High pain tolerance

If you’re not receiving adequate care where you are why not try going to a large hospital especially a teaching hospital?

@jenatsky
Don't have the money to do that. I don't have family support because they don't understand my health issues.

@tjanet what about doing for yourself? You cannot always depend on others to do the right thing! Have you been waiting for someone to rescue you?

@jenatsky
I don't have the money to go to a specialist. I am limited to what I can do because of my health conditions/health issues. I care for myself.

Good morning,
I wanted to leave a comment regarding people being in pain for years, not just a few weeks, or even months. My full-time job since July of 2023 has been trying to find out why the muscles on the right side of my torso are continuously locked/spasmed. I have been to (5) hospitals (all top hospitals in my city), and I have seen more than (30) doctors/specialists, and no one can tell me why my muscles will not release.

Many of these doctors give up after a single visit, which is the main reason I have been to so many hospitals and have seen so many doctors. They order a blood panel, or an image (multiple CT scans, Ultrasounds, MRIs have been run by multiple hospitals/doctors, and they all say they do not see what is causing my pain), and when there is nothing definitive showing on that first day, they walk away. No calling a colleague, referral to another doctor/specialist, nothing, just a shrug of their shoulders and a "don't let the door hit you on the way out" attitude from many of these "professionals".

The paraspinal muscles along the right side of my spine, flank/QL muscles above my right hip, and oblique muscles that run from above my right hip at a downward angle towards my naval have all been locked for more than three years now. I am in pain from when I get up until I go to bed, all day, every day. This never goes below a 6, and if I am moving around (just picking something up off of the floor locks these muscles like a calf cramp), it goes to an 8/9 and I have to lay down. This is the only thing that brings any relief, laying on my back. But as soon as I am up, the muscles immediately lock again, and I'm in pain until the next time I lay down.

This all started in July of 2023, and it wasn't until about 2 months ago that a doctor I had just seen for the first time (Doctor of Osteopathic Medicine) asked if I have tried any medications for the pain. No one has asked me this for three years of me telling them how much pain I am in. They are either worried about drug addiction, or they did not think I was actually in the pain I was describing, so no one even suggested anything for the pain. So, he wrote a prescription for Nortriptyline, which is primarily an anti-depressant, and it is also used for chronic pain. Unfortunately, the only thing I got from this medication was all of the bad side-effects with none of the supposed pain relief it can bring.

We have a terrible healthcare system in the US, and it is only getting worse by the month. I am seriously considering leaving the country for care, as no one here either cares, or knows what they are doing.

@jenatsky I know you are trying to help, but just telling someone to go to a bigger hospital is not the answer. I live in Los Angeles, CA, and since July of 2023, I have been to Cedars-Sinai, Keck of USC, UCLA Health, Providence, St. Johns, and Kerlan-Jobe. They don't get bigger than these.

For more than three years now, I have been lied to, mis-diagnosed, treated very poorly on multiple occasions, and the worst part of all, just plain ignored by doctors and their staff. I have a primary doctor with UCLA that has not returned messages or calls for two years now. This is one reason why I have seen more than (30) doctors/specialists at (5) hospitals over this three year period. I don't wait around for them, if they give up, I move on.

A spine specialist with Keck and his staff ignored me for more than a month when we were supposed to be setting up the next steps in my care, so I moved on to UCLA.

UCLA has an East/West division that I went into alternative treatments with. Acupuncture, Trigger Point Injections, Cupping. The doctor I was seeing was the first that seemed to care, unfortunately, she left the facility I was seeing her at, and from then on it was back to being treated terribly. Ignoring my messages, canceling appointments same day, and a doctor that was very rude for someone that was recommended to see by the doctor that left. He basically asked why I was even there if I had seen the other doctor and there were no improvements. This was in a very rude manner, and I almost said something I would have regretted. I did tell him the doctor's name that recommended I see him, but he dismissed me and just walked out.

