Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
Official Site
Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
Gosh. Where do I start?
General practitioner send me to orthopedic doctor 7 years ago. Result inoperable lumbar spinal stenosis and degenerative disc disease. 3 years of lumbar injections, 6 years of cymbalta, tramadol and zanaflex. 8 months ago changed to cymbalta, nucynta and zanaflex. After 7 months, I feel like I am now on a decent dose to handle everyday pain and breakthrough pain. Oh yeah 3 years ago I had a spinal stimulator put in. Amazing device, but let’s face it. At best it helps your brain handle more pain while helping you not feel it all. It’s used to help ease your pain, not rid you of all pain.
3 years ago, my doctor started giving me issues with refills of tramadol. Pharmacy did pretty good on keeping my refills going. Not quite a year ago, my doctor sent me to a Pain Management doctor. It’s taken me 7 months to get on a high enough dose to get relief from my daily pain.
I should probably add this. 27 years ago, I received a living related kidney transplant. As you may know, drugs like Advil are not supposed to be taken by kidney patients.
Both my kidney and my spinal stenosis are hereditary issues from my mother’s side of the family. I watched my mother suffer in agony the last 10 years of her life, but hey, she got the good stuff back then. Oxytocin, Lortab and the like. Though I will admit, the last nail in her coffin was liver failure and kidney failure from pain meds. So yes, I’ve experienced the torture of trying to love the unlovable who suffer with life sucking pain.
And I have a pretty good glimpse of what I will be facing in the next 10 years. But unlike Mom, I refuse to suffer silently.
About 4 years ago, after having 4 doctors tell me MMJ would change my life, I began weaning my cymbalta dose down. I slept like a baby on black market purchased tincture with THC in it. But job changes and drug tests got me back to pain meds again.
My story of pain punishment starts with the pharmacy. Thanks to state legislatures and CDC guidelines, my national chain pharmacy generally treats me like crap having to call every 30 days to get my Nucynta. “We don’t have enough. You just refilled that. First fills require 7 day dose at full copay.” Like every imaginable bullcarp line you can think of, I’ve heard when it comes to refilling my pain meds. Like I said, why treat me like a criminal or junkie?
I have a script. You fill the order. It’s that simple.
I have a 5 year plan to retire. At that point, I will probably drop big pharma and switch to MMJ. I have been reading up on how to grow it. Looking at ways I can, in my current Bible belt non-compassionate state, for my very own consumption. I’m tired of the hassle. I’ve told my wife, the good news is, we will only need one vehicle, cause I’m staying stoned 24/7.
Will it all work out? Who knows. But I haven’t worked my entire life to put up with the legal way of how pain patients are treated by how the medical and pharmaceutical communities treat us day in and day out. What have I got to lose?
I am one of those patients caught in the “deadly” net.
I have Ehlers-Danlos Syndrome, POTS, along with other conditions. I was happy, healthy, and functioning on 1 to 3 norcos a day (give or take). I didn’t take them every day. I never abused them. Have never abused drugs even. Then they took it away.
They stopped seeing me after I had a ruptured ectopic (I informed them of btw that the hospital would temp be prescribing stronger medication). After my OB found out they refused to see me anymore, he even wrote a letter on my behalf (still they refused to see me anymore).
I had two back to back laperotomies, lost over half my blood volume, and a few weeks later developed sepsis from MRSA in my abdomen.
After years of trying to just “deal”, they finally put me back on, but this time only one a day. I thought okay, at least I have a little safety net so that when the flares come I won’t kill myself.
But then my functionality got worse and worse. It had already become worse since they put me off. I became less and less active. When I asked for one AM and PM with hydrotherapy PT again at least 3 times a week (I wanted inpatient physical rehab), they refused and gave me a last prescription to taper off of. They okayed the PT, but now I was in too much pain to handle much of anything, let alone PT to help re-stabilize my poor joints.
Now, no one will help me. I had to drop out of college. I can’t work, I’m on disability now. But I want to work (I’m one class away from the OTA program and 4 classes shy of a bachelor’s is psychology. I want to be happy and active, I miss my family (I’ve missed many holidays due to being in too much pain to be anywhere other than bed). I am so far de-conditioned now the pain is intolerable most days.
