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 was a nurse (LPN) from the age of 18. I continued to college and became an RN. I had ruptured a few discs lifting, turning, fighting, caring for patients. At the age of 30, I went for back surgery and the surgeon cut the covering of my spinal cord. I needed 3 other surgeries to repair that. The hospital I was working at asked me to return to work ASAP as there was a nursing shortage. I returned to work using opiates because that was the only way I could get out of bed. I have had insulin dependent diabetes since the age of 6. I began to suffer the consequences of diabetes. I went through hundreds of surgeries trying to save by legs but ended up with both amputated. I actually returned to work with one amputated leg but my career ended after the second amputation. I went through all those alternatives. PT, OT, antidepressants, steroid injections, radio frequency. It took many years to find the right drug and the right dose to control my pain and allow my to live a functioning independent life. I was able to walk with my prosthetics, take care of my family, go on vacation, take care of my house. Since the forced decreased, I am back confined to my wheelchair. It hurts to move, hurts to walk. hurts to live. I am sitting here suffering waiting to die.
I’m Marty Mioni and a 63 year old chronic pain patient. I’ve had back troubles off and on since the mid 70’s, but on February 14, 2000, I ruptured my L5-S1 disc. I had surgery to remove it and ended up with scar tissue and nerve damage resulting in severe sciatic nerve pain all the way down my right leg into my toes. Also the three discs above are also bulging into the nerve root. I was advised not to have fusion surgery and learn to live with it. To put it in a nutshell, I have failed back syndrome.
I also have a thoracic neuritis left over from thoracic sympathectomy surgery, soles of my feet neuritis, two (yes both) partially torn Achilles tendons, and suffer with migraines.
For over 15 years I have tried everything including three failed spinal cord stimulator trials. The only thing that works for me which also gives me a great quality of life is opiate pain medication. I am currently being forcibly tapered off of my pain medication.
As I get less and less medication, I am scared to death that I will no longer be able to take care of myself or my husband and will be eventually bedridden. I’m also a caregiver for my husband who is on home peritoneal kidney dialysis along with many complications he has from suffering with type two diabetes for over 30 years.
For over seven years and up until February 2018 I was also a caregiver for my 97 year old Mom with dementia. I had to move her out to go live with my brother because with less medication I couldn’t take care of her any longer. I miss her terribly and consider it totally unfair that she was uprooted out of her home.
My daughter Karen is 38 years old and was diagnosed with X-linked Hyphophatemia (XLH) at age 2 at Yale New Haven Hospital. An XLH person’s kidneys do not properly handle vitamin D and phosphorus, the kidneys treat phosphorus as a waste product and not return enough of it to the circulation for use by bones and teeth causing the bone disorder often called Rickets because the bones soften and the legs bow. There are approximately 16,000 people in the US with this disease, 180 in the state of Connecticut and 47 in Fairfield County.
Karen’s childhood was relatively uneventful; she wore leg braces at night to straighten her legs, took medicine multiple times per day, went to school, played with friends and was happy. In her late 20s it all changed, the pain started and didn’t stop. She tried everything to deal with pain, acupuncture, guided meditation, bee venom therapy, NSAIDS, nothing worked until her doctor put her on steroids. Steroids were a miracle, stopped the pain and after two months her kidneys stopped working. Miracle over. Her kidneys came back, but so did the pain. The only thing left were narcotics – a very imperfect treatment for chronic pain but for her and many people, the only one. She goes to a pain clinic that drug tests her every visit, she follows directions to the letter and yet she is treated like a criminal, and recently was given NARCAN during an office visit. Apparently this is how our governments chooses to think about chronic pain.
Karen graduated from Purdue University with a 3.83 GPA, traveled the world thanks to her profession, is a Grammy voter, was voted the #1 Music Promoter in Chicago in both 2013 and 2014, she is a stage manager at Lollapalooza and other very high-profile music festivals. All of this has been shut down because of pain. It has cost her everything, jobs, independence, relationships, children.
Karen is more than pain but, every day, pain takes away more of her spirit, independence, personality, and her tenacity.
Please help her by seeing chronic pain as a medical problem and not social one.
