Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I’ve been stage 4 cancer 4 * I’ve had 10 surgeries radiation the war on opiates is hitting the people that really need it the most everybody I know at the Cancer Center and Pain Management has been cut back on their pain meds not fair to the people that really need it no quality of life in Indiana

2. I have been on every sleep aid since I was 31. I am now 62. I have severe intractable insomnia. My dad had it also. When I went in for my sleep study they said I was the only patient that never went to sleep. With medication I can live a pretty normal life. Without it I am unable to function. Ativan is the only med I can take that works without side effects. Without it I have no quality of life and my heart will actually go out of rhythm, as I also have heart issues. My doctors over the years have all been caring supportive and intelligent. I moved to Indiana recently and could not get a psychiatrist without a referral so I went into a family doctor and told her I needed a referral to a psychiatrist as I had moved from out of state and enough meds just to get me through till them. She treated me like I was asking her for heroine and needles and then the office manager attempted to give me information on an emergency department. I said I didn’t feel that should be necessary and she threatened me by saying if you refuse to take this information I will write this up in your chart. I was stunned shocked depressed anxious and afraid. Oh yes and this doctor also took thirty minutes out of my time going over every other possible medical issue I had. When I booked the appointment I told them specifically what it was for. After going over every possible other issue she said I guess we are done. I said I came in for a psychiatrist referral so I can get my meds and I need some meds until I can get into the other doctor. I am moving here from out of state. She said you have a few left you can make it, cut back. She then said get your own psychiatrist. I said I tried calling about 30 of them and they all said I needed a referral. She says ok I will get you one. The next day I got a phone call from her office giving me the name of a psychiatrist and phone number. When I called they said they could get me in in two months. She did not even help me out. I insisted before I left her office on receiving discharge notes which they would not provide. I think because I am a registered nurse and I told her she was treating me like I was attempting to get illegal drugs off the streets that a couple days later she did call in a months worth of medication and I did find a psychiatrist who would see me and that staff were very amenable. God provides. So I have an appointment in a month and I think I will be ok. This is no different than treating someone with heart disease or diabetes. Since when did politicians go to school to be doctors. do they have a degree in medicine. Are they allowed to treat patients. or limit patients treatments. They have no degree in medicine. Pain and insomnia are some of the top reasons people go to the doctor. There is sciatica pain that runs all the way down the legs. sickle cell anemia is one of the most sever pains along with shingles. there is chronic back pain and neck pain there is phantom limb pain when people have lost a limb. tmj pain and tooth pain, cancer pain, carpal tunnel pain. How can politicians with no conscious and who do not have to be in the same room with these patients have the audacity and lack of conscience to tell doctors how to do their jobs. Here is my story on pain: I had crack my thorax open heart surgery at 54 years old. Post operatively I had searing burning pain in my thorax for six months. I cried and prayed and tried to sleep for six months. I would have committed suicide I am sure of it. After six months the cardiac surgeon didn’t really believe me but he did an mri. He asked me if I was allergic to nickel after the mri. I said severely allergic. He said your entire thoracic area is inflamed. I used nickel to close up your ribs. He had to go back in and take out the nickel. It took six months for the pain to cease entirely. I didn’t take much pain meds during that time because they didn’t seem to help. but if any kind of medicine would have helped I would have taken it. migraine pain! I get those every six months or so and go into the doctor and get a shot of toradol. a half hour later the pain is gone. It is one of the best pain relievers on the market. I no longer practice nursing. But I can not imagine working in an er today and telling someone with sickle cell anemia or pain from a traumatic injury or migraine. sorry iv meds are out because the governor who has no medical license or medical experience and has never looked at a patient in severe pain has decided to tell doctors how they can and can not treat patients. Please will everyone speak up. Those in pain and insomnia and anxiety patients and their family and friends. SPEAK UP LOUD because the suffering and severe depression and anxiety all these patients are going through because of these un medically educated politicians is unspeakable.

