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 was formerly diagnosed with Fibromyalgia for the first time in 1993, at age 11. This was after 3 years of attempting to figure out what was wrong. At that time, we were told it was a sleeping disease and my body just wasn’t recharging properly.
I had ups and downs throughout my life. I was even a cheerleader in high school, enlisted in the US Navy right after. I made it through boot camp. I remember pushing through worsening pain as the weeks went by. Because I couldn’t “walk right” at my first duty school I was sent to medical. I had 6 stress fractures in my shins. The pain wasn’t any worse than my normal, but because I had stress fractures, the doctor prescribed a low-dose opioid. That’s when I learned that pain meds (not OTC) actually helped the fibro pain. The two weeks I was on the meds I was able to sleep for hours without being woken up by the pain. I could walk up the stairs normally. But it was temporary, and I never dreamed to ask for pain meds routinely as that would be the end of my military career.
Unfortunately, a year in I found myself to be a victim of MST. Due to lack of communication/understanding, it resulted to be assigned to him as my partner for the next year. I developed mental health problems that, to this day, gets me told everything is just psychosomatic.
My health slowly deteriorated over the next 14 years. By 2012, everything I tried to get medical help was blamed on behavioral health or my weight. So to eliminate the weight “problem” I had weight loss surgery. Once I was down, for the first time doctors started to take me seriously.
I believe that the constant pain has messed with my mind. I began to lose work function because of it. In 2014, I was asked to retire. They told me, because I always looked to be in pain, I was making those around me uncomfortable. With several significant gaffes I made due to brain fog, I was retired.
After I lost my career, my doctor finally treated my pain with a pain medication (rather than meds for depression, seizure, etc). It worked. I was able to take ahold of my life. However, in the six years I’ve been on the same meds without increase, it doesn’t work as well anymore. Sadly, I have also put on a bit of weight too, which according to the manufacturer, reduces effectiveness. I also have longstanding side effects from previous medications (seizures).
Today I struggle with medication tolerance (which I have been told is a myth by other doctors), had specialists refuse to treat me because of my medication list, and be told that he can’t increase my meds because I’m at the top of the DEA allowance. Not to mention all the hoops I must jump through due to my pain contract. I am bedridden, and have had bathroom accidents because the pain is so severe on some days. I try to hide the pain as much as possible because I know it makes people uncomfortable.
When the CDC updated their guidelines, my doctor asked if I would be willing to reduce/eliminate the only one of my meds. At that time, I asked him to show me the studies that say opioids don’t help. He was shocked when he couldn’t find any.
My doctor is a good man and doctor. However, he has cited the CDC and DEA as reasons not to work with more pain meds, not his expert medical opinion. The DEA has no business in deciding my medical care.
I have had chronic pain since I was 12. I started having cysts on my ovaries. It continued into my twenties then I was diagnosed with endometriosis. I have tons of surgeries to ablate the web. Finally had a hysterectomy at 26. That was supposed to make everything better. It did for 3 years. Now I have migraines, fibromyalgia, and anxiety. I have had pain in my left rib cage for 6 months now. Spent months in and out of the hospital with no answers. This last visit I was left for 6 days without opioid management. It was what stopped the pain in the ER. I cried and cried. I actually had a nurse tell me to shut up because I was was disturbing other patients. I had a pain management team give me patches, creams and tylenol. I had discussed with them that nothing was helping. After I was discharged I got ahold of my records and was labeled a drug seeker and having such behaviors. They ran drug tests on me and all were negative. I’m still suffering and no one will help me. Pain management is overwhelmed in my area and don’t like to take on Medicaid patients. I’m so miserable, have 3 kids and just finished nursing school. But can not continue like this… so frustrated
I’ve been in pain since I was 9 years old and struggling with a disease that took another 17 years to diagnose. That was Hidradenitis Suppurativa. It’s considered to be one of the most painful and debilitating skin disease in the dermatology world, and often makes the top ten list of most painful in the world.
Since then I have been diagnosed with fibromyalgia, RA, Mascular Corneal Dystrophy, Raynauds, Psoriasis, PCOS, borderline Gastroparisis and I am currently being screened for CIDP. I also have CPTSD and untreatable depression. During my journey to find competent care I have found that I have several allergies that make treatment difficult. I can’t take any serotonin inhibitor medications due to multiple cases of serotonin syndrome, and no gaba receptor medications due to severe and potentially fatal side effects. I’ve had multiple surgeries and procedures to combat and manage my diseases – some helpful and others less so. I am also extremely sensitive to steroids and can only take them in very low dosages – almost not even beneficial for treatment. Opioid therapy seems to be the only treatment that has given me back some semblance of a life long lost and that my body hasn’t reacted to negatively. They believe the demyelination I’m currently experiencing is due to the biologic that has kept me in remission for the last few yrs from my HS.
