Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I suffered for 25 + years with a deteriorated hip finally had surgery, luckily just before all this hullabaloo about pain medicine. They might as well practice medicine with hands tied behind their back. I was one of the lucky ones. The horror stories abound. Scotty(Scotty’s World)

2. I have been in pain since cancer in 2000, after a auto accident moving to ky. been on pain management for 18 years, always been complying with form, urine, pill count. now can barely get out of bed. new dr wants to stop medication that works. Found out they give this medication to addicts but wont give for chronic pain. I have worked pay taxes tried to live a normal life now im 65. can barely get around

3. On disability after 40 yr nursing career due to fibomyalgia and polymyalgia rhuematica. Dr allowed me 30 hydrocodone 325/5 for 30 days and I rarely refilled them more than every 3 months instead of monthly. Went in one day a fewcweeksxago and he had his nurse inform me he would no longer prescribe them or treat me for pain, no explanation, no professional courtesy, nothing. She gave me names of 3 “pain management specialists” with not one word about anything. I picked a name out of anger at the disrespect I was shown and the only thing she will do is steroid injections requiring anesthesia. CT showed 5 vertbrae deteriorated and pressing on nerves-let her do both sides and relief lasted 6 weeks. Right back where I started and she only offers the same injections again in 3 months, no pain med AT ALL, pain parch with Nsaid on in which I am allergic toand nerve injections in her office. I am subjected each visit to a personal questinaire about how much I thi k about pain meds, do I take anyone else’s, do I go to ER trying to get meds- on and on! Then have to give a urine sample every e months!!!!!!I am 69 years old, take care of a disabled husband and keep 3 grandchildren. I have no help as husband cannot do anything. I am a christian who has NEVER ABUSED ANY MEDICATION-and I am totally humiliated every time I go to her office. It’s shabby-she taljs so loud people can hear her, talks over me and belittles every response I give! I did not ask for these conditions-I DO NOT DESERVE TO BE TREATED SO BADLY, HUMILIATED AND EMBARRASSED BY NEEDING HELP! She has no compassion-has lomited medical knowledge about my atrial fib-says none of her procedures will effect it which is a LIE! INSAIDS escalate my atrial fib! She is just making quick easy money off of people with chronic conditions. Every person in that waiting room sits on broken chairs, miserable with their heads down and avoiding each other. They appear ashamed and hopeless as she makes me feel!

4. I was in a car accident and for 17 years I have had severe pain. I am on the lowest opiods the Dr. will give me. Now arthirits has set in my spine deforming it. I have stenosis up and down my spine, bad discs, bone spurs ,pinched nerves and muscle spasums. And pain down my arms and legs plus numbness. Headaches and frbomalagia. Burning in lower back that feels like a hot iron inside. Please don’t let me suffer.

5. I am a 66 year old man that has been suffering with genetic pancreatitis and a syndrome that has been slowly eating away at my healthy pancreas tissue for 30 years. Five years ago my daily chronic pancreatitis pain became so debilitating and the associated acute attacks became more frequent that I was forced into a pain management routine consisting of daily doses of opiates and a hospital visit every 3-4 months for an ERCP procedure consisting of cleaning out as much of the dead tissue they dared and installed stints in my bile ducts to aid the flow of necessary bile to aid digestion. I have had 28 hospital visits, accompanied with 22 medical procedures in the past five years to treat my condition.

   When the Opiod crisis became a National crisis and a huge buzz word in politics the Florida State legislature passed HB21 with an enforcement date of July 1, 2018, just to secure votes for reelection. This incredably ignorant legislation was based on the misinformation and data provided by the CDC and the media that has now left many of us Seniors to suffer in constant pain due to the new law causing Doctor’s fears the CDC, FDA, or the DEA is going to close down their practice if they provide us with our necessary medication. My quality of life has gone from a manageable 8-9 to a 0, wherein I am bedridden almost every day for the rest of my shortened life. I need help, not only for me and my pain, but also help get the message out that less then 18,000 Americans died last year from prescription opiates not the 240,000 the CDC originally reported when they lumped our illnesses with that of heroin drug addicts. It took a year of traveling the country meeting with the top medical professionals in the gastrointernal field of medicine, I have tried practicing every alternative medicine known to man, unfortunately with limited success. After exhausting all available alternatives I have had to accept that medication, is the only available option to manage my pain. years through 22 surgeries and

6. I suffer from Primary Progressive Multiple Sclerosis – diagnosed 17 March 2018. My most prominent symptom is uncontrollable pain in multiple areas of my body. I feel like an ice pick is jammed between my shoulder blades 24/7. I also have a constant, throbbing pain in my hands and feet. Additionally, I get sporadic pains in all of my major muscles and joints. All of these cause a never-ending, unpredictable set of body pains that no treatment seems to help, with the exception of prescription opioids. I have been told that medicinal marijuana may be highly beneficial for me. That’s great, except I live in a state that it is not yet legal and I am also in the military – the security clearances required by my job does not allow for that as an option. Therefore, I require opioids. I started with small dosages, but as my disease progressed (both pre-diagnosis and after), I required higher dosages just to function.

