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 live with 24/7 intractable severe chronic pain. It started in 2002, when, as a school counselor (34 years), supervising 350 8th graders, a fight broke out between two big boys, as I tried to break it up. It quickly turned into 350 out of control students that broke into a school riot. I was the only one on duty. When a parent/school bookkeeper employee heard the screams from her office she went to investigate. She went to the principal’s office and screamed “riot, staff member down”. The principal locker herself in the office and made no attempt to report and neither did the resource officer in the building. The incident was buried. I suffered severe permanent injuries. I had to take a one year FEMA leave to recover. I had severe PTSD. I went to Florida where my children’s business was located to recover. Mosquitoes bit my Grandson, Daughter, Son-In-Law and 4 dogs. All of us sustained severe itching and unrelenting biting that eventually developed into lesions all over our entire bodies. We went to the emergency room at St. Petersburg Hospital where they declared we had lice. We went to many ER rooms with the same results. We spent large sums of money to of no avail. My ID doctor turned a diagnosis of dirofilaria immitis, a blood parasite much like malaria. She obtained Diethylcarbamazine after the Center for Disease Control requested a frozen blood sample. My family became well, but I became systemic caused by the delay in the administration of the drug. The parasitic disease director whose name I will not invoke, said, “This does not occur in the US.” The Florida state Epidemiology Dept declared the same…total denial. I have lived since 2005-present with severe chest pain and oxygen deprivation caused by the parasites. Elisa, Western Blot, PCR and DNA testing all turned positives for dirfilaria (the dog heartworm). Our dogs were under veterinary care but that made no difference, as they were as sick as we were. You could see worms in their stools. My dirofilaria became so painful, I ended up twice for approx one week in St. Petersburg intensive care and the Tampa Bay Heart institute. My doctor (from New Delhi) understood parasitic diseases and saved me with high dose harsh antibiotics and antiparasitics. A lot of people who acquired this have died. God has allowed me to live from 2005 to the present, 2018. I have suffered daily in a debilitated state without reprieve. No doctors understand this disease in Louisville, KY or other cities included. Every case is different and every vector carries different organisms. Doctors are not trained to deal with parasitic and different protozoans in their medical school programs. There are many organisms: mosquitoes, midges, fleas, ticks, flies, etc (vector borne disease carry), NOT just one. I have turned up with Lyme disease that started in 2012 and Bartonella that started in 2013. I have tried every possible treatment and drug there is to control the pain but nothing works like the opiates for this level of pain. I follow protocol with pain management but have been cut back due to government policies, therefore, I am unable to care for myself, eat, bathe or function at all since the opioid cutback. The opiates managed my pain only to a certain point but I was able to function and get out of bed. That is no longer the case. The human cruelty is eventually going to effect every man, woman and child sometime in their lifetime. Our government is going after the people, especially the doctors, who are in legitimate pain management in the guise it will stop drug abuse. I am an addictions counselor, a career counselor, a certified social worker and a school counselor. I have taught at all levels including college. When I applied for Social Security Disability, it was determined by the back injuries sustained from the school riot. The truth was buried no matter what scientific evidence, and medical testing I had with regard to a blood parasite even though I had positive tests. It became clear to me that Florida is a tourist state and that is why there is a coverup. Sadly, the disease continues to be transmitted in ALL states due to the denial by the people in authority, not the dirofilaria immitis, Lyme disease and many of the co-infections that occur with it. I would like for all to know that I take diethycarbamazine and miltefesone (from out of the country) so that when a mosquito bites me, I do not transmit the disease. It has now become a real problem for sufferers, doctors, and patients because there is no recognition of the disease. It leaves the patient without emotional support or validation. It leaves the doctors fearful of the DEA coming in and losing their licences. My most recent doctor checked me out last month, did not say goodbye and when I went to leave, was informed he would no longer be treating ANY pain patients. He did this to ALL of his patients. His story is NOT unique. There are a few brave souls who still prescribe, but many have dropped out and refuse to write a script for fear of the DEA. It is clearly sent through the news that 2019 is going to be even worse for chronic pain sufferers, emergency rooms and OR