Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. After reading others comments I feel like I wasn’t affected by the crisis as bad as the others but still paying for it. Lost a Doctor after six years because he no longer wanted to prescribe. Been on Fentanyl since 01 but was on a dangerous high dose and the Doctor dumping me was a good thing. Ended up in a pain clinic. I wanted down on the dose so the NP took me down to 75 micrograms of Fentanyl every three days. Working better than the high dose and feel better. But the pain clinic I go to is run like a pill mill. Feel like a addict and criminal. Used this responsibly all the years I have been on. Never filled early or went to more than one Doctor of pharmacy. Has worked in my favor so far. But now my drug insurance wants prior authorization or they won’t pay. Afraid the pain clinic won’t deal with them then I will be stuck paying 400 I don’t have. I live in AZ currently. The medical care is uncaring unprofessional and downright scary. Hope I make it through this crisis until I can get back to my home state that has better care. Been lucky in this crisis. Still have meds but for how long?

2. My name is Chad and I am 45 year old who is a Father of 2, Husband of 25years, a Pastor and a Contractor. I had a wreck in 1991 follower by a skydiving accident that damaged several discs in my Lumbar. I have battled depression and been suicidal because of the pain and my health providers are making it constantly harder to deal with pain even after 2 surgeries with fusion which is making my depression worse because they are taking away the only medications that allow me any sense of normalcy in life and life has became very difficult to live and enjoy any semblance of life because they continue to take away the most affective mean of relief I have and treat me like a drug dealer.

3. I had the best pain doc on the planet until this past June 0f 2018 the DEA broke I to his house and started to harass him with lawsuits. The DEA came to my house and asked me all sorts of questions about my doc who was the only pain doc I ever had that actually gave a damn about me. He was so caring that he would spend an hour if I wanted discussing the pain that was causing suicidal depression. The DEA came to m.y house asking me sternly if I had ANYTHING I would like to share with them and was encouraging me to make up something for them. My doc was the best and had to quit because he was harassed by the DEA and forced to release all pain patients because he was constantly harassed. Now I’m in constant pain that is uncontrollable become even though I’ve been through 3 back surgeries its worse than ever and I am hopeless to find a doc that actually gives a damn because they are terrified to do their Job and help ME LIVE!

4. After seeing the commercial on tv and then reading some other post I thought I was alone. I broke my back in 1994 at the age of 23. I was in a boat accident and we hit the shoreline and I flew out of the front of the boat. My buddies called 911 and they rushed me to the hospital and I thought I was going to be paralyzed for the rest of my life! I could not pick myself up or move for a little while. In the ambulance they gave me a shot to help with the unthinkable pain you’ve ever felt! They did an MRI and X-ray at the hospital and told me I was ok. Well after they finally got a hold of my brother they released me from the er and my brother took me to my parents house who had just left for vacation in Cancun and didn’t even land yet when they got the message that I’d been in an accident. They took the next flight back home to make sure I was ok. It was a good thing they did as my mother took me to a specialist the next day and he told me I was lucky and had broken my back. I ended up in a brace that was so uncomfortable it was crazy. He wouldn’t even let me open a door for awhile and was pretty much bedridden. I could not wait to get back to work and just life itself so I rushed through physical therapy which I regret now. I pay for it everyday. My dr told me there was not a whole lot he could do and I could live on pain pills or deal with the pain. Well I delt with the pain for years and the older I got the worse it got. It’s been about four years now that I’ve been taking pain pills and I don’t want to live on them but I’ve got a choice either hurt so bad where I can’t hardly do a thing or take them and somewhat live a normal life. I love to fish and could fish for about four days in a row but not anymore, I’m lucky to make it through a day. I have been hard on my body as I’m really active well use to be and now have a herniated disc at L5-S1 and two at C-6&7. The one at L5-S1 is 7mm I think that’s how they measure it and can’t even get out of bead some days. My regular dr use to prescribe me pain meds then she told me that she was no longer going to be able to prescribe them to me and that I needed to go to a pain management dr. OMG! What an experience that is. When I first started going the place was packed with people and felt like they were thinking oh he’s just an addict or something like that. Then I had to have another MRI and they were like oh? Then I went through the epidural process and the last time they gave me the epidural and two fawcet injections that didn’t work. The specialist told me no more epidural shots there not working on you. So now the place I go is like empty now that the laws have changed and even the pain management dr is scared to prescribe me pain meds even though I have all the MRI and documentation in the world. Now he went up to $375 for the visit because he changed me over to oxycodone. Talk about a rip off! It doesn’t help anymore than the norco did. But what choice do I have to just have a somewhat normal life. And I don’t see what everyone is wanting to get a hold of opioids for. I don’t feel any different taking them than I don’t have the pain. But going to the dr feels like going to a drug dealer to pay and to the pharmacy to pick them up. It’s gotten to be such a pain in the ass to just try to live somewhat a normal life.

