Share Your Pain Story

1,000 Replies to “Share Your Pain Story”

1. At 46 I was an Accountant and fitness instructor, when I first started having pain in my leg. Fast forward, now I’m 57 and have severe assymetrical degenerative disc from L5 to S1, that leaves me in chronic sciatica nerve pain from buttock to bottom of my foot, I also have and 3 thoracic bulging discs, and arthritis throughout my pelvis region. I began in PM and was on Lortab for 8 yrs. In Jan 2016 I was informed I was being tapered off with no explanation. I could write a book on PM nightmare I have been through. Now, I no longer can work as being an accountant requires sitting for long periods of time. Obviously, I don’t teach fitness classes anymore either. My life now consists of just getting through each day. I have an 84 wheelchair bound mother that needs me, and I’m able to do less and less for her. I have had one back surgery, countless injections. Nothing has changed. My spine is screwed up. I’ve spent a small fortune on supplements, physical therapy, chiropractic. I do go to a swimming pool 4 mornings a week and to try and do something good for my body, but lately that has started to be a challenge. I have days I don’t hardly get out of bed. I look out my window and see a beautiful day. I think about what I’m missing out on, what I’ve lost, and fear a future with more pain and less quality of life. Some days I power through the chronic pain, so exhausted by the end of the day from it. Many days it is almost all I think about; pain causes anxiety…some mornings I have so much anticipatory anxiety about facing another day.
   This has changed every aspect of my life. Everything. Sitting is torture, sleeping is just as bad as my pelvis is like it’s on fire. Same for sex. I am a law abiding citizen, I followed the rules, didn’t misuse or sell my meds. Why are heroin addicts more important than someone has worked and paid taxes most of my adult life. I’m so angry because this is like torture and being in chronic pain, sometimes I feel it may kill me… some days I wish it would.

2. I have dealt with chronic pain since the early 90’s and through every surgery or treatment something else has gone wrong, so that now I have a long list for my diagnoses and all of them are painful and chronic, from disc degeneration occurring in every vertebrae (started in just neck and lower back to now affecting my whole spine with bulging discs and thecal sak impingement from spinal canal stenosis), to dystonia, and fibromyalgia for just a few of the tings I deal with, plus add osteo arthritis, bursitis, chronic sciatica, to the list and there is still much more, that it is just too long of a list to put on here for what is causing all of my pain, all starting after the first neck surgery which was botched and ended up collapsing in on my spinal cord inflicting damage to my nerves. I have great doctors, but their hands are tied and my dosage has been cut by 75% to a point where I am in bed crying more days than not. I was at a level of medication for only three months where I had adequate relief, and I was actually seeking employment again so I could have a decent life and get out of the hole I am in, when the CDC guidelines ripped it all out from under me. And now I am back to having such low functionality that even partially cleaning my home at all is a huge event. The pain is excruciating and people need to know that dependence is different from addiction. Patients and doctors should not be victimized or criminalized. If someone is addicted after one prescription, then they must have had a genetic predisposition for it, and every other pain patient shouldn’t be punished for those scamming the system, nor should the doctors who prescribed the medicines be punished, unless they were an actual pill mill and in it for greed and not for helping the patient. To those wanting to make opioid pain medicines illegal, the lives that will be lost are on you, the suicides due to not having proper relief will be your fault. And every politician pushing this line of thinking should be voted out or jailed for practicing medicine without a license and inflicting pain on so many. I know this is getting rather out there or sounds like a rant now, but sitting here in pain while it takes over an hour to write this due to the pain and numbness in my hands, I tend to get a bit angry at the thought of those who are ruining hundreds of thousands of pain patients lives including my own. I want to work, I want a life, to be a part of my community, and I want just to be able to go to a movie or maybe out to dinner or even lunch with my son, which I can’t do now because of the type and degree of pain I live with.