3. threatening doctors with losing their license or possibly going to jail for treating pain anxiety and insomnia. These are serious issues that require treatment. The politicians are leaving these patients no options but to attempt to get drugs on the streets or suicide. All you are creating is a situation where drug dealers will become more prevalent and take advantage of these patients and patients have no idea what they are really getting on the streets. Can you imagine a diabetic going to the street for insulin a heart patient going to the street for cardiac medication. Pain patients are some of the most vulnerable patients in the system today. these politicians need to spend a month in the emergency room and watch doctors who are afraid to medicate patients who are screaming in pain

4. DH has had 5 spinal surgeries (3 fusion & 1 failed) and has degenerative disc disease. MRIs show nerve damage/entrapment, additional herniated discs, bone spurs & extensive scar tissue (making him not be a candidate for injections, stimulator or morphine pump). Surgeon says additional surgery would not relieve pain.

   DH has “played by the rules”….1 pain dr (made all appointments, etc), 1 pharmacy, no early refills, etc. Recently, the pain management doctor he’d been seeing refused to prescribe unless he continually received injections —citing new laws (he did 1 & was in such excruciating pain he nearly ended up in ER). He’d already been tapered down to half of his dosage from a year ago.

   New doctor said, after reviewing MRIs, that medication would be the only treatment for his pain. He went on to say that, even though it is the only thing that would help to treat the pain, he can’t prescribe because of the new laws. He apologized (said he had to have this conversation daily with the new laws) and offered suboxone. He said the suboxone would help some with the pain, but he would still have pain. Unfortunately, the government does not care if people are in pain according to the doctor. He said the government is forcing doctors to cut off patients from opioids or risk losing their licenses. He said 10 years ago, he would have been accused by government of malpractice for not prescribing, but now is told he’ll lose his license if he does prescribe—said he hates it & it’s not right, but his hands are tied until laws change.

   DH doesn’t usually cry, but I’ve found him sobbing because of fear for his future & the future of our family.

5. I’m a chronic pain patient. I was diagnosed with chronic rhumatoid arthritis, lupus and stage 3 lymes disease
   I used to live a quality life, physically able to function without the debilitating pain, that are a result of the symptoms of my physical illnesses. However, my prescription medications have been significantly lowered in both their dosages and quantity, and as a result most days I’m bed ridden. I went from having a full time job, a career in finance in the making, about to graduate from college and a full time caretaker to my disabled 8 year old son, to living on disability, having to drop out of college, having to turn down a career at a top finance agency in nyc, and having to give custody of my only child to my ex husband, as a result of my prescription mefications being drastically altered in dosage and quantity. This “opiate epidemic” has cost me my life, and my happiness, my motherhood, my independence and right to live a quality life. I never imagined In the United States, there would be such a plague upon our society. A society of individuals who suffer from documented debilitating physical illnesses like myself, illnesses Like lupus, chronic rhumatoid arthritis, MS, spinal injuries, spina bifida. Were being treated with injustice, its medical misconduct, at the very least. Cancer patients who are dying like my aunt who has brain cancer being denied prescription for an opiate pain medication. Our illnesses are primarily treated with opiate pain relieving medications. My friend a nurse practitioner driven to commit suicide after being denied her right to continue to be prescribed an opiate based pain medication for MS. The alleged opiate epidemic, stitistically doesn’t have anything to do with the treatment of opiate medications, it mostly has to do with faulty fentanyl patches that were prescribed, not narcotic pain medications that are prescribed for patients with chronic pain from physical illnesses known for causing physics disability from the excrutiating pain symptoms that result from these illnesses. My doctor was threatened and accused of over prescribing, even though it wasnt true, he refused to continue my agreed upon proven course of opiate treatment plan. The doctor I see now prescribes the same medications but in such a lowered dosage, I’m in danger of not being able to go back to college and finish my masters degree and return to work, as I had planned on doing last year, when I was symptom free and able to physically function. The doctor who refused to continue treating me, his actions cost my my home, I lost my apartment because I couldn’t physically travel to see my attorney and would’ve been able to keep my home that I lived in for 20 years, had I had the prescription medication in my system, instead I was bed ridden, hospitalized, had a nervous breakdown. I’ve lost my child, my dear friend to suicide, from this epidemic that is punishing the wrong people. Physically disabled individuals, chronic pain patients, patients dying from cancer were all being denied our rights to be treated for our chronic pain. When is the government going to get the wake up call that’s long overdue!

