Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. My husband was in a car accident when he was 21, has worked standing on concrete for 42-plus years, fell out of our garage attic onto concrete, broke bones, punctured a lung and cracked open his skull, was in a car accident and broke his leg. He has ongoing chronic pain from these injuries. He’s had hip surgeries, knee surgeries, injections and tried the whole range of drugs. The one drug he tolerates and that works, methadone, he has tapered from 4 per day to 1/2. I have to tell you he is not pleasant to live with anymore. He doesn’t sleep well because of pain and that just makes the pain worse. We saw the best result at 1 full pill per day with occasional vicodin for breakthrough pain when he does the yard, etc. His current doctor wants to switch him to large quantities of vicodin or an equivalent. How does that make sense? And, of course, the doctor would prefer to do expensive injections. At this point the doctor has refused to continue with even the 1/2 after this latest appointment. It feels like they are playing a bait and switch game. At first this one said he would gladly work with us. Now he’s dictating and wanting to get paid for more expensive treatments that we’ve already tried. This website gives me hope. Thank you.

2. I’d like to share my story real quick. I’m 32 living with genetic and hereditary chronic pancreatitis. I joined this group because I suffer daily with pain and it’s become hard to get help even through pain management. I not only deal with daily pain and the stigma behind pain medications but also being labeled an alcoholic even though I never have been, and have medical proof showing that my chronic pancreatitis is not alcohol related.

   I’m tired of the labels. I’ve had the opiates that were helping taken away or cut down. I’ve been put on a medication for opiate addiction which they swear is for pain but the FDA has only approved it for opiate addiction. It doesn’t help with the pain. Not for me. I’ve never once abused my medication or given them a reason to think I do. When I am in a flare I am afraid to go to the hospital because I would rather suffer at home than in a hospital bed. I’ve left AMA because I felt the doctors wouldn’t help me. I shouldn’t and no one else should have to suffer or be afraid to seek help when they need it.

   I’m tired of living this way and I just want my life back. I want a better quality of life daily. I don’t want to struggle with pain on top of everything else that has come with this disease. I was promised all of these things before the “opioid crisis” but have not received it. We shouldn’t have to jump through hoops just to get a little relief. Most of us that suffer from chronic pain have to go to enough appointments; why should we have to go to pain management every month just to get help when they don’t even really help. I want to take a stand for myself and others!

3. I had treated chronic pain patients for about 16 years before resigning from my last position, as I had a major conflict with the way the pain clinic was treating the patients. I am an advocate for responsible prescribing of opioids in conjunction with non-opioid therapies. Because I’m not in a position to prescribe, I am looking for people who can share what non-opioid treatments they have tried and that have worked. I would like to get back to helping CPPs. I will be honest in saying I don’t think the opioid issues are going to get resolved any time soon, so I am looking for a way to provide some form of treatment, used in conjunction with opioids, that can help improve pain. I did my doctoral thesis on the use of music as a means to help reduce chronic pain, albeit temporary relief. My email is free to disperse if it will help.

4. I’m 47. My leg pain started as a child, waking up in the middle of the night with cramps so bad I cried myself back to sleep. At 20, I herniated my first disc in the military. Was put on Tylenol 3 and sent back to work. Since then, I’ve had two discectomies and now have Ankylosing Spondilitis (which is not where I had my discectomies). I have numerous small bulges from my cervical to my sacral. I am seeing my 4th pain doctor. Two I interviewed with and walked away from because they were insistent on getting me “off pain medication” which would be great if it were possible. But my problem, like so many others, can’t be “fixed.” As my surgeon put it recently, “We could fuse your spine at those two levels, but you’re like playing whack-a-mole. We fix one problem and 3 others pop up.”

   ALL doctors treat chronic pain patients first with disdain and suspicion, even pain management doctors. The burden is on the patient to prove he is not an addict. Legislation has made it impossible to get more than one month of pain medication, which means monthly trips to a doctor, taking time out of work. And forget trying to get an advance RX for an upcoming trip that coincides with your running out of medication.

   Many pain management doctors want to push injections (I’ve had dozens) and other inpatient treatments (I’ve had SI injections, Nerve Burns, steroids) when the reality is that a pill is just as effective, and a heckuva lot cheaper and more convenient. But you can’t tell a doctor that without immediately being put in the “addict” category.

   The data don’t support the war on opioids and its time we did something about it.

5. I’m 71 and was effectively treated with hydrocodone for 23 years by two doctors, both saying this was appropriate. Then out of the blue, it became unacceptable! No reason given, I was cut off March 2019. My life is now a living hell, and no doctor will take me. “I don’t prescribe opioids” is a ubiquitous statement these days. When and where do I go to get help so that I can go back to how it once was, when I had access to a life worth living. I am denied control of my own life. Clueless people have decided how I have to live. A life without adequate pain control. The message is clear. The government knows best and now is willing to destroy peoples lives for the greater good. What is next? War on the obesity epidemic? A database that monitors all food purchases, and red-flags you if you get too much of the wrong foods? That’s exactly what is being done to chronic pain patients.

