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 just told by a pain doctor that he would not write me a script for pain medication. This is in spite of the fact that I am almost bed bound with it and without it I probably will not be able to even get to the bathroom. It is ridiculous. I know all about the “opioid crisis” but damn. Those of us who live with chronic pain (35 years and counting) need a little more care and understanding. First it takes forever to get in to see someone, then they refuse to help you and you have to start over. The system is broken. Even those who work in Pain Management have no heart when it comes to the management of pain.
I’ve suffered for over 35 years (most of my adult life) from migraines, back pain, fibromyalgia, chronic pain all over my body even neuropathy. I’m a senior now but my pain really started when I was a child having me miss a whole year of school and haven’t been right since.
I was in a car accident that was not my fault and it destroyed my back. I’ve had many surgeries since then to repair my back. My surgeons said they have tried all they can to make me better. They said the only thing that can be done is to control the pain. Life seemed to be going okay with a certain medicine to control my pain. Ever since this new twist in the war on drugs, I’m beyond lucky to find a doctor who is willing to help with writing a prescription for my medicine and a pharmacy that will accept it. Even with all of the documentation from my medical journey showing my need for pain control, I’m turned down. My last pharmacy let go of all of the pain patients without any warning or explanation. Even if the patient’s medications were due to be filled they were turned away. There are plenty of doctors who have joined the government-paying program pushing Buprenorphine and epidural shots. The medication made me higher than a kite but didn’t do anything for my pain. I have already tried the shots which just made me worse, and my surgeons were against me getting more. Because I won’t accept something that doesn’t help me I too am being punished. Life is terrible now as I’m trying to get by with what little of the medicine that does help that I’ve been able to get. I’m not able to walk now without enough medication and I don’t believe I can stand the pain much longer.
I was diagnosed with esophageal spasms. They are equivalent to the pain of an actual heart attack. The doctors refused to give me pain meds (even though I was monitored and in the hospital) because I wasn’t actually dying. No history of pain med abuse EVER! I had pain as severe as an actual heart attack! Same pain! No pain meds! I had to scream all night and beg for help … no help was there because they were worried for their license. I’m scared now to ever go to the hospital ever again because they are not sympathetic to pain and treating it. I’d rather die than go to the ER for pain relief anymore. That’s sad. I’d rather kill myself than go to the ER to get relief from pain.
I started having odd pain in 1988. The pain moved from area to area. Was officially diagnosed with fibromyalgia in 1992. I continued to work in spite of bad pain days. I lived on Ibuprofen and Acetaminophen. Various doctors gave me vioxx and other treatments. Physical therapy was a constant in my life. In 1997 I hurt my back in a work related fall. More pain issues. Strained muscles and other diagnoses. I finally got an MRI, after my dear sweet mother decided to advocate for her daughter. Mind you I am now 55 years old. L5-S1 disc bulge. Put on permanent light duty. In the healthcare industry there is no such thing. You are always put in position of lifting, pulling, pushing, bending, stooping and reaching. Fast forward to 2015.
Shoulder pain was extremely high one day after carrying a gallon jug of milk. My doctor put me on pain meds for 5 days as PRN and get MRI of my neck. Yup, spinal stenosis C4-5. Neurosurgeon said I needed surgery. Heck no! My doctors at my prior clinic all knew me. I was not a narc taker. Do PT and whatever. Well insurance comes from the county. I wanted to keep seeing my old doctor. That was no longer an option. Start with a new doctor and a new sober journey from alcohol. My last drink was 2014. So new doctor and this crisis put me at a disadvantage of automatic pain med seeker. Anxiety meds taken away as well. I had to have my hubby come with to advocate for me. I now have arthritis in SI joints, hips shoulders and left ankle. I could not even get lidocaine patches for pain. Well now I have CRPS in my left foot from dropping a 16 pound drill on it.
