Share Your Pain Story

997 Replies to “Share Your Pain Story”

1. I cannot get anything else or a higher dose of medicine for my pain. I’ve been in the same dosage for over a 1 1/2 year. The Dr wouldn’t even consider putting me on something else, adding a breakthrough medication, or increasing what I was currently taking. I found out after months & months of telling him how severe my pain is & him not responding, that I needed surgery on my back. Once called & told the receptionist this is the reason why I’ve been in so much pain I need surgery while Dr **** has been acting like an ass. He dropped me as a patient for that comment. Whatever! He did me an injustice anyway by having me to suffer all that time. I would say some bad words toward him & call his name. He has no heart for his patients

2. I have suffered from chronic pain as a teenager. Although I was in sports and very active I had severe fatigue. Not overweight. Normal in all aspects. Only until I was in my late 30’s did I get diagnosed with fibromyalgia. I also was in a car accident that hurt my right side. At 58, I still try to stay as active as possible, which isn’t very active. I experience high levels of pain daily. If I do too much I am in bed the next day, getting a cortisone shot, taking hydrocodone if the aleive I take doesn’t help, and using an ice pack. My mind wants more, my body says no. The hydrocodone, while not my first choice, gets me through the rough spots. A person can take responsibly. Not everyone is an addict. I don’t get high when I take it. It is relieving my pain. On a 1-10 daily rating, daily I am a 7, 10 being the worse. I have 10 days regularly. Short of going to the emergency room, my medication is my only relief. I can’t afford to go to the emergency room as I can’t work any longer. I worked until 2 years ago, but the pain is bigger than me. I pray that government controls the problem, not the illness. Don’t punish pain.

3. At the age of 43, i had a sudden onset of Cauda Equina Syndrome, a rare acquired lumbar spinal condition. This caused nearly crippling bilateral sciatica, loss of bladder and bowel function, excruciating pain beyond the standard 0-10 scale–on the McGill Pain index, about a 38/50—and loss of mobility. I was medevacked for an emergency laminectomy open back surgery along with a discectomy. After 11 days in hospital I was relegated to a wheelchair and catheterization. The prognosis was grim because there were indications that permanent nerve damage to the lumbar spine nerves and the caudal nerve bundles were evident.
   After nine months of three time per week physical and occupational therapy, I was able to regain the ability to walk short distances, identify body function urges despite residual saddle anesthesia, negotiate stairs, and recover from the frequent falls I experienced.
   One problem remained: through diagnostic testing, neurologists determined that I had nerve conduction loss in both legs and permanent, complex pain bilaterally. The pain complex is best described as throbbing water balloons filled with sharp needles that constantly prod me, with bands of burning sensations that envelope both calves in a descending pattern from knees to ankles. Furthermore, constant lumbar pain existed as a constant moderately sharp ache. This pain complex has not ceased since May of 2004.
   After recovery time, the ONLY effective treatment for my constant pain was to initiate a Longterm Opioid Therapy (LOT) regimen. After nearly two years of attempting non-narcotic and non-pharmaceutical modalities, e.g., PT/OT, steroid therapy, message, Cognitive Behavioral Therapy, Mindfulness, and non-steroidal anti-inflammatories, the only medication that had the greatest efficacy with the least number of side effects was Immediate Release Oxycodone. I couldn’t tolerate fentanyl transdermal patches because of skin rashes and oral morphine was too constipating.
   With LOT, I maintained a high paying position with the state of Alaska, passed two home studies conducted by the Office of Children Services, fostered 19 children, raise seven children (3 natural born, 4 special-needs adopted) and participate in social affairs. I even returned to playing drums in a church ministry. MY QUALITY OF LIFE WAS OPTIMALLY AS GOOD AS COULD BE EXPECTED.
   Now that the Veterans Administration, the State of Michigan’s Prescription Drug Monitoring System “PMP-AwarXe” with the NarxCare Analytics Algorithm both incorrectly determining me to be a high risk for overdose or diversion, in March 2018 I was abruptly cutoff of LOT without regard to physical withdrawal. I had episodic tachycardia. Being wiser than the primary care medical staff at the VA, I self-tapered my remaining oxycodone and sought out a new physician.
   MY QUALITY OF LIFE HAS SINCE REACHED ABYSMAL LEVELS. I lost my job. I am in my bed 19 hours a day. I have 3 hours of sleep per night. I don’t not social or go to worship any longer. I push through the excruciating pain a few times a week to walk with my walker as far as I can to hopefully remain ambulatory. THIS IS NOT LIVING. I AM NOW ON THE DOLE OF THE GOVERNMENT, A SHAMEFUL BURDEN ON SOCIETY. All this because doctors are fearful of draconian interventions by the DEA merely for providing me a sufficient amount of opioids, a dose that had not increased in almost 7 years.