rooms. Lately, I have had family members that have suffered tremendously from having simple surgeries and needed to rest,but couldn’t because they were not given adequate pain medicine. It is tragic for all. Sadly, this isn’t going to save lives and it isn’t going to stop the hard core street drugs that are distributed daily. There is much news on heroin deaths, fentanyl & other illicit drugs. There is NO reporting of suicides from the people who could not handle the chronic severe pain and therefore, took care of it themselves, while their families grieved and could not understand why their loved one would commit such an act. Why are those statistics not being published? There are many in that pool of people. It is well known that the people who are in positions of wealth and power will always get what they need but the middle class and below has been literally obliterated. It is tragic for all. When will someone in our government stand up and stop the extreme madness going on. One more thing…it is notable that many people should not be driving in excessive severe pain. It is dangerous. People should take pain medication as prescribed by their doctor in order to drive safely. One more notable thing….many people were functioning on the job because they were receiving pain care under the close supervision of a doctor. Those people will no longer be going to work for they cannot tolerate the pain they are under. I am excluding fields where people cannot take pain management on the job, but many jobs are attainable with pain management and close supervision. It will be interesting to see the workforce dwindle and become erratic as we continue these “perceived solutions” to stop the hard core drug addictions, distributions and people who do no work other than selling, using and distributing themselves. It is tragic.
In 2010 I was hurt on the job . I had surgery on my shoulder & a pain stimulator placed my spine in hopes that would help with my pain . No one told me that I’d have horrible pain at the battery site of my pain stimulator . I also hurt my neck in the same incident . After 25 years of nursing my career is over . I’ve been battling work comp for 8 years now & now this . They take away my pain meds . I was in 2 % danger zone is what my pain management Dr told me but the FDA when asked by my Dr if he could treat his patient on a case by case scale they said no they were going to cut pain meds all across the board . Because I have PTSD I take klonopin for this & panic disorder so that cut my pain meds off . So I said so it’s being a crazy basket case or hurting I have to choose between. The answer was the FDA don’t care . You see on the news alot were animal owner aren’t caring for their pets & go to jail or prison even but they can tell a human being I’m sorry your hurting but that’s how it is . My Bp is usually always dangerously high because of my pain . My quality of life is little to none . I can’t partake in activities with my kids & grandkids . I simple exist . As for tears I have no more it’s placed with disappointment that the USA would allow us to go on & suffer they way I do daily . I have no say so In my health care . I hope that these people setting their desk & have no clue how I feel everyday will search their hearts . I feel we are being punished because of the notoriety of the death of several famous people due to pain meds but don’t punish us punish their Drs . I have so much documentation on my injuries & the pain causes me on a daily basis but it doesn’t matter !!! What a world we live in .
I am a 62 year old female with chronic pain for 15 years. I have done everything from Chiropractor, exercise, pt heat,ice, massage and even pain patches. All of this takes strength, energy and the ability to move your body. Not to mention money. A simple dose of pain medication three times a day get me thru some very painful times. I can live my life proactively. I don’t mind going through all the hell to get this prescription if it helps get the Illegal Drugs off the streets. But what I do mind is that heron addictive people get more attention and help, like free methadone, free medical care, clean needles. They break the law and get help. Opioid pain medication for chronic pain is not the problem in this country, but take it away from us and you will have a problem. We will be forced to find the medication illegally along with the real drug abusers. Sad day in America.
I was diagnosed with Fibromyalgia in 1999 and after 3 yrs of misery trying to find something that helped and didn’t affect my depression and anxiety,my doctor put me on 25 transdermal Fentanyl.After 17 yrs of being stable on my med,the dose was decreased to 12. I also have Degenerative Disc Disease and Diabetes Neuropathy.So far I have had no success in getting my med raised.I am existing on Aleve and Ketorolac which can affect my Proteinuria and damage my kidneys,and Flexeril which depresses me to the point of suicidal iterations.I was active in my church,my quilt guild ,kept my house,went to the gym,and drove to visit my mother 9 hrs away.Now I am housebound and my day consist of finding ways to try to escape the pain.I have no quality of life.
