Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I began having unexplained, unremitting musculoskeletal pain as a teenager. My complaints to my primary care physician were brushed off as depression, anxiety and growing pains, and I was only prescribed antidepressants until I inexplicably broke a growth plate in my hip running cross country track at age 15. This was my first opportunity to see an orthopedic doctor who visited our rural community once a month. I was treated with physical therapy and given a key to use the elevator at school, but the injury never healed and I quit participating in sports. At college my health problems continued, daily pain, stiffness, low grade fever, fatigue, and I began developing nodules in the joints of my hands. After the first surgery on my hands I was referred to rheumatology and diagnosed with seronegative RA. I soon began being treated with pain management to help me deal with the unending pain caused by joint degeneration and remodeling.

   I continued treatment with rheumatology and had 5 orthopedic surgeries over the next 15 years. As my health problems grew more serious and complicated, the national war on opiates had begun and my providers began pressuring me to stop using pain medication. I tried alternatives for nerve pain, seizure medication, anti-inflammatories, and was then referred to a pain management clinic for injections. Facet blocks were not helpful, but the pain management physician promised a radio frequency ablation procedure would be the solution and afterwards I would no longer need pain medication. I was under so much pressure, having difficulty filling prescriptions for pain medication in town without local pharmacists giving me their opinion in front of other customers, or outright refusing to fill the scripts, and the prescribing rheumatologist telling me their clinic was under so much pressure to decrease the amounts they were prescribing. I felt backed into a corner and like I didn’t have any other options, so I had the surgery.

   I had already experienced problems with post surgical wound healing and infection, and nearly immediately knew something was wrong after the procedure. I ended up with a 14 mm abscess adjacent to my spine, a systemic infection, and no doctor willing to treat it. The pain management doctor who performed the surgery said I had a “red throat” and sent me home after making the six hour drive with the abscess on my back. I needed help from my mom to even walk from the car inside the building and was so ill I could not write my name. Because nobody was willing to surgically intervene, it took several months of intensive antibiotics to heal the abscess, to the detriment of my overall health.

   It has now been over three years since I was threatened with being forced off pain management. I have sought further diagnostic testing and learned I was never a good surgical candidate due to Ehlers Danlos arthochalasia. I told the pain management clinic of my previous problems with surgery and risk factors for infection and my concerns were dismissed. The system of getting patients set up, approved for, and through the RFA surgery at that clinic is mechanized to the point of running like a factory. I have since learned that, in addition to paid infomercial type advertising every weekend, the pain management doctor has representatives from his office visit primary care providers throughout New Mexico with donuts for staff and fliers for prospective patients. The entire practice preys on the last hope people have that they can be free of pain. Combined with the pressure from prescribers for patients to find any alternative to opiates, it has created a predatory new market for people making unrealistic promises. The pain management doctor is trained and certified as an anesthesiologist.

   I still have an area of numbness on my back, more daily pain than I did before the surgery, and do physical therapy every week. I understand my medical condition better and I do not believe anyone has a solution. I wish I could have learned that without losing so much of my time and health.

2. I am a veteran of the Army, law enforcement, father, husband, son, HUMAN BEING. I have been suffering from chronic back pain for years. I have spinal stenosis, degenerative disc disease, and arachnoiditis. One of the FIRST things the pain management doctors says – WE DON’T PRESCRIBE ANY OPIATES FOR FIRST VISIT. They didn’t even examine me and said I have to get a psych evaluation. At my psych evaluation the doctor was horrible. When he read my file that says I’m allergic to morphine he stated out loud “imagine that” like I’m lying. It makes me break out in hives, tongue swells etc. He then says that people on opiates can’t take pain better than when they were not taking it, and when I told him I do take pain the same as before he lashes out saying, “Why do you think that is? Why you are the exception.” He continued to pretty much ridicule, belittle, and pretty much made it up in his mind that I was seeking drugs to get high. The pharmacists, doctors, people in general automatically assume that if you are taking opiates you are an addict. I have never been so embarrassed in my life, and this has happened on numerous occasions. I am so tired of it, I wish I could give them MY PAIN for the rest of their lives and let me be the doctor to treat them like that. It’s not fair at all, and people commit suicide because they can’t take the pain anymore. This has to stop.

3. Having had chronic pain all my adult life, I have taken many different opioids. When my adult son became an addict I took in his children. He destroyed me and my reputation. Turned me in to Child Protective Services and lost my twin 12 year old boys. Because I take opioids as prescribed. No questions asked. My kids were gone for 7 and 9 months before they listened to my doctors and their addiction counselors. My kids are home now. But I’ve lost 7 and 9 months with them and eliminated the adult addict son from my life.

4. I am suffering from Fibromyalgia for about a year now. I am only 49 years old. At times I have debilitating pain that keeps me from moving off of my couch and doing the simplest things. It is unfortunate that I cannot get the pain medication that would benefit my disease and help me in my everyday life.

5. October 7 2019 I had left knee replacement surgery and on the 8th Medicare refused me 21 day rehab for therapy and sent me home. That night I was trying to get to potty chair to use it and I pivoted on my right foot and broke my tibia and tibia and they busted through my ankle skin. I was rushed to hospital where I underwent right ankle surgery 2 days later. Upon release from hospital on the 12th I was transported by ambulance to nursing home where I received 3 months therapy on my 2 legs. I couldn’t walk on my right leg for 2 months and 1 week. I blame Medicare for most of my pain and suffering because I didn’t have the proper care upon release from the hospital on the 8th of October. If I had been in rehab I would have had help peeing at 3am on the 9th and I wouldn’t be suffering with this pain. I have a picture of my ankle and there are still broken bones in my ankle that the doctor was unable to fix. Less than 4 months after breaking my ankle the doctor said arthritis has already set up in my foot. I was unable to find a lawyer to sue Medicare … they have amnesty and you can’t sue them. I have to go 47 miles to go to pain clinic for my pain meds. They do random pill counts and urine screening in order to receive any pain meds. My doctor is unable to write the script for me. I’m still 4 months in on a walker and the quality of my life has definitely been altered.

