Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. Back in 2000,I suffered a injury at work,due to a co-worker pulling a roller chair out from under me.When I hit the concrete floor flat on my buttocks it blowed out L4and 5.That was my last day of work after 24 years and age 51.It was a Workers Comp.case .I was referred to Pain Management.Did all the things WC wanted me to do,injections,PT,massage,tens unit,ect,ect . Iwas also approved for 100%Social Security Disabilty at age 53.All while doing this rehab.,PM Dr.put me on loratab 500mg.during all this I had level 6-8 pain.Well in 2002 I suddenly became very weak and was losing blood.Lortab had given me bleeding stomach ulcers.Gastro Dr.said I had to get off pills,so Pain Management started me on a low dose patch. It helped some and in a few months I was put on a higher dose. By this time my pain level was a 4-5,and was functioning pretty good.As age and years came on with arthritis and degenerative disc diease in lower back,pain started to worsen and also started getting leg pain so PM Dr.statred me on Neurontin. Over the next few years PM Dr.has me on patches. Dropped one dose of Neurontin.I have been on this regimen for past 14/15 years with good results Pain level down to 2-3.Now the bad news.Due to new laws and the state of GA. for the past 3 months PM has cut my patch down to 1 every 3 days and gave me a lower dose pill 1 x day. My pain level is now a 7/8. PM says they are weaning me off patch completely. All I can do now is try to lay or sit comfortable as I can. I get up and walk some. I have not slept any more than 3-4 hours at a time.Pain will not let me sleep. I am so upset that these illegal drug people have started this.I am now 69 years old and suffering in pain,because of no fault of my own.Workers Comp has been paying my Dr.bills and meds.for the last 18 years. I have to go to the PM clinic once a month and only get a months supply at a time,and also have to do drug testing.I follow all the rules or I would be cut off from WC and put out of PM clinic.Just for the record,you hear about all the folks on the street over dosing,but I have yet to hear of anyone in our PM clinic die of over dose.My PM Dr. says he cant do anything about it,Govt. making them do it.Me being on WC I can’t even go anywhere else,unless I choose to drop WC and pay for it my self.Some one needs to help us.I pray we all get the help we need. I’am to old for this crap.My wife is having to pick up the slack that I used to do,and she has right shoulder pain.I worry about how bad I am going to be hurting and not a thing I can do.This is so unfair to us who do have pain.They did not think this through and get any feed back from the patients them selfs.

2. I was diagnosed with Systemic Lupus 24 years ago. At the time I was an Registered Nurse in an Intensive Care Unit , which I loved very much. I had to quit there because of the stress and germs. I continued working in a long-term care facility until Lupus started taking its toll on me little by little. A kidney problem first, many tests, many meds.High doses of steroids to try to get the large amount of inflammation out of my body. The high doses of steroids took its toll, too. My bones started breaking, spontaneously. Then, my right shoulder became necrotic. Avascular necrosis it is called. Then my jaw had the same problem. I then had a couple of spontaneous bone breaks in my feet. Both feet are very painful and very deformed. Very difficult to walk. I am in a wheelchair all the time. My right knee was replaced many years ago, but no doctor will try to do any surgery on me because of my osteoporosis. My left shoulder has a 100% torn rotator cuff, but I am a very poor candidate for any kind of surgery. So I live in constant pain. I have been seeing a pain management doctor for over 14 years. But now they are taking away any comfort they have given me .Now my pain levels are usually between 6 and 10.I used to do a few things around the house, but now I can’t even pull my own pants up when I go to the bathroom. My husband has to help me. More for him to do. He is in his 70’s, he has enough to do taking care of the house, too. We in chronic pain are literally being slowly killed by what they’re doing to us.
   I remember when I was first diagnosed with Lupus, my Rheumatologist told me to avoid stress and germs. This is the worst stress I have had in a very long time. That is why I say they are trying to kill us. Don’t forget, Lupus has no cause, no good medications, and no cure. Just measure us for our caskets. I only have prayer now.

3. I’m not a Chronic Pain Patient. I have never used opioids. My husband is. He has been diagnosed with DDD at the age of 26. Since then he has been in several accidents – none of them were his fault – that ended with a neck fusion C5-C6, 4 facial reconstructions, broken back. he was declared Permanently Disabled in 2010 after he fell off a roof while helping a neighbor install a swamp cooler and broke his back the third time, right jaw and TBI.
   He relied on prescription opioids to perform daily tasks such as mowing a loan, fixing a fence, changing oil in a car. He took his medication as prescribed and had a good relationship with his long time doctor and pharmacy. After states decided to implement the CDC “guidelines” as policies and regulations his medication was decreased to the point where he can barely shower, and they want to taper him even more. he tried almost all the alternatives out there ( Gabapentin, steroid injections, nerve blocks – did more damage, and a lot of nonopioid medication with unnumbered side effects ) without results.