3. At the age of 13 years old I’ve been dealing with endometriosis I have had over 26 surgeries for endometriosis! Nothing has helped! This pain is something I wouldn’t want to wish on no one! An now at the age of 49 I’m still dealing with it, it has spread already to my colon an on top of it I have Crohns also! So besides having all of this pain I also I have D.D.S. Dics an need a fusion on my back but to scared to have it done because of the Drs cutting out pain meds back! I also have had a total ankle replacement an ankle fusion that cause me a lot of pain also! I had gastric bypass surgery witch has now caused my body to not absorb the meds I take so it now takes me a lot more to keep my pain under control! I have tried smoking marijuana but it does nothing for my pain at all! The only thing that helps my pain is my Oxycodone! It’s really sad they already cut my morphine off that I was getting one pill at nite to help me sleep an they cut that out! since they cut it off I now only sleep maybe 3 hours a nite an have to sleep on a heating pads to try to help with the pain I deal with though my body. Just found out that now I have to see a cancer Dr because of my blood I need blood now because of gastric bypass surgery has caused me so much problems, I also have sugar where my sugars stay too low! I also have high blood pressure too! So I stay in pain all day along if I’m not on my meds my oxycodone helps me a lot I’ve been on this drug for 10 years now An never have had no problems with it ! When I’m on my meds I’m able to move around an when I’m not on anything I can’t even get out of my bed because I hurt to bad! I also have bad bad arthritis in all my joints from not getting the right amount of vitamins! An all of this has to do because of the gastric bypass surgery I had! My body is breaking it’s self down to nothing! I stay very depressed about it! How sad it is that we have to live our life’s under so much stress on having someone to tell us what we can have for our bodies! I thought the last time I check we live IN AMERICA !!!! That means FREEDOM OF SPEAK! Freedom to do what we want!!! That’s a joke!! Because look it’s now something is always trying to control what we do with our BODIES AN OUR MEDS!!!!!
   All this is going to do is cause people to find street drugs to do or buy meds else where! It’s really sad that our country has came to this!
   We all need to come together An work together to fixing this issue instead of hurting us!!

4. I was in an auto accident in 1985, in which I flew through the windshield, taking the entire windshield with me, and ended up landing face first on a giant boulder which stopped my van and myself as well. After several plastic surgeries to make me look somewhat like my old self, I was informed that I had severely compressed two spinal disks in the cervical area of my neck. They tried to talk me into a laminectomy in my neck area, saying that since I’d already exceeded all my deductibles insurance wise, it wouldn’t really cost me any more. I’m pretty sure they were more interested in the money than curing me… Since I wasn’t in any neck pain at the time , and had surgeries up the wazoo, I refused. They told me I would eventually end up having problems with it later in life, but I refused. After ten years I began having minor neck pain any time I turned my head to the right. It worsened further over time, becoming constant pain, 24/7. I spoke to 5 people that had the type of surgery they wanted to do, and out of the 5 people, only 1 had been fully cured by the surgery. 3 ended up still being in the same amount of pain after recovering from the surgery, and the last man I spoke to was in a wheelchair permanently, unable to use his left arm at all! The neurosurgeon I spoke to said I had 2 options: 1) Have the surgery and roll the dice (As he put it) or 2) Control the pain with drugs and try to live a normal life. The wheelchair did it for me! There was no way I was having that type of surgery! I have been going to pain management clinics for years, and had been able to keep my pain at about a 2 out of ten, which is reasonable for me. I can keep it out of my mind with the meds I’m using, opioids obviously. The first clinic I went to for 5 years, suddenly told me they would no longer just give meds for people in pain, but insisted on spinal injections instead. So I went ahead and tried one. It was the most painful injection I have ever had, but it did completely stop the pain, leaving me ecstatic! The only problem, other than the extremely painful injection, was that 3 days later, the steroids wore off. The following visit, they told me I could only have 3-4 injections per year. Well, that won’t do it for me! So I have been using the drugs, AS PRESCRIBED and living a fairly normal life. Now I have to worry about this media frenzy calling this an epidemic??!!? I am very tired of this media fair and will be writing to my congress person, but I am afraid to include my name. I am afraid they will come after me. then my doctor. He’s a very compassionate man, and feels the same way I do about this situation. All of his patients who live with pain must supply him with real proof of their conditions before he will keep them on as patients. I have been with him for 7-8 years, and have had three MRI’s over the years which show the bulging discs I have, one of which is close to herniating. He has also given me advice on several other methods I can use to increase the relief provided by the prescriptions, one of the biggest was to simply improve my posture. Then he advises ice instead of heat, for nerve pain. He says that heat is good for muscle pains and spasms, but not for nerve pain. I tried this and it does help. About a month or so back, I was driving and was about to change lanes to the right, when at the last minute I noticed a truck in my right blind spot. I jerked my head around to the right, and felt a very sharp pain in my neck, which was followed by an electric shock down my right arm, which left my fingers tingling for over a week. I really paid for that maneuver ! I was in excruciating pain 24/7 for about a week and a half. No one should have to live like this! I take 2 ER (extended release) tablets a day and 4 IR’s (instant release) tablets for situations like this. It works, and though I have developed a tolerance for the drugs, I’ve never asked for an increase, since I know I’d just develop more tolerance if I did. The drugs still releave my pain, I just don’t get giddy anymore. That is fine with me, as it was an impediment at first. Ah, I feel a bit better! It’s sad that there really isn’t any one else I can discuss this with, except my doctor. This is not a joke to me, but thank God for the existence of these types of drugs. I know I am dependent on them, but as long as they are there, I know I can live an almost normal life. It just makes me so angry that so many people just take them for a fun, like a ride at an amusement park! Now, people that really need these prescription drugs are going to pay the price! Life is very unfair, eh? Good luck to all of you out there!

