Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I have impinged nerve root, arthritis in feet, degenerate disc disease
   I’ve been told the impinged vertebrae will get better, my stress causes my pain,
   Some days I can not walk
   But ……. I could cry when I’ve read some of the stories of ones in pain
   I feel it is criminal to take pain medication away from ones suffering.
   As I write this, I’m glad I’m 78 because my pain will end before long.
   The veterans being denied pain medication for injuries they got fighting for our country
   Be real , you politicians, if world still here in 50 years , this will be looked on as a dark time in our world
   Are the politicians in pain b denied pain medication, I would bet not.

2. I have a severely damaged spinal cord from a botched back surgery. Before my surgery I had some of what I thought were painful days stemming from lumbar disc problems, I was still highly mobile, active and working full-time doing lots of physical work. Now, I have been reduced to being bedbound most of my day. The pain levels I experience now are exponentially worse than what I used to think real pain was. Without powerful opioids, I would be a useless quivering, crying lump of a person with no hope of any physical movement. My unchecked pain would render me unable to perform the most basic of everyday living, with no desire to see another day.

3. From “his” wife. A letter just written to a pain doctor in SF CA. I have not slept in 48 hours.

   Hello Dr. Fields. I am seeking your advice help for my husband. We live in Arizona we will be going to Northern California in a couple weeks to visit my family if I can get him on the plane. My husband who’s had failed back surgeries and then legally disabled and in pain for 12 years at 57 it’s now being tortured in Arizona. I am afraid. He’s only had one pain doctor since we moved here 9 years ago. Pain doctor closes doors a few months ago. Nobody wanted to take Dr Bo McClain’s patients but we thought it was a godsend that he found a doctor not a pain specialist in a strip mall in Surprise Arizona that agreed to continue his long-term chronic pain management until 2 months ago she said she needed to start reducing it. Mind you he was at the point where the doctor thought he should probably increase it but my husband knows there’s only so far to go with it. He’s on pain patches and changes one out every night. And still that doesn’t even take away his pain it only dulls it. His quality of life is still not good but we’ve been managing I don’t know what we’re going to do now I’m afraid. My husband is not a weak man but this made to him in, our family. I can’t even believe I’m saying this about my husband. This new doctor continued the treatment protocol the prior doctor was doing until 2 months ago she said she had to start reducing it out of the blue. She told him not to worry just go 2 months with her reducing the 25 milligrams and then she give it back to him last week. When he got there she said no I’m not giving it back to you in fact I’m going to reduce it more right after Christmas. Oh my gosh I don’t know. I don’t know what we’re going to do. My husband was so upset when he got home . If it wasn’t bad enough his quality our quality of life before, this is going to get even worse in a way I can’t imagine. His primary doctor says she doesn’t even know how he gets out of bed . And it’s always been the steady Rock. I’ve never seen him cry but once when his father died in 13 years. But I heard them twice already. he says he’s not good enough for us. He needs to just let us go. So we can have a life which is ridiculous we’re having a life without him he’s the best daddy in the whole world so I like to know what everybody else is excuse is.
   He’s already lost another 10 lb, he doesn’t hardly sleep or eat. That’s the way it was before. Now it’s worse. One doctor Dr. Bo McClain a Surprise anesthesiologist, has all his records. It’s almost 2 a.m. here now I didn’t sleep the night before. And see we have a 12 year old son we’re 57 and 56. Our son is in the Spectrum so I had to be the mom Warrior for him and I was and he’s just fine he’s in a private Christian School. But we don’t have any family no one to take him out of this and my husband is just not himself. I don’t know what’s going to happen. I’m just searching for someone that knows that this is not right and can help in any way I referral to someone that will help him and he’s off for getting