Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. [Note: If this is too long then see the last three paragraphs for the main point.]

   So my pain story is a little different, but please know I have ENDURED some of the most absolutely horrendous dental pain EVER. I am in recovery from a 15 year run on heroin and I am so IMMENSELY happy and damn proud of myself! I’ve overcame so much and it just helped make me so much stronger. I’ve been prescribed a medication called Suboxone (Indivior) for about 8 years now which helps to alleviate any possible cravings, and I’ve been doing ABSOLUTELY amazing with consistently conquering my goals. They say all good things must come to an end, right? Right!

   I started experiencing dental pain about 3 years after being on said medication. I really didn’t think much of it, because we all experience dental pain at some point in our life. It’s normal. Right? Right! Well, nothing and I mean ABSOLUTELY NOTHING could’ve prepared me for ALL of this unwarranted dental decay and dental pain I’ve been going through. It is HORRENDOUS! It’s a loooooong and constant pain feeling EXACTLY as if someone was repeatedly beating me in the mouth with a baseball bat! Yes, a damn baseball bat! The pain was so EXCRUCIATING! I’ve now been dealing with this for 5 years CONSTANTLY with seeing numerous dentists and countless appointments.

   My teeth started cracking, crumbling, breaking in half leaving VERY VERY sharp pointy teeth to constantly scrape the bottom of my tongue causing open sores. So when both my teeth were hurting and the sores were fresh, I would dread using Anbesol because it would BURN the open sores caused by the cracked teeth. I’m still dealing with this. It NEVER ends! So some teeth were pulled and a partial was made. All was okay until yet another tooth fell out not too long after receiving the partial. I tried to have the missing (artificial) tooth added to the partial, but was told teeth cannot be added to a plastic made partial and that it must be a metal made partial. I was also told I cannot have another partial made until 5 years has passed since the making of the first partial. So yes, it’s just been a complete and utter disastrous mess of pain, agony and mental suffering.

   I couldn’t ever figure out why my teeth were decaying at (all of a sudden) such an alarming rate within such a short amount of time. All throughout my addiction, I still managed to take care of MY teeth. It was strange, I was no longer using heroin, so why were my teeth decaying? I came across this ABSOLUTELY INCREDIBLE human on TikTok one day and she was an angel sent to save my soul! REALLY!! Guess who? Yep, Claudia Merandi. Wow! Now I knew why my teeth were decaying! I finally had an answer!

   She was explaining how people who are prescribed Suboxone are dealing with dental decay and how the makers of Suboxone, Indivior, failed to warn the patients, myself included, of the ALREADY KNOWN dental decay. Indivior had its employees sign an NDA (Non-Disclosure Agreement) agreeing to ‘never let the birdie outta the bag’ and advise any of the patients of the dental decay that Suboxone causes. I know EXACTLY why they so carelessly chose this route, because they were more concerned with profits over patients.

   The warning wasn’t imprinted on the little information packet that usually accompanies medication either. What is their excuse other than ‘wanting that money’ and couldn’t care less about the excruciating dental pain we as patients had/have to endure. And not to mention ALL of the dental pain aids I had to purchase, all of the gas used going back and forth to the dentists, and actually going back tomorrow. This is CRAZY and absolutely inhumane of a pharmaceutical company to put their patients that they ‘supposedly’ care about through all of this COMPLETELY unwarranted, undisclosed, screeching agony on my mental health and EVERYTHING.

   I will now see you in court for ‘Failure To Warn’. Profits over patients, isn’t that right, Indivior? The kitty cats outta the bag now!!

2. Hello everyone, my name is David and I have been disabled for the last 22 years. They have had me on so many different pain pills I believe I shouldn’t be here anymore. For over 10 years I have been on Suboxone and Gabapentin, and I’ll leave that story for later, but I have lost a few of my teeth. I brush 3 times a day and couldn’t figure out why my tooth was cracking and hurting so much. Dental bills were costly and it’s hard to chew. I’m glad I found Claudia Merandi on TicToc and it all adds up. Thank you.

