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.
September 8, 2018
No point in complaining, you won’t listen. Why should you care. It’s not your pain, but here goes…
I am now 65. My pain issues started 20 years ago during the best times of my life.
I have taken care to see my children grow into adulthood. I’m now a grandmother of Five.
The only way for me to deal Day and night is through the use of opioid therapy.
For every month for twenty years I have seen my pain management doctor
I’ve been subjected to approximately 80 urine screens I never failed one.
Do you see your doctor every 4 weeks to renew your medications? Do you pee in a cup to determine if your medications are found in your urine and no other drug not listed on a form? Do you know anyone who is prescribed a medication to help them is put through this?
Now I’m faced with the very real possibility that I could loose the medications that were fine tuned to meet my pain issues. I have already been reduced or eliminated medications in the last year to fit into guidelines.
These guidelines are like gospel truth. Not laws. Yet I am made to be punished like a criminal because I am depended on these medications to control my intractable pain
I know the drug crisis is real, but cutting medications to chronically ill people is not the answer to the problems facing our nation
The illicit drugs pouring into our country is the real issue.
Because you can’t fix that, blame grandma who needs her pain pills to help her care for her grandchildren. The stats will look better, but ask yourselves in a year, why are people still dying?
Why are chronically ill people being punished for the drug crisis plaguing our nation?
We are not the problem. Take away our medications, take our dignity, you can’t break us. We are the strongest people you will ever meet.
We’ve been fighting most of our lives.
Take away the medications of the chronically ill, People will still die from illicit drugs.
In March 2018, I suffered a severe disc protrusion in my lower back. The pain was agonizing and debilitating. I’m in my sixties and have had my share of painful experiences but nothing prepared me for this episode. My wife and I went to a local emergency after hours facility and they prescribed a muscle relaxer and steroid pak. I took a muscle relaxer and fell asleep only to wake up 2 hours later in excruciating pain. Threw those out. The steroid pak worked after three days. They told me that they don’t prescribe pain killers for back issues. Three days and nights of no sleep and agony. Guess they feel that that builds character. Not sure how or why. Maybe they thought that I would abuse the narcotic? Maybe they thought that I was the reason for the supposed nationwide crisis? Or maybe they thought I was a professional athlete. I filed a complaint with the NC Medical Board….waste of time! My concern is that folks who experience this pain level, will be punished for the abuse of a few. Let me know if you need additional details as I will provide names, dates, and places. Good Luck for all of us!
When I was in my early thirties with 2 small children my husband dead from asthma and pneumonia and a mother dying from cancer I was exposed to hazardous chemicals on my job due to the company I was working for being allowed to squeeze every pennies worth of use out of malfunctioning equipment and the state government being run by the same kind of nasty people who are making sure that the doctors are afraid of treating their patients! In any case I developed a rare autoimmune diseases and then fibromyalgia and then another autoimmune disease that is destroying the skin in my vaginal area. I also have back injury at every level of my spine which I’ve been told by multiple surgeons is inoperable. Or to put it in their words operating is just as likely to cause more pain. Since I have a rare autoimmune diseases that causes inflammation in the vascular system it’s been a challenge to get proper medical care. I have tried herbs, physical therapy, chiropractic care, messages, which actually increased the pain, yoga, water therapy, acupuncture which caused an allergic reaction to the needles because of this disease, medical marijuana, which has caused more pain not less. In the end I ended up in a wheelchair unable to wipe my own butt, much less care for my children until I went to a doctor who wasn’t a sadistic ass and he started me on fentanyl patch and norco for breakthrough pain. The first morning after putting it on I was able to get out of bed and felt like life had been given back to me! I’d suffered for over 10 years bed that with inadequate pain medication. Like prednisone, neurontin and Lyrica, which made me fat diabetic and sicker! I eventually got gastric bypass surgery to help with the ridiculous amount of weight the steroids and Lyrica/ antidepressants caused . But it meant that I couldn’t ever use NSAID’S again, especially since I have marginal ulcers that just don’t want to heal up! So when I went to my doctor and he said that according to the Trump administration I am on too much opiates and he has to taper me down to “acceptable” levels I asked what I was supposed to do for the pain because I refuse to go back to the days of being an invalid, He gave me a prescription for NSAID’S and when I reminded him that I have marginal ulcers that can esily cause me to bleed to death, he said well then don’t take them. I did indeed take them because the bottom line is that if they kill me then the pain will be gone! I’m rethinking the decision as I’ve been laying in bed all night with acute abdominal pain and I’m thinking that heroin isn’t that bad if you ingest it . They actually prescribe it for pain in Europe and if you ingest instead of inject it turns into morphine naturally by your body. After all ODing has got to be better than a GI bleed!
I am a victim of mesh, which was implanted for 10 years before I had most of it removed. A few months after the explant I had spinal surgery and contracted MRSA in my spine, resulting in multiple surgeries, and osteomylitis. I have extensive nerve damage and scar tissue.