   I started with a pain doctor and pain contract. I soon found that this doctor felt constrained by law in what medicines he could prescribe and the doses he could give – he kept me at a dose rate. This doctor would not increase the dose and verbalized his fear of prescribing me more – not a fear of what might happen to me (addiction or dependency), but a fear of the trouble he could get into for giving me more, even though it was clear a higher dose was required to meet my needs. I ended up having to part ways with this doctor.

   I went to my new PCM in Internal Medicine. Lucky for me, her college roommate had MS and she was very familiar with how much pain this disease can cause. This doctor allowed me to “experiment” with how much Percocet I took, both in number of pills taken at a time and total numbers per day. She prescribed me a higher dose rate, which I often need. There are other days where fewer pills provide me enough relief to function and that is what I take. Every doctor needs to be like this! The biggest problem is her upper management, who are concerned with her management of my pain and are applying pressure on her to get me off opiates. They are not concerned with what works to relieve my pain…thy are concerned with the impression my care is giving to outsiders looking at their practice.

   MS is not my only issue causing pain. I also ejected from an F-15 in 2003 and compressed/damaged at least 7 vertebrae. I had an L5/S1 fusion in 2009 that solved a majority of my lower back pain. However, the damage to my cervical and thoracic areas has caused significant pain. Doctors have tried injections (trigger pt and steroids), RF treatments and epidurals…all to no avail. Once again, opiates were the only thing that helped relieve that pain, but my doctor and the Air Force were not willing to make that a long-term treatment option. Combining this with PPMS, I need opiates to function on a daily basis.

7. In 2003 I hurt neck by being under to much stress at work. Working at a computer answering a multiline phone and doing 2 other co-workers jobs out for the holidays for 2 weeks. It started as a stiff neck and ended up being 2 herniated disc. Worked on pain meds for 10 months and made it worse. Tore,ripped and had holes in the muscle over my upper back. Had surgery which i still had pain and returned to work 3 months later, Had been back on job 3 weeks and slipped on water and fell backwards. Messed up my meck up again. After that the inflammation was horrific. Went out on disability. Pain never went away. Been living with chronic pain for 15 years and they just keep lowering my pain medications. Now i have bulging disc all down my spine and also diagnosed with Rhuematoid Arthritis. The ppl abusing medications has made it to where we are getting punished from the stronger medications we need……😡

8. My doctor was recently “divorced” from the medical group he’s been a partner with for 2 1/2 years. They immediately engaged a sociopathic “addiction” psychologist. In our first meeting she barely asked my name, never asked me about my pain but instead stated by calling me a drug addict. When I argued back she asked me if I was always so.”hostile”
   Since then, three weeks ago, my prescription has been halved and I’ve been left in withdrawal pain as well as the pain i was having before! Just a week ago I underwent an emg, which was being done by my regular neurologist as part of my proactive plan to finally find the reason for my pain and get treatment.
   It showed multiple levels of serious k nerve damage in my back,.where I’ve already had two successful surgeries, including s fusion.
   Nearly three years ago I was felled by a neurological disease which has left me physically disabled and unable to walk without assistance of a cane, walker and braces. If not for my 76 year old Mum, a twice over cancer survivor, I’d likely be in long term care, with l little hope.
   Now I’m suffering from pain that the Dr assigned to me at this same practice, cannot prescribe narcotics, but he inferred great dismay in what was happening to me, quickly saying “first do no harm” just as the psychologist entered the closed exam room, giving a quick knock concurrently. He then coward back away from me as the woman did so. However, I had picked up my cell s and placed a call to my mother-hero who was on the waiting room. Normally a gentle great grandmother, she transformed into a she bear and engaged the woman, telling her to back off. The doctor then left himself, to get me a cup of water. He and mom arrived back art the same time, saying to me that it was time to leave.
   Since then I’ve not seen an MD, other than my neurologist, who, by stated policy, does not prescribe narcotics, leaving it to the PCP. Instead they’ve had covering physicians determining my medication needs.
   They are trending me down by removing one of the pills a day, once a week. Three weeks ago my pain was liveable at 10-12 tablets. Yesterday they gave me a 7 day supply, 6 per day.
   To obtain this, I have to present myself at their office ON THE DAY THAT I AM OUT AND WHICH I SHOULD’VE BEEN. No earlier or later than 4:30. They are in Andover. We are in Melrose. My license wss surrendered to RMV after receiving a HP placard. Because the day I go may vary, I cannot use Mass Health vehicle service or The Ride. My only option is to have Mom drive me.

