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 am currently undertreated for my Ehlers-Danlos pain because my doctor’s office has referred out all chronic pain patients and can only give me a couple of alternative medications. I’ve considered taking my doctor up on her offer to refer me to a pain clinic, except for what my mother has been through.
My mother (who also has hEDS) was fired from one pain medication provider’s office over Christmas for missing an appointment while my brother was dying from cancer. They claimed they had sent multiple letters, they hadn’t. We didn’t get the first letter or any inkling there was a problem from them until we received the first and only letter they ever sent, a week after the deadline they set in the letter to rectify the issue and avoid the firing. They also refused to give her enough pain medication to cover her until she could find another provider. They literally left a newly bereft mother in fear of the onslaught of physical pain she would experience. She was able to find another in her area, that worked well, up until they failed to inform her at either of her last appointments that she was supposed to have gotten more tests. Keep in mind, my mother is not addicted and is happy to demonstrate it through testing, she just needs to know when they need her to get the tests. They blamed her for their lack of communication and fired her again, oddly enough, with a referral to another clinic, so I guess that’s good.
My mother has served her community for decades in her job and through her volunteering. She uses her pain medication responsibly, but is being treated as if she is an addict for being human and not being able to read her doctor’s office’s minds to know when its time for those tests, and for missing an appointment while her son was in the process of dying. If doctors can’t be precise with their communications about tests, and processing communications vital to the doctor-patient relationship, how can they expect their patients to be more on top of things than they are? And how am I supposed to trust them if they can’t see and treat my mother as the human being who made an appointment mistake while grieving, that she is?
Fused spine, 4 shoulder surgeries, 4 biceps tendon reattachments, wrist dislocation surgeries. Starting 2005, 100 mg was increased over time to 320 mg, then mercilessly down to 50 mg. Stress and withdrawals were insane, heartless doctors, was forced to take spine injections to get meds, marriage ruined, struggle to work enough to live. Life destroyed.
Hello, My name is Elisha, and I am from California and I will be 40 next month. I was born with a rare genetic syndrome that affects every bone, joint, and muscle in my body. I look fairly healthy but I am one out of 16 people in the world with my syndrome. I also have osteoporosis and neuropathy. Doctors are unsure of what causes my chronic pain but it started in my late 20’s. As a child I underwent many surgeries and by the time I was 15 I had already had 52 surgeries.
I started getting Norco like candy by my primary around 2010 up in central California. By 7 years later I was in pain management in LA because I needed long-acting meds and breakthrough pain meds for the bad days. I was given MS Cotton 3 a day and Percocet 6 a day then dropped to 4 a day. These medications did NOT make me high, they made it to where I can function daily and get out of bed. I was a full time student, part time work and wife. I lived life to the best of my ability.
As years went on the pain got worse. Fast forward to 2018 I am now living in a Palm Desert, the Riverside county. I was seeing a great pain management doctor. I saw him twice and he was great! My third appointment I was being seen by his PA who knew nothing about me and didn’t seem to care to. All she had told me was that my UA was dirty for fentanyl.
I knew it was because I had just tried in from a “friend” because she said it was Percocet and would help my pain. The first try I was hooked. I was so ashamed because I had always followed the contract and never did street drugs in my life!
The PA said I had tested dirty 3 times. She didn’t care to explain to me the dangers or that, the fact that I could get kicked out of the program, or ask my why I did it! I had did it because my pain was not being managed and I was too scared that if I told her she would look down on me and take away my meds. Sure enough that appointment was less than 10 minutes long. I asked her about changing my meds and she said, “Next time you come in we will talk about it”. A few weeks later I received a letter stating I was let go from testing positive 3 times and that I will get one more last refill of my medication. I did not!
I was upset with myself, but I also was upset in how they treated me and now I have in my chart DRUG ABUSER, DRUG SEEKER! I had emergency surgery and they didn’t want to give me pain meds. I now see an addiction specialist. I went to detox from all opiate and Xanax detox for 8 days because he so desperately wanted me on Suboxone! I have anxiety and panic attacks so I get 0.5mg and he wanted me off of everything! He now has me on Suboxone with Sublocade. I cry most days because I am in so much pain!
Should I remind him that I am 1 out of 16 adults in the world with my syndrome! Let along my bone density is the equivalent of an elderly. I wake up with pain at a 10 or higher and it hardly comes down. I am now keeping a daily journal of my pain and what I take to help the pain.
When I tell people I am going to get back on my meds they laugh at me and tell me that will never happen. As for the fetty yes I am in outpatient recovery for that and do want to work on that. There for an addiction there and I want to know why. It nearly killed me and I now have no function of my right lung because I was using that to cope with my pain. I didn’t abuse my pain meds. I’m I stuck, screwed and never going to get any relief?
My primary is willing to give me Percocet as PRN and that is all I want! I’m fine with sublocade as long as it’s not bad for me. I want off of Suboxone! I am not a recovering drug addict. I was under-educated and the doctors still need to get my meds right!
Can you help me? What should I do? I am sharing my story on Tik Tok. I don’t have much support. My own mother says I ruined it for myself. I refuse to believe that!
Thank you!
Elisha Gutierrez
I have classical type EDS and was removed from pain treatment in 2017 due to pain treatment guidelines. My physician quit and returned to working with inpatient hospital patients due to the guidelines limiting his ability to help patients. I have been unable to work and am homebound since then.