When I knew I was losing my insurance, I tapered myself off of opiates. I started using Cannabis and Kratom to combat my pain, PTSD, depression and anxiety.
I have a phobia of doctors now. I am also no longer a candidate for surgery due to MRSA, including any invasive proceedures.
I am lead organizer for the State of Alaska for the National Protest to educate the public on how people with chronic (and now acute pain) is suffering from our nation’s addiction problem.
My son was given a spinal injury in 2014 at 20 years old by a woman talking on her cell while driving. She ran a red light and started his journey into chronic and lifelong pain. I have watched as doctors refuse to give pain medicine for documented pain.
It wasn’t as bad in 2014 as now. He has just had spinal procedure at AA pain and spine. The doctor refused to give any post op pain meds. I fired him and found someone who would give next procedure with planned post op pain management plan.
My son experiences autism as well and has sensory issues that affect his pain tolerance.
This refusal to give pain meds especially following surgery is tantamount to patient abandonment in my opinion. Watching my child suffer for the last 4 years and having to fight the doctors to help him suffer less has been horrible.
He has finally gotten relief as the result of his pain stimulator surgery.
He is now headed back to college at Embry-Riddle and DVR is helping him get a job.
He has basically been bedridden for these last few years.
On a smaller scale, I was just in a car wreck and had minor injuries. The ER doctor told me to take alleve and stretch. I am still hurting and have missed week and half of work.
I assure you, pain comes to us all. Either us or our beloved child.
Thanks again!
Kelly “Taryn” Ellis
I was told he just has to suffer- they literally said this.
I never felt so helpless in my life. I had to go to marijuana store to try to help him.
I am a person that works full time and Strives to continue to do so vs going on disability. However, when you have pain everyday of your life and the one thing that assists you in relief is cut in half, disability becomes the only option. It appears right around the corner when there was a recent time it seemed at least 5 more years away.
I have SLE(lupus), Rheumatoid, Psoriatic, Hashimoto thyroiditis, degenerative spinal disease, hypergammaglobunemia, occipital/trigeminal neuralgia, small nerve fiber neuropathy, failed back surgery with fusion, cervical herniation, erosion is wrists etc etc etc.
I continue to work and try as long as I can. However, I soon realized how I was able to continue to do so recently. The HB21 wasn’t suppose to affect patients like me but supposedly it is anyways as my physician is cutting the prescriptions. I have heard the DEA is putting pressure on them, however, what I am trying to wrap my head around is how can one agency go against a state law that put patients like me as exempt? What I don’t understand is how are people like me being affected by this when we need our healthcare more than ever.? Here is what I truly have to say to the government surrounding this:
I am a chronically ill, ADA citizen, that is trying to continue to work full time. I would like to start by stating, not all chronic pain patients are addicts and abusing what is being prescribed. What amazes me is that bars aren’t restricted in how many drinks one can take, but yet people are killed by drunk drivers every minute of the day. The people for whom go to bars aren’t even at the establishiment for treatment of a medical condition. However, if they critically hurt someone in an accident due to drinking that person can only have 3 days of relief. Something is wrong here. I am in complete support in having records being pulled to ensure people aren’t getting C2’s in different states, pharmacies or by different doctors. However, when the government begins to dictate what physicians can and cannot do, it becomes dictatorship. I am a person for whom you do not know, but are definitely inflicting. I have a great job and am in the medical arena. The other part of me that you need to understand is what I live with everyday. I have Psoriatic and Rheumatoid arthritis, SLE(Lupus), Small nerve fiber neuropathy, hashimoto thyroiditis, fibromyalgia, spinal stenosis, occipital and trigeminal Neuralgia, hypergammaglobunemia, osteoporosis( I am 45 and have had since I was 37), osteoarthritis and more. I realize that you truly can’t understand what I live with and what I go thru everyday because you do not live it yourself. That is the main issue here and with what is going on. There are laws being made that are negatively impacting patients, like myself, by people that have no idea of what is like. You won’t have any idea until you walk in my shoes. I hope you never have to because I wouldn’t want you to feel what I feel daily, however, what I do know is that if you did, you wouldn’t had signed HB-21 into effect and allow the DEA to scare physicians where they aren’t even able to practice medicine as TRAINED. I realize that I am not an acute pain patient, however, all of this is scaring the physicians so badly that they are cutting our medications. I can work because the pain I feel at 150% is taken down to 40%. Can you imagine waking up every morning and your hands and feet are swollen and you can’t move them? Can you imagine times when you can’t even bend over or play with your child because your back hurts so badly? Can you imagine not being able to bend your wrist because you have a hole of erosion within it? Can you imagine that simple things in life such as bowling or golfing is taken away and if you do it for one day, you pay a price? Can you imagine every morning waking up and feeling every muscle in your body hurting as if you had been beaten? Can you imagine the one thing that decreased all of that being taken away from you??? I am sure that you can’t and unfortunately, I wish that you could for one minute. I have learned throughout my life that you can’t control what others do no matter what