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.
My name is Suzanne. I have two very painful forms of arthritis and associated neuropathy. I have been on pain management for more than a decade. I began a program of pain management using, among other modalities, opioid medications when it became clear that I wouldn’t be able to continue working and supporting myself because of excruciating pain related to arthritis and nerve pain. I had reached the point that I was often unable to complete a full days’ work because of unbearable pain. Even with the medications I ended up using a wheelchair for nearly 5 years because walking was simply too painful to tolerate.
I have signed a contract with my doctor to obtain my treatment. The contract requires that I take periodic urinalysis, fill my prescriptions at only one pharmacy, refrain from consuming alcohol, not accept opioid prescriptions from another physician without contacting my doctor and, of course, not exceed prescribed doses. In addition to opioids I have and still use at times NSAIDS, PT, heat and cold applications, TENS, topical pain meds, oral steroids, IV steroid infusions, joint injections, massage therapy, hydrotherapy and rest. Because of pain management I was able to continue to work and support myself until I retired at 65.
Once I reached a dose that gave me enough relief to get through the day I have not experienced tolerance or a need to increase my doses. In fact, I have adjusted my levels down since I retired. Although I am rarely pain-free (never was really my aim) my pain is often at a tolerable, background annoyance level.
With the recent intense focus on the “opioid crisis”, which in reality is an addiction and overdose crisis people like me are facing a reality of returning to a tortured existence despite the fact that I and many like me have followed our treatment plans precisely. We are not the ones overdosing. While I don’t ever expect to be pain free I and the thousands like me deserve to live a tolerable life. I personally feel that we are the low-hanging fruit. In the information age we are easily identifiable. Regulators and elected officials focus their efforts on us, can say they are doing something about the problem. Unfortunately it is not addressing the problem. Opioid prescriptions have decreased in the last few days but overdose deaths have continued to grow at an alarming rate.
CRPS (Chronic Regional Pain Syndrome) has robbed me of my life. I had undiagnosed osteoporosis and broke my foot 4 times/and my ankle once, and I was put into a cast for approximately a year. When the cast finally came off, my central and peripheral neurological system still had the pain. No cure, it’s called the “suicide” disease because of the pain that is unbearable. But, I’m blessed with a Dr. that still takes care of me, I don’t abuse my medications, but I am able to live a limited partial life, exhausted most of the time, as pain is exhausting. I don’t understand how a government agency can lie about how many people have died from illegal narcotics, with the agenda of making themselves rich by offering programs to fix people that cannot be fixed. Pain patients cannot be made whole, only be made a little more comfortable. A lot more people are affected by nicotine and alcohol and other things they chose to use, but true pain patients just trying to have a life that so many others can take for granted. Please listen to us, chronic pain is not something we chose, it chose us, so please help us to have some quality to our lives. We are not the trouble, abusers will continue to abuse something. Let our Doctors take care of their patients, and keep government out.
I am a 55 year old woman on SSDI for 22 years. I am on daily pain meds that recently have been rapidly decreased over the last 2 months leaving me in excruciating pain, depressed and suicidal. Even on my highest level of pain meds I could barely function, but it was enough to get me to Dr’s appointments.
I suffer from the following:
Sarcoidosis
Fibromyalgia
Hypothyroidism
Arnold Chiari Malformation
Severe Osteoporosis
(broke back 3x from minor falls)
Osteopenia
Macular Degeneration
Insomnia
Severe Depression
Recent Tibial Plateau Fracture
(and knee replacement)
PTSD
(horrific sexual abuse, rapes as child)
Brain surgeries
(2x subdural hematomas, spntaneous)
Degenerative Disc Disease
Herniated Discs
Sleep Apnea
Radiculopathy
and all the symptoms and pain that go hand in hand with these issues.
I spend 90% of my day in bed. I have no quality of life. I have only one friend left. I can’t cook, care for my husband, house, or my 2 5lb dogs. I chose not to have children because of my medical issues.
I have never abused my pain meds, never taken more than was prescribed, never used alcohol with meds, or dr shopped. I submit to urine testing with no issues for 14 years. I get different types of shots in my back for pain as well.
So, why am I and other people with Chronic Pain and responsible attitudes towards the use of pain meds suffering due to manditory decreases? Can someone answer that? Why are our lives not worth anything? Suicide is always an option for anyone, but should not be an option for pain management!!!