3. I broke my back in 2005 had titanium put in on my L5 and double fusions. I have been given Gabapentin since then. I forget so much and think and my vision is very bad. I have been in pain since then. Doc only wants to give me steroid shots which makes it worse. My pain management stopped my pain meds because I take Diazepam for my severe pain and lost my left leg feeling since all that.

   Now, they gave me again the same Gapapentin. My pain is a level 9 out of 10, have no life, been depressed and I’m not me. Please help me to find a lawyer I can trust. I am a guinea pig for all the doctors. They don’t care! He wanted me to implant that thing and I said no because it makes it ten times worse. Can’t go to ER no where at all. I need help. I’ve been going to docs and they want to do the same again. I can’t take this anymore. My family doc can’t do nothing so I urge you to help me. I appreciate it so much. I’m confined in my house and only 49 years old. I have more health problems where I cry every day. It’s HELL. Thank you

4. I broke my ankle in 2010 and had an allergic reaction to the hardware. When the doctor finally listened 4-1/2 months later, I had Osteomyelitis. I had to go on and off IV antibiotics when my PICC line became infected, giving me Endocarditis. It took out my Tricuspid valve and the bottom two discs in my back. It also sped up the aging of my bones. I can’t remember the medical term, but a very well-respected neurosurgeon explained it best. She said, “Brandy, you are 41 in an 81-year-old’s body.

   In 2014, I had my Tricuspid valve replaced with a pig’s valve. I was having to drive to Boston every couple of weeks to see multiple specialists. I had three very young sons that needed their mom. I was unable to work and had very little money. I was frustrated, exhausted, and on the brink of giving up, when I met my current Primary Care Doctor.

   I had to sign a drug contract. I passed every urine screen and very frequent random pill count. I attended all of my appointments. I even went to counseling for quite some time. I also have Crohn’s disease, which causes mal-absorption, so I have to take double doses of all my medications! I came to him while taking two opiates. He got me completely off of one and as low as I could go on the other. I have been on this regimen for seven years and it works! I cannot stand up straight or walk on my own. My foot is so damaged and turned that Orthotics had to develop a crow walker boot for me to walk in on my crutches, to prevent it from breaking off the bone. I have scoliosis so my spine is curved and I cannot lie down flat. I have severe Osteoporosis so I cannot get injections. I am on the maximum dose of anti-inflammatories.

   I had been with one pharmacy when their corporate office dropped all manufacturers except one. I had a severe reaction to the yellow dye in it. My doctor went to another local pharmacy and explained my medical history and what happened at the other pharmacy. They welcomed me over. I had been there for eight months when a new lead pharmacist was hired. He refused to fill my pain medication that I have been on for seven years, and he filed complaints against me and all my doctors! I did nothing wrong – in fact, I was doing everything that I was supposed to do! I believe he red-flagged me because two other pharmacies refused to fill my prescription! I was able to go back to the original pharmacy, but I had to take a brand that my body didn’t like. My doctor prescribed medications to manage the side effects of the reaction.

   The board of medicine began an investigation and subpoenaed my medical records. I cannot attend these discussions, and there isn’t a patient advocate to represent me either. I don’t understand how the board can discuss me or my healthcare without even talking to me. They do not know what I have been through or continue to go through! They suspended my doctor’s license, saying he violated his agreement by going over the restricting limits on my prescription.

   However, when the Opiate Law came out, I contacted Senator Gratwick. He created an exception bill saying that chronic pain patients qualified under palliative care (exemption B) and could go over the restricting limit. Senator Gratwick asked me to come to Augusta and tell my story to the state legislators. After my testimony, the legislators said there wasn’t any need for Senator Gratwick’s exception bill because chronic pain patients already qualify under palliative care, and can go over the restrictive limit.

