Share Your Pain Story

999 Replies to “Share Your Pain Story”

1. I am a disabled chronic pain patient. My pain started with a rare disease, Langerhans Cell Histiocytosis when I was 4. I am now 42. My name is Jesica, a divorced mom of 1. So when I say I have suffered most of my life with pain, you understand how many years it has been.

   I have had chemo, tumors, many surgeries, late effects of that disease, fibromyalgia later, compression of my T7 vertebrae etc. I have had many doctors, tried many treatments and at 11 was in a wheelchair from pain. At 12 the head of pain management at Children’s Hospital put me on opioids to get me mobile. Until I met a wonderful doctor at BJC Pain Management Dr Anthony Guarino. He tried epidural shots, neural ablation, physical therapy with no help. I signed the pain contract and only took what he prescribed. He was a miracle worker. It took time but for the first time in my life my pain was under control. I became active.

   I became more active than I had ever been. He didn’t hold my hand or give me whatever I wanted. But I had more pain control than ever from opioids. I married, had my first child. He passed away from SIDS. However years later I had a second child. I always wanted to be a parent. But my now ex husband was tired of my health problems so we divorced.

   After being with Dr Anthony Guarino for 19 years, he retired because of the fake “opioid crisis”. The new doctor decided he was going to take me down on my medication. I had NO say in my own medical care. I have no rights. I am devastated.

   I was a mom. I was an active mom, friend, a human being. Now because my pain level hasn’t gone under a 8, I can’t take care of my own dishes, laundry, groceries. I can’t even walk without a cane. I need a walker but that doctor won’t even give me a damn walker. He has been nothing but cruel. I’m not allowed to complain about my pain. I was told I would be let go if I kept complaining. Who else do you tell.

   I’m not addicted to my pain medication. Opioids DO help chronic pain patients. I was going to go back to school. And try to work. My medication did mostly take my pain away. I need help. There’s 50 million people in chronic pain. I am going to the doctor, signing contracts, doing drug tests. Now I’m home bound. Stuck in a chair. I hate my body. I am a prisoner in my own body.

   Please don’t damn me to a life of hell. So many of us are. I need your help. Opioids have only helped me. I have never in 19 years overtaken my medication. They have given me freedom to live a life. Not a life like most my age but more than I ever had. I want to work. I can’t in severe pain.
   Thank you for reading this,
   Jesica

2. I am a 51 year old professional living in Galveston, Tx. I am writing to ask for a change in attitudes toward people in pain who need improved access to treatments. I want my voice to be heard when actions are taken to curb the opioid abuse problem.

   I need help … I suffer and have suffered for years from severe chronic lower back and coccyx pain that is unbearable. Some of the issues I have been diagnosed with chronic pain disorder, lumbar spondylosis with narrowing disc space at every level, there are also anterior and posterior osteophytes at all bubbles, hypertrophic set arthropathy at all levels, degenerative disc disease, lumbar nerve root disorder and also scoliosis (I honestly do not know what all of this means but I know how bad it hurts). I also had a gastric procedure which limits the kinds of medications I am able to take (such as ibuprofen, muscle relaxers, naproxen and nsaids). Long lasting slow relief medication does not work for me because nothing lasts more than 4 hours in my system. I have had multiple appointments with neurosurgeons and other doctors to be told I have too much wrong with my lower back to have any surgical procedure. It cannot be emphasized enough that I’ve seen many, many highly-acclaimed surgeons, who are absolutely unanimous in what options I have. They’ve all said the same thing: Surgery is not an option for me and due to the nature of my conditions I should avoid any invasive procedures as they can make my pain worse. This includes spinal injections, radiofrequency ablation, spinal cord stimulators and pain pumps, to name a few. I have stacks of reports, CDs and test results justifying my issues. I have had multiple injections with different medications and locations to drain my bank account, gain weight and still suffer in agony. Those injections have caused me permanent damage and now I have Adhesive Arachnoiditis. My only option is pain management thru medication and doing physical therapy at home. I cannot sit down for any length of time, lying down hurts and I can only stand for so long without my legs giving out. In addition to that these days I have been getting shooting pain down my leg when I do sit. Sadly as much as a body needs rest…I can no longer rest comfortably. My quality of life is almost non existent due to the debilitating pain and without relief I really contemplate ending my life. I can no longer deal with the agony and doctors being scared to treat patients that are suffering is not fair to us…the ones in pain. I do not want my friends and family to grieve because I took my life due to pain and lack of treatment. As a concerned, responsible patient I try my best to not even use all the medication prescribed by my doctors to avoid needing to raise the dose of medication needed to relieve my pain in the future. The chronic pain patients are the ones that actually visit their doctors more often, are subject to drug tests and are not the reason there is a crisis in this country.

   The problem is so bad here in Texas that doctors do not want to care for patients and treat them for pain. I moved to Texas 2 years ago and have struggled so bad to find care/treatment in Texas that I have been forced to fly back to my old doctor in California to get medication. Recently I saw a copy of the medications I have been prescribed by the different doctors in Texas that I have seen and all the different prescriptions I have been prescribed. There are many medications on a list and that I never even picked up. I now look like a drug seeker because of the amount of medication changes these doctors have made. How does this happen…the medication shows on a pharmacy list but if the medication was prescribed but not filled why would it show on a list of my medication?