Im 64, disabled since 04, numerous conditions , trigeminal neuralgia, intractable pain, polyneuropathy,2 kinds arthritis , to name a few, which btw from 1998 until 2014, was treated with both compassion and opioids, higher dose above 500mmme a day. With the amount of meds until 2004 was able to enjoy a vacation, travel to see family in other states, take care of my household duties , able to drive long distances to visit family. Now since 2016,, after being just cost off rx meds, cancer, heart problems, chronic kidney disease from nsaids, live a third of my former activities. My outtings consist of mostly dr visits , no more vacations, travel to family, my house is unclean, but, do the best i can. My life now is an existance, albiet it lonely . On bad days, im inside alone, crying from the pain, wishing i could cut my legs off and be done with that pain . But, im better off than most, after being cut off of my meds which allowed me more freedom to just have a life , i fought to re build my records to prove my pain, thinking, im doing things right way, they have to see that my pain legitimate , right? No. BUT , after seeing the third pain dr, she aggreed to give a minimun of help, but, not without doing things like contracts , urine tests, etc. Started out with 2 pills a day, i was ecstatic just to have a modicam of relief. But, sadly , as im aging, problems are accelerating, so, those 2 pills are not enough. So, knowing that in todays climate , id be taking a chance of losing the little i had , by asking for just one more a day, she did, but was stern thats all id be getting, dont ever ask again. This leaves me to be in pain , but, at least now have few hours of small breaks, relief, so, plan each day accordingly, meds and pain level. I question the rules made by the cdc , not fda. Drs fears are real, and wont dare give relief , sad to say, until things change and cpp’s are treated as individuals in agony should be. Being almost 65, healt deteriorating, dont expect , with my now increasing med problems, to be here in 5 years. If i had appropriate dosing, who knows, bp might improve, but, certainly would be able to enjoy the few years left to me. I exist now, would love to be a real participant in my family, and Live.
I have been living with chronic pain since February, 2002 after my first ever chiropractic adjustment had went horribly wrong. As if displacing my spinal cord wasn’t bad enough, I went in for major surgery in November, 2002. I was told that this was necessary, or I was at risk for paralysis from the chest down, since my injury was at the thoracic level. After waking up from a very long surgery, I was in some of the absolute worst pain I had felt, but it didn’t stop there. You see, they didn’t do the surgery that they claimed to do, or what the surgical report states because my films show the exact opposite! In fact, no one knows what they had actually done during that surgery, but one thing is for certain, they absolutely destroyed my back, to the point that it can no longer be corrected, without a 99% chance of paralysis before surgery is every completed! I was 30 years old when this happened, and as if no longer being able to lay, sit, stand, sleep or barely walk wasn’t bad enough, I was forced to go on permanent disability. I also had two very young children when this happened, so needless to say, mama was at home in pain, instead of being able to live life and enjoy their youth with them. I could no longer cope with the pain of trying to sleep, sit, walk or simply exist, so I had to reach out for help! That took a lot for me, because I have always had the ‘I can do it, I’m fine, I don’t need any help” outlook on everything, but this definitely opened my eyes to a totally different world. Once I started pain management, I finally felt some pain relief and was able to actually get up and start to be able to do little things with my daughters again, which meant the world to me! Like they say “you don’t know what you’ve got, until it’s gone”, and it rang true in every sense of the expression! I have tried every other option there is for pain management, (besides pain medications) but they all very much failed. Without the help of my pain management doctor, I would have absolutely NO quality of life! I am still going to pain management to this day, because it’s became a part of my life. I have to rely on this method, in order to be able to have somewhat of a life without excruciating pain. Since this injury, I now also has herniated discs at every level,, spinal stenosis, spondylosis, degenerative discs, bone spurs, arthritis in my spine, nerve damage and fibromyalgia. These are things on top of having a disc pushing up against and moving the spinal cord, so as you can see, I do have significant damages, as well as reasons for needing pain management. However, I have also been very fortunate to have