4. This has happened to me which I fell from seven story building and brooked my pelvic, crashed my tailbone and brooked both of my legs in September 1997. I be came partially handicapped and dependent on pain medication in order to run my life semi-comfortable, where I was taking hydrocodone at night time Oxycodone at day time and OxyContin for the past 25 years, and I was able to go to work for 8-9 hours a day and got together with my family after work I basically had life, and now some of my Meds cut off the oral medications do to them following the CDC guidelines. Instead I had the pain pump which made me completely handicap and I was in pain 24/7. I couldn’t go to work or take care of myself I was completely in pain all the time. The pain pump wasn’t working the way the oral medications works for me. And than after 7 months I had enough with the pain and suffering. I became very depressed and I told my doctor that all I can think about killing myself, I do not want to live anymore and after he heard me saying something like that, he call psychiatrist to asked him for the antidepressant medication names, so he can put me on it and also he started prescribing me low dosage of OxyContin, and oxycodone. I still can’t go to work I still don’t have a life because I’m not getting enough pain medications like I used to get for the past twenty-five years. I know this is a world wide problem, and I do not know how I could handle this if it happens again to me, because my pain management is telling me that he will cut back my OxyContin Prescription, because he doesn’t want to lose his license, he told me. I most probably I will seek out to end my life without seeking help again. I say this because this issue is not about my well being far as I can see it, but about control and causing me and my family suffering. I do not prefer death unless that is my best option. The same can be said for the 4000 deaths. One thing I did not see is any statistics on how many of the 4000 can be attributed to getting uncontrolled medications to relieve their severe pain as they were not able to get the proper medication and level from their doctor. I personally would not ever sell my medications as all little that I have is used by me so that I do not suffer from debilitating pain to the point that death is a better choice than life. I have since a small child used (some unfortunately say abused as they think that any use of medication is abuse) so that I am able to breath properly, function normally and much much later not be in severe pain due to back and leg injuries, where doctors say that surgery probably will not help me. I have multiple compressed disks pushing on my spinal cord throughout by back a few in the middle, but mostly lower back. I know if lower parts of my body are hurting where I know there are no injuries that it is time To me this is not really living but existing by the use of medication. The same can be said for those with diabetes, my asthma, and other chronic conditions. It comes down to existing with the medication or death. When people say that people that do not have cancer should not be using such medications, they are basically saying to me that they prefer that I am dead. However they are unwilling to admit that. I know life on drugs is not a perfect life, but it is life none the less as without them the only choice for me is to die. The pain not accounting for withdrawals is so much that I am unable to breath properly or even walk properly. Then on top of it I am unable to get proper treatment for ADHD that has been with me since my childhood. That again adds more to my inability to function properly. All I can say is that my government is basically saying to me that I am better off dead at this point, as they do not want to let doctors prescribe for me the medications that help me to live a good and enjoyable productive life.

5. In 1994 I sprained my ankle 3 times and tore the ligaments. In April 1995 I had surgery to clean debris from my ankle and sand the splintered bone. I saw 3 orthopedics which lead me to a Rheumatologist in 1999. I was first diagnosed with psoriatic arthritis then osteo, and now Rheumatoid Arthritis. My ankle is now bone on bone with an option of fusing it because an ankle replacement it not perfected. My Dr suggested I wear a walking boot for a few months to see if it would fuse by imobiling. After 2 years it is not completely fused but so stiff I can’t bend my ankle or move it side to side. I have a tremendous amount of pain and the muscle in my calf is atrophying because of lack of motion in my ankle. It continues to become weaker with every passing day. The pain I deal with on a daily basis has caused me to quit working and go on disability.
   I don’t understand why they have the right to limit my Dr. by telling him the amount of pain medication that I can now have after all the years of him trying to keep me comfortable to making me be in constant pain every day.
   I started Remicade Infusion in 2004 to hopefully help my joints from worsening but can’t help what’s already been destroyed. If a person has never had Rheumatoid Arthritis they have know idea how painful it is and the pressure changes are even worse. With all this being said I’m hoping they will realize people who really need pain relief aren’t out to get high on their meds and use the medication to keep functioning on a daily basis. It is very depressing and heart breaking that they have no comapassion for people with severe pain. So all they are doing is punishing people that really need pain medication to get it legally from their Dr. and are comparing us to the people that are out taking drugs recreationally and getting high and dying from overdosing. My Dr would not give an amount that would allow me to overdose when taken as directed.
   So if the law makers have any compassion for people in pain they would not be Over riding the Dr., Pharmacist, and insurance companies. For the past 3 months I have had to have a Pre Authorization from the Dr. to the Insurance Co. to allow the pharmacist to fill my RX. It’s just not right!!!

6. I would like to thank you for all you have done miss Claudia Merandi .You have given so many americans hope that our lives could possibly be returned to the somewhat what one would call pain being managed .This fictional inhumane treatment brought on by heartless selfabsorbed politicians who call themselves protecting the American public from addiction and overdose are only createing a more devistateing outcry from the human beings who have been treated like criminals. We the people don’t wish to live with the health conditions that control our lives so please get off your soap box DEA FDA POLITICANS and stop trying to play GOD and leave my health condition and treatment as doctor patient relationship .Miss Claudia thank you again for all you are trying and are doing for the millions of desperate people who will now have a face a voice and hope that this night mare could possibly be considered what it is inhumane unconstitutional rights to palliative care . God bless you thank you and please keep the faith that you will have a impact on so many americans lifes. Joel Arkansas.