   Then when I arrive, I’m treated like cancer. I’m given a cup and told to make sure to be quick so they can leave on time at 5pm. It’s humiliating. I cannot successfully utilize a cup but instead I need the plastic “hat”. Then I have to get it into the cup, all while shaking from the fear of running into the psychologist. I do refuse to carry it outside the bathroom, retaining a small degree of humility.
   Tomorrow I’m seen by a Dr at BIDMC’s pain clinic, an appt I again proactively made. My regular PCP and I agreed to wait to make this appt, and also engage in aquatic therapy, until I was seen by the BIDMC neurologist. (I had an appt for the pt but it fell on the first instance of being demanded to go to the office. They didn’t care that to do so meant canceling the pt. “Not if you want your pain drugs”

   Who says such a thing to a human being? Someone who has given their complete trust to?

   I’m in the process now to locate another PCP. Any hope for a return to liveable pain will depend on this new yet unknown, physician. Since this practice is under the auspices of BIDMC, and I have heard through the patient grapevine that she is working for all of their.physician groups to reduce or remove the prescribing of any/all narcotics.
   It’s going to be s challenge.as I cannot concurrently lose all of my most trusted Beth Israel specialists.

   In the interim, I do have an appt with the other doctor, related to non pain medical issues. But I intend to try again for a closed door confidential meeting with him.

   I feel lost. Humiliated. Defeated. Abused. All by those I entrusted with my medical care. Gone is the compassionate care. The promise to relieve my pain & suffering. Now I’m faced with doctors who’s actions are deliberately CAUSING my pain and creating anxieties that were not there before.

   I’m an introvert by nature. I have many causes I support but not one I’d attend a rally in support of. But I’ll be with you!

9. I was always healthy and happy until 2001, it was then that I was in a car accident that caused me to develop Central Pain Syndrome in both my legs. Central Pain Syndrome is from my brain misfiring saying that my legs are in pain, I suffer from throbbing, burning, freezer burn type pain, aching and feeling like my legs aren’t getting circulation from my blood and every year my pain increases. I was forced to go to bed 24/7 because walking, sitting with my legs hanging down, weather changes and stress make my pain have flare ups. When I found a doctor who diagnosed me and tried every kind of treatment and injections, acupuncture, chiropractic, physical therapy, tapping, mindful thinking, virtual reality, counseling, herbs, anti seizure medications and bio feedback, to find the only thing that helped me was my pain medications. With pain medications, I was able to babysit my grandchildren and do light housework, do crafts and have a few hours to enjoy life. Today with the War On Pain Patients, I am back in bed 24/7 with mind boggling crippling throbbing pain and I am no longer able to babysit or do anything other than force myself to go to my Pain Management Clinic to get my pain medications, which have been lowered so low that I can only stay in bed and still have a lot of pain, without them, I feel I would be dead as my pain is so high that I believe I would have a heart-attack or stroke or die from suicide. I wish I could touch people so that they could feel how bad I hurt, if they felt it then they would never ever let me suffer so much knowing that opioids can give me relief and let me have some enjoyment in life. I have a high tolerance to pain so when I tell you that it is bad, then it is bad, very very bad. Please if you read my letter please stop the insanity with further tapering or stopping my life saving medications, if and when someone develops something else that works like my pain medications, then I will gladly stop using them, but as of today nothing has helped me. Please I could be your daughter, sister, mother, aunt or friend, how would you feel if they were dropped of their life saving medications? Please do the right thing, we who are in real pain have no problem having our pills counted or taking urinalysis test because we have nothing to hide, the only thing we have is Chronic Pain.

10. My name is Laurie Lowell,
    I was put on Pain Med’s in 2015 . I started out at 2 a day. Following Year I went to 4 a day. It Managed the pain some what. I have a Tumor on the L4L5 which affects my Legs and lower spine. I had a MRI in 2017. Then my Doctor Retired because of the New Law’s in Dispensing Pain Med’s. I continued with a New Doctor for about 8 months, when she Abruptly with NO Warning dropped me off my Medication. Due to the ” FEAR ” of loosing her Medical License. I was Devastated. I went right into With Drawls . She took every one off Med’s. I have had to leave my Job, go on S.S.I and Disability because of the CDC, DEA Clamp Down. I’m not a Addictive person at all. I have always taken what was Prescribed. Why do Responsible People have to Pay the Price for those that Abuse Drugs. Do NOT put us Pain patients in a Category of Heroine, or Fentanyl.. WE ARE NOT DRUG ADDICTS..