The thing is, I have quite a high tolerance to pain. Save the repeated passing out, that ruptured ectopic didn’t phase me. I just sat there. Once the hospital found out I’d had a rupture, they asked me aren’t you in pain? I sat there calmly and said yes very much so, but I’m used to pain. I’m in pain 24/7. Some days are much worse than others.
I’ve begged, I’ve cried, I’ve told them I’m at risk of suicide, I’ve asked for alternative therapies like prolo-therapy and ketamine with a hard no. None of which has garnered anyone’s attention to help me. All they want to do is give me painful steroid shots in already much declined joints.
I am one of the abandoned…
I want to end it, I think about it every single day. I have no quality of life. What am I supposed to do? How many of us have to become martyrs to make them see what they’re doing to those of us who are in legitimate pain, especially those of us with “invisible” illness (we face even more hell because we “don’t look sick” or “look too young”).
At this rate, my life is slipping away. It’s as if I’m dead already anyway.
After being ejected from a Ford Explorer on I-77 I had brain surgery on Thanksgiving Day. My spine was damaged from bottom to top, my jaw was broken, and my right elbow came out of place and wasn’t set back properly so calcium deposits formed and hardened into bone in my joint – locking my elbow in a bent position with less than 40% movement. It grinds every time I move it, and arthritis has set in and will only get worse and worse as I age. My sinuses were obstructed from the impact and I’ve had constant infections as a result. 5 years ago my ENT diagnosed me with a bacterial infection called Pseudomonas.
I’ve been on strong antibiotics and steroids steady for the last 5 years but my body just will not expel the infection and doctors can’t figure out why. They even tested me for Cystic Fibrosis as these patients are usually the ones battling this infection but that came back negative – thank God! I had a PICC line and IV antibiotics for 2 hours every day for a month but the Pseudomonas still came right back. The headaches are terrible, and my worst days are when the Pseudomonas, Occipital Neuralgia, and TMJ are all triggering at the same time. A couple weeks ago I consulted with a new pain doctor and he actually mocked me claiming that I didn’t need pain meds for my issues. He said this without even looking at my records yet, because he said he had not received them yet. Any trained eye looking at my scans has told me they would have questions if I didn’t require pain medicine.
I was first referred to a pain doctor that immediately started me on percocet. I was thrilled to have a medicine that actually worked as nothing over the counter helped my headaches at all anymore. At that point I was afraid to wake up each morning because when I woke with a headache it would last all day long until the sun went down no matter what I took/did.
I quickly became more and more tolerant to the low dose so the doctor just steadily increased me. Before I knew it I was taking [a higher dose] tablet [of a different med] [more often. I was concerned about my tolerance and asked if we could try to back down to a lower dose to try and leave some room to increase again when I have surgery. I knew I would be having several surgeries and wanted to be sure these meds worked well.
He put me on the lower dose and I did okay at first. Then I was in Nashville recording on Music Row and had the worst headache. My tracking producer and the band could tell how miserable I was, so he pulled the plug on the session and told me to go back to my room and rest because I looked terrible. I called my doctor’s answering service and one of the on-call doctors called me back. I explained what was happening and he asked me if I had enough to take two of the [lower dose tablets] at a time until I got home from my trip. I told him I did, but that would put me running out a week early. He told me not to worry about that because clearly I needed the [double-dose] tablets, so he told me to get through my trip taking two of the [single-dose] at a time and then come see them as soon as I get home to get back on the [higher-dose] tablets.
I did exactly as I was instructed to do. I went straight to their office as soon as I got home and my doctor came in and told me he wasn’t refilling me early. I explained exactly what his colleague had instructed me to do, and he responded with “well he is not your doctor, I am, and I didn’t tell you to do this.” I was furious! If I’m not supposed to listen to the on-call doctor then why would you have him calling your patients back after hours? He finally told me he would give me my refill early but if he did, it would be the last one he could ever give me. I had no choice. At this point I was physically dependent on this drug and the withdrawal on top of the headaches would probably kill me so I took the prescription and my primary doctor started treating me for pain. This was the beginning of the nightmare pain management rollercoaster I’ve been on for the last 13 years. I hate needing these meds but the reality is I will likely need them for the rest of my life. Every time a doctor finds a treatment plan that works well that doctor leaves/retires/changes clinics and my treatment plan has to change entirely despite the old plan working well.
