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.
I have arthritis with bone on bone contact in both shoulders and left knee. The pain is intense. I recently replaced my right hip joint. I can hardly function anymore. To complicate matters I recently had 4 stents placed in my heart and my kidneys failed. I was taken off all NSAID’s and any opioid containing acetaminophen in order to get my kidney back functioning. That left me with only my prescription for morphine. Now my Federal BC/BS insurance is going to not renew my pain management physician’s contract that covers opioid connected services. I’m being punished for all the abusers.
I so agree with the don’t punish pain. I have had chronic back pain for years and had both knees replaced and suffer chronic pain from the knee surgeries. I think the news media found something to put in the news and it was completely slanted. I have taken hydrocodone and oxycodone for years. I have taken it as prescribed. If people are abusing prescriptions I tell people, is it the doctors fault, the pharmacists fault, or is it the fault of the person that is abusing the prescription. If people are abusing how they are taking their prescriptions then don’t punish everyone. Due to abuse the milligram dosage is so minimal that its almost like taking baby aspirin. I will attend a rally for the first time in my life. I am 70 years old and most older people suffer from chronic pain. Don’t make us suffer because some people abuse their prescribed drugs.
Out of the blue when I was 38 years old – over 18 years ago I developed trigeminal neuralgia and facial pain after one year of bumping into problem after problem with doctors either not understanding or unwilling to treat my pain I found a wonderful support group at Beaumont Hospital in Royal Oak Michigan I also found some amazing doctors It is been a real struggle over the past almost 20 years dealing with uninformed rude belittling and unsympathetic doctors and pharmacists I’ve been yelled that at pharmacies and not believed by doctors I am lucky enough and much wiser about these issues to now for the most part have things under control the changes on a daily basis and as I watch ridiculous politicians and others talk about the opioid crisis it blows my mind I get both sides of the coin but someone needs to actually sit down with the pain patient and try and understand What we go through I have a friend that is a hospice doctor and tells me that because of Hyppa laws after a person dies the family is left with the unused medications from them where do they think those are going -Duh? We are a true minority and just dealing with the pain is enough but having to fight this stupid system is ridiculous .I am so blessed to have found the doctor I have now and I have had some really good ones over the years but they are very few and far between and the honest and decent ones are being constantly harassed for treating pain properly. The unscrupulous doctors and patients taking advantage of the system have made it terrible for pain patients . Together we have to figure something out
Do they really think that we want to be on these medications ? To have to deal with finding doctors and pharmacies that would help us ? I follow my medication regimen to the T. I’ve never overdosed or had a car accident from being under the influence I keep my meds under lock and key and I do what I’m supposed to do . I work and have raised kids and lead basically normal life besides having had all the issues surrounding being a pain patient . I have tried so many different treatments to try and help the situation nothing has really helped besides pain medication anti-seizure medication that I take for the lightning strike pain of my trigeminal neuralgia and facial pain . I do use bio feedback to help at particularly painful times which has -when I can do it .I have tried acupuncture cranial sacral therapy , injections yoga ,chiropractic ,massage , supplements vitamin B injections Nsaids over the counter medication and so many other non-opiate medications among other things I can’t even remember to try and help this but it just doesn’t . Trigeminal neuralgia is also called the suicide disease because the pain can be so intense . Mine is all on the right side of my face which is a very strange feeling and hard to explain to people because I am so busy and have a full life people don’t understand what I deal with on a day-to-day basis – except others who also do . Don’t they see what’s happened over the last 20 years with the “opioid crisis ‘ people are going to find ways to get rid of their pain and we’ve watched what’s happened over the years as people have had a harder and harder time . Good doctors are being treated like criminals for trying to help people with pain . Medication costs are ridiculously expensive and if you don’t have insurance well -.good luck , if you can get the insurance it’s so crazy expensive to be covered . We need to be listened to and understood . I don’t Get why they don’t talk to people that are having problems instead of making up stupid decisions about what they think is happening. Pain can’t be seen so you have to believe somebody if they have it Well you’re supposed to anyway . I wish there was a way to have some of these lawmakers live one day in our shoes . Things would change then wouldn’t they? I’m terribly saddened by people that are dealing with addiction issues involving opiates and it makes those of us who are legitimate have a really bad time .
I was diagnosed in 1987 with a severe form of early onset degenerative disc disease. I was injured at work and could not longer continue in my chosen profession. As a result I changed paths and earned my Bachelor’s degree in Business management . Unfortunately by 2000 the pain became too severe to continue work so I was forced to undergo a double fusion at l2-3 and l3-4. Unfortunately I now suffer from failed back syndrome and I am unable to work as the issues with my lower back are unresolved.
