Chronic Pain members - Welcome, please introduce yourself

Hey @JustinMcClanahan, have you had pharmacogenomic (PGx) testing done?

Pain meds don't work for me because I'm a slower metabolizer (genotype status level Poor for the enzyme CYP2D6, which the body uses to fully- or partially-metabolize most pain meds).

Here are the metabolizer statuses for each enzyme:
Poor < Intermediate < Normal (Extensive) > Rapid > Ultra Rapid

I'm willing to bet you're a fast metabolizer by genotype (rapid or ultra rapid) for at least one of the enzymes that metabolizes Dilaudid. (Dilaudid is metabolized by five enzymes, three of which (CYP3A4, CYP2C9, and CYP2D6) are included in the standard PGx test sets like the ones provided by Mayo and Oneome.)

When doctors prescribe meds, they will assume that a patient is a Normal metabolizer unless they are provided with info like I have (and then they usually just become confused and somewhat scared, except for my Mayo doctors).

Hello,
I'm KJ, I'm a 34 year old male, who has been suffering from chronic headaches for over 10 years. It's essentially been a nonstop headache that I feel in both temples and between the eyes. The severity will fluctuate day to day but never completely goes away. I've been looking for an underlying cause for a long time. I've tried ENT treatments like allergies medicines, shots, and sinus surgery. I've had CTs scans with no issues identified. I've been diagnosed with sleep apnea and have been regularly using a machine for 2 years now. I've always been anxious person but I I've started to require treatment for both anxiety and depression in the last 5 years which i believe is due to the stress of dealing with these symptoms. I also always had difficulty sleeping, with these symptoms contributing to having very low energy. I've recently started taking Adderall this year due to my struggles with maintaining focus at work. Which I believe is due to dealing with these same symptoms daily. I find it difficult to motivate myself to be more physically active and often stress eat. I started taking Wegovy 6 months ago in hopes weight loss would help alleviate some symptoms. I'm 5 ft 10 and have managed to get my weight down to 180 from 225. It feels like nothing I do makes any difference and I'm not really sure what else I can try at this point. I really feel like I'm giving all the energy I have to just getting by day to day and I want to be able to do more than that again. I feel the years of dealing with these symptoms is taking a larger toll on me as time goes on but i just don't know what else I can do at this point besides just trying to power through and hope that at some point this will go away. I don't know that I'll get any true answers here, but it feels good to talk about with people who may understand what I'm going through and the toll it's taking on life.

Hello, welcome to Connect @k1308 I'm sorry to hear of the difficulty you've had with headaches and all that accompanies having chronic pain. Thank you for sharing your story. Mayo Clinic offers a wonderful pain Rehabilitation Center which I graduated from. It really helped me with chronic conditions like daily headaches, migraine, nerve dysfunction, etc... You are much too young to be in the "cycle of pain" without finding ways to manage and perhaps break the cycle. Based on what you've described I think you would be a prime candidate for the Mayo Clinic's PRC. Here's info on the program:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Outside of medication and treatments, what ways have you been managing your symptoms?

Well 20 pieces of Sod laid, 4-40# bags of top soil spread and all areas fenced in! Yes tomorrow will be hell! But in reality has its humor. Some ask Fence???? Why fence ? My very first Golden Retriever “Toby” taught me why to fence fresh sod. I had a very large orange tree in my backyard that over grew and I got to the point where I told my wife I was cutting it down. Mainly because grass would never grow under it. My Toby and my wife’s dog ( Boston Terrier) would walk in with dirt on their paws where shampoos on the carpet became a norm here. I finally took it down and went to laying 2 pallets of sod delivered in my driveway. ( before my surgery and young) The more I laid the sod seemed like I wasn’t making headway but yet I continued. After 30 minutes I KNEW I wasn’t making headway. For every piece of SOD I laid, Toby was bringing in 2 pieces of sod and laying it on my living room carpet. So yes he taught me 2 things….put fencing around new sod AND never have carpet. I can laugh at it now but wasn’t laughing then! Hopefully some of you get a smile out of that all to true story….David
P.S. Have a great weekend all!