6. Hello. I just found about your group. It’s nice to know there are people out there who share my views. In 2018 I was diagnosed with Fibromyalgia and chronic pain. I have a primary care physician and a pain management doctor. Neither one of them have helped me through the pain I feel every day of my life. I’ve never come out and asked for anything stronger than Gabapenten for fear of the stigma associated with asking for pain meds. There’s no cure for this disease and I feel hopeless a lot of days and don’t know where to turn. So this is basically my story. I like many others with my condition am hopeless.

7. I’m 68 female being treated for Fibromyalgia for 25 years. While I lived in Texas I was treated with opiates which allowed me to work and take care of my family. I’ve followed all the rules concerning this medication, never had any trouble with what I was taking. A year ago I moved to Oklahoma City to care for my 91 year old mother. Little did I know the devastating change I was going to experience. The pain clinic I go to helps, but I cannot receive the kind of care previously given. I don’t know if I can describe the desperation and depression because of these new government controls over such a very personal part of my life. The doctor I see tells me I should go back to Texas because doctors in OKC are not going to risk losing their license to prescribe the kind of medication some people need. I’m not giving up yet, but some days I want to and don’t see any reason not to. I don’t think the state and federal lawmakers care what a relatively small number of people need.

8. I had a car accident when I was 34 years old and I am now 60 years old. Right after the accident I didn’t feel anything and continued on to my appt. However, ten months following my accident I was walking in the park when suddenly the most unbelievable pain shot through my right knee. I sat down on a bench and waited for it to subside. After about an hour when nothing changed, I got up and went home. That night I remember going to emergency because I was in horrific pain. Since that night my life has been a living hell! I was diagnosed by a doctor from Stanford University who said that I had the disease CRPS (Complex Regional Pain Syndrome) known to be one of the most painful diseases a person can have. There is no cure! And most cruel is that you can’t die from it!

   At one point the doctor that I had at that time had me taking methadone which helped me to have some quality of life. But fast forward to now, when the opioid laws came into effect and my present doctor has me on only half the dose of methadone which is nowhere near to being adequate in treating the tormenting intractable pain that I suffer from daily. On top of that, in 2018 someone did a hit-and-run in which now I’m even in worse pain than ever, unable to bend or do any small activity let alone have any small quality of life whatsoever. Most of the time I’m in bed. I’ve been severely depressed and many times have thought about ending my life. This whole fake opioid crisis has scared me to death. And doctors have done nothing in the way of protesting or protecting their patients because they too are terrified that their licenses will be taken away.

   This attempt by the CDC, DEA and FDA to put the blame on those of us who have taken our medications responsibly and in no way would do anything to jeopardize having our medications taken have been nonetheless taken by this fake opioid crisis. We have all been lumped into one category making us all feel like we’re a bunch of drug addicts. I pray that God will see to it that those people who are responsible for having put these laws into effect while countless numbers of people have committed suicide because they couldn’t tolerate the pain they had will be punished. And here the CDC, etc., etc. has acted as though they were so concerned about the overdosed deaths but what about all the suicide deaths of innocent people who could no longer take the devastating pain they were experiencing so they took their lives??? Thank you.

9. Someone asked to share ER stories about mistreatment. I went to the ER here in New Orleans in 2018. My rheumatologist wanted me to have a Heart work up and said going to the ER for this was the best and fastest way. So I followed his direction and went to the ER asking for a heart work up. They did that and then the doctor came in and asked about my symptoms so I told him what was going on. His first response was “well you will not get pain medication from me”. I was taken back as I never asked or complained about my chronic pain during this visit. While I was there I had a neurological episode and only then did he start to take me seriously. He was rude and abrupt the whole time. I told him several times that I was not there because of my pain but he kept berating me for being on pain meds and the ridiculousness of me needing pain meds. I explained my conditions and again told him I was not there for that. Due to this visit, I have vowed never to go to an ER again!

10. My pain is real. My pain barely responds to Tramadol. If taken every 6 hours, the resulting constipation will be worse than the pain itself. Managing pain with what we have available is a delicate balance.

    The source of my pain: A 3mm syrinx covering T-3 through T-11. So far, it’s impacted heart, GI tract, and probably pancreas. It trips my body into fight or flight which makes controlling diabetes even harder. Before I had Syringomyelia as a diagnosis, no one believed I was suffering. They all seemed to think it was drug-seeking behavior. I begged UT Southwestern Dallas for help and they turned a blind eye because they don’t treat with narcotics.

    Luckily, HIV was found and I was already back into the healthcare system through charity. Charity honored my request for a full spinal MRI, which no doctor had ordered at any of the flare-ups during my 30-plus years of dealing with this. When no one would help with disability or pain, Ryan White Foundation funded my ACA insurance. Once that was in force, I had a GP who filled out the SSDI report and I went looking for pain management. Thank God, I found a group willing to listen as UTSW advised my spine had many problems that surgery could not help.

    As a result, we now do annual MRI studies to ensure that this syrinx never starts going sideways. And I’m stuck at home, taking things one day at a time.