I want to now see a pain management doctor. But for the second time, I’m being referred to the pain rehab program. Tried it once, didn’t work. I’m only allowed 10 percocet for 20 doses per year, then 10 tramadol. Same deal. If I have a bad pain day. I am afraid to take a med. What if the recovering alcoholic decides to like pain meds. To be clear, I hate taking them. I can’t function on them. I won’t go to meetings, drive or anything where I have to think. I have had to earn the respect of every doctor I’ve had to see since transferring to this clinic system.
Now in November I get to go up in front of a team of psychologist people and whoever else. They told me if I was on any narcs to wean off of them!? Really!!! That’s so unfair. I told the gal, I only take when I need to. We are treated poorly. I am considered a risk because of my honesty with my past drinking problem. I have repeatedly told doctors I refuse to give up my sobriety on meds that make me dumb.
I’ve had a life of pain but what I’d call normally “bad” pain, for what’s it’s worth.
I was born with a soft cleft palate and had more than the average surgeries to fix my palate, sinus cavity, and ears by the time I was five. At fourteen, severe migraines and seizure activity joined my days.
As I aged, more pain and surgeries came my way, topping out at twenty-five, a relatively low number compared to my husbands thirty-nine, but the last one – my right knee replacement – gave me a present I wasn’t expecting, Complex Regional Pain Syndrome, Type 2 or Causalgia.
And that’s when I discovered pain on an entirely different level. How is that possible? The odds.
I’m what you call the exception to the rule.
I only had a 1 in 100,000 chance to be born with a congenital soft cleft palate, and I was.
There is only 3% of the population of the entire world who are allergic to Nitrile, and I am one of them.
I had a 6% chance to develop hormonally-related grand-mal seizure and migraines, and I did.
And finally, at forty-eight years old, I could no longer walk. Osteoarthritis had destroyed my knee and I could no longer function … as a pharmacy manager, a caregiver, or wife.
So I finally caved and signed on the dotted line and had surgery number 25 in my life – a total knee replacement on my right knee and became one of 2-5% in the world who develop CRPS or Complex Regional Pain Syndrome.
Story of my life, right?
To continue on with the tale, after the onset of CRPS, I was told that the pain was caused by “pulled muscles”, “weak tendons”, “too much therapy”, “lack of therapy”, “imagined pain”, and on and on. I saw provider after provider, year after year.
I was diagnosed with bulging discs, inflamed joints, ankylosing spondylitis, and of, course, nothing, until finally, the truth was discovered, and a neurologist diagnosed me with Lumbosacral Plexopathy with a severed plexus, and a referred pain specialist confirmed his suspicions that I had the most painful disease on the planet, Complex Regional Pain Syndrome, Type 2 or Causalgia, a condition that has been around since the Civil War.
During this time frame, I realized there was no possibility of a cure and little to no chance for remission.
As time progressed, my doctors attempted to control my pain which stayed at a level of 42 on the McGill Pain Scale. If I was to try to use the Mankoski Pain Scale for Pain (1 to 10), it would be a 8-9, leaning toward 9 most days and 10 on very bad days.
After six months, and making no headway in pain control, a recommendation for a DRG SCS through Abbott-St. Jude was offered and taken. The trial offered 85-90% pain relief, whereas the permanent implantation only provided 20-25% of that.
Various other treatment options were pursued, nerve medications (anti-seizure and newer nerve pain medications) either failed or produced side effects such as lowering the seizure threshold and causing seizures, or migraine headaches. Newer CRPS therapies such as Ketamine were nixed due to pre-existing conditions.
The only therapy left to treat the pain I suffered was opioids, the one type of drug I had always avoided through all of the pain I had endured except for my migraines.
I didn’t want to admit that I needed the drugs I abhorred. In fact, I told myself I could take the intense pain. After all, wasn’t I the one who had taken on 54 hours worth of labor without taking a dip of an opioid? Hadn’t I spent the last fifteen years standing for twelve hours a day on a destroyed knee using nothing but anti-inflammatories and a smile?
But eventually, I realized I couldn’t live with non-stop agony. I needed relief and the only way I could find it was with opioids. So I yielded.
The regimen wasn’t perfect and it didn’t give me complete relief but it helped. I wasn’t in tears all the time. In fact, I could at least lift my head. My life wasn’t completely over. I still had the battle of a lifetime ahead of me, but every step, every breath I took, wasn’t backwards.
