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.
Trying to Live, Trying to be like before Pain, Where did my Friends go?, “Press On Regardless”, God, it’s so Hard!
My chronic pain began in 1999 from an auto accident of low speed, high inertia impact. The resulting fracture of L5 was missed until another physician reported newer findings. This was in late 2002, with severe lower back and left leg pain which would go numb for several hours. Under went L4-L5 fusion with laminectomy successfully, however after one week the pain in the lower back and left leg returned from a level4-5 pain preop to a level 10+ post. X ray showed that the retaining screws of the vetebral hardware and the laminectomy anchor in the sacrum had been pulled out of the bone. Reoperated upon to remove and replace dislodged appliances resulted in damaged nerves S1, S2, and spinal column.
Returned to work as traveling salesman in 2003, but had to quit in 2005 because pain meds and driving did not mix well for me and nor did going without till the end of days work . Physiatrist then moved to Fen patch by which I had significant relief at the lowest dose. I am also prescribed norco max dose, and 7 other pain related medications. With these I can tolerate pain most days, however I do spend about 20 hours laying flat a day and only get two one hour periods of sleep per day. My S1 radiculopy has affected S2 bladder control nerve causing the Neurogenic Bladder Syndrome. Thus with no innervation of bladder urine sensation, the presence of fluid in the bladder cross innervates the S1 nerve with pain/spasm involving the entire left leg. This occurs about every half hour especially while trying to sleep, though not as severe while upright during the day.
My activity was drasticly affected this year when my PBM company significantly reduced the number of F patches allowed per month no matter what my prescribing physician argued for. Then in June of 2018, I had a bad auto accident resulting in L3/L4 disc protrusion with cord impingement. I have level 9 to 10 constant pain
with which recently received a steroid injection with some success intermittently. Unfortunately, my pharmacy benefits management company has not allowed the return to original Rx level.
I know how lucky I have had caring and willing health care providers. but I know at this rate it can not last unless we start making the needed combined Voice!
I had total knee replacement in 11/2015. In February 2016 had a laminectomy of C3-5. Discovered st that time I had DISH/ Forrestiers disease. Jabe had 4 knee scopes am needing rt knee total replacement. Had spot removed from bladder. And last but not least rotator cuff repair. I was taken off pain meds in 2017. Only receiving them for 6 weeks after surgeries. Yes I am in pain but Lyrics and flexaril which doesn’t touch it.
I have two diseases I live with which cause incredible constant pain – Ulcerative Colitis & Trigeminal Neuralgia (otherwise known as the “suicide disease” because of the pain.) I’m currently being treated with pain medication through a pain management clinic which allows me to have some quality of life. However, if it comes down to me being denied that medication (opioid) I seriously wonder how I will continue to survive.
I’ve told my nightmare story so many times it is exhausting. It seems I have to repeat it again monthly to my pain management doctor too. My back has hurt as far back as I remember, even as a child. I was formally diagnosed with scoliosis when I was 15 years old. I’m now 36. My spine is shaped like an ‘S’ with 70 degree curvatures. In 2015 I was finally able to get in pain management and I also had my spinal fusion surgery that year. I am fused from the top of my thoratic spine all the way down to my pelvis/sacroiliac. I can no longer bend side to side nor reach certain places like to shave my legs. I contacted MRSA (HA-MRSA) during my surgery. After two trips to the emergency room and almost dying they finally tested me and said I was septic and starting to go into septic shock. Three weeks after my spinal fusion I had emergency clean-out surgery for the MRSA. That was followed by 8 weeks of IV antibiotics and home health coming out everyday. I will also be on antibiotics for the rest of my life. The flares from the MRSA superbug infection are the worst pain I’ve ever dealt with in my life! Worse than childbirth, worse than spinal fusion with mo meds for 12 hours because of low blood pressure, worse than a c- section! I can tell the docs don’t believe me when I say its the worse pain ever and a solid 10, but it is! I wish they could feel it for themselves. On top of all of this I’m still having tons of back pain as well as horrible new pains from the surgery and hardware that I didn’t have before. I was still seeing my regular pain management doctor, still on a pretty low dose opiate and Soma, a muscle relaxant that actually works. July 2018 he said he would no longer be prescribing narcotics and all his patients would have to find a new pain management facility. I hate change so this was very stressful for me. I am now at a new place that seems to actually care! I’ve never ever had a doctor that actually cares before. I am still on a relatively low dose opiate even though I should be on something better, but because of the “mme regulations” they cannot prescribe much. I was also taken off my Soma and put on a muscle relaxer that doesn’t work half as well. This is also a new “rule” according to the pharmacy. Walmart refused to fill my opiates because I had previously been on Soma. They looked at it wrong and thought I was still taking it. Therefore I had to go to a different pharmacy even though in my pain contract I’m not supposed to. Every time I try to fill my prescription at Walmart for the last 3-4 months they do not have it in stock. This is just regular Percocet… they should have it available. I have to physically go around to all these pharmacies while in pain to check because of course they won’t tell you over the phone if they have it or not. It is a nightmare being in pain and nobody chooses this life!!! The opiate manufacturing shortage needs to stop (which comes down to our government putting a limit on manufacturing), the pharmacy and hospital shortage needs to stop, the MME limit needs to stop. It is utterly ridiculous for the limits to be so low for those of us in excruciating chronic daily pain. This is not just every day; it is every minute of our lives awake asleep it doesn’t matter. It’s chronic pain. Never ending. It drives a person to insanity when you can not control your pain. I cannot hold a conversation when I’m in excruciating pain. I cannot help my child with homework, do dishes, do laundry, shower, clean house. All of that comes to a halt and you just stop doing it because it is going to make your pain worse. God bless the doctors that truly care and understand. There are very few of them out there. In 20 years I finally came across ONE! That is sad. It shouldn’t be like that.