   Our 11 years old has never been camping or skiing – we are living in Colorful Colorado – because her dad can’t stand for longer than 10 minutes.

   we had some quality of life while my husband had access to the dosage that kept him functional – not anymore. I have to work two jobs to keep up with the bills and the household.

   I am not a Chronic Pain Patient but I will be fighting for my husband’s ( and others) right to pain management.

4. Swimming accident hip bone and wire in my neck. Lupus and fibromyalgia neuropathy. Very chronic pain. Can’t imagine how life would be without all my pain medicine

5. I have had RA and Lupus for years now. This started in my early 30’s. I was in so much pain I would just cry and cry and rock. I told my husband I did not want to live like this. The pain meds helped but made me sleepy and I did not want to be sleepy all the time. I was referred to a pain doctor and long story short I now have a synchromed pump implanted that continually gives me a very low dose of morphine intrathecally. I no longer require oral pain meds and can actually function and be a productive person. I pray to God they do not try to regulate internal pumps. I have been going to the same pain dr. For over 25 years yet I now have to provide a urine sample every visit. I have no control over the pump, it is programmed by the office. I take no other pain drugs, it is a waste of time and money. These guys know me well after 25 years. What happened to the physician knowing what is best?

6. I was diagnosed with CML( chronic leukemia) at the age of 30. The cancer and medication caused me daily bone pain, my doctor referred me to pain management since I would require a long term solution. At 31 I found out I had advanced endometriosis, and will require a major surgery. They attempted surgery but were unable to remove an ovary because of the extent of the disease. I went back to pain management to try and manage my daily pain from leukemia and endometriosis. My pain medication was prn. I went to my appointments on time monthly and I was on pain medication. I was being drug tested every month to which I had no problem. The last time I went to my pain appointment, they dismissed me from the practice and explained my drug test came back clean. This makes sense it would be clean as my medication was prn. I saw a different provider each time. After I was dismissed, I started getting bills for the monthly drug tests. The bills were over 9000 dollars per drug test. I was drug tested for over a year and they were billing me 9000 dollars a month. I then discovered the doctor group owns the lab. Since then I have not been successful in finding a new practice as my eyes are open to scams. I reached out to a lawyer who said, the law protects these practices with the current epidemic. 3 different practices I have tried, one refused me due to being discharged, one wanted mris of my back and for me to order a back brace and get shots, and one wanted to do a serious of b12 shots. This has caused me great distres and a bit of a depression. I was taking the lowest dose possible before to get by. I now struggle with pain daily. I am a mother of 2, I work full time, I am a wife, young and a cancer patient. I am so disheartened as to the way the pain management was treated and I was made to feel like a criminal when I am just trying to get by as a functional member of society and raise good humans.

7. I have Rheumatoid Arthritis, and deal with daily pain. I am currently recovering from my 5th hip surgery in 4 years. The past year has been horrible in regards to pain management. My first pain mgmt doctor told me that RA patients should not be in this much pain. I felt like I had to lie to him, to make sure that he would still give me pain medication. He threatened several times to get rid of my pain medication because if I was not controlled on medication, then there is no point in giving me the meds. In the days leading up to my appointment with him I would have nightmares, and would cry during the visits. I was in a horribly dark place at that time. I had just realized my 3rd hip surgery did not work, and no one would perform a replacement because I was too young. I could hardly move without excruciating pain. My life had become a living hell. My husband was always there for me, but he knew I was slipping away from him. I had thought many times of how it would feel to just go to sleep. Take enough pain meds, to go to sleep. Then my childhood best friend committed suicide, and my world changed. The pain and grief are still fresh. I thankfully wised up, and changed doctors, in the hope for better control of my pain. I would love to say that is the end of this story, found a new doctor and I lived happily ever after. However every story needs a good villain or two, enter evil insurance and meddling pharmacist. My new pain mgmt doctor wanted me to switch to methadone for my long acting pain med. Insurance would only cover 22.5mg a day, or 60mg a day. My doctor wanted me in the middle. So I no longer use insurance, and pay for my medication myself. I was told by insurance, that a doctor looked over my chart and made the decision. Now enter the meddling pharmacist, he denied filling my script because I wanted to pay for it myself. He told me it was illegal for him to fill the script. However, He had filled the script in the past, and I had a 4 month history of the dosage and medication at that pharmacy. He went so far as to call my doctor and request that he lower my dosage. Final note to my story, I recently had a hip replacement revision surgery, and was in the hospital for 3 days. During those 3 days I was tortured! My pain never got below an 8, and I spent most of my time crying due to the pain. The hospital would not listen to me, and made me feel like a drug addict. I know my body, telling doctors which medication works best on me, is being my own advocate, not a drug seeker.
   I do EVERYTHING asked of me by my doctors. I follow EVERY rule, guideline, and instruction. I live my life in pain, and I know I will always have pain. I use pain medication so that I am a functioning adult, and not a bed ridden burden. Taking the decision making out of my doctors hands is wrong. My doctor and I talk about all options, and they know everything about me. To the insurance companies, pharmacist, and law makers, I am just a number. I already have an uphill battle with my disease. Please keep that hill soft and grassy, and not rocky, dirty, and full of invisible potholes.

