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.
Had a neck injury in 1988. Herniated discs were the main issue. After a lot of therapy and pain point injections I was much better and much younger!
In August 2017 I was hospitalized for Chronic Pancreatitis. With a cyst in my abdomen the size of a cantaloupe, it was the worst pain I ever had experienced. After multiple stays in the hospital I continued to have tubes that were inserted into the abdomen with collection containers to capture infected fluids that I had to empty daily until early December 2017. I had lost so much weight. Once when healthy, my normal weight would be 180-190 pounds. At that time I was 119 pounds and had lost so much muscle strength and the pain continued.
In January 2018 I was admitted once again to the hospital as another cyst was found on my bladder. Again tubes were inserted and for the next three months, I had to empty them multiple times a day.
During those seven months of hell I was unable to do a lot of physical activity. Loss of strength, fatigue, and having those tubes inserted inside me made my life very limited.
But the pain never went away in my lower back. In fact I had more issues come about with my legs and feet as the more and more I would try to get back to a regular lifestyle.
That April, I began physical therapy and really enjoyed it. I was encouraged that it would help and get me back to where I used to be. Then after several therapy sessions, I was doing some range of motion tests, when I lost consciousness and fell to the floor. After visiting a neurosurgeon and having a multitude of imaging, my doctor said I have the spine of a ninety year old.
I’m now diagnosed with Spinal Stenosis in both the neck and lower back areas. Degeneration in both areas as well. Different doctors have said that the duration of the seven months of inactivity along with the medical issues had led to my demise. I have already been cut off of opioid medication by one doctor and am very fortunate that I found a new one who has resumed my medications. At least for now.
I am a 33 year old woman living in Virginia, well living as best as I can with what life has given me. Shall I tell you my story? Would it mean anything? I will start by saying I was a child used as a lab rat by a family doctor when I was younger. I was also made to do a lot of hard labor growing up. I took care of my siblings and grandmother. My mother has just been diagnosed with a lot of mental illnesses that she used to the worst extreme. I have been diagnosed so far with Chronic Pain due to Disc Degenerate Disease, I have Macular Degenerate Disease, PCOS, multiple miscarriages, and leg surgeries due to my hereditary veinous condition. I found a wonderful NP twelve years ago that has not only helped my own body but my families. As of a little more than fourteen months ago that all changed because she had too much compassion for the chronic pain community. So when I started looking for another doctor, I live … how would as they say .. under a rock.
So me finding out new terms like drug seeking, drug dependency, doctor shopping. Well that was all new to me and I have to say I was naive to believe there were other professionals that would be as compassionate as my NP. I was wrong. So very wrong. I went to a doctor who I guess took pity on me but had no bedside manner. He just recently dropped all of his clients. So I’m now living in more pain than usual. I have to go through withdrawal once more. I have also come to realize that even though this is all these doctors seem to care about – catching an addict. That even taking Tylenol or Ibuprofen or Aleve, well you’re considered an addict for that also. One doctor took me out of pain, which I bless her for that. Now the government and other doctors would rather see you in pain.
What is this world coming to? I find myself thinking on days when I could move, I could run around and do what I needed. Now I’m sucking it up and putting my big panties on. I’m sick of being treated like I’ve done something wrong, I know I haven’t.
I sure hope this pendulum will swing in the right direction this time.
Welcome to Hopeless in Virginia … thank you and take care all.
I have 10 back diseases… Degenerative disc disease (3 vertebrae devolved in neck, worst the doctor ever saw, 3 in the middle of my back, and 3 at the base of my spine, with a a canal that picked and makes me fall, bruised hip bone right now. Rheumatoid arthritis all over back now spread to hands legs, knees … a rheumatoid cyst the size of a gulf ball formed on the back of my left knee… not removed, I need a knee replacement available recently due to new metal… a 3rd degree burn on the bottom of my other foot and elsewhere… causing pain even with crutches, no one to help me so I must walk. Some days hands so bad in pain, I cannot drive. Suffer from panic attacks and sleep deprivation – zero to 4 hours sleep a night… mental pain with anxiety and depression. Ten staples placed in head when my crutches slipped and I fell into a window… 4 pieces of glass removed by walk-in clinic after emergency room refused me a 2nd time… asked by she devil from Hell to move after verbally abusing me since the day. I moved in. KKK and me Native. She came to my nose with hers and said words I have not even heard before. Thrown out, evicted, lost government housing… now homeless.
