Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. I suffer from 2 broken vertebrae, and a herniated disc. I also need both hips replaced and have severe osteoperosis. Last April I got a shot in my shoulder for bursitis, and the doc hit my tendon. Now my left arm is almost useless.
   I am one big throbbing ball of pain. And none of the doctors here will give pain meds. Tylenol doesn’t even begin to touch it. I’m so depressed, and can get no relief. Sometimes I feel suicidal, but I go to counseling and so far have been able to rise above it. My question to doctors would be how much of this can you stand? It’s like having a throbbing tooth ache all the time. They could never do it. Women are so strong. I’m only 66 and feel like I could have some quality of life if I could move.

2. 20 years ago, I fell backward 15 feet onto asphalt. My neck was fractured, had a traumatic brain injury and a compression fracture in the thoracic area, lumbar fracture, both my feet had bones on the top fractured. I now also have osteoarthritis, spinal stenosis, fibromyalgia, bulging discs, etc. Before this fall, I had been treated for severe depression. Chronic pain and depression are a deadly combination. The only hope I have is to have the pain treated enough so I can function. Living in pain this much now that my meds have been tapered is very hard. I just want to function for what life I have left. Is that too much to ask?

3. I’m a 62yo Registered Nurse who is now on disability. My specialty was ER-TRAUMA. I said years ago this would happen some day to legit pts. All the addicts we saved. Believe me they were NOT happy! I ruined their high! Ha almost dead. I am a chronic pain patient & I live alone. I may not need my pain med for 2 months sometimes. Then I may be in agony for a week. I take them as directed. I have to as I at least get around my apartment. Pain lessens, I stop taking them. I have lived with a pain score from 4-5-6 for YEARS!! I can’t remember what it’s like to be pain free anymore so this is my ‘normal’. I don’t take my pain med for this. Only when it’s intolerable 8-10. You couldn’t live with my pain level!!! You’d be begging for medication!! Don’t think you’re special & you wouldn’t!!
   There are those of us who take personal responsibility seriously!! When you have chronic Pain you don’t experience euphoria!! You’re lucky if it takes the edge off!! Only addicts experience euphoria!
   We need our medication to function as human beings. Don’t we deserve that right???
   We are collateral damage & the government should NOT be interfering in MY Dr patient relationship!!!!!
   Patients with broken limbs can’t get the Dr to write prescription as they’re afraid of repercussions!! Let me break your leg like I have. You’d be begging & carrying on like a baby! It’s the law you want to make permanent. It will effect you or someone you love!
   I know there are bad Drs, I’ve worked & had to over ride at times.
   You people want to go after all physicians!! Go after the bad ones!! Don’t lump them all in the same category which is now the norm!!

4. When I was 14 I found out I had tethered spinal cord syndrome and had my first back surgery. At 15 I fractured my back at L5 while cheerleading. I had to have surgery (my second back surgery) at age 16 to have bone removed from my hip and placed I my back. I wore a bone growth stimulator for three years because I had to have a third surgery when my second surgery didn’t take. At age 18 I had my fourth back surgery to remove bone spurs that had overgrown causing me significant pain.

   I am now a 25 year old female who is trying to live with chronic back pain. I’m have fibromyalgia, early degenerative disc disease, spinal stenosis, a herniated disc, and constant back spasms. I currently live in a city in Kentucky where the opioid epidemic is out of control. I get scolded by the pharmacists every time I go to pick up my pain medicine even though it’s prescibed by a pain management doctor. They don’t know my story and they don’t care. They just see me as a junky and think I’m addicted to pain pills even though I’ve been taking them for ten years and have never once abused them. I started crying when I saw this movement existed, it’s just so nice to know I’m not alone.

5. I have RSD/CRPS I hurt every day all day please help me keep my mefs

6. My pain journey started at the age of 45 with extreme pain in my hips one night while in bed. I talked to my gynecologist about it since I was basically healthy and really only went to him. He put me on antidepressants and said it was my age and my job. One evening the pain in my hips was so extreme I went to the ER. They did X-rays and said nothing was wrong and made me feel as I just wanted pain medication. I really just wanted answers.
   I noticed the pain started to travel to different joints. It came and went so for a year I just lived with it.
   Then I moved to Tampa. I was starting to have more pain more migraines and was exhausted all the time. I finally found a doctor and the first visit I broke down in his office. He said he wasn’t sure what was going on but he was going to find out. The first blood tests he ordered showed my thyroid hormone was low. He sent me to an endocrinologist. After an ultrasound on my thyroid and more blood tests I was diagnosed with Hashimotos and 5 nodules. A biopsy showed noncanserous, thank goodness. But my ANA was also high and after being on thyroid medication for a few weeks my symptoms were not getting better and the pain was increasing. I was also experiencing my left hand going numb now. My doctor sent me to a rheumatologist and an orthopedic doctor. After several more tests and an MRI of my neck, I was diagnosed with SLE (Lupus), APS, and my spinal column was being pinched from a degenerative disk. I had surgery a week later with a C5-C6 fusion. Also started treatment for Lupus and APS.
   Next my knees. The same orthopedic doctor ordered MRI’s of both. I was then diagnosed with chondromalacia patella in both. I’ve since had one failed micro-fracture surgery on one. Now they are both bone on bone. Waiting to find out what is next treatment for them.
   I also have bulging disks and pinched nerves in both my cervical and lower lumbar spine.
   I have tried physical therapy, I’ve had more injections than I can remember. I’ve had surgeries. I’ve gone through having my knee drained when it was so swollen I couldn’t move it. I’m am diagnosed with anxiety/depression disorder on top of it all. But who wouldn’t be I suppose.
   My life was literally torn apart. I isolate. I have almost no enjoyment or interest in the things I use to love.
   For the years in Tampa I was treated with dignity and compassion from all of my doctors. My disease, disorders and illnesses were treated and so was my pain. I went on disability. My husband then decided we were moving back home to the panhandle of Florida were my daughters and granddaughters were for help or at least to be near them for my happiness. But my new doctors would not refill my pain medication I had been on for years after it ran out. And now my primary is tapering me off my anxiety medication. I am back to having zero quality of life. The pain is real. I have the records and images to prove it. I was approved for disability on my first filing without ever being made to see their doctors etc. They said my Tampa doctors kept very good notes and I didn’t have to. It was all there in my records and images. For that at least I’m thankful. It helps financially for all the doctors and hospitals and bloodwork and MRI’s.
   My life is my family. Without them I wouldn’t want to be here anymore. Nobody should have to live this way. I’m not an addict. I’m a patient. I took my legally prescribed pain medication as prescribed for years. Now nothing….
   Thank you for letting me get this out. It’s been a lot to go through. I am 52 now and feel my life should be worth something more than this.