off the pain meds if you know what treatment would have done it all he already was tortured 12 years ago and he’s worse . No one has ever been able to explain why his feet are always cold and you can’t touch them or her go through the roof . They did all the nerve test and I came out with nothing the only thing we suspect is he makes excessive amount of scar tissue when she found out when he had melanoma in his arm and they took it out on the scar the amount of Scar that develops on top of arm was not normal . Weird unsuspected that’s what’s going on in his back to . Dr Bo says has pains worse also because his spines deteriorating and it’s all arthritic up and down his hips and shoulders . We they have tried everything. He was hurt at work working for a state this state did this torture to him for a year during lawsuit because they did not want to admit that my husband Rod was permanently disabled and in pain from two failed surgeries. That didn’t have to be they pushed him back to work in 6 weeks. The lawyer told us he should have been back to work for a year. He rupturedagain and the rest is history. They tried every drug under the sun. Epidurasl don’t Help. Any other procedure they’ve done doesn’t help. We even spent last of our savings on an experimental procedure Dr Kevin pauza with the spine and joint Hospital in Tyler Texas was doing. He thought he could reduce rods Pain by maybe 40%. Yeah reduced it but it was very short-lived. When it was reduced he asked his doctor to reduce his fentanyl patch amount. My husband doesn’t even like drugs. They’ve already tried everything, the psychologist, candidate for the stimulator no and everything has been tried. That state he worked for did not want to concede that Rod was in chronic pain and there is absolutely no work he could do. He applied online for disability from the government and there was a check in the mail with back pay within 3 weeks. His lawyer said he’s never seen that in his life. I’m sure it helped that I took thick nicely organized stack from the lawyer in with all Rods records and dropped it off the next day out the Social Security office. All they had to do is look at that and he was awarded in fact we had a check in the mail before we had the award letter. That has to mean something. I wish there was something that would take away pain. And so does our young son. He wants to know why God doesn’t heal Daddy. I don’t know what’s going to happen to us my husband’s decidiste ho I’m stressed out trying to support us as a realtor he’s not in a position to do this for himself so I have to do this to I have to find somebody. None of the doctors want to take on anybody all I rod. My only thing I’m working on is finding someone like you locating is dr. Bo McClain anesthesiologist and asking him to write a recommendation letter 4 rod if by some chance there is a doctor somewhere here that is treating chronically ill patients like rod if we even have a chance we have to have something from dr. Bo McClain this new doctor turned on him and now is treating him like a drug seeker. This is very serious. Now we don’t have money I will find a way I like I always do. I just so happens we are going to be in Northern California December 19th through for 9 days. I also need to add. My husband has always been resistant to pain medication. His mother was a nurse and she told me that one rod was a child he required three times the amount of Novocaine to get numb at the dentist. I had DNA run on him and a report that shows he has the gene that gives him increased pain. Also when he was getting procedures I had to insist they know. They needed to make sure that Rob was out before they started to do procedure on him the first time they did. The second time the assistant then didn’t listen to me. He woke up during the procedure and they held him down to finish it. Insisting he was not awake while they were holding him down and cutting on his back. He remembers every detail. So I’m sure you have a lot of people that need you. But we need you my husband even if you could just call someone near to us that’s closer that will treat Rod and if there’s something that will help them that would be wonderful but I don’t know what’s going to happen if this pain is not managed right now he can’t go a day without eyes and we can’t questions doctor she may not give him his medicine. These this bad being reduced 25 mg oh my God. So where do I go where do I take Rod?
   Thank you. Please advise