Massage therapy is the only way that I have found to ease my pain I am taking pain meds and even then the pain doesn’t stop! I have fibromyalgia, bludgeoning and degenerative disc almost constant headaches other chronic conditions osteoarthritis all over it makes life not very fun

God Bless you Greatly David!

Hello, welcome to Connect @k1308 I'm sorry to hear of the difficulty you've had with headaches and all that accompanies having chronic pain. Thank you for sharing your story. Mayo Clinic offers a wonderful pain Rehabilitation Center which I graduated from. It really helped me with chronic conditions like daily headaches, migraine, nerve dysfunction, etc... You are much too young to be in the "cycle of pain" without finding ways to manage and perhaps break the cycle. Based on what you've described I think you would be a prime candidate for the Mayo Clinic's PRC. Here's info on the program:

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

Outside of medication and treatments, what ways have you been managing your symptoms?

Hello. In June 2019 I had a cholecystectomy or gallbladder removal surgery. The gallstone pain finally made me pursue surgery. Since I was moved to a hospital bed post-op, the new - and however possible, worse - pain began. I was in the ER twice in two months post-op. I have been to a University hospital more times than I can count, with so many X-rays, ultrasounds, etc. I finally gave up they would solve this pain issue after seven months and exhausting any money I had left. I partially work from home and hoped the worst spasms and mule-kick-to-the-diaphragm pain would happen at home, as the event would last up to 24 hours, and they still do today.

06/2019 Post-op: Spasms are ALWAYS happening, like rhythmic waves, and are very light. Few are still intensely painful, and come out of nowhere. Feels like a lightning strike inside from 3 cm right of the xiphoid process, down to half way point of the right quadrant. Like being punched hard in the diaphragm non-stop. Still can’t breathe deeply without the punched feeling. One of the worst was trying to pretend everything was fine when I was on a flight and the spasms began - I did not want to be on the news for an emergency flight diversion. That was intense.

Last week was suddenly the worst event I’ve experienced. I woke up, had a glass of water, began to prepare breakfast for the kids, and was hit hard. After 12 hours of writhing on the floor, cursing and praying, my resolve not to spend anymore money on a high medical deductible gave out. Pain became incapacitating and absolutely intolerable. Having a high Pain tolerance I can put up with a lot, and have had work injuries that caused excruciating pain - this was the limit of my tolerance. I Waited 12 hrs to go in but couldn’t handle anymore pain, thought this was going to end me (no fear of death but just wanted to get moving with it).

Could be they entrapped even the Vegas nerve during surgery, or some other nerve? Muscle at rib attachment was extremely rigid and inflamed, and is during these events. Bile is likely backing up from odid’s sphincter into stomach (?) - must have thrown up several cups of bile (not stomach acid). Doctors say it’s not possible but my body disagrees - this fluid was something I’ve never known before (and my stomach to my esophagus never ached or burned). This wasn’t an upset stomach and only right upper and right mid quadrant we’re ever in pain.

They released me after four days and said they couldn’t help any more. They put me on Amitriptyline and Gabapentin (again), and gave me a small amount of Ativan (‘just in case the worst spasms/pain occur‘, they said). They want me to go to a pain clinic for a nerve block shot in the abdomen. What will that cost and will it even work?

Does anyone at Mayo have experience with what appears to be chronic and intensely acute spasm and nerve pain or damage post-op cholecystectomy? I can’t support my family living moment-to-moment in fear of another attack.

I look forward to some idea in handling nerve and/or biliary pain. Thank you for this forum!

Hello
I know this post is a few years old but I seem to be experiencing the same symptoms as you. Have you now recovered and did you ever get to the bottom of it?
Thanks
Kelly