I have had several very bad experiences with pain doctors and sadly most of them seem to think they can treat patients any way they please because we are nothing more than drug seekers to them and many of them act like glorified drug dealers. When I started having surgeries and procedures to try to fix at least some of my conditions that’s when the pain doctors really started treating me horribly. I guess they don’t like the idea that other specialists will be watching everything they do with my pain management or that they will need to work with the specialists/surgeons to manage my pain after surgeries/procedures. One pain doctor actually blackmailed me and said he would not give me the pain meds I needed and had been on for years if I didn’t allow him to give me injections in my spine. Injections that would not help my headaches and that my neurosurgeon said would be “an insult to injury” and I should not have them at this time. But I was out of medicine again and had no choice. My neurosurgeon was right. I spent that Christmas not only battling the headaches but now my back/neck was hurting like it hadn’t hurt before thanks to that doctor’s injections.
This summer has been the worst in pain management. I have less meds than I’ve had in 13 years and the pain hasn’t gotten any better in all those years. I’m doing what doctors tell me but somehow it always seems to blow up in my face. I wish there was a treatment that wasn’t controlled and didn’t have to involve pain doctors. I believe so many legitimate patients are being driven to illegal drugs just to deal with legitimate pain. This should not be happening in the USA! I’m horrified to have the 3 back surgeries I need, if I come out of surgery in worse pain, which often happens with back surgeries from what I’ve been told, how would I be able to stand it with these pain doctors not really treating pain anymore? Any pain patient that’s been in this for a while knows the constant struggle and I wish we had an advocate speaking on our behalf every time a politician uses the “opioid epidemic” as a campaign issue while ignoring the illegal drug trade in America. They need to leave me and my doctors alone and go after the illegal drug smugglers, but doctors and patients are a much easier target. Meanwhile half of Congress is probably getting their pain meds with no problem.
Hello, my name is Journey and I suffer with stage 4 endometriosis, rheumatoid arthritis, osteoarthritis, PCOS, and fibromyalgia. I was diagnosed with fibromyalgia when I was 18 years old and was sent to a pain clinic where they did absolutely nothing but give me a TENS unit and Lyrica. Lyrica made me gain so much weight and I’ve had a past eating disorder. During middle school I had really bad pelvic cramps but didn’t start my period till I was 15 years old. Every OBGYN I went to as a teen, kept telling my parents that it was your average bad period cramps.
Once I got older, around 2016 when the CDC guidelines came out, I was blacklisted at St. Mary’s Mercy Hospital in Livonia Michigan where I was listed as a complex patient because I frequently came to the ER several times, because I couldn’t control my pain. I had no PCP or no pain management doctor that would prescribe me opioid pain medication. I had to suffer and when it got so bad that I felt like I was dying, I would go to the ER. I would go to the ER like four times a month because it got that bad. Every visit was the same, doctors dismissing me accusing me of drug seeking. Don’t give me anything and actually kick me out because it’s not a medical emergency, but I do have a history of kidney stones and ovarian cysts. I have to be careful because I could have a ovarian torsion if there’s too many cysts, I would have to consent to emergency surgery. If they wouldn’t test me, I would be so scared thinking I was going to die. I heard ovarian torsions can cause death if not treated. I was dismissed so many times in the ER especially by male doctors because they think I’m over exaggerating and use my mental illness against me. I do suffer with depression and PTSD as I went through a sexual assault three times in my life.
In late 2018 I met a wonderful OBGYN female who gave me a laparoscopy in 2019 of April, diagnosed me with one of the worst cases of endometriosis in her practice! She has been managing my pain with Norcos but then lately she has been having trouble with CVS pharmacy filling my 42 tabs for a month, and saying she’s “overprescribing.” She is force-tapering me and I don’t think she wants to do it, but she’s so worried about her license more than her patients. I know she needs to make a living, but her helping me with my pain was a godsend. Now I’m back to square one, not receiving any proper pain management. All pain management in Michigan want to use steroid injections, nerve stimulators, and physical therapy. They do not believe in opioids unless you beg them, or prove that you don’t smoke medical marijuana.