5. I am 62 and have been fighting cervical ( neck) pain for three months now . I have mri and waiting to see my neurosurgeon but my pain specialist and pcp would not give me even one norco to take at the end of a long 9 hour shift of work because of their fear of prescribing opioids . I take ibuprofen and Tylenol, but fear the damage it can bring to my body as I have been a long time user. I need a tad stronger medication to help my pain as I await a neurosurgery consult . I am not an addict or an abuser of anything and am a leader in my thirty year career with an impeccable reputation . Please ease up on these extremely strict requirements on drugs that are medically needed to improve quality of life . I have also tried alternative methods to pain management to no avail . Please listen to our pleas .

6. I am 54 years old and been living with RSD or CRPS,resulting from a 1995 crush accident and followed by two failed surgeries ,for 25 years. I llved with debilitating female diagnosis as well. Endometreosis and Ovarian Cysts from yteenage to age 34 .By 2001 my Lumbar spine had stopped me in my tracks. Affecting left leg for 19 years . I was steered away from surgery with the CRPS diagnosis . Fourteen years of lumbar/Cervical Epidural inj. And 25 years of Trigger Point Inj. Many years of PT. Today I cannot endure it. I have Spinal stenosis, multiple herniations both Lumbar and Cervical. DDG and my childhood Scoliosis diagnosis . I have Fibromyalgia,Osteoarthritis, and Post Lyme Autoimmune Arthritis. I have been successfully treated with Opioid rx medication since 2001. Over the past year, I was weaned against my will until no more. The days are filled with tears, no life and thoughts of an early death. I am Hypertensive on four BP meds. The very hospital I was born in , turned me away with a 113 bottom reading. I was judged by my old Dr , who never came into the exam room. Post hospital appointment was with different provider same bldg. He instead, put a flash on my file and gave me a referral to Conifer Park. May I add I am a non addict with no mental health diagnosis. I am still being told, to check into medical marijuana. Been told to “clean myself up” by uneducated ex friends. Medical Marijuana is unreachable to those of us living poverty level. I also have a painful hernia .I will not be able to have my Mammogram or any other tests with no pain med. It is severe and as late I have bowel leakage. Our lives are at stake . Thank you !!

7. I have been diagnosed with Still’s Disease at 21 years old. Now I am 41 years old and still have it and have had several knee and other surgeries. I am not allowed to have pain control for anything. I just had another knee surgery ( number 6) on right side and this time pain has been hard. The doctors can not give anything less than OxyContin if you are allergic to Tylenol. If you can take Tylenol then you can go to Narco that has Tylenol in it. I do not understand that they can have pain control and I can not unless I break the OxyContin in half. For any full knee replacements I have had only one script of OxyContin each surgery and now can not get off due to pain is to much if do not keep it in control. I do not like being on the OxyContin sand would like to go down, but tramadol is not enough to keep it in control. The state says they can give xanaflex and gabapentin for pain but not enough even just after two weeks postopt from 6 knee surgeries. They need to let the doctor’s practice and not the state or anything else. The doctors need to also say no after awhile so they do not give anymore scripts for pain. You do not need pain meds for 6 months after surgery. Just maybe tramadol. Even after having still’s disease (arthritis). I still take Tramadol and gabapentin for tingling in my feet, and xanaflex for back spasms. I still can not take Tylenol. I took all of it before surgery and the only one added was the OxyContin and how I take tramadol, xanaflex, and gabapentin. I will go back to the way I taking it. It worked better for me. Tha kicker is I will not take meds if I am not in pain.

   I also understand the addiction part of it. The family members should speak up also to the doctors who are treating these drug additive patients. Most of the time the family is scared of the additics. My brother is one. I will speak up so he does not get to much.

8. The opioid epidemic is not my fault. The doctors overprescribing pain meds to people with no apparent medical issues is not my fault. But I, a person with a real medical issue, that really does need pain meds has been cut off by my doctor. I’m assuming due to new prescribing policies related to the ‘epidemic’. The doctors are scared for their licenses, if caught prescribing too much. All of this doesn’t matter to me I’m just PISSED Off; I’m paying the price for things that other people have done!

   I’m 58 years old and have had chronic migraines since 9 years old. Recently my long-term neurologist retired. The new neurologist was young, she is a headache specialist and sounded like she had some good treatment plans to try out nerve block and DHE infusion.

   My treatment plan with her was: she promised not to make any changes to my meds until she could find something that would work to replace them. I was looking forward to try some of these alternative methods. I figured that after trying some of these new technics that a tapering of my pain meds would come about – eventually. When I to the pharmacy to pick meds, and she had reduced my pain relief meds down to 15 pills for the month. I was shocked given the treatment plan we had discussed.

