Living with pain

@rt061069 I hope you and the others on this line have all had appropriate clinical grade whole genome sequencing done in the last year or so. I know that Nebula and Dante can do this, and that Medicare approves coverage if your doctor signs off on it. I am still working on understanding what I have found through genetics. My big issues are Gelsolin with systemic cancers, Congenital dilated cardiomyopathy, Fukatin and FKRP Limb Girdle Muscular Dystrophy, Clarkson's Disease, Diabetes II, disappearing White Matter in the brain, Blepharochalaisis, and many more disorders and diseases.. 30 heart Catheterizations with 2 bypass go-rounds, Much more stuff, but that is the bit stuff. And in pain all the time now, ranging from 4-10. But as I learn more from genetics, I feel more in control by just knowing the crap I have. Mayo was no help until I found this line. over thirty years ago I visited a hospital in Piedras Negras, Mexico. The hospital, as I recall, was built for about 500 patients, but at that time they had about 1500, mostly folks living in the US by returning to Mexico for medical treatment. The overflow patients and their families stayed in a homeless area across the street. That area was filled with cardboard huts and a few tents. i spoke with one man whose wife needed surgery, but could not get onto the schedule for another year or so. That is, if she was still alive. Anyway, We are sometimes close to that. The best thing you can do is get started down the genetics path, perhaps with Ambry Genetics or Sequencing.com, Nebula or Dante

Had a genome sequencing done to discover what pain medications my body is resistant to.

God, I wish you well. My pain is nothing like what you are going through. Mine is pretty localized. But like you, finding help or even relief has been impossible. God bless you

I have tried everything to get someone to just put my pump back to where it has been for the last 20 plus years it controlled my pain it did not get rid of all the pain but made my life enjoyable but they have turned my life into a living hell first going through the withdrawals for seven days I almost died from it now they say that they need to turn it up in steps but what they put in it won’t do the job so I am left in pain as they rack up the bills what happened to do no harm because I have been harmed and I am tired of it I have added a copy of what they did without a word to me I was on that medication for over twenty years I was not given any notice from any doctor it was the rep for the pump who sent me a email about what had happened but no one will put it back where it was when it worked it is all about money now and I am left to suffer when I know what will fix it .

I have come to the conclusion that the doctors are trying to make up for the last 15 months of Covid-19 so at my pain and suffering they will make this take as long as they can that is the only reason that I can see, this pump and me aren’t new when I first got it 21 years ago it had the same medicine in it until now so it can be done they are cussing not to so they can keep billing for me to keep coming in every two weeks for a increase but I know what worked for 21 years but now I am just in pain 24 7 and get maybe 2 hours sleep with a sleeping pill the doctor gave me a new medicine but all it did was give me nightmares for the time I did sleep so if anyone out there be carful the do no harm part of the doctors code went out window

@bear338 dealing with pain is so frustrating and so is feeling like you aren't being heard. Do you feel you are sharing your experiences with your doctors and they aren't taking that into consideration?

I’ve only had one dr who listened and she left the field because of what it became. Non-patient focused.

Definitely I have had a pump for over twenty years in all that time I have not gone up on the dose until it went haywire in February right after a refill just days after that is when it all went bad it has been years since I have had them increase it at all and then it would be a 2 percent and more often than not the next time I was in I would have it turned back they have my records I was going to the same place since 2007 so they know it never got all the pain but it was livable not like it has been but all they say is we have to titration up but when I got the first pump it was at a higher dose than I need and it took several trips to get it where I needed so I know bull when I hear it so I stuck in pain with something that did take care of it but now it’s like have water just out of reach when you are dying of thirst it’s all about money that they didn’t make last year so they are now doing whatever they can to make up for it. The refill I got in February must have had the wrong type of medicine that is why it clogged up the pump adapter just days after it was filled and it was the doctor who went to this pharmacy because of the price and this one doesn’t take any insurance at all but I have never had this problem in all the time I had the pump but the last 66 days have been the worst pain I’ve ever had to deal with the scar tissue in my spine must’ve gotten worse well I knew it had because I went from walking to being in a power wheelchair but I always knew that was going to happen to me but not this just be carful with your doctors .

I've been fighting sciatica for seven years. Most pain management specialists are pill mills who also offer additional services such as spinal epidurals, RFAs, spinal cord stimulators (be very cautious of these as many time the potential risks e.g. probe migration, etc. are downplayed). Only recently have I begun to experience relief. This was thru a trial run of Cymbalta I had side effects with Lyrica and gabapentin. On the bright side I feel I'll be able to be weened off oxycodone but the experience may be harrowing. It's sad to have to say this but my best advice is to abstain from opiods and seek a medical professional whose places their patient's interests above their financials.

Has anyone tried Dorsal Root Ganglion (DRG) a spinal cord stimulator for chronic foot pain?