has been my best medicine. Wishing you all the very best in life!

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@jw9 thanks so much! And God bless you. Isn't He awesome? Through Him we still know that we are blessed and still have a wonderful life. I dont think that Id still be here if it weren't for His love and abundance. Keep up the good work!

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heisenberg34 | @heisenberg34 | Nov 8 4:21pm
In reply to @raymond111deluca "Hi My name Raymond DeLuca In 2006 had a hemipelvectomy and had Right llium removed in..." + (show)
Profile picture for raymond111deluca @raymond111deluca

Hi My name Raymond DeLuca In 2006 had a hemipelvectomy and had Right llium removed in leg along with muscles, glands and other unknown parts . I had chondrosarcoma and lege was removed and at 1st was permanent but they had to reattach after bleeding to death 30 pints transfusions at Slone Kettering in NYC. Since then pain indescribable with Vascular issues an issue since Blood not moving back towards heart as it should . So i take an opioid since then and only issue is they consider us all addicts because of government not knowing the facts of each patient. i even reduced to keep brain functions normal. I got an Online degree while in rehab and that is an every day PT workout and swim laps 2-3 a week at local YMCA a must to keep weight down since I cannot walk at all. So I am alive and I fight to stay that way and yes fear that it may return in another form always there. Enough PEACEt

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@raymond111deluca You are an inspiration to us all. I feel very fortunate to read all the stories of pain warriors like you, My faith is being tested lately as never before. I pray that God, in His great love and mercy, will provide the strength needed to face each day.

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jw9 | @jw9 | Nov 8 4:24pm
In reply to @raymond111deluca "Hi My name Raymond DeLuca In 2006 had a hemipelvectomy and had Right llium removed in..." + (show)
Profile picture for raymond111deluca @raymond111deluca

Hi My name Raymond DeLuca In 2006 had a hemipelvectomy and had Right llium removed in leg along with muscles, glands and other unknown parts . I had chondrosarcoma and lege was removed and at 1st was permanent but they had to reattach after bleeding to death 30 pints transfusions at Slone Kettering in NYC. Since then pain indescribable with Vascular issues an issue since Blood not moving back towards heart as it should . So i take an opioid since then and only issue is they consider us all addicts because of government not knowing the facts of each patient. i even reduced to keep brain functions normal. I got an Online degree while in rehab and that is an every day PT workout and swim laps 2-3 a week at local YMCA a must to keep weight down since I cannot walk at all. So I am alive and I fight to stay that way and yes fear that it may return in another form always there. Enough PEACEt

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@raymond111deluca
Thinking of you and all you do to keep your best life after a surgery and diagnosis like that. And, you've been doing this for almost 20 years too. Glad you are here and shared your story!

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