Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. I have had 3 Cervical Discetory Fusions (ACDF) over 9 years. Covering cervical discs 2 through 6, last surgery March 2015.
   My last xray 2017 shows I have another herniated cervical disc and a pinched nerve.
   I am now permanently disabled at 58 years old. My arms are weak, I suffer from upper back pain, headaches, my arms and fingers tingle. My head feels like a 30 pound weight.
   I have to drag myself to the pain clinic every 30 days, to pee in a cup. They require me to carry my medication to and from my appointments so they can touch and count my medications. (Endangering my life as people know I am carrying narcotics)
   I am subjected to mental evaluations (am I feeling addicted, do I want to hurt myself, etc…) just to get enough pain medication to relieve up to 25% of my pain. In my state 25% pain relief is the rule.
   I spend most of my time laying down on my right side, head propped just so to decrease my pain even after taking my medication as prescribed. Quality of my life, I would not wish this life on my enemy.
   If you ask for more medication or to change your medication you risk being denied any medication and lectured about medication tolerance. I should go acouple days without taking medication so the medication I have will work again of course only acouple of days until tolerance is reached again.
   I feel like I have committed the crime of Degenerative Disc Disease. Which requires me to check in monthly with my parole doctor to prove I still have Degenerative Disc Disease (no miracle cure), pee in a cup (prove I am being a good person).
   I understand the doctor is following the guide lines put in place by the state. I feel the government has no business being between my doctor and their ability to treat me, however if the doctor doesn’t follow the rules to the T. They raid their offices, arrest them and then all their patients have to find a new doctor which can take months.
   I know many other people suffer the same as I do. While I would love to attend a rally I could not physically take the ride to a rally much less walk it or carry a sign, and I believe most the people who need the help of this movement are probably in the same boat. Unable to make that ride and carry that sign.
   We are silenced by the lack of compassionate care from our government controlled doctors.
   My 96 year old mother said,”if you were a dog people would be carrying sign picketing the doctor’s office for lack of care.”
   Think about that statement for a minute, if I were a dog, people would care. How sad is that.

2. I went to an ER in Mckinney, Texas and was discharged within one hour to care for a concussion without pain medication. The ER doc told me to visit a pain clinic for relief.

3. I have been in chronic pain for the last 15 years I am a nurse and have torn up my shoulders and back from working in this field for many years . Please look at the problems we have from Gov reglatories that scares Dr’s away from giving the meds we need

4. 20 years i went to pain Dr. But now they have shut him down. The local hospital that had promised i would have insurance till 65 lied. I pay out of pocket so no other Dr will take me on. I have rheumatoid,plus shingles bad knees bad feet and really bad hands. RA dr will no longer help because of shingles not to mention insurance… really peaved.
   Thank you

5. I have Rheumatoid Arthritis, Interstitial Cystitis, Sjogren’s, and Fibromyalgia. I took Opioids for many years, and yes became addicted. I developed Opioid-induced hyperalgesia. Went through a rehab doctor to get off. All that said, I am not against Opioids. I have had surgeries where I had to take them afterward. I did so temporarily, and will again when necessary. They are a necessary evil and for some the only answer. They are not the enemy, they are a tool. It is the abuse of Opioids that is wrong. The addicting nature of the beast. But still a tool and a useful tool. So I will support this cause. Those like me, who are in constant pain should be able to have this tool available to them. And if done wisely we will not mind the accountability of the regulations required. But it should not be too difficult to get them, and we should not be made to feel guilty for our need of them.

6. I was born with sclerosis to the point I could not sit up on my own as a child. My first time in physical therapy for PAIN was at 5 years old. I fought through pain my entire childhood anytime I ran or jogged, or stood for an hour, or when I sat in the car too long. Despite the pain I still played softball, volleyball, skated, hiked, biked, danced, worked physical jobs, and got my Master’s degree. I just did not realize everyone around me was not in the same pain as I was.

   I am 38 now. I have a 3 level fusion and 3d printed bone c3 to c7, I have had two laminectomies this year, and even more injections, epidurals, and minor surgeries on my spine than I can count. I still have no idea what it feels like to not be in pain. I ACCEPT THIS.

   I have tried acupuncture, tai chi, pain therapy, meditation, yoga, weightloss, gluten free, cryotherapy, physical therapy, stretching, swimming, cupping, lidocaine, tens unit, traction, nerve blocks, target point injections, braces, vitamins, heat, cold, rest, activity, massage, cbd, krampton, thc-a, and all the normal pain and nerve meds… anything suggested I have tried.

   I DO NOT WANT TO TAKE OPIOID PILLS. It took two years of therapy for me to even start taking them regularly and accept that I need pain pills to have a semi normal life. I was trapped between wanting to commit suicide because I was in so much pain or having the guilt and stigma of being an opioid user.