4. What a journey living with chronic pain since 2007. I am a master’s prepared RN with a 44 yr. Work history, I loved every minute. I have endured 4 back surgeries, 22 epidural, faucet injections, placement and removal of a spinal cord stimulator. It’s ironic, in 2002 I was teaching chronic pain classes to caregivers. I knew the statistics of people with chronic pain, but in the back of my mind I thought, why don’t these people just buck up? Now, I know!
   In the mid 90s I was President of the Oregon State Board of Nursing. Approximately in the early 2000s, the Board mandated that ALL nurses attend a 8 hr. CUE in treating chronic pain. The classes were taught by Purdue. Makes one wonder why a clinical class was taught by a sales rep.? The theory was to just keep increasing dosage to cover tolerance. We all drank the poolside.
   Staring in 2009 I found the ONLY thing that gave me somewhat of a functional life was opioid. I have since taken them as prescribed. The access to pain meds has evolved into nothing short of a degrading nightmare. I live part time in 2 states. My physician in California is caring and respectful. Whereas, my physician in Oregon has me reigned in so tight…..monthly urine, monthly appointments. It is degrading and highly embarrassing. Perhaps he is in fear of his professional license? The practice management between the 2 states is like night and day.
   The access to medications are problematic as well. Sometimes the pharmacies are out and won’t get another shipment for 2 days. Since you can’t refill early, your solution is to lay in bed detoxing.
   Without pain medication, I know I’d be bedridden, clutching my Bible praying for relief and a miracle.
   I understand the opioid crisis. It’s dreadful. But please please don’t punish those of us who are compliant. Please give us better access to medication. Would you deny a diabetic their insulin? To individuals in chronic pain, opioid are our insulin, it IS life saving.
   Thank you for this platform to express our thoughts.

5. I have been a chronic pain patient fir 15 years and this year has been the worst. I had to have my pain pump removed due to a catheter break and subsequent Meningitis. I then fell under the new guidelines for opiate Usage . I was rapidly reduced from an Intrathecal dose of 1000 mgs to the maximum oral level allowed in Arizona. I have always followed the rules, but this is the worst. I now have a compromised spine with a retained catheter due to it being scarred in, failed laminectomy syndrome, herniated discs, osteoporosis, degenerative disc disease, bone spurs plus a chronic digestive disorder and immune system problem. There is nobody who wants to help as I have been classified as an addict. They can’t increase my medication due to fear of losing their license. Where have physicians and this country gone in “ First do no harm” and the violation of my rights to be taken seriously and humanely. It doesn’t take a scientist to see what may happen next.

6. I was a successful teacher of 21 years when I developed degenerative spine disease which progressing to 4 spinal surgeries, a failed fusion, and unrelenting intractable pain which made it hard to get out of bed wash my hair or to do much of anything except pray to die. I tried to kill myself a year after my final spine surgery. I did not want to live anymore. I could not walk, eat, or sleep and was slowly dying at age 48. I finally got into a pain clinic which saved my life. I now have a pain pump and take oral opiod medications that give me back some quality of life. I can help with my grandson on the weekends and make a meal and go grocery shopping. I am very grateful to have found some relief. I worry everyday about not being able to afford or get my medications. It seems to be trending to blame drug companies for all of the addiction problems people have with the medications I am on for pain. People do not see the people who really need these drugs to live. I would love to go to treatment and get off them. I do not have that option since that would be a death sentence for me. I feel that intractable pain patients are being forgotten and that no one understands that there is suffering out there that requires opiods. It is inhumane not to treat this type of pain and it can lead to a premature horrible slow death if not diagnosed and treated properly. We treat our pets better when we see there suffering. This extreme reaction to the opiod problem is causing inhumane treatment of those who truly suffer. Many who are addicts do not get their drugs from doctors. I don’t see allot done with illegal drugs. It is easier to go after well meaning doctors and hospitals instead street drugs. I agree there needs to be monitoring but drugs are being withheld from dying people in pain.

7. headaches have ruined everything and recently moved to a different state so the ” doctor ” here thinks after years of being on medications that i obviously don’t need any of them ??? the guy treated me terribly and made me feel like pain is a sign of weakness and because he went to college to be a doctor he is automatically better than me , a failed surgery in 16 by a different doctor has taken me to a place i’d never thought i’d be …. completely done don’t care about anything i’m not a person anymore i’m a headache , what is so cool is there is zero accountability in the medical community the doc that did my surgery won’t respond to me or see me and any ” new ” doctors automatically don’t want to take on my case this is horrible and i’ve helped others in my life in 03 i gave away a kidney to help someone … so anyways thanks for taking the time to read if anyone has any ideas feel free to comment !

