Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. Having a genetic pain syndrome, going through reconstructive surgeries on 9 different orthopedic needs, being hit by a drunk driver who thought he might amputate my foot and move my brain around, i am unmanaged.
   My pain is literally something that makes me, not want to kill myself, but die.

   I have a look, one that many profile as a user, abuser, druggie.

   I am so ultra conservative, but also quiet, i don’t often speak up for myself.

   My own doctor who has prescribed pain meds for years(!), balks and challenges me on addiction- this doctor sees i do not ask for meds often, early, demand uptick in strength… but she asks/accuses me over, and over again.

   I have coping skills for pain, i don’t have any coping skills for the ‘seeker interrogation’. I will go into the ER and not ask for pain meds just because i do not want to deal with the ridiculousness. I have gone in with a cluster headache, nicknamed “suicide headaches” for good reason, and i explain what is happening to the best of my ability, request pain meds before all the questions and been given something i have sitting at home; this medicine i have at home is not for immediate relief, severe pain, it is for a migraine. Had i wanted headache medicine, i never would have subjected myself to moving through the world, dealing with medical people, bright lights and lots of action!

   Treat my pain, take my blood, test my urine (i will give up my privacy rights if you will treat me!) because i do not care to explain myself every single interaction, especially because i have never abused any substance, let alone something intended to give me some quality of life!

   I hurt too much to do ‘this’!

2. I had lumbar surgery in February of 2014 then I had cervical surgery in August of 2014 and it has left me with extsive nerve damage and everyday I’m in pain I can’t sleep at night because of my neck. I can’t get any relief from the pain it’s non stop the so called pain management doctor I see has only made my pain worse with all the shots he’s done because I’m at the max of what a patient is allowed to take medicine wise. Well who ever made up these stupid rules to not let the doctors care for us should have to go a mile in our shoes. I just wanna be treated like a human being.

3. In 1995, I herniated 2 discs which sent seering pain down both legs. After steroids and rest for 3 weeks, I was sent into nuerosurgery and I was so hopeful. That hope was let down when 3 weeks later, the pain was back. After visiting the Mayo clinic, an abdominal histerectomy was determined to be the treatment that would stop the seering pain. After that surgery, it was back again. My entire family then moved up to Ct., so I could see the head of spine surgery at Yale Hospital; he was a renowned Dr. in the field of spine surgery. I went through the best PT and after that a simple Xray was taken, while I was bending forward, and it was determined that I had a vertebrae slipping out and unstable. He did surgery on a re-herniation, which only happens to 2% of herniations. Finally, after years of pain management treatments like the TENS unit, injections and even an implanted pain pump; my Dr. decided that I had resulting nerve damage which sends pain signals constantly down my legs. With all the medical options exhausted, the only humane treatment is pain medicine. (I refuse to call it opioids-its humiliating) Without my medicine all I do is pace around the house in excruciating pain. Laying in bed, sitting in a chair and pacing around becomes even more unbearable after 15 minutes, so I have to keep switching around. What kind of a life is that? Even though I am blessed with a wonderful Dr, I know he will be forced to taper down my medicine soon and the anxiety of not knowing if I will get my medicine filled or not is causing my pain to escalate. The pharmacists have the power to reject your prescription for any reason and they don’t have to share the reason with you. It could be that they really are out of stock due to the deliberate cuts from the CDC but I have to way of knowing. They seem to have more power than the Dr. This should not be going on in the US…or any other place for that matter. I don’t want the government in my medical matters anymore. We need to start trusting and respecting pain Drs again and stop punishing patients like they’re criminals.

4. I was diagnosed nearly two years ago with Small Fiber Neuropathy. It has accelerated so quickly throughout my entire body, feet, legs, back, arms and hands. I had a spinal cord stimulat placed permanently in January of this year, with very little relief. The pain as I describe it, my feet feel like the are on fire, walking on glass and for good measure I get electrical shocks going thru them. My legs have the same burning pain, feel like they weigh 1,000 pounds and my shins have started with a constant and relentless burning. My back is bad I can barely walk. My arms hurt and my hands are sore to move and extremely sensitive to temperature changes. Just washing them can be so painful. And let’s not forget about the fatigue, constant fatigue from not sleeping. Or sleeping short periods at a time, some nights awake all night. Recently came the diagnosis that it is now affecting my bladder and kidneys. Ultimately I will need to catheratize myself daily to void my bladder. I was out of work for 11 months but recently have tried to return part time, which has been extremely difficult.