I want to be an advocate for chronic pain patients because I felt like I was alone when I was accused of being a drug seeker at my local hospitals. I even brought my mom with me and they still treated me horribly, and my mom is my patient advocate. I have had chronic pain for 15 years now! I’ve been cut off of my hydrocodone and I am a big advocate for kratom and medical marijuana. Medical marijuana does not work for me but I am for it for other people that helps them. I also am an advocate for Kratom, Kratom works immensely! I feel 75% better with Kratom but however my Norco really helped me. I took it twice a day, once a day, or every other day if I’m having a pretty good pain day.
I did not choose this life and now I have to suffer the consequences because of people who chose to abuse. I am so honored to be part of the Don’t Punish Pain Rally because I really felt alone and so glad I met other people who are going through the same thing but upset that they’re going through this! Nobody should be denied pain management and opioids that make your life bearable. Opioids are a human right and your quality of life. My PCP currently is giving me a hard time saying I’m too young for all this pain and too fat, when I’m 95% bloated from the endometriosis. I have the early stages of rheumatoid arthritis in my hands and feet. My hands swell up the size of a rubber glove and very stiff, swollen, and red.
I told my current male PCP that my mom’s side of the family has a history of RA. He told me that rheumatoid arthritis does not hurt and does not affect the hands. I had to beg him for a blood test because he was not going to give me one, I told him I need to know if I’m okay. He sighed and rolled his eyes and said, “I guess I’ll give you blood work but I know your results will come back negative.” Got my test results back, diagnosed with RA. No apology from him or anything! How much gas-lighting can I take?
I’m in the process of trying to change my PCP but every time I call for a new PCP, right away they’ll say over the phone, “We can’t prescribe narcotics!” I’m not looking for narcotics, I’m looking for someone to take my pain and other chronic illnesses seriously. I want to take tests knowing that I’m not a drug seeking junkie, and know what my actual diagnoses are. I have my OBGYN who was prescribing but right now I have been cut off completely. I hope to have my pain meds back and I hope this opioid crisis comes to an end.
I went to Garden City Hospital one month after my surgery in 2019, I had a male doctor who said I forged my own laparoscopy surgical paperwork. He threatened to call the police and have me arrested for trying to steal drugs when I was curled over screaming in pain. I have a very low pain tolerance and pain hits me hard like a school bus. He mocked me when he kicked me out, and I was about to fall over in the hallway because the pain was so bad. He said out loud in front of everyone which is against the HIPAA law. He said, “There goes Journey walking out like she’s going to pass out, she’s so over-dramatic! She’s just a drug addict!” He even had the audacity to say that I made my blood pressure go up purposely so I could prove that I was in pain. My blood pressure was 160 over 105 when I got to the hospital. I was in so much pain and was curled over, I couldn’t even speak. He was rolling his eyes and laughing at me, and remembered me from a couple years ago. I felt like just giving up and ending my life right then and there. The suicide rate is so high, and I’ve been in that dark place many times. We need to end this atrocity and pain genocide towards chronic pain patients.
My heart is breaking just reading these stories of others pain. Journey, I dealt with the same issues you’re having, but fortunately for me, it was 25 years ago when doctors could help patients without fear of a politician pretending to be a doctor and a cop. It took 3 years of agony, and doctors treating me like a drug addict.
We moved from California to Washington as I had attempted suicide three times due to the pain. In Washington, the first obgyn I went to, saved my life. He immediately knew what was wrong and wanted to confirm it laparoscopically. I’ll never forget, after the procedure, he came to my room, where my husband and I were waiting for news. Doctor came in and held my hand and said, “It looks like a bomb went off inside you.” He scheduled a complete hysterectomy, however my endometriosis continued to grow everywhere. He said in rare cases like mine, the endo will make its own estrogen to feed on and grow.
