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.

@dvdhoover

I’m 65 and have had chronic chronic pain since getting injured in the Navy when I was 19. To give you an idea of how much it involves, my service connected disability total is 180% because it has evolved into Sever Systemic Disease. I mistakenly didn’t question being on 480 tp 500 mg of morphine a day for many years. I was careful not to take it to get high but I wasn’t able to just grin and bear it because my heart is part of that disability, 100% for that and 80% for skeletal issues. I went through a 10 day detox in the hospital in February of last year after a colonoscopy and endoscopy didn’t show a cause for the pain so I was diagnosed with Narcotic Bowel Syndrome and a detox was supposed to be the only treatment. The constant abdominal began after emergency surgery to remove my gallbladder and the endless complications afterwards. Now that pain controls my life. There were times when the ortho pain was so bad that I could only walk a few steps using a walker because if I pushed it my defibrillator would knock me on my butt because of the SVT that it caused. But even with all of that going on I was able to volunteer at the VA for years and could take care of myself. The chronic GI pain doesn’t allow me to think clear enough to do much of anything. There’s a reason for the term “Its Like. Getting Hit In The Gut”, having pain there doesn’t allow you to concentrate on anything else but how to make it stop. It fills you with anger and limits your ability to cope with anything that is going on around you, including the other chronic pain. My GI Dr at UTSW here in Dallas is referring me to the Mayo Clinic after not finding anything that would explain the pain after an EUS and ERCP two weeks ago. I’m sure that it’s only the GI patients that truly understands the difference in having really bad GI pain and what it does to their lives. I’d sell my soul to make it stop so I’m hoping that the Mayo Clinic’s Dr’s won’t make me have to.

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@dvdhoover

Off 500mg of morphine in 10 days!!!! That had to have been 10 days in hell! And my doctor is refusing to let me go from 45mg a day to 60.

I'm certainly hoping that the doctors at Mayo will be able to help you. There has to be a source of the pain you live with, and if they can find the source, they will be more likely to get you the treatment you need. I wish you well.

Jim

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I live in the UK. I had a Laparoscopic Sigmoid Colectomy three months ago. I think that I might have Acute Cutaneous Nerve Entrapment. I had been taking Gabapentin for over two weeks and Paracetamol. It is affecting the quality of my life, has anyone else had experience of this?

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@horthog

I live in the UK. I had a Laparoscopic Sigmoid Colectomy three months ago. I think that I might have Acute Cutaneous Nerve Entrapment. I had been taking Gabapentin for over two weeks and Paracetamol. It is affecting the quality of my life, has anyone else had experience of this?

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Hi @horthog, welcome to Mayo Clinic Connect. I'd like to point you to a couple of discussions where you can meet others talking about sigmoid colectomy and nerve entrapment. See these discussions:

– ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/
– Removal of sigmoid colon, due to diverticulitus https://connect.mayoclinic.org/discussion/removal-of-sigmoid-colon-due-to-diverticulitus/
– Problems 3 months after colon resection surgery: Help https://connect.mayoclinic.org/discussion/three-months-after-colon-surgery/

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@colleenyoung

Hi @horthog, welcome to Mayo Clinic Connect. I'd like to point you to a couple of discussions where you can meet others talking about sigmoid colectomy and nerve entrapment. See these discussions:

– ACNES, Abdominal Cutaneous Nerve Entrapment Syndrome https://connect.mayoclinic.org/discussion/acnes-abdominal-cutaneous-nerve-entrapment-syndrome/
– Removal of sigmoid colon, due to diverticulitus https://connect.mayoclinic.org/discussion/removal-of-sigmoid-colon-due-to-diverticulitus/
– Problems 3 months after colon resection surgery: Help https://connect.mayoclinic.org/discussion/three-months-after-colon-surgery/

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Hello, thank you so much for pointing me in this direction. I am all a little new to this.

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@horthog

Hello, thank you so much for pointing me in this direction. I am all a little new to this.

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Welcome! We were all new once and I’m still new in many ways. Lol

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@faithwalker007

Welcome! We were all new once and I’m still new in many ways. Lol

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Thank you, I will need to find my way around all of this, plus I am from the UK, so I hope that I can share experiences here and share your experiences there in the USA.

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@horthog

I live in the UK. I had a Laparoscopic Sigmoid Colectomy three months ago. I think that I might have Acute Cutaneous Nerve Entrapment. I had been taking Gabapentin for over two weeks and Paracetamol. It is affecting the quality of my life, has anyone else had experience of this?

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@horthog For the past two weeks you have been taking Gabapentin and Paracetamol and these drugs are affecting your quality of life? May I ask how your quality of life has diminished?