   My goal has, and always is, been to work. I have maxed out on two prominent medications and have run thru the list of others associated with SFN. I am now climbing the ladder of opioids trying to get at least some relief and be productive. The amount of stress this has caused to me and more importantly my family is at times insurmountable. I explain my pain this way: 1/2 my days I am in the worst pain I have ever been in, the other half the 2nd worst. My pain doctor tells me of a change in 2019 limiting ALL opioid patients to certain amount per day, which will cut me in half, as of now. I don’t abuse, sell or give my meds to anyone, I don’t abuse the system. I need them to be productive and without I am another statistic on disability.

5. I am a twenty-six year migraine patient (my first migraine was at the age of twenty-two), the last ten of those years I have been in pain chronically and almost daily. I also have severe celiac and thyroid disease. I have tried 70+ treatments including all of the non-scientifically proven alternatives that the CDC recommends in their guidelines. I have lost two jobs due to pain. I became even more disabled when injectable opioids were removed from my treatment plan due to nothing but changes in federal regulation. (Ironically, I have been denied disability insurance three times, so while the government’s regulations have made me more disabled, they won’t help me when I cannot work). My relationships with doctors have been seriously damaged due to opioid fever. I no longer set foot in an ER, which used to be a place of final resort, but also a place where I would finally experience relief. I have actually been made worse in the ER after submitting to non-opioid treatments that I knew I was allergic to or had serious reactions to. I submitted in the name of gaining trust with the ER doctors, but in the end, they still wouldn’t give me opioids. I have heard stories directly from excellent doctors that they are closing their pain clinics due to government harassment. These doctors are the creme de la creme – for the pain community to lose them, it is truly a tragedy and an unnecessary one created exclusively by the government. Pain is still vastly under-treated whether you are talking about opioids or not, and if we are looking to move away from opioids for pain treatment, having hundreds of pain clinics close down in this country is moving in the opposite direction. I live in constant fear that Kaiser Permanente, my doctors and/or the government will remove my access to opioids. I also feel completely under attack by society, the media, the government, and the medical profession. I am an advocate, going to Washington once a year to advocate for an increase in NIH funding for research. I take vacation time and pay my own way to attend this event (and it’s not cheap coming from California). I believe that part of the answer to this problem is to develop scientifically proven pain treatments that work BETTER than what we have now. At that time, we can make opioids obsolete. Until then, they need to remain on the table. A last resort, but an option. Ten years ago there were indications that increased focus on pain treatment was making some headway. Now we’ve taken two huge steps backwards. The bottom line for me is that I live in constant fear that one day my opioids will be taken away from me due to no fault of mine and with no recourse. I have tried to find a lawyer and have never even received a returned phone call. If I lose my access to opioids, I believe I will lose my job (the bit of work I have left), lose my house, lose my health insurance (which also means I won’t be able to find a new doctor to prescribe my opioids), and then become homeless. This isn’t a stretch, and I think about it often. Pain has ruined my life, the government has made what was left of my life an anxiety-filled nightmare. It is obvious that there is an inverse relationship between opioid prescribing and ODs – prescribing is at a fifteen year low, and ODs are at an all-time high. The CDC should immediately withdraw its guidelines for a complete revision, since their goal of saving lives has failed miserably.

