Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. I had a head injury 25 years ago. Since then I have chronic daily migraines. I’ve been to neurologists, migraine clinics with no success. 23 years ago I found a pain management doctor and my life became better. It took 10 years to find the right medications. Now I see her every 3 months, have not had to increase medication and in fact lowered it somewhat. Random drug tests are part of her clinics requirement. But I don’t fit the 5 days of opioid schedule insurers now have in place. I can’t use my insurance as I need a 30 day supply, so I scramble looking for lowest cost at area pharmacies. I am lucky that I have a 23 year consistent treatment by a trained pain management doctor. This makes it easier when I do need a different drug for a weeklong extended pain episode.

2. My main diagnoses are Sjogrens and mixed connective tissue disorder. But I also have chronic sinusitis due to damage caused be 5 sinus surgeries, Barrett’s esophagus, Raynaud’s, degenerative joints, and tachycardia. Prior to getting SSA disability in 2013, I was an attorney and adjunct college professor. Due to scleroderma gut, I am unable to take NSAIDs and other anti-inflammatory drugs. I have to do a weekly injection of methotrexate at home to control the autoimmune diseases. However, the methotrexate lowers immune response which flares the fairly resistant staph that lives in my facial caverns. As I result I have to go on and off the medications that help control the autoimmune damage to my body. Rheumatologist prescribed opioid, along with two different muscle relaxers (daytime, bedtime difference), after my second hip surgery (to remove 25% of femoral head due to degeneration) in 2011. Prior to that, we had tried physical therapy, injections, etc., but none of these options worked in making the pain more manageable. In 2014, the rheumatology practice decided they wanted PCPs to prescribe these medications. Thankfully my PCP has been my PCP since 1996 and well-versed in my health saga. I have not had any change in dose or frequency in either opioid or relaxers since 2011, but I have a high pain tolerance and the meds just take the edge off the pain. If I miss a dose, the pain becomes quite problematic and I ‘pay for it’ over the next couple of days. When I moved across state lines for my husband’s job, I tried to get a doctor in my new home state to prescribe my pain & relaxer medications but they would not. Once a month I fly back to visit my PCP, who has no issues prescribing my medications, but I do worry about when he will retire. Thankfully, my husband makes enough that I can afford to fly, but many aren’t as lucky as I am. Since I live in a state that has legalized marijuana, I have had my dentists and other health workers try to convince me to take marijuana instead of opioid medication. In reality, I am allergic to marijuana, along with numerous other plants, weeds, and grasses; additionally, I like being ‘clear in the head’ and hate the feeling of being ‘drugged’, even with alcohol. I am one of those lucky chronic painers that can get relief on the same dose 8 years in, have the resources to see my doctor in another state, and wonderful insurance that has not hassled me about my medications. I still cannot work, which I hate, but at least I am not in agonizing pain all day. With all the advances in medicine, I am surprised that anyone thinks that one size fits all is applicable to all patients. Studies have proven that an individual’s unique chemistry and brain neurons/receptors/synapses processes can interfere with medication so that the desired outcome (decreased pain) cannot be achieved. Chronic painers do have a responsibility to keep our pills out of our kids/family members’ hands, but we are not the problem; opioids didn’t cause our diseases or pain, simple biology or accidents did.

3. Hello, my story starts in 2009 when I started having horrible pains behind my knees that eventually completely took me off my feet. After seeing a sports Doctor as I WAS quite active he thought given the size of lumps behind my knees they were either Baker Cysts or tumors. Finally after my legs completely locked up and paramedics had to come get me, I was taken to Stanford University where they found I had 9+cm bilateral popliteal artery aneurysms that were HUGE. At 32 I had my first two bypass surgeries on my legs to repair aneurysms and spent an entire year afterwards learning to walk again. Then in 2013 I needed my third bypass as another aneurysm formed behind my left knee. Since the beginning with all the nerve damage these surgeries caused I’ve been seeing a Pain Mgmt Doctor. Then after 9 years of being treated with Pain Medicine all the sudden I was a “seeker” or “suspect patient” as they call anyone now who comes to ER in pain and doesn’t have the right “look” or whatever discriminatory standards ER doctors use now. Now I take 9-12 Aspirins a day due to Ibuprofen allergy and polycystic liver and kidney disease that precludes me from taking Tylenol or Acetaminophen of any kind. Of course too this just equates now to being a “seeker” in 99% of hospitals in the country I’ve been too. This opioid crisis goes both ways. When you can order a kilo of Fentanyl from China easier than getting screwed over by our medical establishment what did Doctors honestly think would happen? They are the gate keepers on legal scripts and to pull the rug out from honest patients with severe medical issues is only going to lead to more unnecessary deaths. I’m so glad I’m not the only one.

4. I have been on pain meds for many years. I am a Disabled American Veteran. I have had numerous knee surgeries a major back injury requiring surgery. O also have shoulder pain due to having over 800 pounds falling and hitting my right shoulder. I suffer from Arthritis and normal aches and pains from 20 years of service in the USAF. Since being weaned off of my prescribed meds my quality of life is terrible. They cut my meds to 1/5 of the dose that works. I was on that dose for maybe 10 years. They only have 3 months to wean me to the acceptable DEA standards. It was a total nightmare.