I had a pretty hard fall and fell off of a ladder. I went to the Dr and the doctor told me because of a previous operation I had a month prior and was given a small prescription he could not prescribe me anything for pain.. I have been in agonizing pain from an injury from the fall that will take 6 weeks to heal. I don’t care for the pain medication but in this case I really needed it and pleaded with the doctor. I have missed work for the past week. I just want to have some kind of voice and input because I there are people that really need it and we suffer due to the abusers.
I’m at my limit. My doctor won’t prescribe any more narcotics and what I’m taking doesn’t cut it any more. I can’t imagine living like this. This is not living. If it wasn’t for my grandson I wouldn’t be here. I’m so very grateful that I see him. He is so kind to me and understands that I can’t play with him. He will crawl in bed with me and we read together and play games. Don’t worry about me I’m not ready to go, but I fear my future.
Life becomes progressively unpleasant as my pain medication is reduced against my doctor’s wishes. It is clear that my health is declining and I will face an early death unless I receive proper medication. My blood pressure is rising along with increasing ill health and more severe depression. Th pain in my legs often prevents standing or walking.
I’m going to be 60 years very soon. I have a lot of discs in my back that are completely crushed down to nothing, or herniated-bulging so bad that I can’t even walk far at all. I also have hip pain so bad that I haven’t even found out why yet, but also inhibit my walking, and both of my knees are bone grinding bone and so painful that from all these things I wake up crying from a deep sleep, and most mornings I need help getting out of bed. I am allotted 4 hours a day for an aide to come in 7 days a week to do cooking and cleaning and my hygiene needs for me. I have to use a motorized chair to go anywhere. If they take my pain medication away from me, I wouldn’t be able to take the pain. Hence no reason to go on.
I was born with undiagnosed/undetected birth defec. I was in first grade when my hearing loss was first detected. When I was eleven I became self aware that something was different about my abilities in regards to my back and legs. I also had series of dizziness and headaches. When I was 16, I was hit by a car and thrown about 10 ft in the air and landed straight back onto my feet after slamming into the pavement on my hands. I went untreated.
When I was 21 I started my life long care of chiropractor appointments, physical therapy and design my own exercise program. After seeing a orthopedic surgeon I was told that I had some weird birth defects and was sent home with steriods. For the next ten/fifteen years with periodic injuries I went on with my life. When I became stricken with what appears to be fibromyalgia. With medicine, proper diet and exercise I overcame my symptoms twice. In my thirties I still lead an active lifestyle in spite of my pain and being turned away by multitudes of doctors, being told periodically that I was a hypochondriac. Took ten years to find two doctors who would listen to me. Thank God cause After carrying my son I started losing use of my arms and since i was already on a high dose of ibp my doctor started me on Vicodin. Which I was on until I had back surgery in 2014.
I went in for a simple disctomy and came out unable to walk. The birth defect in my spine was my nerve was attached to my disc. After hours of man handling my nerve it ended up damaged. Here is the ticker…even though I was a thousand times worse I was put on less medication. Still with a 84 year old mom and a child to care for I was determined to walk again and find my new normal.
During this time I have tried more of the non opioid pain management. I have been subjected to injections and because my two wonderful doctors have retired, and due to the herion trade, I am fighting to be heard again. In oct of 2017 the pain management took away a dose of pain meds. Actually they took away all the patients a dose of medication. Just that lost of one dose has drastically changed my abilities to care for my self, my son and mother. Two of my doctors have repeatedly appolized for having to cut me of my meds because their boss told them to due to a DEA visit. They have both left the practice. In fact the office has completely closed down. I can not find a decent primary care physician that will treat the whole body. It’s a known fact that you need an increase of opioid medicine for it to continue to be effectives. It is what works for me and if I continue to spiral downward instead of maintaining my now new normal…who knows what I am capable of doing.
Please we must stop the blame on the doctors and chronic patients. Look at the real statistics.
I have responsibly been taking muscle relaxers, opiates, and Ativan, for many years, with the same primary physician for 14 yrs, and several other specialist’ s thru out the yrs.
I have tried all options available, many different medications, and after so many years of trial and error, and suffering horrible daily pain, I am finally taking the best meds & dosages to take the edge off enough to bear it. I’m in a wheelchair, disabled, and can’t travel or do much. But it’s the best we can do. If my medication is taken away, it would be intolerable mentally and physically. A person can only live with so much pain 24/7 before they feel the need to stop it, at any cost.
Then I will be a wrongfully reported statistic. Chronic disease and pain patients are NOT ADDICTS abusing medicine. We are NOT taking or craving heroin, etc. There is a difference between wanting pain to stop, and wanting to get high.
To pass these new guidelines is a death sentence for chronic pain sufferers, and it will effect the country by patients becoming a terrible burden for the government, healthcare system, insurance companies, and even national debt.
Who will be paying for all this added expense?
Why has the suicide rate increased so much since last year and next year expectid to increase more?