For about a year, I would go in and have to have new endo cut out, burned and whatever else they do. My doctor actually purchased a special camera to photograph my insides for education purposes. Finally, I started passing blood in my stool so the endo had penetrated my colon. My obgyn sent me to a surgeon to have some of my colon removed. At the pre-op appointment I was crying, the doctor told my husband I better knock it off or he would reschedule. He thought I was being dramatic. After the surgery, the strangest thing happened. This man dressed in black leather from head to toe comes in to my room. It was my surgeon on his day off. He came to apologize for his treatment of me on our first visit. He had removed a couple of feet of my colon and new endo. I was utterly shocked that this pompous ass had realized the severity of my issue to the point of apology.
At this point, my doctor said I could continue to get cleaned out every couple months or go to a pain doctor who can help me have some quality of life. I had a 2 and 4 year old at home that I could barely care for so we opted for pain management. Fortunately I found the next doctor who would save my life. He tried everything in the book to control my pain, but realized opioids were my only relief. I have an extremely high tolerance for opioids. For example, 6 norco is equivalent to an Advil for me. Luckily back in the day, doctors could treat each patient’s individual needs. (My mom and aunt have the same problem with pain medicine.) It kicks in fast but only helps for about two hours.
The amount of opioids I was on back then shocks my doctors now. They think it should have killed me. But instead it gave me my life back. I could care for my family, work a part time job. I drove all the time and had no problem. After about 10 years, my pain began to subside and I decided to stop taking pain meds cold turkey. We were prepared for withdrawals, but nothing happened. I was fine. Fast forward 10 years. 4 kidney surgeries (I also have chronic stones) and 4 foot surgeries within two years and again I’m back in debilitating pain. But this time, politicians are playing doctor, like they have a clue, and doctors are afraid to help their patients. I have several problems with my spine causing pain almost everywhere. My pain doctor gives me injections which don’t help, and opioids equivalent to a baby aspirin for me. Suicide seems like the only option most days but I moved to Virginia a year ago to be by my grandkids and I’m trying desperately hard to endure this hell for them.
It is insane how this “opioid crisis” is being handled. Personally I’m sorry that drug addicts are dying because they choose to abuse drugs. But that’s on them. I didn’t choose to be in so much pain, and to be honest, I thought about buying street drugs, but I wouldn’t even know where to begin. I’ll be 50 in 2 months and all I want is to live my life, play with my grandkids and not consider suicide every day.
POLITICIANS, STOP PLAYING GOD, DOCTOR AND POLICE.
One day you may be struck with unbearable pain or have to watch a loved one suffer, then you will understand but it will be too late for many of us. Go do your political nonsense on something that doesn’t hurt and sometimes kill the honest hardworking people you’re meant to protect and serve. You’re not equipped to handle or understand this kind of pain, so let the doctors who are, do their job.
It’s ridiculous that we even need things like this website to fight for something that should be a given.
First, do no harm. That is what physicians vow to do. I can tell you in my life, I can’t count the doctors who have harmed me since this ludicrous bull***t started. But I like to think it’s because they are scared of the repercussions and not that they don’t believe me or care.
Where did our humanity go wrong? How is it even a thing to let innocent people suffer? Their deaths are on your hands so I hope you can live with it. Sadly you don’t seem to even care.
Bonnie
My son is 19 years old. He had a kidney transplant at 12 years old and cannot take NSAIDs. He has a history of Chiari malformation, scoliosis, degenerative disc disease, rheumatoid arthritis, irritable bowel disease, and has a nerve impinged in scar tissue on his thigh from a previous surgery. For every one of these diagnoses it was like pulling teeth for the doctors to believe that something was wrong. Now that he has these diagnoses you would think he would get some pain relief! Wrong, he is told over and over again to take Tylenol and is prescribed a low dose muscle relaxer. He has been hospitalized twice for suicidal ideations/attempts because of his pain and feeling like nobody believes him. I work in healthcare and understand that there is an opioid crisis, but there are also those that have true pain. How is it right to leave those in pain because of those that abuse???
I have seen Sandra Erickson at The Pain Center and she cut my dosage of oxy by a quarter. I am in pain and I called to leave a message for my provider to go back to the original dose, the call back said she said no, and that I’m supposed to taper off. She said to give it a try for a month for my body to get used to a smaller dosage. What are my options?