We are a military family and often have to move. This always results in having to start my care over as there are no protections currently in place for a continuum of care for family members. We recently changed duty stations and here is where the problem started.
When we arrived I met with my new pain management doctor, if you can call him that. He told me I needed to be tapered as it was illegal to treat rheumatic pain with opioids in my new state, and that I needed PT and to see a rheumatologist. I didn’t fight him on this, I was compliant and did as he asked. I tried to get in with rheumatology and kept getting denied because of my allergy list … you can’t give me any of the commonly prescribed meds, so they always kick me back to pain management.
About two weeks into my taper my body went into shock from the rapid taper, and the stress of my body beginning to flare from all my diseases at the same time to the point that all my motor and neurological functions were running haywire. He prescribed me a taper medication that is usually used for blood pressure (mine is naturally low and it wasn’t really increased by the normal standard) it was high for me however. Within 20 minutes of this medication I passed out, and my husband ripped the patch off and watched me for the next 10 minutes, monitoring my vitals. I spoke with the doctor the next day and he told me all was fine, just only use it if my pressure exceeded the normal high. At the time I took it, I was at 150/99. Again sensitive to many meds.
At my next follow up I explained that things had gotten worse, I even experienced a flare in my HS that has been dormant for two years. I didn’t even at that point give up on the taper, I asked him if we could stabilize it for a week to give my body a break and then continue. He fired me as a patient that day and refused to prescribe anything more and told me to go back to rheumatology and my PCM. I did a walk-in the next day.
She said because I met with him that legally she couldn’t prescribe me any medication and suggested that I seek emergency care or a rehab center. I went to the ER and was refused care for opioids or withdrawal symptoms and was told to seek care from a rehab facility. I searched for a rehab and was denied twice because I was told that I was dependent, not an addict, and another because they didn’t do opioid detox, and yet another because they only treated people with mental health issues, and my CPTSD or depression didn’t count.
I ended up passed out in a VA hospital bathroom floor in their ER department. I was given an induction dose of withdrawal medication and referred to a detox center that would take me. I spent the next 11 days in a center medically detoxing, and was released with a diagnosis of opioid use disorder, and offered to stay on said medically managed treatment of that medication we cannot name.
For the next three months I suffered in debilitating pain while second opinion referrals were made to pain management. I haven’t been in that much pain in over five years, and contemplated ending my life several times during this period. My faith and husband saved me from making this choice. I was unable to walk, bathe, use the restroom or anything else during this time, and was denied palliative care. I thought I was dying.
In the course of all this I lost 52 pounds because I just couldn’t keep anything down from the pain I was in. I met with the new pain management doctor and had a very long talk with him about my allergies, history and all that had occurred in the last few months. He sat there in awe of my story, and as I talked to him he got increasingly upset and somewhat emotional about what he was hearing. He was the first person who was actually listening to me. He sent me home to get records and imaging required by my state’s guidelines, and on the next visit gave me about a third of the opioid therapy I was receiving before all this mess. It was all he could do legally for now.
Within this last week since receiving my meds I have been able to do Thanksgiving, get my kids ready for school, wash the clothes that had been piling up, make dinner on my own, and do the week’s shopping. I have gotten all the procedures, injections, had the weight loss surgery, done yoga, had years of cognitive behavioral therapy techniques, received acupuncture, did 8 months of chemo to reset my biologic medication, been through 5 rounds of physical therapy, been bed ridden for 3 years, fine septic twice, and practice mindfulness and meditation and prayer. None of that worked to manage my pain.
Opioid therapy has been the only thing to give me back my quality of life, and yoga like stretching has kept my mobility existent. Before all of this new CIDP and forced taper issues I was able to do CrossFit and train as a competitive weightlifter with the help of opioid therapy, on top of the demands of being a military spouse. Now I live in fear of getting cut off again, or building up tolerance and not being able to increase my dose, in a system that would deploy my spouse to fight a war while leaving me behind, bed ridden and with no home health care, or possibly ending his career because of being unable to do his job because of the level of care I need, and leave us without any healthcare at all. All because of a fake opioid crisis and refused prescription medications that were literally created for hard to treat patients like myself.