6. I was getting cortisone shots in my lower back and now I can’t get any more and it hurt me more then helped me. Well August 1 2017 I fell about 40 feet out of a tree and landed on a 6ft picket fence. One of the pickets went up through the bottom of my foot into my ankle and shattered my ankle. The other one went in through the back of my leg and Touched Me Up Inside. Something opened up my left arm. I can see my bone for approximately 6 in. Something caved in my chest over my heart. It messed up my back even worse. Then what it was? I also wound up with a concussion and I still can’t remember things. Also, they had to sew my face. In and out I spend time in hospital rehab. I’m not receiving any kind of pain meds. I started out with an amount of Social Security. I ate something and now I’m down to less Social Security. I’m just getting screwed all the way around.

7. I hurt my back 18 yrs ago. I injured L3, L4, L5, and after several surgeries S1 and S2. I had 9 back surgeries all together. I had an artificial disc put in at my very first surgery. I started hurting in my feet and legs right away. It never went away, never got any better, it just got worse. I now feel like I have socks of pain to 2 inches above my knees! I feel like my legs are upon a fireplace and on fire with cactus needles all in my legs and feet or a million fire ant bites. Last September my pain management doctor told me that there was nothing else they could do for me. The injections were not working nor is the meds. So I wondered why was I there. I winged myself if off my pain meds and now am in full blown attack at least 2 times a day and I wake up crying at least 2 to 3 times a night! I do not understand why it’s ok for others to live off our misery! We need help our lives are hard and what does it hurt to let us have less pain. It’s not like we will be running around getting into trouble

8. I have been seeing my PCP for about 10 years. I have several conditions including diabetes, fibromyalgia, arthritis, diabetic neuropathy. I have had two spinal surgeries, a fusion in my neck with a bone graft and a metal plate in my neck. I have severe degenerative disc disease, severe osteoarthritis in my lumbar area and a previous laminectomy. I have been on opiod pain medication for several years which allowed me to have some quality of life. I have 4 children, 6 grandkids that my pain severely limits my interaction with. My life is so much harder since being forced off my medication. This is not right. I have never abused my medication, followed my doctor’s direction and this is what is happening to so many people.

9. I was born with spondylosis and not diagnosed until I was 33. When I was 35 I broke my back, by the time my boyfriend convinced me to see a doctor I had been walking around for 2 months with a broken back. Present day I’ve had 6 back surgeries, my thoracic and lumbar are completely fused and I have 30something screws and rods in my back, I have had 3 knee surgeries one knee replacement and now my knee is so messed up I can barely walk even with a cane. I had been on medication for 17 years up until June of 2019. I was convinced by my pain management doctor to go to detox and try a “new” med. They told me it was a new pain medication and would give me my life back. I have always done what they have asked me to do. What they gave me is not for chronic pain, it states that all over the internet! Then 3 different doctors basically laughed and said “that’s not for pain”. I have always led an active life, did every sport I could do, rode horses in the rodeo and at several race tracks, worked out, was a very active mom. Now my life is lying in bed, and maybe cooking dinner once a week for my youngest son who still lives with me. I can’t walk, I can’t sleep, I have begged my doctor to put me on anything!! Just take the pain away even a little. She says “well the law states…..blah blah blah”

   To be honest I think of taking my life, I will be 55 in a few months so I have been dealing with pain for 20+ years, but now being denied any type of medication will be my end. I don’t want to break the law as I wasn’t raised that way but I have been very close to going to the streets. I can get anything out there! So clearly someone isn’t afraid to help their patients. I keep thinking that if I just hang in there my doctor will help me. I don’t think someone else should control the quality of my life.

   I feel helpless, and I miss my life. I am on SSDI but I still push myself to work 2 days a week, it kills me. I just have to feel I am contributing to society some how.

   I will definitely be at the rally in March, I have to do something.

   People are getting meds, selling them on the street still! The people that this whole cutoff is killing are the chronic pain patients. I don’t feel like anyone cares, my view of doctors has changed. I think pain clinics are a waste of time, I am done with injections and surgery. I have a doctor trying to shove a pain pump down my throat, I don’t need more devices in my body.
   I just want so have some relief, and be able to garden again, go fishing with my son, and walk.

   Warmest regards
   Bonnie

10. I have been on a high dose opiate, after trying MANY other options, and I had finally been living a happy more productive life. A little more than two years ago I was asked to taper my dose, but was soon told I had to go down more than 80% of my original dose. When I said I could no longer go down any further, I was told I had no say. My doctor cuts my medication with every refill and has no reaction when I bring family members to appointments to advocate for how much this has torn my life apart. I often can’t get out of bed, can’t enjoy my first grandchild, go on vacations and do basic household chores. I’ve always done the required drug screens, never refilled early or had any issues after 25 years of use. I have offered to sign a waiver that I understand the risks involved, but my doctor won’t budge. I do see where patients don’t want to go on anymore, because not only has my medication been cut, but also any relationship with my doctor. Why are patients that have used these meds responsibly for years being punished for those that have abused them? All doctors seem to care about now is how to cover themselves, but had no issue until these new guidelines were issued. I’ve told my doctor that I’ve read that these issues are supposed to be guidelines, and not for chronic pain patients, but it doesn’t matter to him. I just can’t wait for the pendulum to swing back the other direction, if ever. I’m miserable today and every day now.