6. My issues are numerous; chronic hetrotrophic ossicificationb(bone growing from femur thru my glutes & has made it 1/2 way thru, no surgery due to damaged muscles), lumbar disc bludges, cervical disc bludges, b/l carpal tunnel, nonunited fractured sacrum & coccyx, damaged pubic bone (causing vaginal atrophy) severe depression, anxiety, ocd & insomnia, diabetic, chronic metabolic syndrome, damaged nerves in leg, titanium in ankle, gatrointestinalthritis throughout body & damage being caused to other parts of body(muscles weakness/spasms) from limping/pressure & I feel guilty & ungrateful for praying for death but but feel like a burden to family & 1 friend I have left. Been told I’ll never be without pain no matter what meds are given to me & I’ve had extensive physical therapy. Life as s hell, I’m tried of “looking normal” & the world has given up on me & I’m passed around from specialist to specialist telling the same medical history over & over & to top it off, I’m allergic to ibuprofen & nsaids upset my ulcers. My allergy lst is huge including the sun, chocolate, chlorine, bees, flowers, perfumes, lotions, & a crap load of meds. All because of domestic abuse car accident &I over used my body trying to prove everyone wrong when they said I’d never walk again. Every job I’ve left, it’s taken 3 people to replace me or they’ve called to get me back but my body finally gave out & it’s hard to move daily & my mind is crap compared to what it used to be. Who can I turn to for help when people abusing the system have wrecked it for me. Taking the lowest dosage of opioid without relief but scared to ask for anything more but dread waking up every day & barely surviving hoping my husband isn’t the next person to abandon me, so I fake smile until he leaves & cry most of day from pain & missing my identity, my feeling of worth.

7. I am a Florida senior citizen with severe chronic pain every day, even after having years of cortisone injections, acupuncture, physical therapy, surgery and most other non-pill options.

   Florida Governor Scott, with the help of DEA, has brow beat our doctors into submission. The legal maximum allowed of Hydrocodone is 5 mg, 3 times per day, no matter what level of intractable pain you have, unless you have cancer. Some large pharmacy chains here won’t even stock hydrocodone because they don’t want Scott and the DEA on their backs.

   We are required to visit a pain specialist doctor every month for no more than 5 mg. Hydrocodone at a quantity of 90 pills ( 3 per day), non-refillable. I watch each month as elderly, crippled and very ill patients drag themselves into the doctor’s office, some by wheel chair, usually with a care giver, each month. My heart aches for them. My husband has to take me because I can no longer turn my neck or use my feet to drive safely but I can manage to get around slowly with a walker for a few minutes at a time.

   Providing your MRIs, CT scans, xrays, etc. are of course required. Plus we are required to sign a contract and be on a “look-out” list for DEA, pharmacies and doctors to spy on us and to prevent doctor shopping. So much for HIPPA.

   Since Governor Scott came into office he has lowered the allowable prescribed hydrocodone from 10 mg. 4 x day, down to 5 mg. 4 x day to now 5 mg. 3 x day. I cried when my pain doctor announced this latest cut because I knew this would finally make me bedridden. He chastised me for crying and told me I should be glad I get any pain meds at all! We are treated like criminal cattle. So now I’m in constant pain and bedridden, just as I feared.

   The latest blow is pain doctors here can no longer take patients without insurance! I was uninsured for over a year when I had to quit work at 56 and go on disability. I can’t even imagine how I could have gotten by without strong pain meds, paying cash back then. I feel so sorry for people in pain here in Florida. It’s not fair, it’s not right, it’s just cruel!

   I’m not alone in the senior communities here in Florida of giving serious thought of suicide due to unrelenting pain. Many already have. But instead of killing myself we are selling and packing up and moving out of Florida to a more sympathetic and rational state that still allow doctors to make our healthcare decisions. There aren’t many left. Starting over at 65 years old and ill will not be easy but I want a life again before I die!

   Oh and by the way, please for God’s sake do NOT vote Scott for Senate!!! He made his fortune off managing a hospital and Medicare/Medicaid money. So he KNOWS about sick people in pain but chose to make us suffer. He’s done other tricky, unethical things against the citizens of Florida too. He is an evil man. Truly. My opinion.

