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.
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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.
This is for my husband. He has had 10 spinal surgeries. 8 of them have been fusions. He has RA, fibro, neuropathy as well. He is also a diabetic. It all started in 2016 after his last fusion. His surgeon sent him to a pain doctor for after surgery care. Now my husband has been disabled since 2006, deemed never to work again. Now this pain doctor started him off great. He felt better and was getting around pretty good. After about 2-3 months the doc said he was gonna start dropping his meds and get him back to work. WAIT WHAT!? This doc obviously did not read his records. We looked at him with a lot of confusion. We both said to the doc that he was disabled and would not be returning to work. And the doc just shrugged it off and continued to ween him down to almost nothing. When we did finally find another doc to take over it has been a nightmare since. Each doc wants him to get shots that are both painful and some make his blood sugar so high we end up at the hospital. And don’t get me started on how the hospital treats pain patients. Point being is that we have not been able to find him anyone to help. No one listens or cares. He is not able to get out of bed these days. He’s a great husband and father but the last 2 years he hasn’t been to more than 2 of our kids sporting events. I feel like a single parent right now. I’m stressed and I have to watch him everyday slowly get worse.
I am so tired of hearing opiods do not work for long term pain. That there are no studies that prove they work or that the harms outweigh the benefits. There are over 20 million intractable pain disease patients that have taken what PROP calls high doses of opiods for 10 years or longer. Tried step therapies for years and tried suicide because of pain. Finally got MRI and x-rays that showed progression of disease. By now I developed depression and anxiety. Finally put on opiod therapy, and it gave me a part of my life back. Then Anna Nicole passed and it was like I did something wrong. The government started the over-reach into my toolbag of medicines, they started with my anxiety meds. Stated I could only be treated for one of the two. I had been taking 15 medications the years prior to being prescribed z@*@* and @@. I traded all the psycho drugs for two with great strides to my health and well being. That is one hell of a study. Not only we lived, we raised family, worked, kept homes and sent our kids to college and could function. Not this bullshit. I had a tooth pulled, got addicted, started shooting heroin, lost my house, job and got put in jail! My sons have been raised in my home by loving parents that took opiods to live and function plus participate in their lives, not escape. All three are police and military. Now come the CDC doubles down and boom, my life is back where I started 20 years ago. All the strides, money spent, experiments/meds for nothing!! I can not and will not deal with the horrendous pain, I do have a exit plan.
I have been on and off pain meds for about 6-7 years. Started with carpal tunnel surgery one hand then the next. Then a spinal surgery that did NOT work I’m in just as much pain now as I was before. I have arthritis in both knees. From my neck to shoulders arms elbows and hands daily chronic pain. It hurts to do lol things like brushing my dam hair. On the times I’ve been off pain meds I have NEVER said well I guess I’ll just shove a needle into me full of heroin. It pisses me off when I hear opioid epidemic! It’s not. It’s a heroin and fentynal epidemic! No one that I’ve ever heard has died from taking their meds responsibly and that’s the word responsibly. Now finding a doctor willing to give anything stronger than Tylenol is impossible. And it pisses me off so much. I get so much flack from the FB people who say pain is all in my head or I’m judging people or I’m ignorant. I’m stating only my opinion my experience. And in my opinion the junkies have messed it up for people who are in chronic daily pain.
Was pinned by a Jeep in between a 5 ton a/c unit. Crushed my pelvis and damaged my spine. Was stable on my few meds, and when my doctor retired in 2015, the suffering began. Referring me to a pain clinic, and went for 1 year with sometimes up to, and over 50 people in one room, for hours. Only to see a nurse practitioner, that checked my blood pressure, and sent back into waiting room. Then after another 2 hours, still only seen by NP to refill prescriptions.
Couldn’t do it any longer, after the murder of my sister, after working at a pain clinic. Found dead at work, in lawyer’s office… I found a primary care physician in 2019, but he took me off my regular medication and replaced with subutex. It is what it is…
The pain clinic was a month to month basis. The primary care, is every 4 months… I can’t afford this new medication, another year. To make matters worse, they threaten, forced tapering, of either pain meds, or my Klonopin, stable since age 15! Norco stable, since 2006…
I have an upcoming appointment in April, and until then, have found a few other doctors that won’t force Subutex on me. Too expensive. Doesn’t work for my pain, as well. The doctor insisted, and claims it’s 20x stronger than my other… It’s 20× more expensive, and that’s all.
I was in a car wreck a year and half ago. After therapy didn’t help I was sent to a pain management doctor. He was able to help with mild medication and then an injection which ended my pain for a year. After that it came back and nothing is helping and my new pain doctor is not budging on giving me anything strong enough to ease my pain. I am just stuck at home in bed in pain until my next procedure to see if it will help. I am in unbearable pain daily as a mom of 3 and wife this is unacceptable and cruel not only to me but to my family. If I was able to ease my pain with stronger medication I would be able to walk, cook, clean, care for kids and myself, and play with my toddler. It’s depressing and frustrating to be in this situation. I need help!