On crutches and friends left town (not from Bloomington, IN.) I could not pack on crutches, can’t lift more than 20 pounds but only occasionally, cannot get up if I fall from pinched nerve or low blood sugar. Can never get down on knees. Had service dog, turned 12 almost 13 that landlord took him. She also took over $7,000 of my paintings that packers and movers left behind. Used emergency credit card to pay movers $1,500 plus $200 a month in storage. Card used to stay in sleazy motels once being a college professor and professional artist (last painting sold for $5,000 in NY. Film premiered at American Indian Smithsonian. Was middle class. Now make $865 a month on SSI disability minus bills and $12 dollars in food stamps.
Food banks closed due to virus so hunger pain… and the pain of poverty, Fibromyalgia, spinal stenosis in 2 places in back and spinal myalgia in 2 places and some other back problems, pinched nerves etc. Was working from home doing digital art til former land lady from hell blew the wrong computer causing my computer to break. Was gifted with a $5,000 special chair the size of a dentist chair requiring its own room and special table where laptop plugs into larger screen, all electric table and chair adjusting to many positions to accommodate my back and body (now in storage). Was subletting from now-known meth dealers and users along with their alcoholism stopover $1,500 TV, stereo speaker, still in box. Passport, birth certificate and more… much more… that kind of pain… Turned heat off in winter causing pneumonia my doctor ignored with water/liquid credit into my heart causing a heart attack and double pneumonia and was in hospital a month. Facebook friends only human contact/friends… Repeating myself… posted on FB guess what less friend I really know and FB friends than I thought. A broken heart, “Here is this disabled person’s problem: I make $865 a month on SSI disability. Also do some work from home. PROBLEM… I am in-between apartments using an emergency credit card to stay in sleazy motels where I have been ripped off a TV a passport and birth certificate… my prescription drugs and more, all totaling $8,000 I can never pay back (bankruptcy). I just had a heart attack and revived 2 x’s and double pneumonia… a month in the hospital. I have a team of social workers who are supposed to find me a new apartment/place to live… 2 months now but stopped working because of the virus… I go without food and things to have a roof over my head…
Some of us are sick and need doctors / specialists… none of mine will see me due to the virus and healing is slow. Cleaning, bathing etc. impossible… would appreciate advice… Please… message me of moment… need your help!
The hospital I stayed at was a cult… pumped me full of morphine and some exotic psychotropic drug. Said I was out of it for 2 days (duh). Sent me to psych med, where I was tied down in an X and beaten and verbally abused several nights in a row. Was not allowed to make calls out, wash my long Native hair (matted so bad after a month I may have to cut it, that will break my heart). Stole my 2 pair of prescription glasses so blind there… and also stole all of my prescription drugs. I am totally alone here 9 friends left last year because of white supremacists… 2 died last year. I am without any help. In total pain, on crutches… and having panic attacks. I have had sleep deprivation since Dec 15 of last year. I get 3 to 4 hours sleep a night… I wonder, why live?
At life’s lowest point in my 60 years. An Englishman offered me a place to stay in London… but no Americans and no Natives… not the Native way, not the Christian way… sad. Quick News for “real” friends”: 1st computer was broke, used an emergency credit card to stay in hotels, last one has Wifi. BIG NEWS!: Day after checking in was rushed to an emergency room where I experienced a Christian “Catholic ” Could. HAD A SEVERE HEART ATTACK AND DOUBLE PNEUMONIA! Was there a month… paid an unused motel room outside Bloomington (cheaper) for a month. Back at motel, truck broke… had it fixed. THAT’S ALL THE NEWS ANYONE WILL READ. Pray for me. Hope Matt King has not forgot about me. Sorry if I AM STILL WEAK AND RECOVERING.
That was too FB… been using library to make digital art till I have a home… closed due to virus so no extra money coming in. 30 pills a day and injections, special elections once a week causing impotence and lack of interest in dating… no erection… so pain? Guess this is my current situation. No family, no friends, no emergency home services from medicaid and medicare… And here I sit.
Who do I write for compensation? My congressman? Who… taxes done on computer for printer use too. Landlord taking me to court for $450 in damages and her place would not pass HUD inspection… No probing lawyer from Indianapolis after asking me to write the court for an extension. The judge does not do extensions for evictions so I did as they said and could have beat the eviction and kept the Section 8 government housing. Then a letter from that group of lawyers after the trial said they did not have enough people to help me also rejected by Bloomington, Indiana pro bono lawyers. Landlord placed vacant in mail box so I did not have time to place change of address. All Christmas gifts cards and monetary gifts sent back with all mail until February… CAUSING MANY problems… Emergency credit card running out, will be forced onto the streets… pain… don’t know if I can bear that pain, may take the other route off the earth… anyway feel free to e-mail me: frankmitchellart@aol.com, place pain in subject line so I know it came from my story. Just call me JOB. Peace to all who suffer any pain. Franklin. P.S. no opioids. Just pain.