I have undergone my 8th Major Surgey since 201, I have been diagnosed with Several Chronic Conditions that cause pain. Ive been cut off and mistreated and turned away when I was even bleeding internally its so bad. But yet meds are still easier to get On the Streets! Ive suffered too long nit to do something here and let my voice be heard. We needbto be putting these meds in the proper hands and maybe, just maybe we’ll get somewhere.
I was in a really bad boating accident in 2001…I was caught in the boat propeller and the propeller actually had to be removed from the boat still stuck in my femur bone and be surgically removed. A long with muscle flaps skin graphs a metal rod and plate with 15 screws that will always be a part of me. I was in the hospital for over a month. I almost lost my live and my leg …luckily I’m still here! I struggle daily with pain. Ill never be “normal” again. Ill never get to live a life thags full and successful..instead I dread waking up just to know ill suffer with pain I can’t control..ita not fair to me or my kids that I have people trying to tell us who suffer daily that we are all addicts…which is so far from the truth. Until they walk in out shoes they shouldn’t be allowed to take away our right to live a life with manageable pain so that we may also be a part of society that works and live a normal lives…well that’s all we want to and if taking pain medicine is what we must do then leave us alone so that we may live fulfilled lives like everyone else! My story also made the news and newspaper.
I’m 57 years old and was an active photographer with a long time career working for Walt Disney Imagineering – 35 years of service. Breast cancer – high grade diagnosed in June 2015. I had a bilateral mastectomy as my cancer had a 35 percent reoccurrence rate and also went through chemo and radiation. The surgeons promised me all great things. Except they did not inform me that there was two resident surgeons fresh out of medical school and a 3 year resident surgeons who did my bilateral mastectomy and lymphnodes removed in record time of 93 minutes. Seems I was the last person in surgery and dinner engagement was more important than I. Promptly done at 5:34pm. I woke up in excruciating pain and told to suck it up. I was beside myself vomiting from pain abdcasked what happened in surgery unaware that resident surgeons worked on me. Here I am 3 years later still in excruciating pain and no justice. I ended up with another surgery by a doctor that was going to help me and take a look and found horrible remnant reconstruction material left behind with a Seroma 2 years after mastectomy. I had nerve entrapment and was told by my previous surgeons that everything was removed and it wasn’t! Yet the surgeon who claimed everything was out would aspirate a Seroma 4 more times to lesson pain. Chemo and radiation caused more damage to the nerves. I’m in pain management with a great doctor. However when it was time to refill my prescription last week the pharmacist at the hospital claimed they didn’t have meds in stock. I replied I will need to go to ER. I have no medication left!!! Pharmacist at that time said let me see what I can do. He filled my prescriptions. Nothing but horrible lies. Our future is at stake with lies by pharmacist who simply profile you and refuse to fill medication claiming they have none in stock. It’s a lie!!! I’m so upset. My pain dictates my days and I am disabled by my nerve and tissue pain along with other auto immune disorders I now have after cancer treatments. We cannot be told that there are no medications. This is tragic. The drug addict will find their fix. Yet the chronic pain patients are refused refills and lied to. Pain affliction is a lonely disease and only those that suffer every day understand this horrific pain. If I could take Tylenol I would! It doesn’t work!!
I Am a 57 yr old woman who has lived with Chronic Pain for Many yrs. I Have had 23 Surgeries.. 13 of which have Been on My Arms and Hands ..Many Due to Complicated Surgeries and Have Been Diagoned with Numerous Spine Problems..With Arthritis Through Out My Body..Tears also in Both Hips…Foot Arthritis.. Arthritic Knee…the List Goes On. Everytime I Have an MRI there Shows Reasons for My Pain. Now What? They Want to Do More Surgery..I Have Had Enough Surgery and Will Say it Can Make Matters Worse. They are Pushing Me to Have Unwanted Surgeries Because They Are Taking Away My Pain Control. They Have Taken Away My Quality of Life and Left Me in Terrible Pain So That I Cannot do Everyday Functions. The Pain is Unbearable at Times! They had Just Gotten Me on the Right doses to Make Life Easier and Pain Free and Now they Want to Take it All Away so That I Suffer in The Worst Pain..Noone Should Have to Endure. I Have Had All the Shots they Suggested to No Evail. Why Would Anyone Think Someones Pain Will Magically Go Away? They Say Your Pain is Emotional…Whats Emotional is The Anxiety of Wondering How You Can Go on Like this. And yet They Say Your Emotional Pain Makes Your Pain Worse? My 75 yr Old Husband Should Not be Taking Care of Me,,,All Because I Cannot Function in Pain. So Now,,Im Spending Much Time Lying Down. This is Not Living! And I Refuse to Have More Surgery..Because This is My Only Option. To Maybe Have Another Surgery Go Wrong..And Not to Be Able to Get Relief from The More Pain There After . To Have Your Child Watch You Suffer in Pain is Putting an Emotional Toll..No Child Should Go Through. Let Alone Your Alling Husband. How Can We Be Forced to Do This to Our Loved Ones? And To Ourselves?