I have been on numerous opioid medications. I believe I’ve tried them all as well as physical therapy, injections, chiropractic , weight reduction, talk therapy, massage, acupuncture tens units and surgery. None of which have been successfully in managing my pain.
I have worked with my doctors to find a solution to my debilitating pain. I have discovered that a patch applied once every 2 days along with 4 pills per day work well along with moderate exercise and a healthy diet allows me a decent quality of life. I have successfully been on this regimen without a need to increase for almost 19 years. Unfortunately although I have had no issue with overdose, early refills or lost or stolen scripts, I am being forced to step down my medications due to the new CDC guidelines published in Oct 2017 as well as our new Nevada law AB474.
What that means for me is that I am required to cut back to 1 lower dose patch every 3 days with no pill for breakthrough pain in order to be compliant with the CDC recommendation of 60 milligrams of morphine equivalent per month. I am currently down to a 1 patch every 3 days along with lower dose of pills. As a result of this drastic reduction in medication I no longer sleep more than two consecutive hours per day. I am no longer able to exercise nor am I able to complete the day to day duties my family requires. Instead I am bed ridden.
I tried to get off of all narcotics in 06 with disastrous results and was basically bed ridden with no quality of life. My PM stated that I could take Suboxone to avoid withdrawal but it would not be effective for managing my pain and I have learned that if I took the Suboxone I will be labeled an addict by the medical community. This is not acceptable to me.
I have done extensive research on the CDC guidelines and well as Ab474. I have called and emailed Govenor Sandoval, Dean Heller, James Settlemeyer and Robin Titus and President Trump. Both Sandoval and Heller’s office referred me to the pharmacy board. One man I spoke to there just explained AB474. Otherwise I have received zero communication or help for my situation.
It appears that the CDC guidelines and AB474 leave no allowances for legitimate patients. Pain dependent patients are caught up in the “opioid epidemic “ fatalities and overdose statistics that are bloated (30,000+ including street drugs. The correct number is 17,000+) and mainly concern street level deaths and hospitalizations. The facts are that PM patients who abuse their medications and become addicted are 8% of pain management community. The majority of the deaths reported pertain to heroin and street drugs laced with fentanyl.
Chronic pain patients need help NOW. We are suffering and being punished for something we have not done. We need help obtaining our medications today. The law must be changed and pain management patients must not be left to suffer. Please help us.
We didn’t ask for terminal illness or chronic diseases.. everyone seems to forget us.
My name is Brad. I was injured by using heavy equipment at my job. I filed a claim with “Workers Compensation”. They gave me two choices: one would be to retire early and to collect social security. My other choice was to get my contractors license and start my own business. I knew that if I continued to work, I would need pain meds. So I decided to work. Sometimes my hands lock up at the end of the day. But with help from pain management, I can tolerate the pain. Unfortunately, there is no amount of pain medication that can take all the pain away. But I am not an addict so I still suffer because I know that taking too much pain medication is too dangerous. I just want to be a productive member of society. I’m not looking for any miracles.
Why are you taking away the only thing that keeps us from bed bound agony? I have severe spinal stenosis, a failed lumbar fusion, SIX reconstructive knee operations. I’ve had my gallbladder removed, a hysterectomy, and carpal tunnel surgery. I have Psoriatic Arthritis, Hashimotis disease, and absolutely no gut motility due to an undiagnosed GI disease. I am looking forward to having my intestines removed. Yet I am still not disabled enough for social security!! I have heard MANY stories of people committing suicide due to pain medication being taken away. People who DO NOT abuse it. People who would literally rather DIE without it. Even with medical cannabis (which I cannot afford) I would not be able to keep going. I’ve already had my medicine reduced, (which forced me to no longer be able to work) despite being on the exact same dose for NINE years with the same doctor, and absolutely no problems on my end. If you take my pain medication away anymore than you already have, why would I want to live in agony? I have to depend on others already for EVERYTHING. My pain is bad, yet mostly manageable. If you take anymore away, my death, like all the others, will be on YOU.