   Shouldn’t the board of medicine and the state legislators be on the same page? This is when it became clear to me that Senator Gratwick’s bill should have been passed! I don’t think they will let my doctor come back, and I have tried to find a doctor everywhere to take over my pain management. Doctors will not take new pain management patients because they are afraid of losing their licenses – look what they are doing to mine!

   Pharmacists are refusing to fill prescriptions for people who truly need opiates to have a quality of life. The board of medicine is suspending doctors’ licenses for going over the restricting limit! The medication and dosage should be between a patient and their doctor! You cannot treat everyone the same because we are all different! I have reached out to Senators, State Legislators, Congressmen, and State Representatives in every county asking them to help me sponsor a bill to protect chronic pain patients in Maine. If this can happen to me, it can happen to anyone!

   They treat us the same as people who abuse opiates and that is wrong! We are forced to taper way down or completely off the only medication that gives us a quality of life! We are forced to go on the same medication as opiate addicts: Methadone or Suboxone! There are cannabis stores popping up on every corner, and anyone can walk in and get all the marijuana they need to stay high. Maine Health partnered with two organizations to give out smoke-safe kits and crack pipes, but someone like me cannot get a legal prescription for the only medication that gives them a quality of life. It just doesn’t seem fair!

   We shouldn’t have to beg for a doctor to see us, or prescribe a medication that gives us and allows us to live our lives! Without my pain medication, I cannot even get out of my recliner, let alone go to my medical appointments, do my daily errands, or be a mom to my three sons!

5. I had a double jaw replacement surgery back in 2008. I woke up from the surgery in so much pain, all I could say was I hurt, I hurt, I hurt!!! My wife, who I thank God for her and the fact that she became a nurse over twenty years ago, demanded the hospital staff to do something. Otherwise, I don’t know what I would had done. Because of her, the staff gave me enough meds to go back to sleep (not back under anesthesia). However, the second I woke up again, I would start to scream in pain! Finally the next day, the pain team from the hospital came and recognized that I was not in a good spot. They gave me just enough pain meds, that I could bear the pain for enough time to get to my next dose. I can’t remember what my oral surgeon did during that time, but I’m pretty sure I never saw him until I was back in his office during my post-op check up. I told him how much pain I was in, and he didn’t really address it. Instead, I had a full-mouth X-ray in his office and he gave me another week’s worth of pain meds. I returned to him two weeks afterwards only because he wanted to see me, because I had asked for more pain meds the following week. During that visit, he told me that if I wanted more drugs, I wouldn’t be getting them from him.

   I’m not the kind of person who likes confrontation and I didn’t know what to do except go to my family doctor the next week. He, being a genuine caregiver, started to prescribe me pain medication, but he wanted to address the pain at the same time to find out what was going on. So he sent me to a neurologist who diagnosed me with Trigeminal Neuralgia. Go ahead and look it up, they call this condition “the suicide disease”. And I can honestly say, I had never before thought about doing anything like that, but I have at some points in my life after this unfortunate event.

   I began going down this nerve pain road and since then, I have gone to five or six specialists, had my trigenimal nerve medicated, burned, and I even had a small brain surgery to try to get that nerve separated from a blood vessel.

   Two years after my surgery, I became so depressed, discouraged, frustrated, and everything else under the sun. I finally went to another oral surgeon just to see if he could do anything else to me to just give me an ounce of relief. Thanking God again, he actually knew the original oral surgeon personally. He showed me from the X-ray he took, that my left jaw joint was displaced and out of its socket. Not only that, but since I gave him my original post-op X-ray, he pointed out from that as well that the same joint was out of place the week after I had my surgery. For two years, I had my jaw joint out of place.

   He vouched for him and told me that as difficult as it might be, I should go back to him and show him the original X-ray. He told me this because he assumed that he could not have been aware of this, and he wouldn’t have left his granddaughter like he left me.