Some of your stories sound so familiar, they are all heartbreaking. I honestly never knew anything about pain and suffering until 2016 when I was diagnosed with Ankylosing Spondylitis and Fibromyalgia at 36 years old. I had never been to the ER, had stitches, broken a bone, or ever really been sick at all. Needless to say, I wasn’t able to accept being bed bound due to chronic pain gracefully. I still haven’t fully accepted that I was served a life sentence without the possibility of parole (AKA pain management). Try not to let my next sentence shock you or cause you any additional pain from lol’ing too hard… I had absolutely no idea that patients in America were told to go home and suffer for the rest of their lives! Lol! No lie! How many of you have been told to just eat a healthier diet, continue exercising in excruciating pain and to practice breathing techniques to reduce your pain level? Or just take a few NSAID’s to help control the pain. At this point is when I started to question the credibility of all these medical professionals. For some reason, I continued to schedule appointments with the best of the best because I was still somehow naive enough to believe that someone would actually help me.
I was wrong. I eventually lost my job as a Special Education teacher, a job that I loved dearly. That financial hardship lead to us to losing our home as well. I can’t even describe the level of fear and panic that I started to experience. I have a wonderful husband and two beautiful daughters. I couldn’t remain bed bound and watch them struggle to care for me, that wasn’t an option. I made the choice to seek help in alternate ways and discovered hope again. I can’t even begin to describe what our lives are like now. We were forced to go from the Brady Brunch to an episode straight out of the Ozark series with the quickness. I never knew this world existed but it’s very real. The only thing that the opioid restrictions changed, was whose hand that the prescriptions land in first. The elderly population along with the high poverty population who receive Medicare and Medicaid, use their monthly covered prescriptions to help supplement their income. For some reason, they are freely prescribed. No questions asked or diagnosis required. The majority of them sell their entire prescriptions, minus the 3 pills they keep in order to pass their drug test the following month. They usually only sell to specific people, these people are the “drug dealers”. They usually pay them $500-$800 for 117 opioids. That’s where “we” come in, all of us who are suffering and bed bound without medication. The ones who are desperate to stop the pain and willing to pay any price for an ounce of relief and a sense of normalcy. The ones who have lost all hope in our healthcare system. The ones who have been forced to live like criminals. The ones who have stood in line at a pain clinic and been treated like a drug addict. Those are the ones I am speaking of, the ones who are just like me. Those of us that love life and want to continue living it to the very best of our ability. We wake up every single day and hustle our hearts out just to hand it all over to these “drug dealers”. We pay $15 per opioid on a good day. When the supply starts getting low, we usually pay $30+ per opioid. Did y’all hear me clearly? $30 each! An average chronic pain patient requires at least 5 opioids per day, that averages at least $100-$150 per day.
This is the “America” that we live in.
Wake up people.
I am a 52 year old mother of 4. In the past 6 years I have had 3 spinal fusion surgeries resulting in 14 screws in my spine. The screws were to stabilize my spine, but have not relieved my pain. In addition I have new discs that are bulging which will probably eventually require more spinal surgeries. I was diagnosed with Fibromyalgia 22 years ago as well as an autoimmune disease, Hashimotos Thyroiditis. I am in pain 24/7. Do you know how exhausting it is to work, have relationships and just function when you are in pain every second of your life?
A good day for me is when my pain level is at a 2-3, but it is never a zero. When I am flared up (which happens when storms roll through, I over-did it at work, or just pissed off my back by turning just a little too much when I buckle my seat belt) my pain shoots to an 8. That means my entire back is on fire, I have nerve pain searing down my legs that feels like I am getting poked by hundreds of burning hot needles, and my spine feels like it has a vice on it. In addition my cervical spine has flares that will give me excruciating pain at the base of my skull which tenses up my muscles so badly my skull is raw and tender to the touch resulting in a migraine. A new added twist is the pain will make me throw up if it gets bad enough.