To who ever will listen:
First off I would like to send my condolences to all those family and friends who lost someone due to overdosing and or addiction issues. But my story started when I was given a option to alleviate my pain from an old high school football injury. I got hurt again even more at work one day and of course at the time I did not have health insurance. The pain was so unbearable I would rather take my own life than deal with it. Until I got relief to alleviate the agony I felt and life was looking a lot more brighter considering the chronic pain I was suffering. Of course I wasn’t aware at the time (let’s fast forward) that there would be a epidemic. But at the same time people need to be accountable for their actions.
Opium based products have been around for a long time. I was in a motorcycle accident in January of 2020; broken left leg fibula tibula, four broken ribs, fractured hands, head contusion, and concussion – almost died. So after I got out of the hospital I thought to myself, oh god here we go again … went to my pain management doctor for help. I was on a regimen that helped my football and work injuries, and now due to my accident I needed more relief, and my doctor was receptive to my need for an uptick of relief. I go to my pharmacy in a wheelchair all bruised up mind you. I felt like I was doing something wrong when I gave him the prescription, and because of the stigma on pain medication. I couldn’t get the relief that my doctor and I agreed on due to the accident to basically go on a stronger regimen to alleviate the pain I was going thru at the time due to the accident. Again I thought what the H. I went home and contemplated suicide.
The point of my story is I’m shouting at the top of my lungs in a room and don’t know why it keeps falling on deaf ears. Everybody is not the same whether you have an illness or are an accident survivor, all these changes and regulations are doing more harm than good for chronic pain suffering patients like me and millions of American alike. Please hear my plea.
THANK YOU
If I ever wake up without pain, I will think I have died.
In the early 70s, I suffered a ruptured disc in my back from attempting to lift a large package as directed by my supervisor. I agreed to surgery which the doctors botched ruining my life forever! I ended up paralyzed on my right side temporarily. In an effort to repair the original surgery I had another back surgery which didn’t fix the problem. Since that time I have had 7 more surgeries over 25 years. The majority of the discs in my back have been removed and replaced with a steel rod, screws and bolts. For a few years, my leg continued to go out due to nerve damage, which caused a fall that seriously injured my neck. This resulted in 2 additional emergency neck surgeries so I could function. I was in rehab for a few months to learn to walk again and use my arms/hands. The neck surgery resulted in removal of the disc in my neck. I lost 50% movement in my neck and can only partially bend at the waist.
I am in severe pain all day every day, and my pain meds help curb my pain a little bit so I can function. I can walk short distances with a walker or cane, however I must have a wheel chair for distance. My leg still goes out and I fear another fall. When your unhealthy other body parts begin to fail, both my shoulders have been operated on. Recently I was struck by a door while attempting to enter our hotel room, shattering my shoulder, requiring me to use a sling all day, elevating my pain. This surgery will require a total shoulder replacement and I can’t handle another surgery with potentially even worse pain.
Thank you Don’t Punish Pain Rally for helping those of us not represented by the media and other groups in their push to reduce the use of pain meds which are being abused by a small percentage of the population. No consideration was given to the thousands of people like me who spend every waking moment suffering from physical pain. I ask the doctors to reevaluate their thinking and not believe the false narrative being pushed by those who have never suffered or lived a life of physical pain. We are not drug abusers!
Sincerely
Pat
Day 44 of life changing pain. No proper pain regimen from Kaiser. MRI showed LUMBAR SPONDYLOSIS and STENOSIS OF INTERVERTEBRAL FORAMEN. Kaiser has prescribed ten different “pain meds” and ointments. Most of them NSIADs, which have already put me in the hospital in the past. I had stomach bleeding from taking the regular amounts needed to manage my pain. Still, that is all that doctors will prescribe. The last prescription is for an anti-depressant that carries side effects that are scarier than any medication I have taken before. Kaiser has also suggested epidural injections. That is too invasive of a procedure at this time. I have known people that have lost their ability to walk because of this kind of treatment.
Currently I am teaching from home because of the pandemic situation, which is the only reason I still remain fully employed. The pain has rendered me immobile at times. I cannot walk for more than a minute without feeling shooting pain in my lower back and sometimes I am unable to sleep because of the pain. It is exhausting and draining dealing with such horrible pain day in and day out and having to beg your doctor to have mercy on your pain just to be told that you need to try this other thing first. I feel like a guinea pig as doctors themselves do not know what other treatment for this kind of pain is as effective. PLEASE PLEASE do not punish people who are in real need of pain relief. It feels like we live in the dark ages or a third world country where we don’t have access to proper treatment. It is vile and unfair.