   I cried going home and for the next few days. I didn’t want to go back. I was so mad. But I finally did, as painful as it was. I don’t know which I felt more, the physical pain or the emotional pain. I went back and he admitted that he didn’t see that my joint was out. Lucky me though, he fixed it for free, I just had to pay another hospital bill (sarcasm).

   Since that second surgery, I can now open my mouth big enough to eat a sandwich. But I’m still in so much pain from all the nerve damage. I had hoped that since everything was now in place that the nerves would heal. I know it takes a long time for nerves to heal but since it has been twelve years now, I am giving up on it. And you would think that I could get used to the pain, but I’m not. Some days are more difficult than others. The days I have had to deal with insurance, doctors, or pharmacies are the days I really hate!

   I now go to my family doctor AND a pain doctor because my family doctor is too scared to give me any pain meds, and I don’t blame him. But the financial drain of having to deal with both doctors and the things my pain doctor wants me to try so he can get me off the pain meds have sucked my wallet dry. But I keep trying everything because if it works better than the pain meds, I would happily do it! If there was ANYTHING else other than pain meds, I would take it in a heartbeat! But for twelve years, I haven’t found anything that works like the pain meds do.

   My pain meds give me enough relief to go to work, do more with my family, eat better, sleep better, do everything better! Why would any doctor not want me to eat and sleep better? Why would any government elected official not want me to be healthier and happier? When did America stop giving us the choice to pursue LIFE, LIBERTY and HAPPINESS?

6. I’m so thankful for your movement.
   It’s horrific that our government has placed our pain care under the Feds!
   I’ve fought the racket since around 2014.
   My back collapsed from spinal degeneration.
   I had been in severe pain before that but never was my need respected.
   By the grace of God and determination I learned to walk again!
   The breakage of my spine left me with Neuropathy and Fibromyalgia.
   The Neuropathy was a constant 7-8 pain level plus the back pain.
   Shoved from doctor to doctor but either the doctor didn’t want me because of my medication or was unwilling to help me handle the pain.
   I was loaded up with muscle relaxers, which harmed my heart and esophagus!
   I had such horrible acid from an esophagus flap that no longer functioned because of all the muscle relaxers!
   My teeth started crumbling at the gum line, my sinuses are very messed up.
   All due to the MUSCLE RELAXERS to try and shut me up and pacify me.
   Just last week I made a giant step to get a medical marijuana card.
   It’s been a godsend; the pain is down, averaging in the 3 to 4 [range] instead of 7 to 8 now.
   I’m still fighting the side effects and praying the flap and my heart return to health.

7. Hi. My name is Judy. I have been living with pain since 1998 when I got pregnant with my son at the age of 41. I was a farm kid and I had three brothers and I was strong and stubborn. And I wanted to prove that I could do anything my brothers did. And I did. My first job was working in a Sears store in the front room moving large appliances in boxes around … by myself. I was 18 years old. I was raised to work hard and not be afraid of physical work. I never gave a thought to what that did to my back.

   Then I got pregnant and the normal sciatica when you’re pregnant set in, and it never went away. In 2002 I got a gastric bypass hoping I could lose enough weight to take the pressure off my back and relieve the pain. Didn’t work, lost a lot of weight, but my back was a mess. I had sciatica down both legs and into my feet. So when I saw the neurologist I ended up with fusion of L5 through S1 way low on my back. Although that operation got rid of the sciatica it created numbness in the back of one leg because the nerves were irreparably damaged, and my low back still hurt. A few years later we moved to California for eight years for my husband’s job. We lived in a suburb outside of Sacramento. And there I discovered a pain management doctor who actually knew what he was doing. It also happened at the time when they started cracking down on opiates.