For the past 18+ years, I have been dealing with debilitating migraines, at least 2 per week. I have been on every medication to try and treat them and the only thing that works for approximately 6 weeks is Botox. I get a round of injections every 12 weeks. Even the neurologist PA who administers it comments on how tight the muscles are in my neck.
In 2014, I graduated nursing school and have been a registered nurse since. In 2015, I injured my back and herniated discs in my lumbar spine while providing care to a morbidly obese patient. Since then, I have had everything short of surgery done to manage the severe pain. I have been in pain management since then and for the past month, my doctor has been writing my prescription for less and less quantities without giving me any explanation. I have been 100% compliant with all of her requests, getting my medical records, urine screens, etc. I have never had a problem with pain medication. I take it as prescribed and it allows me to live a somewhat normal life instead of being bed ridden.
I have degenerative disc disease in my cervical and lumbar spine, with herniations in discs in both areas. It is now to the point where when I show up for my appointment, she no longer examines me but rather, writes the script with less quantity than the previous visit, walks it out to the front desk, they hand it to me and I leave, without even being seen or having the chance to talk to her. Yet … I’m still paying the same amount of money out of pocket to see her, without even seeing her. My last appointment was yesterday and the same thing happened. I ended up having a conversation with her about my upcoming epidural and my increasing pain in the waiting area surrounded by a half dozen people. So much for HIPAA.
I was stable on my medication and this unexplained decrease is really upsetting me because for the first time in a long time, I finally had my chronic pain managed. I want answers but she won’t even give me the time of day or a proper physical assessment. I am so sick of these games and people thinking chronic pain is a joke just because it’s an invisible illness. This has me feeling depleted and overwhelmed, wondering what I did for her to just decrease my medication without giving me any explanation.
I’ve had multiple surgeries after an injury and been on pain meds ever since. I would be bed-ridden without medication. Now, I’ve been stretching out my dwindling supply of medication for three months since the pharmacy said my medication is not available. I’m not able to get around except to struggle to get to the bathroom. I saw these questions somewhere and I think they are worth asking because something terrible is happening to pain patients and we need help. Here are some questions one should be asking.
Why are legitimate pain patients not being excluded from the so-called war on drugs? Why is the DEA and the State Medical Boards concerned about drug addicts going without even to the point of allowing city governments to create programs that deliver the drugs of their choice to them?
Why did Senators order continual reductions of opioid drug manufacturing to the point of causing supply shortages?
Why do these same Senators not want closed borders to help control illegal drug smuggling?
Why did the government create a program that pays doctors to force their pain patients to accept the extremely addictive Suboxone (buprenorphine) along with expensive and harmful epidural injections that replaces the patient’s usual medication?
Why is the government ignoring and even denying the deaths of pain patients caused by ending access to medication?
I am so grateful to find this organization. It’s time we all stand together to help each other fight for our rights as chronic pain sufferers.
Denying successful treatment to chronic pain patients who have a laundry list of incurable illnesses isn’t smart or preventive. It’s murder. One way or another, they will self-medicate or commit suicide. What kind of world do we live in where these are our only options. Pure negligence and malpractice.
Hi, my name is Autumn. I was hit by a semi truck about 13 years ago. I had no issues until that day. Fast forward now I have 3 kids and living in Cape Cod Massachusetts because my husband is in the service. I am in constant debilitating pain and I have to try and care for everyone else. I’ve seen so many doctors, but because of the new laws etc, especially here in Massachusetts I cannot find anyone willing to prescribe to me. I feel so depressed and hopeless.
My husband did two tours in Viet Nam and 23 years as a police officer. He has had back surgery, laminectomy L-1 through S-1, he has had cancer of the jejeum, right and left ablations, which did nothing for him, and he is in continuous pain. He was given a patch while he was in the hospital for cancer, and was on it with other opioids for a very long time. Unfortunately, his system was using a three day patch in 1 and 1/2 days. His pain doctor told him he would become used to it and it was not a big deal. In he meantime, he had suffered a heart attack, and this doctor wanted him to go through withdrawals every day and a half. His meds have been cut back and he is suffering like no person should. He is dependent on these drugs and is not abusing them, of course he is addicted, after 20 years of being on them anyone would be addicted.
He is going to be 77 this year and what is the difference if his meds are increased at this point? I would LOVE for him to have a Quality of Life, for however many days or years he has. It is a real shame that he cannot be increased. His pain doctor agrees, but his hands are tied. I have written to the President, the FDA, the CDC, congressmen and senators and have gotten nothing but a hand job stating that is my state’s maximum that he can write for.
