Chronic Pain members - Welcome, please introduce yourself

Hi, Im a 67 year old female suffering from extreme chronic pain that began at age 48. Almost 20 years in & my life being stollen by what was diagnosed as extremely rare case of fibro. Although have all symptoms of MS even lesions on my brain, optic neuritis, periphreal neuropathy, had emergency gallbladder surgery that I live in so much pain didnt realize I had it until I threw up bile went to er and they took tests & told me my gallbladder was gangrenous & in 24 hours I would have died from sepsis if I hadn't gone to er when I did. Surgeon could not understand how I did not know how ill I was due to fact this was over a long time period to e gangrenous as well as would have caused unbarable pain! He was perplexed literally! At 66 I had a heart attack, I have gastrointestinal issues, osteopenia, ulcers, colitis, hernia, just found out I have cataracts on n on ... I come from a family of seven children. I am the only one that has all these health issues out of the long list I do, the others do not have any !? Drs because of drug addicted kids as you all know have been threatened by the cdc & dea to stop kids from overdosing & with that drs stopped treating chronic pain med patients! Since then I have been suffering beyond imagination, I have no ability to live or semblance of normal life. At 48 I went from cant stop me to almost 20 years of If I want to shower I have to be afraid what pain my body will cause me for any & all physical movements. I am a prisoner in my own body. Ive seen a multitude of every specialist & beyond testing of every sort. I have grand babies now that I hardly see my illness & suffering has grown worse over time. I want to have a full genome sequencing , to check for rare diseases because my body is killing me organ by organ. I need help from Drs I know I cannot afford but I also believe those Drs would correctly diagnose me as well as most probably save my life so I can live whats left of it now at soon to be 68. I read about a rare disease that made my jaw drop because it was as if it was describing me & my ill health in every way. Hence wanting the full genome testing. Its called, Neurofibromitosis it has three types the name of the one I think may be my actual health issue is Schwannomattosis . When I read about it it was as if I was describing my issues 100%. Its a very rare disease of genetic defect cause & inheritance. It was a fluke thing that I even stumbled upon it. Anyone know of a reputable, Full genome sequencing lab in south Pa.?

Unfortunately most of us are judged that way. I’ve always considered it the invisible disability. When I first joined this forum, I brought that up as our disability that rarely gets attention. No walks, no runs for the cause,not enough research, etc..etc…Yes Chronic pain can suck the life out of you. Is there a honest answer? It all depends on who you ask. Surgeons still continue their surgeries knowing what life holds for that patient following the surgery. Most of us finally learn to just ignore it as it becomes a norm. Relationships are affected, friendships disappear. We become a shell of what we used to be. Can you tell I worked in the yard all day yesterday? Yes my body is screaming this morning but I know I still have 20 pieces of sod to lay as my neighbors 3 large dogs dug under my fence knowing my grass was greener lol. My 80# Golden Retriever was there to cheer them on! But I try and look at the bright side. I notice the smaller things which are beautiful and take my time to enjoy those rare moments. I wouldn’t have noticed them before I was injured. I put on my fake smile and greet strangers who will never know how bad I’m really feeling. But what can I do about it? Not a thing but put one foot in front of the other and keep going. Last month my wife and I went to the funeral home and had all our final wishes taken care of. I actually felt comfort as I know one day this pain will finally end. Until then, it’s one foot in front of the other. I’ve lost all hope in our medical system and put 100% of my faith in God. Wishing everyone here a pain free day and a great weekend……David

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?