I’m a 60 yr old women that has scoliosis & degenerative disc disease. I’ve lost five & a half inches & there is five disc that are involved in degeneration.
I’ve been on a number of pain medication with very good results. I had one Dr that actually understood how much pain I had. She had me taking Morphine ER 3xday with Oxycodone 4 daily for breakthrough. For the first time I was actually able to function well.
Unfortunately she left the area. The next Dr. cut my meds more than half. It was so bad that I felt I had no life at all. Currently I have no Dr. I have an appt next month but I worry that it will not help.
I feel life isn’t worth living. Not sure what to do but when you hurt so severely ever time you move, is it really worth living.
To whom it may concern I am a chronic pain patient who has suffered greatly my chronic pain started in my arms it was unthinkable pain I could not lift my arms I couldn’t look at clothes on a clothes rack without devastating pain if I was driving I would have to pull over and cry for God’s help it was so devastating and hurts so bad but my nightmare of pain wasn’t over by a long shot now in my back I had a burning Inferno of pain I literally laid in bed bedridden 2 years with my back on fire the only way I can help the pain was to lay on a heating pad during this time I was puking I had a fever no doctor knew what was wrong but I knew devastating pain and it riddled my body I literally cried for 10 years straight may I just say if you had this kind of pain and the tears roll down your face everyday how would you perceive your life to be devastating say the least living with this chronic illness is just heartbreaking it’s been a total nightmare one I would not wish upon anyone somewhere I read about a device that measures Pain Scale I think it was in the UK supposed to be in the US sometime this year in my opinion this would help a great deal in the opiate crisis doctors would be able to measure your Pain Scale therefore they would know if you needed proper pain medications for your illness something has to be done we can’t live like this it’s an outrage and it’s not fair to anyone with a chronic pain condition or an illness that requires pain medication I know I for one will not stop when it comes to advocating for people with pain when are pain condition is not being met we face heart attacks Strokes high blood pressure memory loss concentration problems which could cause accidents there’s a whole list of things that that we deal with puking the emotional and physical effects there’s something that has to be done and done quick and by the way I am a very strong person I have dealt with pain off and on my whole life I pulled every ligament in my ankle at the age of 11 and didn’t even shed a tear but I have shed many tears from this illness please help us go forward so that we can live comfortably in our lives and not be devastated by pain I pray for all of us that there is change amen
My name is Arianne and I’ll be 50 next week.
I was involved in a tree cutting accident in 2010 and sustained a cervical spine injury as well as having chronic illness that causes daily pain. I was able to achieve a good level of functionality while being treated with opioid medicines to mediate my pain. I was able to garden, walk, and to travel to see my children and grandchildren.
I was able to take care of farm and household chores with more ease when I had access to prescribed pain medicine, and I could even sit and watch a movie comfortably with my loved ones from time to time. Now, my life and my health are spiraling out of control after being without medicines to effectively mediate my chronic pain for almost 5 years.
I have also been subjected to under-treatment and denied treatment over the last 4 years for issues outside of my chronic pain issues. I’ve had to have 5 surgeries over the last 4 years, including an abdominal hysterectomy, which resulted in me being subjected to what they refer to as ‘ENHANCED RECOVERY’ after surgery. This is a nice way of saying they will severely limit or deny opioids altogether peri-operatively.
If people really believe this opioid insanity will not touch them in some way they are tragically mistaken. If you have a family, or a body, or if you are a human being who will get old and perhaps need hospice or palliative care, you’ll be affected.