My husband has had chronic pain since 1989. He was a custodian at a high school. He bent down to pick up a stack of tables in the gym, as soon as he picked them up his back popped and he was down on the floor! He has suffered through four major surgeries none of which helped him, made it way worse! He has cages and screws and a stimulator implanted on his spine… he started taking OxyContin and Percocet for breakthrough pain. It was the only way he could function. They treat him so bad at this so-called pain clinic! He is not an addict, just needs the meds to function daily! He was on two different opioid meds at large doses just to be able to move. They started cutting him down in 2018, and now all he gets is about 90% less! He sits and stares into nothing and I catch him crying! It breaks my heart that I can’t help him, it’s cruel and unusual punishment! He has to give urine samples to get his one med now. He is in severe pain and they don’t listen. If I could make these so-called doctors have his pain for just an hour, I know they wouldn’t be able to take it! Thank you for letting me vent! Please let us know about this rally we have never heard of it.
Hello All,
I am new to the forum, and I was was wondering about where or if us chronic pain patients can try to get a clinical research going with Methadone. I’ve had the confounded opioids a few years ago. They did not work very well though because the doctor(s) would not give me the correct dosage of any of the crap. I had asked him about trying some Methadone because I had read somewhere that it helps ease pain.
I have a few discs in my neck that got herniated at work from a falling sign. Some of the doctors, nurses and the court assumed I was a drug abuser. We patients don’t have a drug problem, we have a pain problem.
I was on some anxiety meds to try and control the pain, but it only helped a little and I had to take a few meds at a time. Since the need of basically making a cocktail of antidepressants along with muscle relaxers, I had some serious inquiries about trying to get us a clinical trial with the Methadone.
The doctors I had asked about it seemed to ignore the question, and wouldn’t refer me to someone that could either. I think because it may alleviate some problems so much for us and would probably cut into their profits too much, office visits, insurance payouts, and the kickbacks they get from where ever they get them from. I hope everyone finds some relief somewhere and somehow. If anyone would like to share any info they may have regarding Methadone for the pain, I certainly would appreciate it. Everyone’s in my prayers that we can find a way to help each other. Thank you for letting me share.
Take Care, Deborah
I am an ex-Registered Nurse who worked in nursing and medicine for about 40 years total. It would seem that I should have no problem then in getting adequate opioids to treat my chronic pain condition, but everywhere I am met with doctors and pharmacists who follow orders made by ‘drug war’ loving politicians. For 5 years I have had repeated bouts of erysipelas and cellulitis in my left leg, yet cannot get any doctors to do more than supply erratic and miniscule doses that in my days as a nurse would have been routine and mandatory to control pain for these medical conditions. They all claim that they are merely following CDC orders and legal requirements. The pain is at times excruciating and nobody cares anymore. Occasionally they still ask how much pain one has on a scale of 0 to 10, then totally ignore the answer. They also don’t care that my taking nonstop NSAIDs doesn’t work that well. I now have a blood clot and cannot even take NSAIDs because I was put on an anticoagulant. Still they refuse to prescribe an opioid even though I am left with only Tylenol. They would rather that I as a diabetic endanger myself with gargantuan doses of NSAIDs, rather than allow me access to medicines whose main side effect is constipation which is easily relieved by taking some fiber.
I now distrust and despise doctors, who have twisted, turned, and lied to me at every contact I have with them. The CDC has turned them into a bunch of spineless weasels imo. Actually they have been turned into cops, which is really even yet more sad. Meanwhile I am in severe and constant pain, and it has been very much this way for me for the last 5 years. The US medical system eats up more and more of my time, money, and spirit and fails to treat my medical condition.
I live in Arkansas and I go to a pain clinic that was giving me the pain meds I had been on for over 25 years. About a year and a half ago they kept cutting the amounts down and also putting me on meds that do not work! I am down to nowhere near enough pills a day now due to the laws! My back pain, leg and feet pain is awful! The doctor just keeps saying that it’s the law, cannot help you. Now they’re ready to cut me again!
They don’t give a shit how bad our lives are due to losing my full amount of pain medication and it’s not getting any better, it’s getting worse! We don’t sell our meds and don’t over-take the amount given. Yet we’re treated like we do and worse!
Thanks for fighting for all of us living in pain 24/7!
Debby