I have had Reflex Sympathetic Dystrophy, now referred to as Chronic Regional Pain Syndrome, for 18 years. The RSD was diagnosed six months after I picked up a box of books, turned to place the box on a table, and my left knee “popped”. My left leg swelled up to the size of an elephant’s leg but the doctor’s couldn’t find “anything wrong”. I’ve had arthroscopic surgery, every MRI, PET, CT, or other scan known to mankind, injections, meds, physical therapy, biofeedback, talk therapy, aquatic therapy…I’ve tried most everything. I spent 14 months in bed, unable to work and missing out on my family activities (our kids were 10 and 13 years old) because my left leg and foot were swollen/black/toes curled under/too painful for even a bedsheet to touch, let alone a sock or shoe. I was forced back to work and have been able to work (most days) for the past 16+ years. I have seen pain management doctors under orders from the state Workers Comp system and have always done everything they have told me to do, never asked for more meds, always passed every drug screen test, never missed an appointment, never “lost” or “came up short” with my meds (fentanyl patch), etc. I have been told by my doctors (I say doctors (plural) because one doctor retired to care for his wife who had dementia, one doctor sees me only for my spinal cord stimulator, and the other doctor prescribes my meds) that I am a model patient. Never any big issues, always cooperative and compliant, always clean drug screens, and I don’t scream/throw fits of anger at my appointments. I am able to function (most days), do some chores around the house, interact with my family, attend social events, and have a fairly “normal” semblance of life.
At my regular monthly appointment in July, I am told that I will no longer be able to have the fentanyl patches prescribed to me each month due to the changes in the law because of the “opioid crisis”. I am being forced to stop taking a medication that I don’t abuse, allows me to function/work/pay taxes, and that is carefully monitored by my doctor who, by the way, doesn’t over prescribe, doesn’t have overdosing patients, and has me sign a contract regarding my conduct and interaction with his office. But I, and many other chronic pain patients who live with excruciating pain 24/7/365 that most people would not be able to withstand, are being lumped in with the abusers/fakers/dealers to “stop the opioid crisis”. I would bet my last dollar that the people who made this decision to stop each and every person taking opioids of any kind, have NEVER experienced chronic pain. Stubbing your big toe, cutting your finger, or even breaking a bone is probably the most pain they have ever experienced. Pain, in most instances, goes away after the instigating factor/issue, but not in all cases, but for those of us where the pain has NOT gone away EVER, we are being punished and forced back to our beds to become unable to work/participate in family events/make love to our spouses because EVERYONE who has prescription opioids abuses them and MUST be stopped. I don’t know when these people became medical professionals to make these decisions that affect my personal health, which in turn, affects my husband, family, and friends.
Alternatives to opioids such as therapeutic medical massage or medical marijuana are not “allowed” yet neither involve opioids. I was told by my pain management doctor today that, in Oklahoma, where medical marijuana was just approved, even if I just APPLY for a medical marijuana card, my name will be put on a “list” that will, in turn, kick me out of the services of my pain management doctor as I titrate off of the fentanyl. I can’t even TRY the medical marijuana to see if it MIGHT work for me for the ENTIRE two years of the medical marijuana card…even if I NEVER purchase ANY marijuana.
We have Individual Education Plans (IEP) in schools for students to help them be successful in their education. How about Individual Healthcare Plans (IHP) for chronic pain patients to help them be successful in their pain management in order to have a productive life? I don’t want to go backwards. I want to be able to be a wife, mother, daughter caring for aging parents, employee, grandma, and friend to others–not a body curled up in the fetal position in a dark room screaming for relief.
Please. Please. Please. Listen to EACH of us. We EACH have a different story with a common thread–.the pain we didn’t ask for in the first place.
Don’t punish pain.
I am a 40 year old female that has been dealing with chronic pain for 11 years now. My pain started with a bullet wound to the spinal column. I sustained long lasting injuries that caused paralysis and severe nerve pain. I just recently lost my left leg due to sepsis. I was given oral and injections of steroids to take to help calm the inflamed nerves but it seemed to have driven my immunity down and I believe ultimately caused me to become septic with my 1 year old knee replacement. If I were able to get the proper pain relief I was previously getting in my state, I would not have had to fly to another state and get on a medication regimen that was ultimately not right for me. After having 8 surgeries this past year, I was left with being offered a dose of pain meds that I’ve become tolerant and that no longer covers the pain. I’ve been left with having no other option but to seek care in a Suboxone clinic receiving Suboxone for pain and medical marijuana. So far it’s working, however I am now deemed an addict because I take a med that is used for addiction. Going back to pain meds in the future or for surgery/post surgery may become my worst nightmare. There is more help available for addicts than there is for chronic pain. There are no pain clinics to go to with proper help for complicated patients such as myself. We have to resort to going the addict route. If I’m an addict so be it, no shame in getting help. But I’m a chronic pain patient with a complicated history and that’s the only route I had to choose from. Perhaps we need to fill in the blank for this population and provide more help and support. Also, let’s throw more money into research and find better ways to treat pain and make that available to middle class people with high copays.