5. 61 year old male, grandfather, father of two daughters(two successful daughters). Ive been on pain meds since 1996 (480mg/day )at my highest dosage. For the past year Ive tried to ween down because of the new laws coming in 2019(160 mg/day). I will survive at this dose but Im seriously considering suicide because of the pain. Also, as of Feb./or/April1,2019 my medication will no longer be available (only hospice and cancer patients will be allowed-fed. law). I was a one man self-employed construction contractor for 35 plus years. Relatively successful but I have no pension, I receive $1250/month SSD and after 40 years of being a law abiding tax payer I will now be forced to commit suicide or start shooting heroin, At 61 years old, the politicians are willing to ruin my entire families lives, for one reason and one reason ONLY, political Gain.. My pain mgmt. doctor attended legislation meetings at the NJ senate and the politicians just don’t give a s… The attorney generals response was Im going to stop allowing doctors from prescribing pills and he doesn’t care if everyone who needs the medication starts doing heroin. These were his EXACT words.He just wants all New Jersey people to know “His name was the leader who passed this new bill”. Its sickening. In 2015, I was forced to file for SSD. I was involved in an auto accident where I was rendered unconscious and fractured my neck bone at the C-2(of course the at fault party had no auto insurance). Prior to that day ,I continued working with the aid of the medications. Since then, I cant do anything but sit in a chair all day long or lay on the couch. Its my only form of relief along with the meds. Since 1996 Ive been on pain meds and never ounce felt any ill affects. I heard that senator Sweeny of NJ was on our side but couldn’t convince others to join him. Although im a staunch republican and sweeny is a powerful dem., talk to him. Get his attention. he may be willing to help. **How about this for a solution. The Govt. is allowing my doctor to prescribe fentanyl patch or pill , morphine, etc. , but wont let me take my medication. The other meds are TEN times stronger but not in the spotlight or on the attorney generals radar. I hope he realizes that “THE WORLD IS ROUND” (what goes around comes around).

6. I am glad that I saw your tv add.The Florida government put in effect laws on governing how a person manages pain and put a smiley faced chart to tell you how they feel about your personal problems,these geniuses are about being dictators,this is a violation of human rights which they think they are protecting,there phoney numbers on dying are like all numbers they give us.Anything to help you I will do my best.I can go on and on to express the outrage but I am on my to the new robbery Dr the pain doctor to be asked and made to take a mandated drug test that I pay for and asked questions to for my protection pain Drs are a new policing department
   I can go on all this for a drug that is 5000years old and nothing has replaced it

7. Growing up in California I was a beautiful ballet dancer who was beyond flexible. I would do party tricks with my body and was not until I was 35 that I was diagnosed with Ehlers Danlos Syndrom also known as E.D.S. At any given time I can pop out of the socket in each and every joint down to my fingers. My hips pop out many times a day its bone on bone my C-Spine down to my lower lumbar are done I have crushed disks, bulging disks, Stenosis, Sciatic, and neck is compressing head is too heavy for support. I have been in pain management since 35 I am 43. In 2012 I bought a home in the Florida Keys little did I know this would be the start of the nightmare. Florida was the only state that did not triple script their meds hence the pill mills of the early 2000s. Drs here are are were too scared to treat people like myself that since 2012 I have to fly home to California every 4 months to see my Dr can’t find a one here and I have looked through the entire state I would see signs in the waiting rooms that would say we don’t treat pain here! Oh okay so yep thousands of dollars later for travel expenses I am now having my meds cut down not per my Dr but per the new laws that now dictate how many milligrams we need of meds per day! Who has the right to dictate our pain levels to decided a universal dosage amount? It’s a genocide of the disabled I used to fly through the air on pointe shoes now I hope my hips don’t pop out while I am walking so I don’t fall. My doctor is amazing and is a fighter for his patients now we need to take back OUR rights I would like to be on the front lines I have a lot to offer and would commit 1000 percent. Contact me if I can help

