Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
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Tell your story of living with chronic pain, by leaving a reply at the bottom of the page. Do not mention specific medications or dosages. Stories do not appear right away.
I have a broken neck and collapsed spine among several other complicated issues from failed surgeries. Forced to be referred by a friend and former doctor of over 20 years due to his legal issues. I am forbidden to contact him. He knows my complicated history both medical and personal. I called him on his personal phone for advice whenever I needed it… in real time… Haven’t taken or filled a prescription for 19 years. Can pass any drug screen at any time. Have been intimidated by a system that says it is looking out for my best interests. I was referred to a doctor in Michigan because I am forbidden to speak with my friend. I have been waiting in a bed, in a hotel for 70 days now. It costs more than my income every month. The hospital that I am scheduled to visit is full of coronavirus potential patients and the flu is so bad that visitors are not allowed in. I have to wait in line to answer the questions… Name? Date of birth? Age? Do you have insurance? Address? Relatives? In a few words describe your injury… the resident doctor will be with you soon… we are backed up so it may be a few hours…
I’m from the Government and here to help you…
Glad they protected me from Dr Bauer…
I feel better now knowing that my life is in their hands…
I injured my back in 2008, giving care to my home hospice husband. I was his only caregiver and had to lift his 5’11” frame multiple times a day. I was left with serious unrelenting back pain. I struggled with it for two years, unable to work or function. In 2010 I finally relented and had a lumbar laminectomy. The pain after surgery was 1,000 times worse than before surgery. The surgeon told me to give it a year to improve. It did not. Now I’m told that my hardware has come loose and I’m facing a second surgery? I have complete numbness in my left leg, foot and ankle, I have pins and needles in my feet. I trip over my feet and fall often. I have become bed ridden, and have lost the ability to do anything that I once enjoyed. I stay at home and pray for relief from the next pill. It only takes the edge off. I will not have space-age devices embedded in my body because I think they’re a gimmick, and I listen to other patients talk in the waiting room. I have no support system, no surviving family. I live alone, in extreme, excruciating constant pain and isolation. My pain management doctor recently retired and my new doctor cut all my medicines in half. Now I suffer more. I am seriously contemplating suicide. I have the bridge picked out. If it were not for my love of Jesus Christ, I would already be gone.
I have been in chronic pain for 15 years. I am on disability since 2009. I have numerous health issues but the 2 biggest being a deteriorating spine and CRPS in my right leg down to my toes. I am at a pain level of 8-10 every single hour of every single day. I used to have the proper amount of pain medication that made my life about 50% easier to live. But now I am house bound most days and even unable to get out of bed many other days. I am treated like I am a criminal as I am being continually weaned from my medication. I have tried all the injections, physical therapy, spinal cord stimulator and bio feedback but nothing helps. We have to jump through hoops to get any medications and we are being held accountable for the opiate crisis. That’s not fair to those of us that need medication to have a somewhat normal life.
Hi my name is Mark, my girlfriend is 69 years old and is a 4 time breast cancer survivor, and as a result of surgery, arthritis, and a compression fracture in her back, she is in almost constant miserable and excruciating pain. Every attempt to get pain medication from doctors have failed. I am composing this note in an attempt to help her. Thank you Mark
My name is Cheryl Ostrander, I am a chronic pain sufferer. I have had to live with chronic pain since 1994.
You see I was a factory worker doing piece work from the time I was 18 until the age of 32. I loved working and I was very good at what I did, until my doctor told me I could not continue to do manual labor due to a severe injury to my right elbow, which resulted in two extremely painful surgeries. Pain plagued my body in a way I had never experienced before. After seeing multiple doctors and trying to find out what was wrong with me a rheumatologist at the Mayo clinic told me I had fibromyalgia.
In 1998 I went to college and earned a degree in computer science with a GPA of 3.48, I loved it! I was able to obtain a position at Bass Pro Shops in their computer repair department where I worked for two years. From there I went on to be the network administrator for Teeters in Bolivar. In 2005 I began having severe pain in my neck and arms. I was sent to a neurosurgeon where they discovered a bone spur and bulging disc in my neck that were dangerously close to my spinal cord. I had to have surgery to correct that and they fused my neck from C4 to C 6 and I have had to be on pain medication since then.
Unfortunately that was the end of my career. At that time I went on disability for the chronic pain that wreaked havoc on my body. My health spiraled out of control after that. I was diagnosed with breast cancer in 2008 which resulted in a mastectomy and countless reconstruction surgeries. In 2013 I was diagnosed with chronic pancreatitis, leaving me in yet another debilitating amount of pain every time it flares up. In 2015 I had to have a total knee replacement which was incredibly painful. In 2016 I had another mastectomy leaving my body writhing in pain every day. Then in 2017 I began having problems with my neck again. I had another spinal fusion leaving my neck fused from C4 to T1. The pain was so intense that I couldn’t see living that way every day of my life, but I have held on.
I have spinal stenosis, spinal degeneration, AS in my low back, hips and neck, Osteoarthritis, Pustular Psoriasis, degenerative disc disease, fibromyalgia, migraine headaches and chronic pancreatitis.
Fibromyalgia has a way of taking hold of every speck of pain in your body, and turning it into a massive amount of lingering intractable pain.
The reason I am telling you all of this is because there are people just like me all over this country who are suffering at the hands of the opioid crisis.
The new CDC guidelines have no room for chronic pain patients. We are stuck on the outskirts of this war on opiates hanging on for dear life.