Hi , I am 55 yrs old & have had Complex Regional Pain for the last 15 yrs. My entire left leg, both feet & right calf never stop hurting. CRPS is best described to me as wrapping your leg is barbed wire, running electricity through it to jolt your muscles then either set it on fire or bury it in a snow bank for hours ( depending if your limbs burn hot or cold). Mine will alternate or do both at the same time. Then have this happening 24 hours a day non stop for 15 yrs. Living in chronic pain for the last 15 yrs has been my own personal hell. I rarely show it or complain about it in a way that really shows what I’m dealing with. I can no longer work & spend most of my time on my couch. I try to fight through the pain but it is diffcult. A trip to grocery store means chest pains from the pain before I leave the store & hours of extreme pain afterwards. My house is dirtier than it should be as simple cleaning takes hours. I have learned not to look. Some days it is all I can do to just feed myself & my animals. I live for my good days where I can take my dogs for a short walk to a local park but those are few & far between. It’s a struggle but what isn’t with this diease. I spend most of my time alone because people stop asking you to do anything when you always say no & I am too embrassed by my messy home to invite people over, not that anyone wants to come. It ironic, I don’t complain or talk about my medical issues but everyone tells me theirs like that is all I’m capable of talking about. I was lucky for many years and had good pain relief . I have done spinal injections, bier blocks, & tried a spinal cord stimulator to try to find some relief. Some helped, some didn’t but all stop working about 8 yrs ago. I have been told by numerous pain specialist that medication is my only option now but so sorry, we don’t prescribe pain meds so we won’t take you as a patient since we can’t treat you. When the so called opiate crisis first started, I was advised that when my high dose morphine stopped working, I should be rotated back to OxyContin again as my dose could be lowered by these pain specialists. My Gp however did not feel comfortable changing my meds to OxyContin because of all the abuse. So my pain reduction was reduced since I had built up a tolerance. Then in 2017, a misdiagnoses by the local ER caused my pain medication to be reduced by over 3/4 and my quality life became a joke. An exacerbation of my COPD was misdiagnosed as an overdose upon learning I took morphine- even though the symptoms are similar & this same hospital had diagnosed me a COPD trigger patient one month prior. I was treated with 4 doses of Narcan which did nothing to help me – but you hear about addicts found almost dead sitting up after one dose. My Dr who was growing uncomfortable prescribing pain meds used it as an excuse to do a rapid withdrawal of my pain meds with nothing given to help with the withdrawal symptoms both in & out of the hospital. I felt as he broke trust with me & how could I ever trust him to take care of me if he didn’t believe me. I only remembered taking one dose of medication that day & when my daughter counted my pills, the count matched that. I hadn’t accidentally OD!!! I couldn’t stay under the care of a Dr that treated me like a liar. I was lucky enough to find another Dr who would help me with my pain but at a much lower dose- partly because of my COPD & partly because he is scared to prescribe any more than the new guidelines. So now I live in more pain & my struggle to have any type of life is almost to great to handle. I try to remain hopeful but it’s damn hard. Its hard to be treated like a druggie by hospital staff that know nothing about my disease & don’t bother to Find out. I get very angry that I am made to suffer because of other people wanting to get high. Real pain patients don’t get high off their medications, they get some measure of relief. I get scared that one day I will lose what little bit of relief I have now & receive nothing for my pain. I don’t know if I could it handle it. I worry about the strain the pain puts on my body especially my heart since I have already had one heart attack. I don’t understand why I am being punished because of the actions of others. What ever happened to helping patients in need???
I’ve been a chronic pain patient for 15+ years.
In March my insurance company denied my normal dose of pain medicine.
My pain clinic did everything they could, but i still ended up with 2/3 reduction, without tapering.
My world flipped upside down, I had horrible pain, and anxiety. I was so scared what my life would be like, and if would be able to continue to work.