6. Wanted to share story. Think its important for all chronic pain sufferers to do so. I did extreme, heavy labor many years, roofing, siding…had many ruptures to back, neck, hernias…60 now and have nerve damage in back, hip, leg, knee…Would max out on nsaids, acetaminophen and many otc drugs that were useless. Tried many herbs and supplements and
   chiropractic treatments not good for these kind of injuries.
   Opioids are only medication that helps, not totally sometimes, but enough to function thru day and to get some sleep. Alot of excruciating pain and I know many people out there are going through alot worse. Its so horribly wrong that many groups and people in society are treating chronic pain patients with such little compassion and mercy. I pray for them.

7. My son just turned 19 on August 2nd, 2018. On July 23rd, 2018 he was diagnosed with a very serious chiari malformation and syringomyelia, a rare condition of a fluid-filled cyst in his spinal column. The neurosurgeons have done all they can to help him physically, but his prognosis is a lifetime of excruciating neuropathy and muscle spasms from his shoulders to his toes. We’ve had to move his bedroom into our dining room because the pain was so severe he was falling over when trying to walk (he’s now 4 feet from the only bathroom and has zero privacy). He is mostly bedridden and has virtually no quality of life because of the relentless pain. For the first two months at home after multiple surgeries, he had next to nothing to help with the pain. Amitriptyline 50mg (initially prescribed for migraines which was actually the chiari), flexeril 5 mg 4x/day (prescribed by a kind hearted ER doctor and renewed by the PCP), and gabapentin 600 mg 3x/day initially prescribed by his psychiatrist and renewed by the PCP. Why does it matter who prescribed it? Because he has seen dozens of doctors and specialists, even pain management specialists, but NOBODY is willing to write for anything which actually helps. I finally got him on medical mj in October, but it doesn’t do anywhere near what one little 5 mg of oxy does. Medical mj keeps him from crying in pain 24/7. One little 5 mg of oxy gives him about 5 hours of NORMALCY. He had a temporary script for it when he left the hospital in August, but nobody will refill it. He’s been accused of being a drug seeking addict because he was crying and begging for relief from the pain even though the doctor had full access to his chart.
   My child is suffering and every doctor we’ve encountered has felt terrible, but they aren’t willing to risk their license to help my son. We know the risks – his meds are locked up and carefully dispensed by me.
   His neurosurgeon wants him to get an intrathecal morphine pump, but there isn’t a single doctor in the Geisinger system who will do it. We’re trying to get help from outside their network, but it has been an uphill battle. I’m not sure if the scariest part is that this is his life and he may never get real relief or if he gets the pump then develops another syrinx (cyst) since that’s a potential side effect.
   Opiates may not be the answer we need, but if you had the choice of watching your teenager – formerly so full of life and energy – wasting away, depressed, missing out on life, wouldn’t you hope someone would move heaven and earth to help?

8. I have been in pain management for9 years. I have degenerative spinal disease, stenosis and arthritis. My medications have been cut in half. I am now in constant pain. I have been through therapy exercises and acupuncture, to no avail. I never abused my opiod medications but now have to suffer because of the new laws. I am not a criminal but am being treated like one

9. I fell down a flight of stairs in my home due to an earthquake while living in northern Los Angeles County in 1988. Subsequently I had a laminectomy of L5, fusion L4-S2 with stainless steel plates and screws in 1990. I was on Social Security Disability until 1996 when I returned to work. I have had continuing pain in my thoracic and lumbar spine, which now involves pain radiating down my legs.

10. I’ve been living with chronic pain for over 45 years. It is now controlled for the most part, by meds that help me sleep and a muscle relaxant. Recently, after a move to Arizona, a nurse practitioner refused to refill them. Small doses. I went into withdrawal, ending up in the ER with a blood pressure of 244/227 with an excruciating headache caused by the very high blood pressure. I could have had a stroke. It’s not just opiates that are being denied. Doctors and patients must be allowed to work together on a treatment plan. “First do no harm” is being attacked and people are suffering needlessly. We become dependent but it has nothing to do with addiction. We must fight until that is understood. Forcing a chronic pain patient to suffer needlessly is crazy. It won’t help one addict get off or stay off drugs, but creates desperate people who seek street drugs out of desperation. That is Not what this country is about. I can work again, be a productive citizen again, but for how long? This is a fight that must be won. I bullied my GP into refilling my prescription finally and will sue if anything like this happens again. It isn’t something I relish, but I’m not going to die from a stroke because he’s afraid. There are going to be lawsuits before this is over, and perhaps that will be the step to change what is VERY wrong – government interference between doctor and patient while real drug addicts continue to get their drugs.