you do to change things. I would had thought that being in a position such as a president, congressman/woman, governor and senator that you would as well. The point to this statement is, if people abuse their medication, they are adults. I do not agree with physicians and pill mills, however, doctors for whom are treating real illnesses SHOULD NOT be penalized nor should the patients that are LIVING THE DISEASES AND SUFFERING. The government is not controlling the bars that give drinks to those that get drunk and kill people are they? Is the government controlling how many drinks those people can have? NO, you are just trying to control those that abuse medication and penalize everyone else that doesn’t. You are penalizing those that need the medication to do the basic things in life that you take advantage of. You are penalizing those that are trying to have a quality of life for just ONE MINUTE. You are penalizing those that are able to work because their pain level is reduced to 30% when they are used to it being 120%. You are truly trying to control what people do in the wrong way and it is affecting and inflicting the chronically ill people such as myself. If you truly want to stop the opioid crisis for which classifies as heroin, take care of the borders and please stop inflicting suffering onto us that already suffer not by choice, but by diseases we have. Stop punishing your people that are sick and lead them into disability if they aren’t already on it. Please stop and educate yourselves on what is going on and what the people are like that are chronically ill that are on opioids. There isn’t a way to stop the addicts because unfortunately, they are grouped in with the chronic pain patients. Have you stopped the drugs on the streets? However, what you are failing within your sight is when you are stopping them or trying, you are hurting Americans with Disabilities. Not everyone on opioids is doing it for their pleasure but a true medical need to survive with pain that you can’t ever imagine on a daily basis. I can appreciate the thought behind all of this, but what I don’t appreciate is the lack of thought of those that are impacted that shouldn’t be. Shame on you as our government that we are to trust.
I was diagnosed with fibromyalgia in 2010, Rheumatoid Arthritis in 2012, Psoriatic Arthritis this year, and also suffer from chronic EBV (mono). My nightmare started in 2009, with sleepless nights and excruciating body pain. I suffer everyday with widespread muscle pain, bone pain, joint pain, and winter days are a nightmare for me. I have four children, I have no choice but to work, as I need to take care of my children and that is becoming more difficult. My pain management doctor had to reduce my pain medication dosage at the end of last year, due to the new guidelines, which has wreaked havoc in my life. I go to work, but my work suffers, due to how awful I feel almost everyday, I come home and go straight to my bed, because I hurt so bad, but still need to make dinner for my children,’help them with homework, and need to spend time with them. I can’t walk for long periods, go shopping, clean my house, let alone enjoyable things such as dancing, roller skating, as my pain will flare through the roof, and I’ll be down for two days. Without pain medication I would not be able to get out of bed at all most days, I would not be able to function and be a part of life. My quality of life will be nonexistent, as it’s close to that now, due to the decrease in my medications, because of the new guidelines. I don’t abuse my medication, I’m not getting high on my medication, it’s simply helps me participate in life. Until you’ve suffered with chronic daily pain you have no idea what life can he like or how these medications save our lives. We should not be punished for the people out there abusing it. I don’t think it’s difficult to tell the difference between patients who need it and aren’t abusing it from the “seekers”. Or the difference between the doctors who are responsibly managing their patients pain and the ones who are not. All of these changes are destroying chronic pain patients quality of life and I pray you never have to walk in one of our shoes.
I’m from the state of VA lived with serve mirgraines for 39years the pain pills give the the quality to my life to be abailty to do the things I need to do take care of myself .Yes some days I still in bed .But I’ve also had about 22 surgery done on one of wrist I go to bed with pain since all the doctors took them away from me .Cut you off and let you go thur the withdrawal of them Some doctors need to step up to the plate for some of their patients that has chronic pain like me and others or find use something that will work.
A serious motorcycle accident where as I was forced off the road by a vehicle driven by someone who neglected to even stop 15 years ago has left me in continual pain from a laundry list of injuries including a closed head injury that when awoken from coma had me speaking fluent sentences in reverse ., thankfully my brain had self corrected apon the second coma awakening. A crushed trachea from the full face racing helmet I was thankfully wearing, broken collar bone, fx scapula , broken tip of shoulder , all on left side, 6 broken ribs , collapsed lung , spinal compression fx , with nerve root impingement , broken tib fib , still have titanium rod and seven screws holding that together. These injuries have been treated successfully and responsibly in that time span until this year. This year found me in an most uncomfortable forced taper feeling pain that I have not felt since the nearly year of rehab that I went through. Yes I was on a good bit of meds that I accustomed to , and even finishing two college degrees in my recovery. I don’t blame my doctor I know he under pressure to reduce all pain meds due to Gov. Mediling . I adjusted to a semi good quality of life that now with cold damp weather approaching has had the thought of whether surviving the accident was such a good idea after all, more than once.