Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. To Re Stan
   I am so sorry, but I don’t know anything about the South American country’s policy’s on meds.
   I have heard of people going across the border to get medication, but I don’t know how safe it is.
   Best of luck, Stan

2. I’ve had 2 neck fusion with wire and one low back fusion with 2 rods 1 plate and 4 screws 30 years ago from a car accident. The neck fusion is wonderful but my low back fusion I deeply regret. Instead of standing straight and good posture I now am bent forward and it keeps getting worst, I can’t even hold a 2 liter bottle and walk it will fold me over farther. My hips are retracting inward and walking has gotten very hard to do without severe pain. I can’t lay in a bed I sleep in a chair sitting up, because of the way I’m bent forward it has cause the lower part of my spine to stick out. Since the cutback on my medication I can’t sleep because the pain wakes me up all night plus I suffer from restless leg syndrome and it too is now almost constant. I use to do my own shopping but now I have to bother others to go for me. My house use to be pretty clean but I can’t keep up with it anymore. I don’t go anywhere except my doctors appointment once a month and then to the pharmacy then back home, by that time I’m hurting so bad I can’t wait to get home. My doctor ask me how am I doing and when I tell them how bad I’m doing the only thing they’ve offered me was injections which I had done 30 years ago that never helped at all. I had 2 surgeons over the years tell me as long as I still have that hardware in my back there isn’t an injection in the world that will help me. I told my doctor this and the reply was well I offered. Two years ago while this was going on with the cut back my husband of 34 years was dying from pancreatic cancer, I begged them to not take my medication at this time because it was hard on me but they didn’t even care about that. I have never once in the 30 years on pain management lost my prescription or had to ask for it early and I keep my bottles in a locked safe. One thing that really is upsetting is if a person on pain management gives a dirty urine, they don’t get their medication but these drug attacks that go to these methadone clinics can pee dirty all the time and they still get their medication!!! Why aren’t THEY being cut back, I’m in pain not an attack and I’ve never gave a dirty urine!!!!!

3. I’ve suffered with chronic back despite spinal fusion 3 years ago. My surgeon was able to get 30% relief of my pain, I still suffer with a pain level of six to seven. I literally cannot function because of the pain. It wears me down, interrupts my sleep, makes someone I don’t know. Opioids are my only long term relief. I have tried chiropractic care, massage, ice, heat, physical therapy, and bio-feed back. I use my pain meds to remain active. I am not pain free, but the narcs keep me comfortable enough to get up off the sofa and live my life! I can prepare meals for my husband, swim 2-3 times per week, and participate in some activities in my community. Without pain relief, I am unable to do anything!

4. In the last 2 years I have had 4 back surgeries. 2 failed laminectomies then a spinal fusion (that failed) then they did a spinal fusion hardware removal. I am left with a crooked back and in so much pain.

5. I was hit head on by a drunk driver and had several surgeries on my legs. My doctor shows me this chart on how much medication I should be taking but it’s like half of what he had been prescribing and we knew that worked. He keeps saying how he is being pressured by everyone. I see all the publicity on the abuse of opioids but nothing on the people who handle them responsibly and need them to live and function every day. Why don’t they go after all the people who abuse alcohol like the guy that hit me that had 7 DUI tickets but still had a license and no insurance and should have been in jail when he got his 7th 22 days before he hit me.

6. Hi. I suffer from fibromyalgia and rheumatoid arthritis. My sleep medication was stopped. Sleep for fibro patients is essential. My pain pills were cut down by 1/4th. This means I wake up from pain in the middle of the night and can’t take another pill till 6am. Or if the pain is so bad that a pill was needed in the middle of the night, I had to give up a 4 hour window free of pain for the day. What really tops this off…I was just told that my rheumatologist won’t be able to sign for medical marijuana. With medical marijuana I can stretch the time between pills. My preexisting condition which was stabilized has now been thrown under the bus. Thanks a lot politicians.

7. At 15, I was a passenger in a car crash that changed my life forever. My pelvis was crushed, along with my left leg. That began my medical odyssey 48 years ago. Since then, I have needed 6 left hip and 1 knee replacements, along with having my right foot rebuilt twice. There are unhealed fractures in my spine and I have been bedridden for the last 6 months. Add to that the vaginal squamous cell carcinoma I endured in 2017. Unfortunately, while my mostly-radiation based treatment killed the cancer, it is still killing the once healthy parts of me. I am on my second round of fourth stage (weeping desquamation) radiation burns after having lost my right vulva to radical surgical intervention last year. This time I have been told they will not operate to remove them since the surgery was so catastrophic last year. I am currently awaiting spine surgery. My 6th hip replacement is 11 years old already.