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@horthog

I live in the UK. I had a Laparoscopic Sigmoid Colectomy three months ago. I think that I might have Acute Cutaneous Nerve Entrapment. I had been taking Gabapentin for over two weeks and Paracetamol. It is affecting the quality of my life, has anyone else had experience of this?

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@horthog
Hi, I am wondering why you had a Laparoscopic Sigmoid Colectomy in the first place? What were your initial symptoms? Maybe fill us in on how this all started. When you say you "think you might have" Acute Cutaneous Nerve Entrapment, how did you come to this conclusion? What are your current symptoms? Who have you seen for this and what are you currently doing for it? Just trying to get a few details to better understand your situation. Can you lay it all out from where this began and take us up to the present? Best, Hank

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@jesfactsmon

@horthog
Hi, I am wondering why you had a Laparoscopic Sigmoid Colectomy in the first place? What were your initial symptoms? Maybe fill us in on how this all started. When you say you "think you might have" Acute Cutaneous Nerve Entrapment, how did you come to this conclusion? What are your current symptoms? Who have you seen for this and what are you currently doing for it? Just trying to get a few details to better understand your situation. Can you lay it all out from where this began and take us up to the present? Best, Hank

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I had a Laparoscopic Sigmoid Colectomy for Sever Diverticular Disease. I have had to come to this conclusion as I am an ex Nurse and I have been googling it (Dr Google). I live in the UK and our NHS is not a very good service. I have told my own GP, what it might be, I cannot see her as they are working from home, due to Covid. I also attended A and E (ER) waited 7 hours they did not do anything and most Drs do not know what I am talking about. I have phoned and left messages and emailed my Surgeon as my GP has but no repsonse. I had my surgery at the end of May. The Surgeon thought it might be due to the sutures in my abdomen. I had a CT scan last week, no results, the last time I had a scan it took them 8 months to report on it. The NHS is and should not be the envy of the world.

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@erikas

@horthog For the past two weeks you have been taking Gabapentin and Paracetamol and these drugs are affecting your quality of life? May I ask how your quality of life has diminished?

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I am unabe to move much as the pain is so much worse upon movement, positional. Only relieved by lying down. I can just about wash, and feed myself. I am not able to even go out, the pain is like having been burnt and the feeling of glass under my skin.

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@amandajro

Hello @dvdhoover. I have to commend you on your continued search for answers despite the amount of pain you are in on a daily basis. When is your appointment and what Mayo Clinic location are you visiting?

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That is something that I don’t know yet. I have asked several times for more information about the process but I have not received a response from UTSW. I would like to know if I need to change my Medicare advantage plan to cover it and what the next step is to get things started. It’s frustrating to be left in limbo. Do you have any suggestions? I have to stay strong for my sister. She was recently told that the breast cancer has returned and it’s metastatic. I’m in Dallas and she is in Virginia. I just shipped her what I call a decompression chamber. It consists of a galaxy star and ocean projector, an essential oil aroma diffuser and a portable deep bass Bluetooth speaker. My bedroom is set up so that when the pain is overwhelming regardless of the source, or I’m really feeling sick and the anxiety is too much, all I have to do is go into my bedroom and flip a switch so that my room turns into an escape zone. My ceiling turns into a night sky with stars and what ever color of moving clouds that I chose, my diffuser fills the air with whatever calming essential oil that I have in it, and I lay down on my bed with my extra base speaker next to me playing one of the collections of deep sleep and meditation music. It doesn’t have to be very loud at all and the added bass makes the effects of the music more effective. I also have a sound machine that plays the ocean surf 24/7. I was going to share this with all of the other groups that I’m following because it’s been a quality of life saver in so many ways. I’m going to send another message to my GI Dr again today asking for the referral information.

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@horthog

I had a Laparoscopic Sigmoid Colectomy for Sever Diverticular Disease. I have had to come to this conclusion as I am an ex Nurse and I have been googling it (Dr Google). I live in the UK and our NHS is not a very good service. I have told my own GP, what it might be, I cannot see her as they are working from home, due to Covid. I also attended A and E (ER) waited 7 hours they did not do anything and most Drs do not know what I am talking about. I have phoned and left messages and emailed my Surgeon as my GP has but no repsonse. I had my surgery at the end of May. The Surgeon thought it might be due to the sutures in my abdomen. I had a CT scan last week, no results, the last time I had a scan it took them 8 months to report on it. The NHS is and should not be the envy of the world.

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@horthog
So you had this surgery for diverticulitis. Now as a result of the surgery you are having pains? Are they happening in the area where you colon was operated on? What is the pain sensation like? Is it sharp, dull, continuous or in short bursts? Is there any burning or pins and needles (probably unlikely), and how severe is the pain on a 1-10 scale? How did you come up with nerve entrapment for a diagnosis? When this pain is happening is there anything you have found to relieve it?

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