I had little to no social life before my meds were cut, now my life consists of not leaving my home more than a couple times a week.
Living with constant pain has destroyed the person I used to be, I grieve for the life I used to live. My pain prevents me from eating properly, sleeping properly, spending time with friends and lived ones.
Sometimes, if I’m lucky, I can get somewhat comfortable, if I lay on the couch, with my ice pack/heating pad, and tens unit.
But that’s the ONLY time my pain is manageable.
Think about it….this is what I have to look forward to,..at the end of the day…..hopefully getting some relief, but I am never completely free of pain.
I used to have some good days, mixed in with the bad days. But now, there aren’t any good days. They all blend together, without hope and in constant pain.
Why? I followed the rules, didn’t abuse my meds, I submitted to random urinalysis, pill counts, and tried every non opioid therapy offered to me.
I am chemically dependant on pain medicine, but I AM NOT AN ADDICT!! ADDICTION is a BEHAVIORAL ISSUE!
Pain is not a crime, but we are being treated like criminals!
Addicts take drugs to DESTROY function,
Chronic Pain Patients take meds to RESTORE function, and have some sort of quality of life.
The difference between the two is that Addicts will ALWAYS find a way to get what they want, through any means!
CPPs are suffering, without an alternative.
I was born with mutated DNA that causes all my colagen to be defective and too much elasticity in all my soft tissue. Ths disorder is called Ehlers-Danlos Syndrome. While I had symptoms showing at birth (a hole in my heart and a heart murmur), it took 35 years for a doctor to make a diagnosis. I dont blame the doctors. Being extremely limber (without physical training), Scoliosis, chronic joint dislocations since age 3, random then chronic back pain, headaches, easy bruising, spider veins at 18, severe high blood pressure starting at 18, chronic joint pain, and disc herniations didnt seem to be all connected. I didnt see the connection so I didnt complain often.
EDS Hypermobility affects 1 in 5,000-10,000 people and is considered rare. Doctors learn a paragraphs worth of information and rarely see a patient with a prior diagnosis. Even after my first discetomy/fusion at age 34, no bells were ringing. It took a knowledgable physical therapist to notice, an orthopedic surgeon who agreed, a pediatric geneticist who specializes in connective tissue disorders, and a year of information and testing to get to a diagnosis. I thought that meant I would be taken seriously. For the most part, I have… except for the state of Tennessee who knows nothing about me, what kind of pain I live with every day, or how to medically treat me. Yet, these government officials and representatives (along with the “help” of the DEA, FDA, and CDC) have determined that my daily, chronic joint pain isnt worthy enough to be treated properly with care and compasion. I dont have an “end of life disease” like cancer so according to the guidelines that means anything over 120 mme is ineffective and making me an addict. I am most definately not addicted.
Ehlers-Danlos syndrome has caused all my soft tissue to be so fragile, my defective colagen affects every part of my body…
Carefully placed operative suturs rip right though my ligaments and tendons.
I severely tear ligaments in my sleep.
All of my spinal discs are so soft and pliable, most have problems holding fluid. My discs arent strong enough to support my vertebrae. Instead of waiting for more discs to herniate after 2 lumbar fusions, my surgeon placed brackets on every lumbar vertebrae and long rods on both sides, running the length of my lumbar spine in order to give my vertebrae the support my discs couldnt provide.
My SI joints were dislocating and locking out of place several times a day. This is extremely painful since these joints are basically shock obsorbers and are not supposed to move in this manor. The surgeon had these joints stabilized by placing long screws through my sacrum to hold them in place. The lack of shock absorption now causes constant daily inflammation and pain but still preferrable to the pain i was having before.
My tailbone was dislocating and locking in a 90 degree angle everytime i sat down. The pain and pressure caused by standing up was almost unbearable. My tailbone has been removed.
When I walk, my hips will subluxate so I walk with a cane to keep from falling.
When I sleep, my hips subluxate from the pressure of the weight of my body from sleeping on one hip while at the same time, the other hip subluxates from gravity pulling it forward and down. I cant sleep on my stomach or back due to lumbar pain. I wake up every 20-30 minutes to change positions due to the pain from my hips being out of place.
It takes me 2 hours to get out of bed every morning due to inflammation and pain in the same joints that keep me from sleeping.