8. 5 years ago I had a horrible accident. My femur bone had fractured in two. I was treated at an Orlando hospital. I was 60 at the time. The long and short was that the doctors did not treat the pain during the first day and night. I urinated on the bed while I was screaming. The orderlies were unable to move the sheets off from under me because any movement caused catastrophic pain. I begged for some treatment and was given none. I never before believed pain could be so severe that I couldn’t even use my sight. Everything went black during a pain episode, I was screaming during the evening and night. NO ONE should have to endure what I did. I was told that because I lived in Florida, drug abuse was always a reason for not treating pain fully. Ridiculous – especially for a 60 year old. I will never revisit that hospital. Also a male nurse told me afterwards when I complained that I shouldn’t expect full pain treatment. I told him that screaming for around 24 hours was unacceptable. The hospital was “Dr. Phillips Hospital “Thanks for letting me tell my story.

9. I’m not a pain suffer but I am to a certain extent. I don’t know in my body what chronic pain is but I take care of my husband that has lived with this for over 20 yrs. We have been to world renowned nerosuregons, orthopedics, anesthesiologist and Pain Management specialist. When I say we, he and I are in it together. Through all the suffering, tears, heart break, heart ache, the loss, the lows and the Pain.
   I have watched my husband for all the years have a good day and the worst day you could ever imagine. He has missed out on many things with his children due to his pain and those are memories you can’t get back. We have missed out on our own adventure together due to his pain. Just when you finally have a doctor that can help you and you’re able live a somewhat functioning life this horrible deception is thrust upon the pain patient’s world.
   This deception is what is killing the chronic pain sufferer. It’s the War On Opioids.
   The average person doesn’t understand what a chronic pain sufferer goes through, not even doctor’s unless they are schooled in this. The CDC, FDA, and our government has issued guidelines without taking data in the chronic pain community. It’s killing my husband and many of my friends.
   Without Opioids my husband can’t get out of bed. He not an addict! He is a man that has been poked, prodded, experimented on, and no avail the only thing that has helped him is Opioids.
   I wish that there was a cure, a device, a surgery, a miracle, but alas there are none. He has had spinal blocks, nerve compression surgery, radio frequency nerve burning, steroid injections, and a spinal stimulator. These are so barbaric and I deem them torture. You do whatever you can to make the pain go away but it’s still there. The depression sets in and sometimes he just wants it all to go away. He looks at me with tears in his eyes. What can I do to make this end for him? How can I make the pain go away?! That’s what the caretaker lives with, that’s what we carry, this is our life.
   Now we are living in a time where pain management is demonized for chronic pain sufferers. Why? If you have exhausted every means of trying to control your pain why because of bad actions of others do our loved ones have to suffer.
   Now we have individuals in the government dictating how our loved ones pain must controlled. By this I mean apparently everyone’s pain is the same. Not true! What one person’s pain threshold may be is not that of others.
   How would you feel if anyone you loved came to you and said, “I can’t live like this anymore “, what would you do?
   I wish everyday that my husband could find a cure. I wish everyday my husband wouldn’t have to be a Guinea pig. I wish everyday he could have a semi normal functioning life. Don’t get me wrong he has his good days, but on this good days his pain level is a three.
   Think about all those times you go to the doctor and they ask what’s your pain level. My husband’s on a good day is a three and those are few and far between.
   We are scared right now. We never know going to the pain management if it will be the same dosage that’s given, a different drug that doesn’t work, a barbaric procedure, or I can’t see you anymore.
   We lost our very skilled and well known pain specialists due to restrictions being put on him. He actually had my husband up and out of a wheel chair in 6 month’s after first treating him. Now we are going through hell again since he let all of his patients go.
   Where does this madness stop. How many like my husband have to suffer?
   I know you have seen me state, “WE”, many times. If you are the caretaker of a chronic pain sufferer it’s US, WE, TOGETHER.
   It is pain. It is hurt. It is love.
   Thank you.

10. Hi. I am Steffeny and I have facilated support groups for pain on and off for 30 years. I have CRPS in my full body, I go to hospital for ketamine 4x a year to be able to walk and my skin burns. I am presently starting a new group atStanford for just CRPS

    This is a human rights issue and I for one have seen and had happen a bunch of harmful things in past two years. My do. Tells me in two months the 25 year relationship was over and I was so worried I would be bedridden I had a heart attack and pain in four limbs. Then a trained pain doctor dropped my meds by one third with out talking to me.
    In hospital every patient is being left in pain. Stanford let’s people stay day and half if the want. They all cry and moan. I think every doctor who has not had childbirth to feel it for 5 min. They be fighting with us. I am available if anyone interested. I want to do something as well