8. Hey pain patients. Any sites that anyone finds that we cpp can get our plight through to Washington, please let us know? I’m listing my name and email,I don’t check it often and use it even less but I will definitely make a point to check it and see if anyone has any sites that I can pass on to get us heard. I don’t want to read about any more dead people who are gone because they couldn’t live with the agony? Especially me, because the only thing keeping me holding on is my family, my doc and the belief that the government will see the error of their ways and the belief that any human being, after knowing what is happening with the legit pain patients will cease to let it continue? We all know what the deal is so I’m not going to reiterate. I know it’s really, really hard when you are in debilitating pain with seemingly no way out! Every minute feels like an eternity!! If anyone knows of a news person that does human interest stories, especially in Florida, let me know. I can’t give up because I don’t want to die but I can’t live with this pain and suffering, the inability to care for myself or my home, family and pets. I’m fortunate enough to have been approved for disability benefits back in 05. Only took two years for a judge and with all the treatment and expenses prior to that, all toled, cost me literally everything! I lost my house, auto, insurance, 401k, savings, etc. I didn’t think I would have ever made it through that, on top of fighting with medical people and facilities trying to get pain relief!! After spending half my life going through all that, being as miserable and suffering as much as any human could. Like being tortured and fighting the enemy for your release. They just continue to laugh at you until you are basically just existing and waiting for death!! I know alot of us need our meds so we can do our jobs and have any kind of desperately needed income! There is another thing the government didn’t think of, all the cpp that will be going on or over flowing the system and courts, who are already yrs behind, trying to get on disability and or state and government assistance. All the medical costs the Medicare and others will be racking up! The list goes on and on. I’ve listed so many issues that are going to affect government negatively that they have not thought of on top of what they’re doing to us. We can’t give up! I for one had a decent life before this even though I griped all the time about stuff I could do any longer! Now I just wish it would be like it was before all this crap happened, through no fault of the legit cpp. Don’t give up,I need you guys on pain news network, to keep me motivated and not give up myself! I don’t know if this site will be read by anyone who cares in Washington? I doubt those responsible for starting and pushing all this are going to voluntarily read anything that has to do with the huge mistakes they’ve made?? They’re not going to admit anything or wrong doing or inaccurate facts, statistics, etc!! Need to get to the President, republicans, DEA and the AG! Since Sessions is gone, maybe we can get someone in their office to understand how detrimental this is to so many American citizens?? Hang in there folks, I feel you, are right there with you. Some of us worse than others but we’re all on or in the same boat fighting for our lives, literally. Ttfn, Teri. 😕😢😣😤 Don’t or try not to be crying because they don’t care about us! We have to get mad and more, let them know that there are too many of us who are not going to tolerate the government taking our rights and we’re not going anywhere!!! We are not going away and we will be gathering in front of the white house, talking to the press and anyone else that will listen and spread our message, educate the folks who think legit scripts are killing their loved ones. I don’t believe those ppl wanted this, especially with no results on the true culprits!!

9. I was diagnosed with rheumatoid arthritis and spinal stenosis in 2008. I have been dealing with the pain not being able to walk right or lift things. I am raising my granddaughter and in 2008 she was just three years old. I was so sick that she had to go stay with her mother in a program. Naturally the program really changed her at 3 years old. Now 10 years later I went into the hospital for a dental mess up and two days later found out that I have stage 3 cancer. Colon and ovarian. I have a good doctor and I told him I just wanted to see my granddaughter graduate. She is 13 so she still has four years of high school. He seems to think I will be okay and everyone has been upbeat in the office that I go to. It’s called C-care. So far so good. They do all the treatments in the office and that’s that’s good.They can watch and see how you’re reacting. I don’t have much hair left because of the methotrexate that I had to take for my rheumatoid so I’m hoping I don’t lose too much and if I do I’m hoping I can find a suitable human hair wig to cover up my baldness. I pray everyday and other people have prayed for me. I’m keeping the faith.