7. I have been living with chronic intractable pain for over twenty years. I have tried everything my pain specialist gave me in the arsenal from physical therapy, epidural, cbt, aqua thearepy, so so many different types of non medication treatments, and so so so many types of medications. I am a mother of three, a grandmother of two. I had a work injury to my back requiring a spinal infusion multiple levels. The surgeries failed leaving me with chronic severe intractable pain. Two many diagnoses to write. I have lost a lot in my life due to my chronic intractable pain, The government has made it so that my pain specialist with twenty years of documented medical care records has forced my specialists hand and forcibly tappered my medications to not even what CDC quidlines recommend. I was told it was the law no more then 50morphine equivalent. As I go to my pain specialist each month in agony, upset, severe pain am told their is nothing else they can do. I just don’t understand how the government can tell me as a chronic intractable pain patient, that the opiate medication that gives you back your quality of life is now being taken away. How can they decide my medical care without seeing my medical records. I don’t know what to do should we all give up on living. How can you tell us just deal with it. You have not been in my body. How can you the FDA and CDC decide my medical decision without seeing my exstensive medical records. Please remember this was an accident and anyone at anytime in their life can have your world totally taken from you in a blink of an eye. You loose so so much when you have chronic intractable pain. Please please stop taking our rights to receive proper medical attention. Let the pain specialists who went to school for chronic pain have the right to help us not take our opiate medications away without our right to not have chronic pain that destroys you. I don’t know know what can be done for me anymore. My hippa rights have been violated. My human rights have been violated. My right to control severe chronic intractable pain has been taken away from me. When will the CDCand FDA decide to help, when we have all given in and die. Is this the country I was born and raised in. I have the rights to have medical care. I follow all the medical rules. I take my medications to function. Please STOP THE WAR against me and many others who suffer greatly from chronic intractable pain. This can happen to anyone at anytime. Please help us.

8. I was sickly as a child but mom and dad divorced and mom didn’t have time to take me to the doctors. The fevers I used to suffer from!
   In my twenties I was diagnosed with Lupus, Vasculitis, Raynauds and Sjogrens disease. I started on low dose opioid like Tylenol with codeine. I was still in pain but managed to continue my work as a pediatric nurse, hospice nurse and volunteering for my county in Florida. As the years go on my organs are now failing, I have spinal stenosis with titanium in my back and monthly steroid injections in my knees, hips and back to be able to move. I have been on high dose Fentanyl and as needed dilaudid for years and managed to have a life. Now my meds have been decreased 75% and at 57 I am bedridden. I don’t want to live this way, I want to have my life back!
   A fellow Floridian who described her pain on here said not to vote for Governor Scott for Senator. I am asking the same thing. He needs to get out of politics.
   Anyway, I am going to use that addresses and phone numbers provided for my local and state politicians and start calling and sending letters. I urge you all to do the same. Do it once a week so eventually it might get drummed into their brains that we are not drug addicts and need our meds to live! More people will have to go on disability and there will be more suicides on their backs! Maybe families of suicide victims will start suing these law makers for the death of their loved ones. Maybe people will start buying meds on the streets and dying from the fentanyl out there. And someday you politicians will get older and get a disease and have pain. Or maybe your kids or parents and they can’t get pain meds because of the opioid rules you voted on.
   Us pain sufferers, while lying in our beds can still fight. Call your politicians! This has got to change or I will be one who won’t see my 60th birthday.

9. So I was in a car accident in 2013. An 86 year old man slammed into my car as I was parked in the parking lot of a grocery store. I was a 45 year old, active, happy, pain free woman before this idiot hit me in my car. He told the police that he misjudged turning into the parking spot next to me! It jolted me so badly that I have herniated and bulging discs in the neck and back. I also suffer from nerve damage, and spasms in arms, legs, back and my neck. On top of that I have fibromyalgia! The pain is ridiculous on a daily basis. I dont sleep for more than 2 hours at a time…..if I’m lucky to get that. My meds have been reduced constantly. Ive tried physical therapy, chiropractic treatment stretching exercises and many other things. Nothing helps! So I depend on the pain meds to get thru my day, and because of the reduction of my meds that barely keeps me going. I cant lift anything, cant walk very far, no exercising, no swimming, boat trips, and long drives in the car just kill me. So I’m basically homebound. These Dr’s in NJ are getting ridiculous. They want to keep reducing the pain meds, but they don’t understand the pain I’m in.
   If I happen to need an extra pill one day, I feel like a criminal taking more than prescribed. But the reduction of my meds is almost half of what I was getting before.
   This has got to stop!!!
   I’m over being punished or looked at like a drug addict because of the pain I suffer from. I am dependant on my meds, not addicted!
   DONT PUNISH PAIN

10. At age 19 I was in a landslide which paralyzed me I am now 62 and cannot exercise anymore. I have to live with chronic pain without the use of opioids because Doctors are afraid to prescribe it. No one cares or understands That people are in need of the use of a legitimate source effective pain relief.