I’ve had chronic illness my whole life, which comes with severe pain. I was able to deal with the pain up until a bad car accident when I was 17 (1996) that injured my back and neck. I started on opioid therapy at that time, which drastically improved my quality of life. I also did acupuncture, reiki, other religious and spiritual rituals for healing, massage, PT, steroid injections and health diet and pilates. With the assistance of opioid therapy, I managed to make a good life for myself. I worked my way through college and got my graduate degree in 2007. I opened my own agency providing mental health and outpatient substance use treatment. It was very successful and was a huge need in my small rural community. Due to the autoimmune disease progression, I became disabled May of 2014, but was able to keep my business going through supervising employees and doing the books and insurance claims. I became debt free in 2015! I purchased a new home Feb, 2016, a very proud moment for me. I accomplished so much on my own in the last several years despite being horribly ill. Then the CDC guidelines came out. I was forced on a fast titration off my pain medication. From 220MME to ZERO in 4 months. I lost my business, all I’d worked for, and will soon lose my home. I am bedridden now with a full time caregiver. I’m on public assistance (food, medical, caregiving ect.). No longer a contributing member of society. People lost their jobs with me. My community has suffered because the services I provided are no longer available. I can no longer do any hobbies I once enjoyed. I’ve lost friends/family because they cant understand that just getting up out of bed is a huge accomplishment for me but it causes severe pain so I cannot do any activities after that. The severe pain is causing cognition issues. I cannot concentrate on reading a book, I have difficulties watching movies and retaining what’s happening in the story. Pain is exhausting!! I no longer look like myself. The untreated severe pain has literally robbed me of EVERYTHING I had in life and I had a great life. There were certainly struggles, but ones I could deal with. Because of a few pills a day that were maliciously taken from me, I’m now a shell of a human confined to a prison of 4 walls and no hope. This has to change NoW! I won’t live like this much longer. I’ll join the ones that have taken their lives because of the unrelenting severe pain and agony. Until then, I fight for our rights to live with less pain or pain free. I fight for our doctors’ rights to provide that for us. And I’ll vote accordingly as well.
I have suffered in pain for several years from a water skiing accident, and I can tell you, first hand of the affects of the cutbacks on my medication!!
I take my medicine as prescribed, and always have for several years, and if taken properly, you can function on a daily basis, but without it, I wouldn’t be able to live a normal life! These medicines have helped me so much, but now, they aren’t working as good anymore, well they do to some degree, but ever since they cut the strength in half, as well as cut the amount per day in half, it is causing me to suffer a great deal! I’m back in bed, most of the time thru-out the day, I don’t cook as much anymore, it’s like I’m going backwards, not forward!
So why are they punishing the patients who need it? This is a good question, that many people like myself, are asking, and are demanding answers, and are demanding CHANGE!!! Because I’m not buying it, that too many people are dying from taking these drugs!!!
If that was the the case, I would have been dead along time ago!! They are using other stuff along with the medication, they are drinking alcohol with them, who knows what all?
It’s not legit pain patients that are dying on these drugs, it’s the drug addicts, not us, but the Media won’t tell you that! Another thing you don’t hear the Media mention, is that people have been committing suicide , what they will mention, is another death associated with pain medication! What they fail to mention, is the reason of the suicide was due to the fact they were unable to get their meds, one reason could be, they were cut off, or the Doctor stopped prescribing them, another reason, they weren’t getting enough, due to the cutbacks, another reason they were sick of going to pharmacy, after pharmacy to try and get them filled because they aren’t in stock most of the time etc; etc. All of the reasons I just mentioned, were caused by our government!!! The “crackdown” so to speak!!
They could care less about us! Patient rights? They don’t care about that either!
Now when I go to the Doctor, you are forced to take a drug test! Talk about the government treating you like a drug addict!!
They are even drug testing elderly patients!! What kinda BS is this anyway?
We are treated like addicts, treated like dogs, but yet even though they treat us like animals, they wouldn’t dare let an animal suffer, like humans are at the moment! No no, it’s against the law to do that, but the government is getting away with treating humans like that.
There is something seriously wrong with this picture folks!! Very wrong!!!
They are turning law abiding citizens into criminals, ‘cause they are so desperate to take their pain away, that they’ll do just about anything to do so.
Patients are turning to Heroin, because it is much easier to get!
So hear this government….if you back enough people in the corner, they’re going to snap, they’re going to fight back! People are getting desperate to relieve their pain.
Please let the ones in need have it! The Doctors know what’s best for the patients, not our government!!
The DEA has taken this too far! You guys won’t admit it, but you’ve had many deaths due to the patients not getting the meds they need, and it’s just going to get worse!!
I need surgery to try and help fix my problem, and my biggest fear is , what if the surgery doesn’t help, and I’ll be in worse shape than ever before, (‘cause there’s no guarantees with surgery) what will I do if I need more of the meds and CAN’T GET THEM??? Just suffer??
Those are my only options??
It doesn’t take a Rocket Scientist to figure out, that the powers at be, the ones responsible for cutting patients back on their meds, really didn’t think these new guidelines through they created, because if they did, I wouldn’t have to worry about surgery not working, I could take that risk and have surgery, but I can’t, because of the “what if’s”!
I certainly want to be better, but this is my life now, and I suffer every single day, due to the chronic pain I have, and it was much more manageable before the government stepped in and made my life a living hell!
The medication helps me lead a normal life, why on earth would the government want to take that away?