8. To whom it may concern,
   I’m a 50 year old father of a soon to be 25year old daughter. I was 28 years old when I was diagnosed with Psoractic Arthritis “PsA” I was working full time for about 9 years in Facilities maintenance. I started at the bottom working in the warehouse to starting work full time in 1987. After 17 plus years I was starting to miss work and was laid off in July 17, 2003 and collected unemployement for 6 months. I couldn’t find a job at all durning that time. After I finished my unemployement I applied for SSDI and was approved within 90 days. That was in 2004. 5 years later I had my right foot fused together with 6 scews. A few months later I had to have my left hip replaced. In the years after I had herniated disc’s throughout my back. I’m in need of a right knee replacement. One year ago I was told I was to young to have my knee replaced. The surgery I need in my back I was told that I might not walk or live through the surgery. I’ve been on many biologic’s throughout my time with PsA to help slow do the progression of my arthritis. My hands and feet are fused together due to the PsA. I’ve been only to some relief from pain meds. I can go on and on with the issues PsA causes. You can look them up. Not every person is the same. I thank my Rheumatologist for the past 14 to 15 years of helping me live some what of a quality of life. It was sad when I was forced to start a taper off my pain meds. I believe that doctors can’t do the job that they studied and learned how to treat my pain be taken away from law makers. Please don’t take anymore of my meds away. If I can live until I’m 60 without suffering anymore. I can say that I lived the best that I could. Think about what your about to do? I’m being punished because of others and it’s just not fair when we can live some what of a life. Don’t punsh me… please I ask that you read these laws. One more thing I had done with like help is having a spinal cord stimulator implant done last September 12, 2017

   Regards, Chronic pain patient

   Eugene H Flannigan

9. I have Reflex Sympathetic Dystrophy/Chronic Regoinal Pain Syndrome and live in daily pain! I was injured and the nerve in my left leg was affected. My leg burns like I am being electrocuted, shot, or stabbed through my shin. It burns while being frozen on the outside and it feels like I am carrying around an ice barge. I get crushing pain as well as if an anaconda is wrapped around my leg. The pain radiates to other parts of my body during a flare up. I can’t walk most of the time and spend my days on the couch usually crying in pain. I get Ketamine Infusions, Lumbar Sympathetic Blocks, and head to toe joint injections as treatment. My Disease is rated the most painful disease known to man and called the Siucide Disease. You lose your quality of life, independence, family and friends and the pain is so bad it consumes you. My Pain mngt Dr. does not prescribe Opioids. If I need an opioid for breakthrough pain relief due to my condition I should NOT be denied! I went through a Breast Biopsy and due to my condition the RSD spread to my breast. The Doctor refused to prescribe even a small RX for the initial days after the procedure he performed causing the added pain. I do NOT abuse drugs, I don’t drink or smoke and I don’t like the fact that medication that could help me is being denied! I also suffer from Fibromyalgia and RA. All Narcotics or pain relieving drugs should be dependent on an Individual basis as needed per condition of patient.

10. I was in a car accident in 2012. I didn’t think it would turn my life around but it did. A small ache in my back soon turned into widespread leg pain. I tried muscle relaxers (drs prescribed like candy back then) and the chiropractor. My chiro suggested a mri once it didn’t show signs of improving. The mri was officially noted as clear but that was far from the case. I actually had an over 4 cm large tarlov cyst on my sacrum eroding it. The cyst is full of spinal fluid, part of a nerve root for the dura, and the size compresses and stretches nerves around it. As time passed, the pain increased and went to the other leg and I was barely able to even walk to class without the pain bringing me to tears. A surgeon said he could help and we discussed the surgery in full detail. He left out the risk of arachnoiditis. The surgery was performed incorrectly, and ultimately failed. The surgery also caused another rare disease that affects my spine, adhesive arachnoiditis.

    One of the worst memories I have from after the surgery is when I had asked a nurse to help turn me (which was allowed, I just couldn’t sit up or walk.) I asked for help to roll over to the less painful hip. I couldn’t turn myself at all because the pain was too intense. I ended up throwing up the pain medication and it took over an hour to get anything different.

    After I was sent home, it was a brutal dew months of recovery from the surgery. The pain was excruciating. I knew something wasn’t right by how the pain felt but the surgeon wouldn’t believe me. Next thing I was diagnosed with adhesive arachnoiditis from the surgery and sent to pain management.

    Pain management was a joke. They told me the pain was in my head. That I had surgery which means the problem was fixed so no reason for me to hurt. The next appointment they even told me that I was going to kill myself and lied on my chart to kick me out of the program.
    Some days I can’t properly feel my legs but I can feel the searing pain every minute of every day. My dr tried to get me into palliative care but they refuse here because I’m not dieing and about to enter hospice. So I get to continue being undertreated by mr dr who wishes he could do more but can’t.