   After many trial and errors my old neurologist put together a plan that worked for 9 years!!! My rescue kit contained – Botox, Phenergan (pill and Suppository), ketorolac injection and Hydrocodone. I only used the rescue meds when I had a chronic migraine. I did not abuse my meds or ask for more all those years. Passed all drug screenings. I was a responsible patient.

   My beef with new doc is why such a drastic cut? Why not gradual? I had no issue with reduction of meds, but not to that drastic point. She assured me her special strength Botox injection would work and I wouldn’t need anything else – WRONG. I’ve been on Botox for 6 years. After her special Botox injection, I’ve had 2 major migraines. One ended me in the ER. My body was experiencing withdrawal from the radical decrease of meds. I had saved the precious 15 pills for a severe migraine; I mean they have to last 1 month. I had asked 3 doctors about what kind of procedure my insurer has for tapering down or maybe a program where there is doctor supervision. They all said nothing available. So, by this point I feel terrible, blood pressure 203/198, nauseated, crying, panicking about what will I take for the upcoming migraines?

   I was desperate for help. I looked on the internet and found the Kaiser Chem Dependency unit. I called they took me right away! They said the doctor never should have cut back the meds so drastically! I received support and meds for withdrawal from them. And ongoing counseling. Now the newbie doctor said she won’t give me the DHE infusion we discussed as an alternative to pills. I asked about AIMOVIG the answer NO.

   I have filed a grievance with my insurer against this doc and a doc from the pain unit. The was an investigation and my insurer has moved me on to another neurologist! Thank you very much. And there is mention in the report that the neurologist will be dealt with by her chief. Don’t know what that means…I did find out that she has had numerous other ‘issues’.

   Right now, I have NOTHING to take for migraine, which I get once a week for 3-4 days at a time. I’m upset with her as she was not medically taking good care of me. She made many mistakes! How this has affected me: I’m scared to death of getting one of those horrendous migraines, and needing and now having nothing to take. I’m a wreck every day. And often suicidal, because I can’t imagine the rest of my life with these massive headaches.

   What I want is: nobody should have to go through this, especially if there is a program at their disposal. I don’t want doctors to have this one size fits all approach to all patients. And I’m willing to cut back, I just need something for the migraine days I suggested 1/2 my dose, 30 pills for the month and I will try to make that work. There is a sense of despair and depression around the fact that I now have nothing to take for a migraine. I know how bad the pain can get and have plans in place to release myself from this ongoing pain. I hope things get resolved before it gets to that point. There are many women, on my Facebook migraine/Chronic pain that have taken their lives after doctor has taken away pills. There is a growing epidemic of lack of hope, and these women feeling that there is nothing for them as all the emphasis is on the opioid overdoses and doctors prescribing to people who have no medical conditions. I’m mad at them and the doctors who prescribed to them! What about me? What about all of these mothers, grandmas, working women that have had their meds taken? What about us?

9. Im in chronic pain 24 hours a. day

10. I’m a CPA and work in the government. I suffer from spinal disc degenerative disease. I work with a pain management doctor and just to refill my medicine I have to wait until the day my prescription needs a refill (that date changes depending on what they think I should have used not in how it was prescribed). I was helped with epidural injections for the past 2 1/2 years and physical therapy but my last 2 injections did not help and am getting severe pain in my hands. I had a spinal fusion of C5 to C7 in 2013 for which I received a little more than 2 years of pain relief. Unfortunately the pain came back even worse. I take long term nerve pain medication which has side effects of constant drowsiness and effects my memory. I’m 60 years old and saw my father suffer terribly until his death at 86. He had multiple spinal surgeries that did not help him with his pain. I was on Tylenol #4 which when I tried to stop taking that medication when I had a brief period of no pain. Unfortunately when I tried to stop taking the codeine I had a drug withdrawal and had to get help from my doctor to get past the withdrawal symptoms. Unfortunately when the pain came back they had no choice but to put me back on the medication that I had a withdrawals. The best drug that helped me and I did not have withdrawals from when I stopped was Vicodin. I took it for over 1 year and after my surgery was able to stop without withdrawals. Too many people such as myself that need these pain medication inside a pain management situation are deprived of the best pain medication in a complete overreaction to people who abuse and die from a drug overdose. I feel bad for those people but to put millions of people in distress over pain medication that help to make their lives more bearable and still make a contribution. You are treating us as drug addicts and categorizing people in constant pain with those people that abuse pain medications. You need to get the DEA out of our doctors lives so they can treat patients. Last time I was at my doctor’s office I was in so much pain they had to give me a steroid pack to get the inflammation down. I’m tired of having to pee in a cup to keep up my medications, and now my pharmacist requires a diagnosis on the prescription for people like me who require medications. I wish that there was a miracle cure and I no longer suffered from spinal degenerative disease, that a surgery could insure me of not worse pain as the degeneration but until that day comes you need to change the laws for our doctors and patients.