   The CDC has a very long and complicated set of rules for doctors who prescribe opiates. My doctor followed those rules. I eventually ended up volunteering in his office as the CDC Requirement Expert because it’s a full-time job. Within three years I had fusion of L3 L4 and bilateral sacroiliac joint fusions. All of these were successful and my life was a little more comfortable and I was able to get off the opiates and turn to buprenorphine for the pain. And then I got into a three-car accident as an innocent party, and my back pain escalated. So I started supplementing the buprenorphine with Tylenol. I overdosed on Tylenol and fried my liver. So now I can’t take over-the-counter medications because of my gastric bypass and my liver, so I need a specialized pain medication.

   Which brings me to comprehensive pain management, run by Physicians Assistants, who didn’t like me because I was well-versed on the CDC rules and understood everything that needed to be done to satisfy them. They put me on a low dosage of Hydromorephone after consulting with my liver doctor, and it was enough to give me a life. I could walk again, I could clean my house, I could get in and out of the bathtub. They started by giving me Suboxone which doesn’t work for my pain, and I don’t need the naloxone because I’m not addicted.

   After six months on the Hydromorphone I started to feel so much better that I thought maybe I didn’t need it anymore, and I switched to what I had left of my Suboxone, and found out real fast that I was delusional. I needed the Hydromorphone. But they fired me because even though they were the ones that prescribed the Suboxone, and they told me I broke the rules by taking it without asking them first. So now I have no life. I’m only 65, and I want to be able to clean my own house, and cook dinner for my family, and play with my animals, and do yardwork, and not feel like I have to sit down every 10 minutes because my back feels like it’s going to break in half.

   There has to be a doctor out there brave enough to prescribe for us. I read online that CVS, Walgreens, and Walmart all got fined for filling opioid prescriptions so the CDC has them all running scared. This nonsense has to stop. I’ve got a good 20 years left in me, if I could just stand up and walk.

8. Hi my name is Darin. I’ve had a total of 14 surgeries including 5 on my spine, 10-inch rods and screws from L-4 to S-1, backed up by carbon fiber cages placed through the front of my body after everything inside was moved out of the way (pulled out and to the side for access). Two prolapsed discs in my neck placed 3 years apart. Two surgeries to repair both feet after a boating accident, not my fault may I add. Severe arthritis in my feet which has resulted in both of my big toe joints being replaced with cobalt chrome joints. Three additional surgeries on my left hand trying to clear out melanoma which they had to go deep. Now my hand has phantom pains going down into my fingers. Surgery to remove melanoma on my chest. Surgery to repair the tendon in my left calf after a bicycle accident. Along with other surgeries including nasal to correct an airway breathing problem. At 55 years old I have 2 more bad discs in my spine at t2 and at the top of my fusion. Going to spine doctor tomorrow to see what to do. I build powerlines for a living for the last 30 years, so when the weather is at its worst I’m outside in it.

   I have been prescribed different opiates for years, never once asked for meds early, lost a script, nothing. The doctor prescribing my meds retired so I was offered subox— by my new doctor. Not helpful for me so after a year I slowly with doctor knowing slowed down to very little dosage and stopped taking it. Now the pain is an 8 out of 10, but my doc has no intention of prescribing me an opioid that I know will help. This doc has access to all of my records, everything, but tells me an opioid can make my situation worse. I also have severe degenerative disease and major spinal stenosis. I really don’t know how much longer I can work or do much of anything with the pain I am in at any time I am awake – which is a lot because I can’t sleep with this pain. It is so sad that CDC or whatever agency has grouped all of us suffering as a problem. What can I do?

9. Fibromyalgia, osteoarthritis, tendonitis, can’t function, need doctor to listen, can’t text anymore!!!

10. My pain is incredibly high and increasing since my other medications have been tapered. My pain doctor dropped me in 2017 after putting me on 3 Percocet a day. Bam, took them away. My other doctor and I tried different medications and came up with a remedy because it was helping my pain. Now that is being severely cut and changed because I lost my original doctor due to her leaving the practice. I’m in desperate need of a doctor to listen and understand what I am going through.