Then I realized I’d never work again as a pharmacist. I’d never drive again for more than a mile or two. I’d never be able to balance my checking account or write a book in a month. My life as I knew it was over.
The surgery that was supposed to restore my life … had destroyed it as I knew it. And I lost it. I screamed, cried, denied, laughed, cried over and over again, until I realized I needed to build a new life as a disabled person with CRPS and Chronic Pain.
Since then I have faced many challenges. My pain provider has attempted multiple times to reduce my dosages due to statewide DEA pressure when my pain hasn’t been managed to our goal of 50%. My goal at the maximum has reached 40% with the SCS. I have been involuntarily had nerve therapy re-attempted that has caused night seizures (grand-mal) as was listed in my Chart’s Reaction Profile.
The COVID-19 Pandemic has caused my DRG SCS adjustments to halt so I have been in maintenance mode with the stimulator. After a few months of virtual appointments, it’s back to driving 3 hours one way each month to my pain management provider for very little but her to ask what my pain level is and to try to get me to go lower on my opioid dose which I voluntarily did two months ago. (She was happier than a coyote in a hen house.)
My plans? I’m tired of people like my husband and me being the villains and the criminals when all we want is our pain controlled and to live productive, quality lives. I spent twenty-one years as a pharmacist fighting doctors and the DEA to make sure addicts didn’t get the drugs and chronic patients did, and now I’m known as a disabled, chronic patient. I’m still a licensed pharmacist and I know how it works on both sides of the fence, and I’m using that knowledge against them.
I’ve started a national petition, started talking to legislators in Wyoming and Washington D.C., and working on making everyone being stripped of their rights to life, liberty, and the pursuit of happiness as the disabled and elderly suffering from Chronic Pain and on opioids.
I won’t stop until big brother gets the message. Just because we take opioids to have a halfway decent life, albeit not necessarily successful and working, but tolerable, does NOT make us criminals or addicts.
It’s time for our rights to be protected instead of trampled upon.
I have degenerative disc disease, which I’m sure a lot of you know about but for those that do not, it is in part the discs between the vertebrae of the spinal column deteriorate or break down. This causes pain in my back but the leg pain is like nothing else. I describe it as someone trying to dig out of my femur with a dull spoon. Because of the leg weakness I’m not able to walk very well or stand for more than a few minutes. Orthopedic surgeons say they can’t help and have referred me to a neurologist… I feel like they all think I’m crazy or pill seeking. I have had the same doctor/PA for 8 years and the same pharmacy. I’ve never asked for my meds early or “lost my prescriptions”. I’d rather not be on any narcotics at all, while I do have a very high tolerance naturally I thankfully don’t get high or messed up, I just don’t like having things like this in my body. I routinely ask if they have any new recommendations that are non-narcotic because I’m open to new meds, therapies or treatments that might help.
It seems that I am faring a bit better than most on here when it comes to my medications being filled, however I have been taken off or lowered so far that any quality of life I did have is slowly slipping away.
I’m 40 years old and have a 17 year old son, it breaks my heart that I haven’t been able to do a lot of things that I wanted to do with him growing up. That is time we only had once in our lives and thinking about that just makes me feel like a horrible mother.
I’m not sure what I’ll do if the neurologist says that he can’t help me either. I’m not sure how much longer I can handle living like this.
I agree with what a lot of you have said about the fact that our government needs to remember that while fighting the war on drugs is important and I agree with it, that doesn’t mean that some of us don’t still need those drugs. I’m willing to do whatever is requested of me to get treatments that help. Wishing you all well, Blessed Be )O(
My name is Renee and I live in Wyoming. My story with pain is long and varied but intense. Needless to say, I have what we in the Pain community call a “high pain tolerance.” In medical terms, it simply means I have more, many more, pain receptors and can bear a lot of pain before losing consciousness. Women have this feature versus men but for me, it’s always been a blessing.