All of this is just a sample of what I have been going through since July of 2023. I have a summary I print out for every new doctor I see that details everything I have been trying. The summary is on page (10) now, and some doctors won't even look at it, they just blow it off thinking they know everything about everything, when they have no idea what they are doing half the time.

I have been busting my butt for more than three years, so when someone suggests I'm not trying, they have no idea what they are talking about. My wife and friends can't believe I'm still going...reading articles, watching videos, writing to doctors, professors all over the world, securing appointments with top doctors in their fields that are not even in the insurance loop, you pay them cash up front for their services. Look up Dr. Neel Anand and you will see this spine surgeon is one of the top doctors in the world for minimally invasive spine surgery, lecturing/teaching and developing procedures that other doctors will use. He couldn't believe I found him on my own and got an appointment with him without any medical professional's referral.

The US Healthcare system is broken and getting worse by the month. Many of us are out here trying our best, but we are being ignored and treated very poorly when having what many have told us is a "very good healthcare plan". It could be a free plan right now and would not be worth it.

@marcd2k Have you tried a pain management specialist? I have had chronic pain for 3 years since a fall down some stairs and it was finally diagnosed as Chronic Myofascial Pain when my pain specialist and a rheumatologist colleague of hers consulted. I am now on meds that help. PT also helps if you have a good therapist. One of your doctors can refer you to PT, including your PCP. Hope you find a solution or diagnosis at least to start with.

@sandrac Hello, thank you for replying. Yes, I have tried pain management with two different providers. I have had three epidurals, the last one back in February this year. This third epidural made my pain worse, both during the epidural itself, and up until today, my pain level goes between the 6 and 8 range depending on my movement patterns.

The same doctor that performed this epidural then had me get more imaging of my thoracic spine, this time CT scans instead of an MRI. He then suggested Trigger Point Injections, which I had already tried with the first provider with no luck. And these newest injections did absolutely nothing. I knew something wasn't right when I showed up in his office, he brought the syringe and anesthetic in, and then he asked me where he should be injecting. Why is a pain management specialist at one of the "elite" hospitals in my city asking me where he should be injecting?

I have been to four PT offices this year (since January), and none of them have any idea why my muscles do not respond to their normal treatments. The last office I was at actually made my pain worse as well. The co-owner of the PT facility performed my session one day, and he was digging in to my right side QL muscle trying to get it to release. It was very painful while he did this, and again, to this day, my pain level has never dropped to where it was before the procedure.

This creates another problem. I cannot even do the simplest exercises / stretches the PT techs give me, as my muscles lock into what feels like a calf cramp in my side. The only thing I can do is lay down. There are no medications ( I was prescribed two different medications in the past two months) that do anything for the pain I have. Nothing over-the-counter, and nothing prescription, does anything to relieve it. The very first day this started three years ago, the ER doctor gave me Norco, a shot of Toradol, and a Lidocaine patch, all within about two hours. These did absolutely nothing, which surprised the doctor and nurse.

I have been to more than 30 doctors at 5 different hospitals, I have been to chiropractors, acupuncturists, hip specialists, spine specialists, physical therapy, all multiple times. No one has any idea what my problem is, and the majority of them have given up trying to find out.

I continue to have constant upper left abdominal pain. My doctors are not treating my pain or my other symptoms. My GI doctor doesn't seem to care about my constant upper left abdominal pain. My pain level is between a 6/8 out of 10. Not sleeping much at night because of abdominal pain. I am not taking anything for my constant upper left abdominal pain.

Suggestion to everyone here is alongside whatever docs or treatments you also get a therapist (mental health). Not that you're crazy. It's that pain by itself is difficult and then add to that trying to find the right doc or treatment - it's a lot for one person to handle on their own. Family and friends can help (but sometimes or often don't). And often people in pain self isolate. Therapists not only listen (which helps) but often can give advice, support and encourage you. It does make the journey a little easier.