   These new laws that restrict access to opioid-class pain medications are putting me at risk for enduring chronic acute pain for the rest of my life. If I were going to become an addict, it would have happened decades ago. I have a steadily increasing sense that life won’t be worth living much longer. I have suffered enough. I am using up my stash of saved post-operative pain meds. When they are gone, I probably will be, too.

8. I suffer from chronic back pain. I have had 3 back surgeries but have gotten no relief. I started taking pain meds and was able to function. My doctor sent me to a pain clinic and I had good results. But they started closing pain clinics. Now I have to go to a methodone clinic to get meds. I have to pretend to be an addict in order to get meds for my pain. I hate it but I do it so I can function. Thanks for listening and reading my story.

9. Been in Percocet for 10 years. Under care of Internest. Chronic Sjogrens disease. My immune system eats up cartilage. 10 joint replacements or repairs. Deterioration continues. Fusions in spine are necessary now. R shoulder needs replaced second time. Replaced joints never like your own, they wear on me. My pills were taken away “cold turkey “. No withdrawal. Just taking to much Tylenol and Advil. Which are more dangerous to organs. That’s why my Doctors put me on Percocet in the first place. It was safer. Ive NEVER abused it. Always a pill of three left at end of month. My pain Dr is just terrified for himself. Says. Your btl is worth 9,000$ in LA. That’s not my problem. I have an affliction not an addiction. It’s in genetics. Or those who are looking to do something to themselves, will find another way. Why do some turn alcoholic or gambleholics. It’s genetics. Why am I being punished and forced to live in pain?
   12 hour time released Percocet or Morophine are a joke and $680.00 a month. Ins pays twice as much. Percocet was $2.00 and worked. God please someone help me.

10. Since 2009, I have suffered from chronic unspecified pain, mostly in my joints and digestive organs. I saw many, many specialists and they all ran tests. They said there was no clear diagnostic reason as to why I should be experiencing so much pain. They suggested this was a psychiatric issue, due to the tragic death of my infant son. Every time I was given opioids by one doctor that helped my pain, the next doctor would berate and chastise me for using them. Again, my pain was blamed on the pain of losing my son. Me being a woman, I was not taking as seriously, especially with such a great tragedy in my past that was so easy for doctors to use as a scapegoat when they could not find a diagnosis. I spent years in pain, being accused of being a “drug seeker” by doctors, pharmacist, and worse…by my own family. I finally gave in and took antidepressants to see if they made a difference in my symptoms. No surprise, no change. I missed out on so many precious moments with my children and husband that I will never get back. My medical record has “flags” on it cautioning providers to use narcotics sparingly, even during hospitalizations.

    Just this year, 2019, 10 years later, I finally found a caring doctor that listened to me and ignored the records that gave him an unfair preconceived notion of my past. I mentioned nothing of the loss of my beloved son so that he would focus on the actual symptoms that my body was producing and the blood tests and the imaging I had spent 10s of thousands of dollars on. He examined me and looked at all of my tests. He says the word I had waited over a decade to hear. I wasn’t crazy. I have systemic lupus erythematosus or SLE. This is the reason for my chronic pain, my need for many hospitalizations, my bone degeneration, my many autoimmune diseases that required surgeries, my difficult, high risk pregnancies that killed one child and almost killed another and myself. Since 2009, I have had so many organs fail and I am in constant pain. This is why. Not the death of my son. I am so angry that I have been doubted and shamed for so long. Now more than ever, even though I have a legitimate diagnosis, Pain medication is still withheld as a last resort. I am currently only taking Motrin for pain as they will not fill a narcotic prescription, even though I have on going degenerative spinal disease. It’s only going to get worse. I am only 38. I have never tried to increase my dosage or refill a prescription before it was time. I have never given a doctor any reason to distrust my use of narcotics. But doctors are running scared now. Even with a clear diagnosis, they are full out denying patients of their right to pain relief. It won’t make me pain free but it will sure make my days easier and improve my quality of life. Reading other people’s stories about their diagnoses, I cannot imagine how they are denied pain relief. My heart goes out to those suffering with unimaginable pain that I cannot begin to understand. I am mostly writing this in support for you. My situation will probably not change but I hope it does for you. But I also hope doctors try to listen to their patients more closely and not get physical pain and psychological pain confused. Not everyone who hurts is crazy if their diagnosis isn’t slapping you in the face. Not everyone who hurts is a drug seeker if their diagnosis isn’t slapping you in the face. We all have limitations. We are all human. We all make mistakes. Doctors are human. Doctors can make mistakes. We need a better system in place so the innocent do not become the victims and the wrong people stop being punished. It’s maddening and harmful.