It meant I could bear surgery after surgery, a 54-hour long brutal labor, untreatable migraines since teenage years, and the intractable, unbearable nerve, muscular, and joint pain of lumbar-sacral plexopathy following a rushed total knee replacement surgery and its resulting development of Complex Regional Pain Syndrome, type 2, or what it’s otherwise known as RSD or Causalgia — a disease which has been around since the Civil War and remains to this day incurable and for all rights and purposes remains untestable to this day.
I live each day in agony from one pain pill to the next, afraid that the next time I visit my pain specialist that I will be denied care or the medication I require to live a productive and useful life.
I wake up unable to catch my breath with the pain and wonder if my husband is feeling worse than I am and hear him in the bathroom before I realize his chronic pain has him by the throat while mine is simply got me immobile.
It’s hard to believe that at times my pain is a blessing compared to others but that is the case. There are others who do suffer more.
I’ve been told this pain that cramps my body and contorts me into an old woman before my time is:
1. In my head
2. A passing thing
3. Is surgery related
4. Is rehab related
5. Will take time
6. Is my fault
7. Is the surgeon’s fault
8. Is nobody’s fault
9. Is God’s fault
10. Is society’s fault
In fact, it took nine providers over the entire state and multiple procedures and tests to discover where and what the pain was even caused by — COMPLEX REGIONAL PAIN SYNDROME — the most painful disease known to man — more painful than having a limb amputated without anesthesia. The highest ranking pain on the McGill Pain Scale.
Did I want to give up? Yes. Did I want to put a bullet in my head? Yes. Did I want revenge? Yes. Did I scream, cry, beat at the pillow, walls, and sky? Of course! Did it change anything? No.
So what did I do? I grieved for a life lost and built a new one. One that would never stop learning and NEVER, ever, give up the fight for a good one.
And if that means fighting the entire world for it, so be it.
My pain story is similar to so many others. That alone should scare the average American. How many of us are there? This medical field, yes it is an actual field of medicine, devoted just for pain.
I’ve been told I needed surgery! Then told it’s inoperable! I didn’t like having injections, I actually have a fear a needles, but I would do ANYTHING my doctor said to stop this pain. Finally, after 7 long years I was told I needed a pain pump. The catheter is surgically placed in my lower spine, the pump is in a sack under my skin right near my hip bone. At first I thought this was a miracle, I can walk, sit, stand, I can move with less pain. Yet I still had migraines and pain that would shoot down my right arm. They forgot to tell me, I couldn’t have anymore MRI’s, but I’m severely allergic to the dye used in CAT or CT scans. I would need to rely on xrays and CT scan without dye for any future diagnostic purposes. I possibly had MS, but without an MRI, we couldn’t really be sure. The surgeon decided we would go ahead and treat as if positive for MS. Then the pain grew steadily worse, the pump was increased every visit! Which was every 3 months.
Finally after a year the surgeon said I needed surgery on my neck, a cervical disc fusion, right away, or risk “breaking my neck with a simple sneeze”. I was told this in February, flu season, where I live! My family was gathered around me, my children urged me to please have the surgery. But I was scared, already my pain pump was at a very high dose and it was only 1 year after implant! I was given oral meds to help control the neck pain. The surgery was scheduled, the office called to arrange pre-op bloodwork and chest xray. Pre-op was complete, I received the date for my surgery. I was scared, I went to see the surgeon in his office, I said, I don’t want to do this. That’s fine, I just can’t prescribe the oral pain med any longer. After a week, being physically ill on top of the pain I was in, I relented and proceeded to have this “life-saving” surgery.
I woke up after surgery, I knew something was wrong, very wrong! Apparently 4 days had passed and the surgeon decided to go through the back of my neck even though it has been proven that going through the front is less painful for the patient. Instead of increasing my oral pain after surgery, as we had discussed prior to operation, my meds were DECREASED! I was literally driven out of my mind from pain! The doctor brought my family in and said I needed a psych eval and should be committed ASAP. Thankfully my daughter refused to sign anything. After seeing a psychiatrist in the hospital, all oral meds were discontinued and pain med was increased. Within 24 hours, I “woke up” or so I had thought.