In 1973 I had a Harrington Rod put in my back from T4 to L2 because of scoliosis. Did great for many years until I developed Degenerative Disc Disease and Spinal Stenosis in my lumbar spine. In 2006 I had lumbar fusion from L2 to S1. This surgery consisted of 2 titanium rods and 8 screws. I also, had the L4-5 and L5-S1 discs replaced with cages. In these cages was placed a material that was to “grow” artificial bone. Some time after my surgery (and still in extreme pain) I saw an ad on TV about this artificial bone material and called the number mentioned. I found out that this material got flagged by the FDA as causing Chronic Pain and in some cases paralysis.
Over these past 15 years of taking opioid medication for pain, I have been finding it harder and harder to get my medication. I have been looked down on by people who can’t see a disability. I feel I have been classified as being part of the Opioid Crisis.
I live in Kentucky and my children/grandchildren live in Alabama. I also have family in upstate New York. A few years ago I was able to get my pain medication filled in either state. I would let my doctor know ahead of time and it only would occur maybe one or two times a year. In April 2021 I informed my doctor that I may have to get my medication in AL because my grandson was graduating high school in May. He was graduating 6th in the top of his class so it was a really big deal. The doctor informed me that I would NOT be allowed to fill my prescription any place except for the pharmacy I currently use. I said that I use Walgreens and that I could use a Walgreens pharmacy there in AL. I was then informed that that would not be an option, and to better manage my time or perhaps skip some of my pills to make them last longer.
I didn’t ask for this chronic pain or the pills that make life bearable. I truly wish people and the government knew the difference between individuals who ABUSE opioids and the individuals who are dependent on them. If I could work in a garden or walk in the park without pain, it would be a much better life for me. Pain is going to be with me the rest of my life … so why do I feel punished?
Thank you for listening
I had a direct inguinal laparoscopic hernia repair and had a lot of nerve damage and even tried holistic medicine but no relief and saw specialist after specialist with no results. Then in March 2021, I had nerve blocks in the front and back for six months and then had a spinal cord stimulator trial for my groin pain. The test failed; I am now experiencing pain along the legs, arms, back, shoulders, neck and having difficulty lifting or opening objects/primary care needs. There is a large amount of excessive pain in my shoulders and behind the head, accompanied by night sweats. The pain is unbearable; no physician has been able to prescribe successful medication that I need to get back to whatever the new normal is for me. I worked on the front lines vaccinating patients during the worst of the pandemic and left due to excessive procedures and inadequate pain management that I was regularly seeing. I want to use my graduate degree and leave this behind me. I’m looking for anyone willing to help me or give me advice.
Thank you
I’ve been on pain meds since the early 90s… I’m 66 years old and have multiple active back problems being treated by my pain clinic. Three months ago my doctor cut my meds in half, and I have never experienced the pain this intense before. My daily ritual has been totally shut down. I have no quality of life anymore… I have never abused my meds or failed any of the clinic’s urine tests. Each time I go back I get trigger point injections, which aren’t helping anymore. The pain is so intense I sit all day on a heating pad that covers from my neck to bottom of my spine. It hinders my sleep at night. I HAVE NO QUALITY OF LIFE… and the clinics says their hands are tied. God help us. WVa is where my clinic is.
What do we do as people who really need the medications we were initially on that helped us live a tolerable life again… why is the CDC not listening… give us our lives back!!!
Hello my name is Heather. Long story short I have an L4 L5 extrusion. I have arthritis throughout my entire spine and my spine bends over from the overcompensation for my breast. I have had numerous back injections as well as a breast reduction. I live in chronic pain which has affected my entire life, mental and physically. I can’t sleep, it’s hard to function. I have been to numerous doctors throughout the years. I haven’t been treated correctly for my pain since it started almost 12 years ago. I’m only 37. There are days I can’t walk. My feet are affected. My neck. I can’t bend over and I take care of 4 kids – small children. I push through it but boy am I in pain. I was just let go from a doctor and he’s refusing to treat my pain until I find a suitable doctor. He’s refusing all my meds for that matter – for my heart etc. This is has been to say the least heartbreaking. I’m devastated.
I live in Utah, and they use the 2016 CDC guidelines as gospel. I have scoliosis, ruptured discs at L5-S1, and bulging discs at L3-4, and C4-5-6, plus multiple compressed discs in my C-spine that have caused the natural curve to be straight, which puts a lot of strain on my muscles there. I got a SCS in February 2021, which hasn’t helped very much, and doesn’t touch the pain from the scoliosis or my neck pain. I have chronic intractable migraines as well. My meds have been cut down to a level that barely allows me to function. I have quit working, I can’t take care of my house anymore, and I have trouble with my hygiene due to the mid-back pain from the scoliosis because when it flares up, I am in pain for days. I am only 51, and I feel like my life is over. I have many days when I wonder what am I still here for, if it’s just to suffer in agony every day for the rest of it?
It’s so unfair for all of us to be at the mercy and whim of doctors who don’t give a damn anymore. They’ve lost their humanity, and only see us through the lens of drug abusers and criminals. None of us asked for this, none of us want to live in agony every day, and we shouldn’t have to. What they’re doing to us is cruel and inhumane. I hope that somehow, something swings back our way and gives us the fair treatment that we deserve.