the most amazing pain management doctor right beside me! My doctor is very knowledgeable on pain treatment and has worked out a regimen for my specific needs, but without my doctor being able to treat me and my pain, I fear what that could bring. I have dealt with the depression from a lack of being able to live a normal physical life, but the depression from chronic nonstop pain and hopelessness topped it all! My doctor has shown me that my life actually is worth something, and I don’t have to be in severe pain, regardless that I was just dismissed and thrown to the side by the two people responsible for my injury, who are in fact also in the medical field! Those living with chronic pain shouldn’t be made to feel like their desire to live a full life doesn’t matter, or that their life isn’t equal to those without needing pain management. We shouldn’t be made to feel like we’re a drug addict or doing something wrong either. The fact of the matter is, without my doctors specific treatment for my injury, I will have no quality of life at all anymore. I tried to go without medication in the first several months of my injury, and I had no quality of life then. I just can’t fathom the thought of having such an amazing doctor that’s helped me for several years, and has been able to help obtain relief from my severe pain, just to suddenly stop and have taken away from me! It should be viewed as unethical, and goes against everything that pain management doctors study and train for. Those living with chronic pain should be equally entitled to receive appropriate medical treatment for their medical needs, just as those who are entitled to receive care for diabetes, cancer, high blood pressure, heart disease, in need of oxygen, etc etc. Please, I beg you to stop and think what this will do by taking away pain management for those in need, because it’s not only unjust, it’s also cruel and inhumane! I am taking a stand in defending my doctor to be able to treat my unique injury and pain relief needs, (as well as everyone else’s) as well as a stand for myself to be able to live a semi functional life and receive the appropriate medical care necessary. This so called “epidemic” isn’t even an epidemic, it’s called medical treatment for many people! I think the government has confused pain management with the homemade Fentanyl pills being brought into our country, which is causing a high rate of overdose, but that’s far different than pain management! Pain management is just that, managing chronic pain. By cutting people off of their medications, all it’s going to do is cause people to seek their own pain relief on the streets from other substances, such as heroine, or they’re going to end up committing suicide because they can’t get any help with pain relief! Chronic pain isn’t an epidemic, and neither is the legit treatment for chronic pain! I can guarantee that if someone trying to have pain medication taken away had to live with chronic pain day in and day out like the rest of us do, they would understand that this is a very big issue. You’re essentially telling us that our life and quality of life doesn’t matter, and we can just suffer, bottom line! Whatever happen to the oath, and “do no harm”!? If you’re going to get technical about it and say that pain medication causes harm, so does MANY other medications for many other illnesses, but I don’t see anyone trying to lobby against those medications. In fact, drain cleaner, bleach, antifreeze, gasoline, etc etc etc is also deadly if consumed, but who is trying to stop the production or sales for any of those things? Call it petty, but that’s a very valid point!
I will define the numbers in the numeric system of rating pain at the end of this missive so we are all on the same page as to the meanings.
The only thing that stops me from ending my life due to my suffering at my current, constant pain level of 8, is what it would do to my family. At an 8, what they would suffer trumps my suffering. I will continue to suffer to save them emotional pain. But this is the most I can take. If I lose any more of my pain relief- I’ve already been forcibly stepped down- I will no longer be able to cope with the pain. It is so hard now! I have done research on the quickest, most successful way to commit suicide. If my pain goes up at a constant level I will kill myself. I have made my family aware of this. I don’t want to die, but I just can’t cope with more pain!
I have two rare diseases, both of which cause chronic pain. I am bedridden due to having my opioid medications stepped down from a dose that worked, after the prior to this round of federal “guidelines.” Before the step down I was at a daily pain level of around five. At a five I was limited, but was still able to socialize a bit with friends, occasionally do laundry, cook, vacuum, grocery shop, do light cleaning and run errands.