I have been fighting my pain ever since 2009. My neck took several months to heal. A CT scan taken post-op by 2 years showed 3 surgical screws penetrating my central nerve. But being placed in “pain management because of new federal regulations” has just steadily led to more incompetence in actual patient care! This “regulation” has steadily caused more pain for me by forcing me to see someone that knows nothing about pain pumps or the management of the unit. I was “accidentally overdosed”, and under-medicated. I’ve been told “the pump takes care of all your pain, therefore you don’t need an oral med”. My favorite one, “it’s all in your head” sent me searching for a new doctor.
I was advised to sue for malpractice for my neck. After learning this doctor had done numerous surgeries on patients that he was NOT qualified for performing, I decided I would file a lawsuit. I learned that it is standard practice for surgeon offices to perform more than one procedure per patient in order to keep their spot in an office. The doctor that placed my pump screens patients to search for reasons to perform second procedures! Most surgical groups require a certain number of procedures per month from its members. My doctor claimed he was forced to do this to stay in the group. They aren’t the only ones! The hospitals demand a doctor perform a number of procedures to keep their rights and privileges in that hospital! But that’s another problem.
I was able to file a lawsuit, but finding a new doctor? I’m still dealing with getting the medication I need to live a normal life. Searching for a doctor to prescribe the medication was not easy with the regulations and new laws popping up each year, or every session of congress in Washington DC! But that is in itself classed as “doctor-seeking drug-seeking behavior”. I’ve even had a pharmacist tell me I couldn’t have my medication! A pharmacist!
Now 11 years post pump, I was sent from doctor’s office to doctor’s office trying to get my pump filled. In the past 3 years I’ve had 3 different doctors! One was forced out of practice because of being reported by a pharmacy for prescribing “too many pain medications”. The second was nice but she left her office. I was forced to see the only person left in pain management there. She said she simply did NOT believe my diagnosis, that I am simply one of thousands that have been caught up in the opioid crisis. She attended the government sponsored seminar on dealing with addicted patients, and she would wean me off my meds and send me to a third doctor for pump refills only. I couldn’t believe this was happening to me! I pointed out the CT scan of my neck, the reports after reports of the collapsing discs in my spine! Lies, she claimed! How could I possibly fake a CT scan? The xrays? They weren’t mine, no one could actually be walking if this was their spine! What about my heart attack after the doctor stopped my meds IN THE HOSPITAL?
After having my pump replaced I was there to get the battery changed, but the unit would not restart. I was in and out the same day, however the anesthesia caused severe vomiting several hours later. I was admitted through the emergency room, the doctor was called up to my floor because the pump apparently shut itself off, causing the severe pain, plus the reaction to anesthesia. The doctor stopped all of my pain meds, refused even my oral dose! I “signed myself out”. I called my pain management and was given an appointment right away the next morning. My doctor was able to restart my pump and that night I was rushed in to the emergency room with a heart attack. The doctor who placed my stent, heard my story and ordered that I be given my oral meds every 4 hours plus a morphine IV! He said that although he could not go on record blaming the doctor that discontinued my pain meds, the stopping “certainly HELPED in causing the cardiac infraction”. Was that “all in my head”?? Yes! I went to the third doctor to have my pump filled. You’re just an addict, he said! Even as he admitted he still had NOT even looked at my record!! He agreed to help ween me off the morphine so I could have the pump out, then left his practice, without referring me anywhere!
My pump ran dry and I am now going through withdrawal, but thank God my new doctor is here! He is helping me every step of the way. I’m still frightened. I still get on my knees every night and thank God for my doctor and ask that he be able to continue treating me!
I am lucky I found a good doctor. It only took 20-plus years and 5 different doctors, in 2 states, but I know I am lucky. I know there are others like me, that are the walking wounded right here in our homes! It has to stop!
Such sad stories I am so sad no one cares to change things. Especially since they are legalizing so many street drugs for fun and leave people screaming in pain. It’s so disgusting go to CA governor Newsom will give you mushrooms, pot, or decriminalize your arrests for narcotics. But try to get real treatment and you’re a junkie! WOW where is the compassion?