I was a senior graphic desinger at a job I loved and worked for 10 years. I couldnt sit in my chair all day due to the pain. I couldnt use my mouse and kryboard due to arthritis in my hands and wrist pain. I couldnt look at a computer all day due to neck pain (and resulting migraines) since my neck doesnt have a natural curve.
I have been on disability since 2009. At the time, I was in the process of starting 6 surgeries over a 6 month period. There was no perceived end to my recovery. My surgeon believed I would be wheelchair bound within 5 years based on the progression of my disc degeneration and my joint pain. I had been on pain mamagement since my first back surgery 5 years prior. At the time, my pain managemt allowed me to continue working until the joint dislocations and back pain warranted the remaining surgeries. I had also had shoulder sugery 2 years prior to repair 2 torn ligaments but they were tearing again. Following the surgeries in 2009/2010 with much discussion, my pain specialist and I agreed to increase my level of pain meds to make my pain more managable. I am still on that same dosage and medication with no more increases. While the increase did not allow me the ability to go back to work, it does give me the ability to get out if bed each morning, to do some minimal things around the house each week, to be a somewhat functional part of my family. These meds have allowed me to have a quality of life that I didnt expect to have 8 years later. They have kept me from being wheelchair bound with the exception of extended walking or standing. I continue to live every day with pain that would put most people out of commission but for me, its managable BECAUSE of the opioids i take.
My doctor and I have fought to keep my meds at the current levels. I spent 2 years driving from phamacy to pharmacy because none of them wanted to carry the meds due to possible theft. When the state changed its laws allowing the pharmacist to deny filling legal prescriptions of 120 mme or above based on the number of prescribing doctors and/or number of pharmacies, the laws were supposed to be geared towards patients seeing GPs or internists. Anyone seeing a PM specialist was “supposed” to be exempt from the 120 mme restriction but the pharmacists didnt read the laws the way they were written. I was “blacklisted” meaning a notation was added to my statewide prescibing information alerting other pharmacists to not fill my precriptions based on my dosage and because my dr APPROVED me to get my prescriptions filled at whatever pharmacy carried my meds each month since “only getting prescriptions filled at one approved pharmacy” was a CDC guideline, not a requirement. Everytime new guidelines come out or new state laws are implemented, Im threatened with having to reduce my dosage. I have spent weeks without my meds because new laws have allowed insurance companies to provide employeers with reduced premiums for policies that restrict daily dosage or opioids all together. I have spent days and weeks without my meds because the pharmacies are very limited in the amounts of pills they can order so they dont have enough to fill all their patients prescriptions. Not only do I have to immediately stop taking my meds which can be extremely dangerous but my pain levels increase to the point that i cant get out of bed. It hurts too much to move or walk. Gravity puts too much pressure on my joints.
Most states are implementing Medical marajuana policies but not everyone can use MMJ and some people just arent willing to go that route. Either way, MMJ is NOT the answer to this problem. It should be used as an additional option but not in place of opioid use for chronic pain.
I may not have a disorder that will cost me my life but my chronic daily pain will make me feel that way if i have to reduce my dosage by 75% as is suggested in the guidelines. My pain is just as valid and just as legitimate as anyone having pain due to “end of life” illnesses. Patients in chronic, not end of life pain need to be included with the exemptions.
I’ve had facial pain from breaking my nose 20 years ago. (Intractable pain) It has ranged from a dull ache to mind snapping. I had an incredible flare again this year. I went to the ER and they barbarically sent me away. I begged my primary for help, and she yelled at me. I went to another dr who accused me of being a mental patient and said that I asked my dr for “drugs”. I actually asked for help, but obviously modern medicine is moving backwards. I hate this.
Ive had severe chronic pain from previous back surgery (failed) 4 bulging discs, Rheumatoid arthritis, osteoarthritis migraines, and fibromyalgia. Ive been on fentanyl patches and norco for 12 years. I go to a pain clinic and have signed the pain contract and am regularly tested for drugs etc. I have never abused my medications.
At may last pain clinic visit my doctor decided to cut my fentanyl patch in half. I told him Ive been on the same dose for 12 years and now I am getting cut? He said yes. No explanation but I know it is because the government pressure from the opioid crisis.
I know if I am being affected that many others are too. This is so wrong. We need a voice as we are the ones being hurt by the way the government is doing things. I mean what is up with putting pain patients in the same category as street heroin users?