8. Twenty six years ago, I was involved in a hit & run auto accident which caused me to have my first failed back surgery followed by another one a month later & that in turn caused spinal instability & a fusion was necessary 6 months later. I have had back & leg pain since that time. All conservative solutions failed. I have tried all types of pain control including external & implanted devices. I have been going to the same pain management doctor for over 10 years. About 5 years ago, I tried surgery one more time believing the doctor/surgeon when he said he could get me off of all meds & I could walk & run to my hearts content. Instead, I have been bent over, unable to stand up straight, & need a walker to get around.
   Now, due to the current pain med environment, the dosage has been cut & I wake up in excruciating pain & can hardly get out of bed. I lay on the couch all day as time goes by.
   I have followed every rule and restriction (no alcohol). If there is any more decrease in dosage, the only thing left will be wheelchair bound because the pain is so bad.
   I do not get “high” when I take narcotics. I am just able to think about something other than pain. I still have hope. I don’t want this for the remainder of my life. Since I became bent over after hardware was put in my back, I am considering having it removed and then go through physical therapy to retrain my muscles. However, I cannot go through that without pain meds just like I need meds to keep my blood pressure down. To me, there is no difference. I need both to function and live.
   I am 66 and the future does not hold a chance for a better, more active life as long as someone other than my doctor decides what pain meds I am allowed.

   I just reread the criteria for comments. My guess is that most of those involved in this task force do not have chronic pain. The best way I can describe it is like when you hurt your thumb on your dominate hand. Every time you move your hand in any way, you are reminded that you can’t do that, it hurts. You can’t use your hand without moving your thumb. You begin to realize how much you need your thumb. For chronic pain patients, everything we want to do requires that we consider our pain condition. It’s impossible to watch a movie if you can only think of the pain. You quit going places “just to get out of the house” because the pain during and after isn’t worth it. You give up things you used to love doing – such as gardening. Your muscles begin to atrophy but that doesn’t hurt like walking to keep them strong. As long as my doctor could prescribe enough meds to allow me to keep my pain in check while I did what I wanted, I could keep my weight down and good muscle tone. Now, I’m very limited.
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9. I’m 45 and ever since I was a little girl I’ve suffered from chronic bladder infections. Around 2007 and 08 they started getting more intense and the pain was unbearable. My PCP sent me to a new urologist in 09. I was diagnosed with interstitial cystitis/ bladder pain syndrome. There isnt a cure. Over 60 percent of people who have it can’t work full time and have a decreased quality life. The lining that protects my bladder is not all there. That means that my urine is basically touching raw nerves and irritating it. When people ask what it feels like I tell them the easiest way i can explain. It’s like having a bad bladder infection all the time, with burning fire, razor blades cutting it up with alcohol poured on it 24/7. I’ve learned diet modifications and things to avoid to not hinder it as much but there are times when aspirin, tylenol, nor ibuprofen can ease it. Hence why I take opioid medications. I’m not an addict. I depend on those meds on days when I need to do the simple of things. Otherwise there is no quality of life. Suicide rates are high with this condition and its been mentioned in prevention magazine as one of the top 10 most painful conditions. I understand the crisis, I really do but people with legitimate pain issues shouldn’t have to suffer for it point blank period.

10. I’ve been living with Severe Progressive Rheumatoid Arthritis for over 10 years and Im only 44 years old. Been on different medications to help treat the progression with some of the medications causing severe hair loss, flu symptoms, nails don’t grow. To now a new one that is injected into me once a week that cost $5,000 a month. I suffer pain daily. I can barely walk, can’t drive because the pain is so intense. My everyday life is horrible. Doctors say it isn’t good for arthritis patient to receive pain medication because it stops you from feeling the pain. Well no kidding that is what I want BE PAIN FREE— I want to move not lay around on the sofa or bed all day in lots of pain. Im not a drug addict!! I need help with pain management. It isn’t fair.