   I am alive today, because of pain medication. In the 4 years since my neck fusion I have actually gone down per my own request and not tapering.

   I have been with the same pain management doctor and have luckily never had an issue. Every month I drug test, I report any medication change before I fill it to pain management, I keep a pain diary, I do everything that is asked of me without complaint because I respect the rules. They are wonderful, and I would like to keep it that way.

   Having pain relief is a basic human right. We do not stop selling alcohol because there are alcoholics dying of liver damage or drunk driving. We do not stop selling McDonald’s because the number one cause of death in America is heart related diseases. We do not stop selling cigarettes because millions die of lung cancer. So why should pain patients be punished? We did not ask to be in pain… and we certainly do not want to be in pain…

7. I’m a retired 64 yr old male . I worked 41 years of my life and retired at age 56. To treat myself I bought a Harley Davidson road king. After a period of 3 years and untold memories I was T boned by a truck not more than one mile from my house… The injuries left me with 18 staples in my head a fractured neck and back with both screws and plates fusing my spine. The pain clinic I was a patient at Simply close their doors without warning which I am guessing Has something to do with this so called opium epidemic….. Approximately 8 phone calls were made to another clinic with no return calls whatsoever…. after my 41 years of hard work…… And the 4 yrs I got to enjoy my motorcycle….. I now have to pay someone to cut my grass…… Cannot wax my car….. Or do any of the other things I enjoyed since the stoppage of prescribing pain medications to virtually everyone…. It is a shame that the older population alone much less the older population that have suffered Major traumatic injuries can not get the relief they need for simple everyday tasks

8. I’m a chronic pain sufferer. For twelve years I’ve been going through chronic pain. I have Sjögren’s syndrome, fibromyalgia, interstitial cystitis, cervical spine pain and lower back pain, irritable bowel syndrome. Also chronic fatigue syndrome. I’m in full support for our rights to be treated. Pain affects every aspect of my life. Without medication I wouldn’t have any quality of life. I would love to attend the rally depending on if I’m having a severe pain day but if there’s anything I can do, I’ll be happy to

9. A family member was diagnosed recently with Crohns disease. Found out after going to his doctor for sudden pain so horrendous he was doubled over, walked like a 100 year old man, with all his joints noticeably red and swollen. Had already lost almost 15 pounds in one month from diarrhea and no appetite due to the pain. While he was put on a biologic, it only helps make him feel 50% human for a short while. He has been on three different types trying to find one that will stop his flares. He turned from a robust, healthy man, to looking like a skinny old man who should be wheeled around in a wheelchair with a blanket over his shoulders. All within a four month period. Whenever he has a Crohns flare both his specialist doctors will tell him they no longer will prescribe any pain medication to get him through his flares. He has been told to take Ibuprofen and Tylenol Arthritis to help him. These OTC medications do not even touch the amount of pain he is in. All he wants is pain relief to get him through extremely painful Crohn flares. His doctors are scared to death to prescribe pain medications for fear of government reprisals, all because some folks abuse the system. Now the rest of us have to live with horrific pain because our doctors are scared. Our government officials need to come up with a better system of regulating pain medication. Most people do not abuse them, but need them to function on a daily basis. There is no enjoyment in my family members life anymore. Just a hope and a prayer that he can withstand another day of pain. With our government actions they have done nothing but make normal law abiding citizens go to the dealer on the street just to buy pain medications they would previously be prescribed. How did that happen??? Now there are many people out there who once held jobs and were productive members of society. This insane crackdown of prescription pain killers has made them lose their jobs, with many of them losing everything and relying on family members to help them. How about going after the bad apples and leaving the rest of us alone with our doctors!!

10. Hello, i would need more room to tell you my story.
    Pain, is truly a four letter word. It took my real self away. It stold me, from the prime of my life. My hopes and dreams were gone. Everything i worked so, so hard for, GONE.
    It broke my wife and children and our family.
    The system that is supposed to be there to help people like us, with chronic pain, has failed ,not just me, but the thousands of people like me.
    We are instead labeled and called things that are degrading to each one of us.
    Now, as if the fight everyday to survive isnt enough, we are being Stigmatized again.
    Why, Why are they putting this unbelievable Stress on us that are suffering.
    The Medication that gives us the relief, so we can function and the little bit of Quality of life,is being ripped away from us and were being singeled out Again. The procedure’s we receive are being denied by insurance companies and medications too. Why?
    The only people that can truly understand what i am saying, are those of us who are suffering so greatly ever minute of every single day, with PAIN..Pain does not take vacations or BREAKS.
    Please, I am Begging , Please stop this. Please.
    Punish the Doctor’s and Clinics and individuals who are abusing and breaking the law, but, I am Begging, not to punish us, that need our Medications and procedures and take our Meds as prescribed.
    I get blood drawn, pee in a cup and bring my pill bottles in to be counted. I get mental health evals at every single appointment.
    PLEASE………………