I will get these flare-ups several times a week. But I still need to work to provide for my family, and put on a smile because people don’t like a complainer. I have tried physical therapy, acupuncture, exercising (which even just walking is painful now), over the counter meds, ointments, injections into my spine and even using lasers to kill the nerves in my neck to get rid of the pain (the nerves eventually regenerate). My pain management doctor has prescribed opioids and they help. But because of new regulations I can only get a very, very limited amount. So I have to wait until the pain is unbearable, like curl up in a ball and rock back and forth completely unable to sleep before I allow myself the luxury of taking one of my precious pain meds … gotta make them stretch.
I have been told to take a bunch of Benadryl when the pain is really bad at night to try to sleep through the pain. The stigma and negative messages about pain meds out there make me feel guilty when I take them. I am made to feel guilty for needing a medication to help me get rid of the horrible pain. Guilty! Are diabetics made to feel guilty for needing insulin? Or course not. But chronic pain sufferers with legitimate causes for their pain are made to feel like junkies, or weak because we need help. How is that fair or just? Why am I a bad person for not wanting to be in pain ALL THE TIME?
I suffer from CRPS/RSD and full body neuropathy. The pain with CRPS and neuropathy is so intense that I cannot walk most of the time. When I walk it feels like I am stepping on glass and my bones in my foot, leg, and pelvis feel like it is crushing every bone. It’s like getting cut, if you picture a knife is filleting my muscles. Like when you fillet a fish.
Imagine experiencing that and having to feel it every second of every day. There is no reprieve and no relief at all. The burning is like somebody has poured gasoline in my body and lit me on fire. At the same time, the skin feels numb, as if you were standing in a block of ice how it begins to burn and you could not ever jump out. It feels so cold at the same time as burning and on fire. It is unrelenting, burning, crushing, and never goes away. For a lot of chronic pain sufferers, pain comes and goes. But CRPS patients feel this pain non-stop. There is no getting out of it. It is the most horrific pain a person could ever feel.
They say the pain is worse on the pain scale than cancer, amputations, and childbirth without any anesthesia. Being a mother of 3, they’re not wrong. I know it’s much worse than childbirth. I’ve never experienced cancer or an amputation, so I couldn’t attest to that. But it wears on you every day. It is dubbed the suicide disease because the agony is unbearable and there’s no hope out there for getting better for someone who has it and goes undiagnosed and untreated for years. Because it is so ignored by the medical community and not taught to every doctor, as it should be in school, it went undiagnosed in me for four years (there are thousands out there that go undiagnosed to this day).
It is at a stage in me where treatment is only about keeping me as comfortable as possible until the end of my life. No help in anything over the counter. I have had 2 spinal stimulator implants put in, which has done absolutely nothing for me. It actually made things worse. I have tried injections, nerve blocks, nerve ablations, and countless medications. You name it and I have most likely tried it, to no avail. I understand the narcotic epidemic. I get why things need to be addressed and the system needs to have checks and balances in place. But taking away narcotics from the people who desperately need them to be able to live as comfortable of a life as possible is NOT the answer!
We need to have our doctors treat us by whatever means necessary, so that we can live life and be there for the ones that we love, so we don’t have to be miserable and in so much pain that we don’t want to go on living. You have seen a rise in suicides because doctors are scared to treat their patients. The government should never presume to know what’s best between a doctor and a patient. A doctor should be able to treat a patient as they see fit to have some semblance of a life.
I can understand a system where one can look and see if patients are doctor hopping or hospital hopping to score drugs. That should be done. But someone who is going to the same doctor or same ER is not trying to hide anything. They are just trying to get relief from this hell we are living in. The hospitals and the doctors should be able to discuss their patient’s options openly, honestly, and freely. Not have their hands tied. They need to be encouraged to feel free to assess and treat each individual patient’s needs. Don’t let people who abuse it ruin it for the ones who truly need it and choose to use it responsibly. Don’t force these people to go on the streets to get relief or worse: take their own life! Help us patients that need it! Please! One more day is too much for us.
Thank you so much for taking the time to read mine and all of the pain patients cries for help. May God bless you and keep you, and may he lay on your heart to do the right thing. Please untie our doctors’ hands, and fight for the forgotten pain patients, and help take away our needless suffering.