My daily pain, *with* medication, is now a constant 8. It never stops. That means I no longer can drive as my pain is too distracting. I have trouble falling asleep and the pain wakes me in four to five hours. I do not get my own pills as the pain stops me from forming memories and I can’t remember if I have or haven’t taken them. I can’t pay the bills for the same reason. I can’t cook, clean or do laundry. All of the household chores and responsibilities have fallen solely on my husband. (I thank God for him and his love!) I can’t go grocery shopping and must do all purchases online or via my husband. He also has to wash my hair as reaching above my shoulders is intensely painful. I lose track of conversations in the middle of them because pain is the dominant thing on my mind. I can’t have someone talk to me while the tv or radio is on as I lose track of the conversation. I have trouble focusing on reading or watching television and often have to read/watch something several times. My main hobbies were reading, crocheting, breeding fish and beading and I can no longer do any but read. I used to walk in sand for an hour, four days a week, but now am unable to exercise due to the pain. I leave the house less than five times a year. Those are generally medical visits. I sometimes can’t walk to the bathroom by myself. There have been times that my husband has had to lift me off of the toilet. I have not been able to go to a friends house since mid 2014. Because my home is not company-worthy (my husband is so overworked!) I no longer have people over. My social contact is phone, texts and email. My husband has to do everything, which is hard on both of us. Anyone who thinks we have chosen this life needs to think again. And no, I am not on public assistance. My husband and I struggle through on our own!
The inability to be productive or work has damaged my sense of self worth. I come from a family that believes in pulling your own weight! I really miss working and get jealous of my husband when he leaves in the morning. While I was unable to work prior to them taking away some of my pain relief, many on it are still working and supporting their families. Losing adequate pain relief will cause many to no longer be able to work. That impacts everyone as they join those on public assistance.
I also live with the knowledge that a study by Northwestern University has shown that Chronic Pain damages The Brain! That concerns me greatly!
The worst thing I have ever done in the “breaking the law” area is speeding. (I paid my fine without complaint.) Yet the lives of people who illegally obtain and use opioids are counted as being more important than my life! I am sorry for the friends and family of addicts, and even for the addicts themselves, but I HAVE DONE NOTHING WRONG! I have two documented diagnoses and I am under a doctor’s treatment. I have a medical need! Why must those with an actual medical need suffer to keep those engaged in illegal pursuits safe?
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Pain Level 1
Very Mild
Very light barely noticeable pain, like a mosquito bite or a poison ivy itch. Most of the time you never think about the pain.
Pain Level 2
Discomforting
Minor pain, like lightly pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails. People can react differently to this self-test.
Pain Level 3
Tolerable
Very noticeable pain, like an accidental cut, a blow to the nose causing a bloody nose, or a doctor giving you an injection. The pain is not so strong that you cannot get used to it. Eventually, most of the time you don’t notice the pain, as you have adapted to it.
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Moderate Pain Levels
Moderate pain levels interfere with many daily activities. These pain levels usually require some lifestyle changes but you can remain independent, however, you are unable to adapt to the pain.
Pain Level 4
Distressing
Strong, deep pain, like an average toothache, the initial pain from a bee sting, or minor trauma to part of the body, such as stubbing your toe real hard. So strong you notice the pain all the time and cannot completely adapt. This pain level can be simulated by pinching the fold of skin between the thumb and first finger with the other hand, using the fingernails, and squeezing real hard. Note how the simulated pain is initially piercing but becomes dull after that.
Pain Level 5
Very Distressing
Strong, deep, piercing pain, such as a sprained ankle when you stand on it wrong or mild back pain. Not only do you notice the pain all the time, you are now so preoccupied with managing it that you normal lifestyle is curtailed. Temporary personality disorders are frequent.
Pain Level 6
Intense Pain
Strong, deep, piercing pain so strong it seems to partially dominate your senses; causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain
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Severe Pain Levels
Severe pain levels mean you are no longer able to engage in your normal activities. The patient is considered disabled and unable to function independently.
Pain Level 7
Very Intense Pain
Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.
Pain Level 8
Horrible Pain
Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a bad migraine headache.
Pain Level 9
Excruciating
Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent as the pain is unbearable. Comparable to throat cancer.
Pain Level 10
Unimaginable Pain
Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.