5. I have exploded discs. I am in severe pain. I need help. My help has been cut in half. This is ridiculous when I have 4 MRIs in the past year proving my pain.

6. I developed osteoarthritis in my late 30’s. By the time I was in my 40’s, i had to get regular cortizone injections, increasing my adult onset diabetes risks. In my early 50’s, i had severe joint pain in hips, back, knees ankles shoulders and feet. I also herniated discs in my lower back. I was in constant agony and reverted to an electruc cart to stay mobile. Then the opioid laws began to pass. It became increasingly difficult to obtain pain medications. I underwent knee replacements which cut out half my pain, but my back issues worsened
   I had always taken my meds according to the prescription, i did not abuse them and i guarded them zealously. My doctors stopped prescribing opioids, i went to pain clinics, where i got good results, but they closed down the clinics.
   I cannot stand or walk long distances now, so i am back to using my elecrtic cart. I am bent over from the pain in my lower back. I cannot work and i have to rely on family for most things. I have been refused disability.
   Osteoarthritis and spinal stenosis / herniated discs are a slow death from pain.
   Politicians are idiots. I only hope all the morons who passed these laws get arthritis and back issues so they can suffer too.

7. When I was 25, I fell off some staging 2storries onto a concrete floor. This screwed up my lower spine and has had a couple surgeries to help correct the pain. I am 62 now. Through the years I have had my pain meds slowly increase . My chronic pain has slowly gotten worse. Now it is to the point where it has taken over my life. I hide the pain best I can from everybody. I know it’s almost impossible to exsplane cronic pain to people who havent experienced it, so I hide it. I am good at comming up with storries of where I have disapeared for a couple days. This to everybody. Truth is I may have tried to mow my lawn. This ment a pain level that put me in bed for two days having extreme pain that climbs right over my pain meds. This is my life now. Limiting my activity so I can at least walk and try to enjoy life. It’s getting worse and I am running out of excuses to my friends. Soon there will be just a bed with me in it. The pain level will be beyond any opioid treatment. Constant. Crushing. Debilitating. And still, I will have to hide. Its impossible to exsplane.

8. I’m 36. I’ve had 2 cervical spine fusions, and am about to have one on my lumbar spine, as well as cyclic vomiting syndrome, fibromyalgia, degenerative disc disease, osteoarthritis and scoliosis. Despite these diagnoses, neither my pain management doctor or my primary care provider aren’t allowed to prescribe opioids for ANY chronic pain patients. Instead, when the physical therapy, and the stretching, and heat, and ice and other medications don’t work, I’m told to keep doing what I’m doing. I’ve never abused my medication but I’m labeled a drug seeker by the emergency department, because they also aren’t allowed to give chronic pain patients pain medication. There’s no where else to turn.

9. Hello, my name is Bob Whitmore and I am a Chronic Pain suffer after working 26 years in the Automotive Collision industry. I have now tallied my thirteenth operation last Dec. and I hope for no more of these debilitating surgeries that have not made the quality of my life improve but however they have rendered me disabled. So when the “crisis” began back in 2016, it was a pendulum swing away from human dignity and treating the most vulnerable to a systemic cult of D.E.A. prowess in making another demographic miserable, they have in deed succeeded to their shame. I hope for a return to decency among the Health Care Providers and all who my have influenced them in this act of this treachery. There have been no problem’s solved by these actions.

10. Hi, I’m a Disabled, Chronic Pain Mother, Wife, Daughter, Friend.. I was in a catastrophic accident in 2010 that shattered my neck, spine, tore my siatica, & broke other bones.. My neck had to be rebuilt with cadaver bones, metal rods, & a metal bell that was screwed to my shoulders to hold my head on.. My spine was fused in 6 places, nothing could be done for my siatica, nerve damage, ect.. My nightmare seems to have started earlier than most, I was forced into Pain Mgmt. In 2014.. These are just Shot Shacks, $$$ making ops. that don’t care at all about chronic pain patients. . I was threatened by Drs to sign pain contract, to endure excruciating NOT FDA APPROVED INJECTIONS & NERVE SCRAPING.. I was treated like a prisoner, a felon with $$ .. I was drug tested, pill counted, lectured, & yelled at every month.. I NEVER had a bad drug test, I’m a 48 yr. old Professional being treated like a bad kid.. From 2014-2017 I endured all this & was still being tapered, & medicine that had worked so well to help me learn to walk again, be a part of my family again were being denied by my Dr.. The last straw was when they said I must get the pain pump & they were scheduling another nerve scraping.. My husband had started going with me to the butcher (dr) because I would come home sobbing, abused, brused, unable to even bathe myself.. Hubby almost lost it, he said “SHE IS NOT A GUINEA PIG, YOU HAVE DONE ENOUGH DAMAGE!” Thank god I never went back..
    My migraines are 20 days a month, & I can barely move my head. . As a mom of teenage boys, it’s humbling & brings tears to my eyes saying this, that my kids have to care for me, cook, shop, errands, clean, EVERYTHING. . That butcher got $30,000 out of me, all I got was more SCARS, a cancerous Thyroid that was just removed for Christmas (they think it’s from the injections) I have nightmares, I am bedridden, scared, untrusting of any Drs. Pain is always a consistent in my life, 24/7