Our doctors are scared to death to write us prescriptions for opioid pain medication, forcing us into pain clinics where we are treated like addicts and criminals in order to get what we need just to live a somewhat normal life. A life where we are still in pain but have it under control enough to participate in everyday events. Things like playing with our grandchildren and taking care of our homes. The very simple things in life that keep a person feeling like they have a purpose here. As of this moment I am not on a sufficient amount of medication, and am being forced to taper to follow these guidelines. They are terrified of what may happen to them because of the CDC guidelines if they attempt to give us the care that we need.
Chronic pain patients are not a one-size-fits-all situation. Some people hurt more than others and some hurt less. I implore you to please try to find a better solution. Putting chronic pain patients on palliative care could be a solution. Please give our doctors back the ability to assess their patients as they were trained to do in medical school.
So I have legitimate pain issues. I have degenerative bone problems. Several disks deteriorating and both my knees are bone on bone … there is NO joint left there. In addition I suffer from various intestinal problems that I’m not even allowed to speak of in this “pain clinic” I’m forced to go to.
First of all … I’ve never been convicted of a crime in my life and I’m almost 60. But I am not a patient to these pain clinics. This feels exactly like a felon going to visit their parole officer. I’ve never seen an actual ‘doctor’ in this latest clinic. Just these very young ‘provider’ people who haven’t a clue what chronic pain feels like. I have to check my dignity at the door because it will be wrenched from me as soon as I enter. After filling out a mountain of paperwork and a lot of waiting, I’ll get called back for my drug test. Here … I will have to leave my purse because I’m not allowed to take it with me into the bathroom. Hopefully that tech will stay in the room with my purse although I have caught her walking to another room leaving my purse unattended while patients are milling around asking why the long wait. After that, more waiting … literally hours at many times. Finally, you get called to have your pills counted then sent to another room to wait. Then a cocky provider comes in, cuts your meds in half and forces you to take shots. Be fitted with a brace (this is the part where they just milk your insurance for every dime they can get).
If you question them about these shots they will get angry, threaten to dismiss you and then cut your meds way back. Shame on me for being very afraid of the use of propathol in a dirty office setting. To wrap this story up because it’s turning into a novel … All I’ve heard from them is the laws and guidelines they have to follow. It’s not about me or you, it’s about how much money they can make while still keeping their license. The epidemic no one is talking about is the suicide rate that will continue to go up from people being so miserable from pain and feeling defeated by the CDC, DEA, media and public opinion. How did we ever let all these organizations get in between us and our actual doctors?
I have had breast cancer, I have seven bulging disk because of working as a caregiver, both my knees have severe osteoarthritis. I also have biracial plexus neuropathy and systemic neuropathy and fibromyalgia. Help
Hello, I write this because I want to share this. From 2007 to 2018 I have had 3 lumbar spinal fusions and 5 laminectomies and 2 left knee replacements (1 was a revision). I have noticed over the years the doctors’ less and less willingness to prescribe pain meds when really needed. So I would follow the other OTC recommendations when they wouldn’t prescribe meds. Those times I really needed pain meds and followed the OTC recommendations it never helped. So I tried to adjust and when the pain became so bad I would go to the ER. Then I was diagnosed with advanced prostate cancer 5/18. The cancer isn’t an issue with pain … it is the pain from the effects/side effects of the chemo drug and radiation. On a few occasions in the last year my oncologist prescribed 2 prescriptions I asked for. Each time he would mention the guidelines and such about prescribing opiates. Now he won’t prescribe any at all if I need them. So long story short I am caught in the middle of this mess.
I was treated by the VA for decades for my AS and OA. Each day I took my Opioids as prescribed. I was able to work PT as a manager for a 38 unit housing facility. Then one day the VA stopped giving me any pain pills. When I objected to this harsh treatment they put (to my amazement) a notation that I had a substance abuse problem! Later I found out from others that they had done this to ALL VETS who had been cut off from pain meds. I never asked for more pills in all these decades. Never overdosed or was treated for substance abuse. I didn’t get “high” from pain meds I just felt like a normal pain free healthy 68 year old. This is how the VA drastically reduced it’s prescriptions so they could show the CDC, DEA and the press that they were fighting the War on Opioids.
Privately, my elder doctor said his hands were tied by the VA Administration. Now I spend most of my day on my back, my leg muscles have weakened and a recent x-ray shows “significant osteoarthritis” to quote my doctor’s letter. This is due to 24/7 pain and inflammation that I Did Not have while taking meds. All they have offered is cortizone injections which is ineffective. I can’t take NSAIDs due to GI bleeding.
What can I do? Right now the pain prevents me from walking more than 10 meters. My sex life has also stopped and now my young wife is frustrated/angry with the VA. To say I am depressed is putting it mildly.
Martin
I’m happy to see that something is being done to make more people aware. I think most not afflicted with everyday struggle of life with this pain, really don’t see it. That every decision, based on how well we can manage such basic movements and how hard accomplishing goals can be. Me, looking around my home at chores and my niece and the things I want to show and teach her. How basic, common simple things can set me back days behind with more pain. A wrong pull or turn and as a man, crying like a child with really no end in sight.
How this can affect my mood, my interactions, and how I may feel tomorrow? I think about all that and then my doctor and his blatant cavalier attitude about doing nothing. The commenting guide said not to include specifics or dosages and good thing because I have none. None – no history for a decade of pain. A decade of sadness. I was arrested on Thanksgiving at the Emergency Room for asking for help and becoming frustrated when they looked me in the eye and called me a drug addict. No drug screen and no xray. This is how united regional medical center helps people. And that was my second time there that day, having been taken there by ambulance the first time. I was given nothing and then a week later sent a bill. I hope my story helps put into perspective the reality that we are living in today.