7. 15 years of chronic pain from degenerating discs. I was on perm. disability for majority of those years, but with the help of my internal medicine doctor and her reassurance that pain medication would be available I was able to return to work. She helped guide me to a more functioning life using pool therapy, physical therapy, cognitive behavioral therapy, etc.. End of last year the bomb was dropped and I must cut my pain medication therapy by 50%. The worst part is they have taken me off long term pain medication. I recently was written up at work for missing days and not being as productive. Kaiser is requiring all pain patients to fit in the same box, no matter what…I wonder if I can get back on disability…ha, ha good luck.

8. Before my life changed I had been at my job for 15 years. I enjoyed life, working music festivals with friends, camping, hiking, potlucks and crafting parties. I was social and outgoing. I had a dream of finishing school and becoming a hospice RN.

   Then in January 2016 I started feeling really bad. Like I had the flu all the time. I went to the Dr every month and he had me do labs. My white count was creeping higher and higher. Then in June I went into SVT for 15 hours. By October I had lost 40lbs, had zero appetite, debilitating gut pain, food and water were being regurgitated, I had developed SVT and AFIB, was running low grade fevers and my white count was high.

   My Dr retired, and I got in with a brilliant Dr who was not accepting new patients, but saw my situation, and became my saving grace. I had already been seen by the oncologist (high white count), GI Dr, and due to being 8 hours from any big city or the cool technologies they have in them, was undiagnosed.

   This new Dr sent me to Stanford GI and Neurologist. The GI specialist diagnosed me with Type 2 sphincter of ODDI dysfunction, gastroparesis, and achalasia. The neurologist diagnosed me with a autonomic dysfunction that makes it so I can no longer perspire, is the cause of my arrythmias, my gastroparesis and my ODDI dysfunction.

   When I got back home my Dr tested my blood and sure enough It showed that I had a mycoplasma infection, the one my neurologist suspected went to my brain wreaking havock on my autonomic system.

   I can handle the 4/10 pain from any food ingested from the gastroparesis. What was making it so I could not work was the constant spasming of my sphincter of ODDI.

   I had my 1st attempt at a ERCP with sphincterotomy at UCSF in Oct of 2017. The Dr could not get very far and I ended up staying in hospital for 7 days due to getting pancreatitis, which is a side affect of the ERCP.

   The Dr tried again in Jan of 2018, but again could not fix due to what he called “complicated anatomy” and had a pain specialist come to my bedside to talk options with me.

   They convinced me that I would have great success with a double lumbar spinal block. Well, that was a nightmare. It was so painful, they hit nerves on both sides and even thought they punctured my lung.

   Today I still have horrible ODDI pain and I get pancreatitis flair up’s all the time. I will be living with this the rest of my life.

   I went back to work in July of 2018 after being off a year to deal with all this. My Dr told me people in my situation go out on Dissability, but I felt like that was giving up. I have missed so much work since being back I am a sick call away from being fired.

   My pain meds make it so I can function or not end up in the hospital. They make it so I can get out of bed and sew, or work, though that is coming to a end soon.

   My Dr told me about this Dont Punish the Pain movement, and gave me a flyer. She has them in her office.

   I just lost my primary insurance and needed to go to a new pharmacy because of it today. They would not fill my pain meds today. They didn’t even care to speak to my Dr. CVS thinks I am a drug “seeker.”

   I would rather kill myself than go to the streets for pain relief. It’s miserable living in this body, and the 4 pills I take daily make it so I can at least have hope. If my Dr could no longer Rx or the pharmacy’s cut me off, I would eventually kill myself.

9. I been on pain meds sence I was 16 after a spine surgery .I now am 37 been titrated off 7o% of my mobility enhancing pain meds my MME going from over 2oo to lower then 5o.I have been under Dr care for 21years had 4 spine operations have 9 levels of my spine screwed together with broken metal rod! Need 2 more procedures at least but I’m to heavy to have the operations and to immobile by pain to loose the wait to qualify .

10. My pain is probably much less severe than others who live with excruciating levels. Still, both hands are arthritic and without the medication I was prescribed, I would be non-functional at many of the tasks most people take for granted. The particular medication seems to be custom-made for a patient like me. It is effective, it allows me to use my hands for almost anything I desire to do (which, in turn, wards off the progression), it has no noticeable side effects, my head is clear, and I have not had to increase the dosage in six years. Nothing else is quite as effective. I am 70 years old and have accepted my physical addiction, am more than willing to stay medicated for the rest of my days, and perfectly willing to sign a waiver saying as much. Yay!