10. I am a 52 year old chronic pain sufferer due to multi-level DJD of the lumbar and cervical spine. I’ve been living with pain for roughly 10 years. Ironically, I was in the best shape of my life when my chronic pain started, and 40 pounds lighter. My back aches constantly, no matter the position, my thighs ache all the time when I’m sitting, and my feet cramp up many times a day and night. It’s impacted all aspects of my life. I constantly have to think of where I’m going and what the set-up is like when I get there because I can only tolerate sitting or standing for short periods. The medications cause side effects that are no fun to deal with, but when you have no other option, you deal. Imagine dealing with that non-stop for 10 years. I believe most people, intellectually understand what it might be like to live with chronic pain, for such a long time: not too good. Sadly, no one has a clue what it’s like to live a life of chronic pain, unless they’ve experienced it themselves. The emotional toll it has taken is significant: depression, anxiety, suicidal thoughts, and fear have all been frequent ‘visitors’ throughout this journey. I have a wife, and two children who need me, so I plug away, working a full-time job, up until recently. I can’t get through a full week anymore because of the pain. Mind you, this is all occuring while on pain medication. The pain is still there, but at least I can work most days because of the medication. I’ve been through all the conservative measures; ultimately, the only thing that gets me through my day and allows me to work, is pain medication. I’ve consulted with a surgeon who suggested that he could fuse my lumbar spine (3 levels); however, the chances of having a good outcome were poor. He stated: ‘that if you were my brother, I would recommend not getting this done.’ It was his suggestion to try a pain pump and buy myself some time until the surgical technique/technology improves. Fortunately, I was a good candidate for a pain pump (not every chronic pain suffer is) and eventually got one surgically implanted, but I still need oral meds to get through my day. My pain has improved, with the pump, and my life is okay at this time, but I’m not the same happy person I was ten years ago. Chronic pain sucks! And unless you’ve had to bear it’s life-sucking misery, you just don’t get it. The opioid epidemic is a joke based on poor statistical analysis, data collection and poor research. You might have heard the expression: there’s lies, there’s damn lies and then there’s statistics. Well, as far as the opioid epidemic is concerned, the statistics that are constantly thrown around are laughable. It’s very easy to twist and tweak, the stats, to tell any story that one wants the general public to hear. No doubt there is abuse, misuse and diversion, but there always has been and there always will be. FYI opium has been around for literally thousands of years. Opioids are tools, just like any other drug that a physician prescribes for a patient. **NEWS FLASH** people abuse and misuse them all the time, but I don’t. I would venture to guess that most legit pain sufferers are just like me. I’m no stats expert, but I’ve taken it in college, and I know how easy it is manipulate numbers to tell any story you want. Understanding and interpretation is a whole other animal. There is so many well educated, smart people, who do not have the proper knowledge, when it comes to statistical interpretation, giving opinions on important issues like this, and they should just keep their mouth shut. Any arbitrary cut-off that implies there’s no benefit above a certain threshold (I’m talking about you 90 MME) better be based on solid research. It’s mind boggling that important regulation and policy affecting so many people is based on such weak research. But we gotta do something-right? No, we don’t until we have enough good info to make a good decision. That’s why doctors have licenses and years of training. It’s amazing to me that the people who actually know what their talking about aren’t being asked what to do. I can attest to the fact that there are many people who live far above 90 MME per day and are perfectly fine. Anyone with knowledge of the pharmacology of these meds knows that to be true, and knows the difference between physiological tolerance and addiction. The opioid epidemic is a complex issue and will not be solved using arbitrary cut-offs and weak science to curb it. There are many, legitimate, hard-working good people who suffer in silence every day with chronic pain and to ‘cut them off’ from something that can literally save a life, should be a crime. I consider myself one of the lucky ones with chronic pain. There are so many other people, that have medical situations worse than mine, that can’t get out of bed without having access to these meds. Your friendly Pharmacist, Physical therapist and chronic pain sufferer all-in-one signing off.