I used to be the type of person who would say that I’m not taking this or that and that I’m just fine. Around 2008 I started having very painful bladder spasms and pain. My PCP told me he thought it was interstitial cystitis but needed to send me to a urologist. After seeing the specialist I was like well ok how do we fix this?. He says no cure but other things like diet , physical therapy, groups or medical treatments could help some. However the pain is great with me and as I’ve learned from others in support groups that everyone is different. I tried to keep working and was falling behind. I cut hours and was still not handling it well. 60% of ICers are unable to work. So I was able to go on disability after working 17 years. One thing was a constant,,, the pain. Imagine having an open wound and having it sliced with razors and pouring battery acid on it. Well that is how it feels on my inside with my bladder. I look fine on the outside but my inside is wrecking havoc. I do NOT abuse my meds. There are some days are better than others that I can manage but then there are other times i need them to do even the simplist of things like take a shower, do some laundry or cook for my family. If i was denied those medications to help me and had a day where i can’t move from the bed and cry in pain and contemplate suicide bc the pain is too great and I’m not going to go to the street for drugs. I’m not that type of person. My dr knows me, my family knows me. The government or people trying to change these laws for my dr yo help me they are the ones who dont know me. So I am at mercy to please allow me to take my meds that my dr put me on so I can function and be a somewhat normal human being. Also the pain of IC has been compared to that of a person with cancer. I understand the concern for the crisis of the epidemic but dont make chronic pain patients suffer to the point they take their lives. I’ve already seen that too many times in the support groups I’m I’m on Facebook. So Congress of you take these meds away from people with chronic pain and people kill themselves then I have one thing to say to you…. their blood is on your hands and I hope you can rest easy knowing that and God forbid you ever have chronic pain. I will pray for you.
I live with chronic back pain. It began 2012 I was working my dream job with one of the biggest companies in the world then my back began to hurt and stiffen I kept working taking it easy on the weekend thinking that may help. It doesn’t so I continued to work had all my life and didn’t know what else to do my back failed the last day I worked I had to get my coworker to drive me to my car so I could get home. I couldn’t hardly walk come Monday so I went to my primary physician and tried chiropractic care to no avail I had surgery to trim the bulging discs it didn’t work for long I was back in so much pain I could hardly walk again so I had fusion surgery it went bad really bad they sent me home and I had a spinal fluid leak back to the hospital at 3:00 in the morning. The surgeon tried 2 radiological interventions they didn’t work so I had an additional spinal surgery for a total of 16 days and four procedures. Today I went to see my pain management doctor she said that the government may force her to lower my medication, I don’t know how I will make it through the day. I follow every rule to the letter why does the government want to take away my only relief.
In 1987 I was living in Portland, Oregon. While in a domestic violence situation, I knew my only chance of surviving against a butcher knife in the hands of my intoxicated attacker, was to exit through the bedroom window. However, I lived in a second floor apartment. So I jumped. Some how I landed on my bottom, which fractured a vertebra and a bruised kidney. I’m lucky I could crawl away and hide. I’m lucky I wasn’t paralyzed. 12 weeks later I was able to get in and out of bed, tie my shoes, get dressed and return to work.
Fast forward 21 years later and I am in chronic pain and I have been taking OxyContin and Percocet. Did I mention a total knee replacement that restricts my activity because of the pain? Yeah that too.
Three weeks ago the doctor who has been treating me for the last 5 years suddenly and with out cause has implemented the new Oregon taper off recommendation in my situation. I was in disbelief and I didn’t know what was causing him to do this. I’m sure most people think I was abusing my medication because why else would he do it. I’m considered low risk especially since I come in every 3 months, pass all ua’s and eventually went to blood work to make sure I was taking as prescribed. I have been 100 percent compliant because I knew what the consequences would be if I didn’t. And I have tapered to below the 90
Mm per day. In 6 weeks I will have nothing to treat my chronic pain. I’m terrified. I am 59 years old and I know how much of a struggle I had before seeking treatment with a pain management doctor who by the way has never even put his hands on me or provided anything else but opioids to treat me. He also disagrees with my diagnosis because he said it was an interpretation of the imaging by the doctor who was treating me at the time as well as the radiology report. I guess he thinks he smarter than everyone else. He said even at the dosage I’m on and the duration I’ve been taking it I’m at risk for respiratory failure.
I don’t know what to do. I