What kind of a country is this? One size DOES NOT FIT ALL. Everyone is different and this is NOT being taken into consideration, with all this opioid abuse. It’s us older people and people that have real pain that are not being taken seriously. Something must be done to help people like my husband. We are not all junkies looking to get high or over, just people that are looking to have some kind of life.
I am 58 years young. I feel like I am 95 years old, and on the rare occasion when I am able to walk, I look like a decrepit old man hunched over and barely able to move. I had been active my entire life, weight lifting, running, jogging, swimming, biking, hiking, etc. Now, I am barely able to walk, sit, stand or move without excruciating pain and hundreds of volts of electricity going through my body. It’s not the worst I have heard of, but we each suffer our own hell, right?
Car accidents, work related injuries and genetics have all lent themselves to what has evolved over the years into two neck surgeries, one back surgery (three levels), knee surgery and foot surgery, which has left me unable to function anywhere near the way I once did, and suffering horrible bouts of chronic pain, which at times gets so bad I simply want to turn out the lights. In the past five years I have not slept any longer than 1 hour 20 minutes at a time, at which time I must try to sit on the edge of my bed for an hour until I feebly attempt to sleep once again… only to get maybe another hour of “twilight sleep”. You know, kind of like that moment when you are still conscious, but barely asleep? I can hear myself whimpering and crying from the pain.
I have tried all of the alternatives the so-called “pain doctors” claim to believe will work much better than the opioids will. What a joke!
When my “pain doctor” first told me that I needed to begin a detox from the opioids I had been taking for years, and the withdrawal symptoms began to be too much, he actually told me to take a cold shower and eat some chicken noodle soup. LOL… So, before I chose murder/suicide, I chose to go to the local methadone clinic which had saved my life, IMO… I know, no drugs… So, with that I’m finished…
A list of the non-narcotic treatments for the pain I suffer from… Surgeries – the results made me worse… Scores of shots in my neck and back… I will say that one shot I had in my back gave me wonderful relief for about ten years… Since then, no doctor has been able to hit the same spot, or in any way match those results. TENS unit – it gave me some relief, but upon turning off the unit, immediately put me right back in the same way. Literally 30 to 40 various non-narcotic pain relievers, none of which really worked. For the most part, most of them gave me horrible side effects, some of which I refuse to ever take again… Frankly, I’d rather suffer the pain. Accupuncture – nothing. Various forms of light yoga – nothing, sometimes caused more pain. Positive mental reinforcement – what do you think? Aqua therapy – wonderfully relaxing. Worked wonders while in the water. The combination of the heat and lowering the level of gravity was wonderful, but insurance would only cover ten visits. Then Covid-19 hit and the pool closed… Physical therapy – most of my pain is the result of an affected nerve in my neck, which is non-detectable through x-ray or MRI, so says the doctors… So, treating muscle spasms is futile… And, a variety of other mind over matter training – another case of – what do you think?
So, I am left to suffer. No doctor will give me even one lousy Vicodin, for what that might be worth. I feel like I am the only person that suffers from such agony. Obviously, that is certainly not the case.
So, in the meantime, we all sit here and suffer based on some “misinterpreted guidelines” the medical community has unwittingly misunderstood and turned into a living nightmare. These are men and women who for the most part have NEVER experienced anything remotely close to what we all suffer from, and therefore have absolutely no idea as to the real-world misery we all live with. Frankly, I have a huge problem putting much stock into someone that insists upon preaching to me some literal BS that he/she has only read about in some CDC handout!
Now, I don’t know if I actually blame the doctors or if I blame the entities that employ them. Most doctors these days work for a big medical center and are only puppets who do as they are told, and chances are even better that what they have been told to do even goes against their own better judgment! Still, they continue to refuse to help treat their patients with proven and effective medications that have for decades given chronic pain sufferers real relief! IMO, for a doctor to refuse to prescribe an effective treatment is just shy of malpractice, and certainly goes directly against the doctors’ Hippocratic Oath. I have literally been told by the nurses at the pain clinic I have gone to, that the doctors there simply “refuse to prescribe opioid pain relievers to ANY PATIENT, EVER!” This is a pain clinic! What a f*****g joke!
So, what to do? I am so miserable every moment of every day! My doctor has told me to take Motrin. She knows that my liver is in bad shape (I was treated for Hep C in 2001 with Interferon, successfully), but my liver enzymes have risen over the past several months that I have been taking the prescribed Motrin. I have no choice. Without it, I am in so much pain I would rather die!
Don’t even try to argue your point with your doctor; suddenly you are a drug seeker and all credibility has been shot! Frankly, I am sick of the whole ordeal…