I have been on opioids for 8 years now due to a bladder condition. It is autoimmune. It has broken down the lining of my bladder. Urine, which is acidic, burns me all day, every day. Sometimes my bladder gets so painful it begins to spasm. Oh Lord help me when that happens. Those feel like intense labor pains. My pain medicine allows me to function day to day. I started working in a nursing home at 15 yrs old. I was 85 pounds soaking wet but lifting large elderly men and women. I was there to help the seniors and get a head start for nursing school. What happened inadvertently was the decimation of my back. A “nurses back” they call it. It’s hell, that’s what I call it.
And NOW they want to take away anti-anxiety meds because of my pain meds. I was raped 5 years ago in Chicago in a violent fashion. Night terrors, PTSD, insomnia, and panic attacks when I’m alone with men. I am furious our healthcare system has come to this. It is shameful in the greatest country in the land.
Thanks all you fentanyl addicts, you’ve successfully ruined your own lives and now soooo many others.
My husband suffers from complex regional pain syndrome for 20 years. He has met every requirement to have medications that allow him to have quality of life. His doctor retired and the new one who took over the practice is abandoning him.
Cutting medications so that pain won’t allow him to function. Response today was go to hospital.
This is barbaric. Our family cannot believe what is taking place.
I pray your organization can make a change soon for all that are suffering.
Doctors need to read the CDC guidelines that were amended May 2019.
I have restless leg syndrome and periodic limb movement disorder, both of which can be controlled by low dose opiates.
I tried all the treatments short of opiates and didn’t get far. An iron infusion might help, but they aren’t entirely safe (I feel comfortable with the tiny risk but my PCP doesn’t).
Finally my pain doc started prescribing [a little] oxycodone and [a little] Ambien. That worked pretty well. Over the 18 months I was allowed those meds, my pain level gradually subsided (probably due to better sleep from less RLS and PLMD). I never needed a dose increase.
HOWEVER the state law changed, and now she cannot prescribe those drugs to me again. And my sleep quantity and quality is very poor again due to RLS and PLMD. And my pain levels are rising again.
(I never abused those drugs. They don’t seem to make me high at all.)
Guess I’ll try kratom. Not sure what else I can do — at end of treatment road for RLS+PLMD unless PCP lets me have infusions.
(Couldn’t tolerate dopamine agonists in effective doses. Oral iron upsets stomach badly although I take the very small amount I can tolerate — not enough.)
I have a very rare wildly painful degenerative genetic disease. I just kind of landed in the middle of this war. My doctor and I stayed away from opioids for as long as we could, I did physical therapy, nerve pain medications, diet modifications, and every single thing you can think of and nothing slowed down the progression of my disease. My daily pain right now, with medication, diet modifications, vitamins, meditation, stretching, sleep maintenance and success, resting at least 90% of the day, on a day I do everything perfectly; I would describe as 17 migraines. It is a pain level that is out of this world. Only very recently, in response to out of control pain that is now affecting my blood pressure, digestive system, immune system, lymphatic system, and my endocrine system, only after we had explored every single legitimate treatment option with very limited results, only then did my doctor and I turn to limited opioid use. This disease is literally depositing tumors anywhere it can find a nerve ending. Right now I have thousands of them, describing the level of pain I am at day to day (with about 30 prescription medications that are not opioids) is impossible.
I’ve only just started trying opioids, and the ridiculous thing is that they don’t help that much. I can’t take them very often because my body stops getting any benefit with repeated use. I am only using them to get a minor, short term reduction in my wild unending pain ride. My doctor just told me today that insurances (I’m on Medicaid now, bedbound) won’t approve them because of the opioid epidemic. He said I have my last 10 pills I’ll probably get. He said he’ll fight for me but he doesn’t think he’ll win.
The little “breaks” I get from the opioids really are the only functional moments I have. It wouldn’t be honest to say that suicide doesn’t seem like basically the only option. Every single thing about this illness is so hard. Everything. I don’t understand why some assholes are trying to make money off of torturing me while I’m already about as vulnerable as a person can get. It is highly immoral, definitely unethical, and should be illegal.
The first thing that has to happen is the end of the psychopath we call a president to be history. The second is to get the insurance companies and pharmaceutical companies out of our doctors offices. And finally return to the humane way that the medical field is supposed to treat any and all patients with compassion and dignity. All doctors are forced to ignore and abandon the oath that they are supposed to abide by. This propaganda style opioid crisis is all financially motivated and is all just smelly deceit orchestrated to deny legitimate patients the humane care that they should have a “Doctors” decision towards the proper treatment for each particular situation not one size fits all bullshit. I have personally witnessed the elderly in long term facilities in agonizing crying pain so desperate for pain relief it’s just awful to even think that healthcare professionals would allow this because of the overwhelming paperwork brought on by the devils who orchestrated the regulations to make the desperate ones only wish for their life to end. All involved with this manipulation of humane medical treatment will face judgement and I will pray for them not to be told to eat Tylenol and deal with it and become part of the millions now needlessly having to suffer and trying their very best to keep the thought of harming themselves because they have been abandoned. God bless you all and let’s all have faith that the wicked involved with this abomination are awoken very soon by their own inability to deal with pain that consumes every second of their life.