Chronic Pain members - Welcome, please introduce yourself

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

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.

@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?

@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

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.

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.

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.

@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?

Ouch sounds like nerve pain

@horthog Since your appointment where the medications were prescribed, it sounds like you have communicated with your provider about the extreme pain you are experiencing. You have also attempted to contact your surgeon and went to the ER (ED). You have not received a response from the surgeon and the ER (ED) does not know what the issue is and how to treat it. Is that correct?

I'm not sure if you have such a thing in the UK but here is US we sometimes have coordinators, social workers, and advocates that work with patients in hospitals. They facilitate communication between providers. It sounds like no one is taking responsibility in finding a cause for your pain.

I find it curious that the surgeon will not return your calls. At Mayo Clinic we have the office of Patient Experience and that's another resource I'd suggest you utilize, if you were in America.

Are there social workers, coordinators, and/or an office of patient experience in the UK and at your hospital system?