   My previous doctor I saw for many years knows me, knows I do not over medicate, I have never needed to raise the dose of my medication or make any changes. He wants me to find a doctor in Texas to care for me. I cannot believe that I am not able to find a doctor to treat me here in Texas. Sitting is so painful and it is a struggle to fly 3 hours for a doctor appointment. I have to sit in the car an hour, sit in the airport for 2 hours and then the flight for 3 hours. Sitting is so painful and between my back and pain shooting down my leg. By the time I arrive I am in such horrific pain it takes days to recover and I am so tired of living in agony. The only relief I get from the trip is that I have another 30 days worth of medication after suffering so bad during the journey. This is so wrong and it is my human right to have pain relief because it is available.

   The real problem seems to be the addicts that purchase medication from the streets, not knowing what they are purchasing and not receiving medication through the proper channels. When people are not able to get their medication from the proper channels they will seek options from the street with hope of finding some relief. Pain relief is a human right and without relief people will take their lives. Living with debilitating pain you have no quality of life and no reason to wake up in the morning. I am tired of being treated like I am a drug addict because I am suffering severely and need medication to be a functioning adult. I know I will never be pain free but any relief is welcomed. Please, please for the love of God stop punishing the patients and the medical professionals trying to help them!

3. I was diagnosed with Fibromyalgia in 2012. I have pain all over my body. I was turned down on some medication, by my regular doctor, that sent me back to my arthritis doctor, that diagnosed me back in 2012. And she said she could not give me medication for pain either, and I was sent to a pain management doctor. So every 2 months I have to go in and see the doctors. I do not have the extra money to pay for a specialist rate of 100.00. So I suffer in pain … and take over the counter stuff that doesn’t work … this is ridiculous … I never over-use pain medication, but we are being treated like a drug head. When will someone help??? I work for a living and now I am thinking about going disabled, due to the pain… I can’t manage.

4. I had hurt my back many years ago and after trying injections and chiropractors, I finally bit the bullet, and had back surgery. I was told they could fix my back. So, after surgery, I thought, the pain I was having was from the cut and would quit hurting as I healed. This did not happen. I have been taking pain medication, hydrocodone, for about 10 years now for pain. It helps me have a life. I take it three times a day. I have tried skipping one occasionally to find out if I could cut back. Taking meds is the last thing I wanted to do at my 58 years young age, but can’t imagine not having them. I have never abused them. My doctor said he needed to cut me back because of the opioid addiction. Although I never get completely out of pain, it makes my life at least tolerable.

5. Glad you are doing this work, bringing awareness to our chronic pain problem, and having difficulty getting pain Rxs. I am a retired TX educator, and a “very light user”, on a very low dosage, according to my Pain Management doctor. I also protect my pills, keeping them in a safe and secure place. But, I’ve heard of cases where seriously ill and terminal patients had their pills stolen by their own children to use, share, and sell on the streets! Then, the patients had NO meds!

   I’ve had problems with pain since I was 20. Lower back, neck, knees to name the worst spots. I inherited these problems from my dad. He suffered so much his whole life. In the 40s-60’s, he would get the old “compound F” shots, with long needles, into his knees. He said the shots were very painful, and didn’t last long. I think the only choices back then were pretty much those shots and morphine.

   Last week, I had a lot of difficulty getting my Rx filled. They would only fill 6 days worth. For several years, I’ve had injections in my back and neck. Those stopped being effective, so then I had the ablations in my neck. I had to have both knees replaced. I have a back brace which can be pressurized, heat pads, ice packs, a TENS unit, and a Rx pain cream. I had to stop the pain cream and all NSAIDs due to a stomach ulcer. I also do physical therapy. A year ago, my co-pay, with insurance, on each procedure, went from $75 to $250. Very tough on a widowed retiree living on a below poverty income!

   I only take my pain Rx to supplement the other pain reducing methods. The pain Rxs can be very constipating! I’m also retired, so I don’t have to work when I’m in a lot of pain. I did that for years, and it was very difficult, and sometimes impossible. I really have sympathy for you all that are now in that cycle, and you can’t get the needed medication and treatment to relieve the suffering.

   I do feel that the doctors indiscriminately flooded the market with pills. I could get a 90 day supply at 4 pills a day. It would last me over a year. I have no one in my house or visitors that I have to worry about stealing my Rxs. Even at that, as I said before, and knowing the problems with the pain Rxs, I guard mine. In about 2010, I heard that the pills were selling on the streets here in my town for $10 a piece. So, you can see why crooks wanted to get their hands on them!

   What solution is your group proposing? I’d like to know more about it. If I agree with your platform, I’d be willing to join a group in Texas.

6. I am 64 years old, I have been in 3 auto accidents (was found not at fault in any of them), I was already hurting from cervical spondylosis. From the bottom of my neck up into my head (aches). With each passing year the pain worsens. I did not take pain pills daily, maybe two times in my life for the pain. With age I must take my pain medication to survive. I was in a very bad accident in 2008. I was diagnosed with 3 fractured vertebra in my lower back, one in my mid back and 3 herniated discs. A torn shoulder from the seat belt. I am now suffering from arthritis that seems to worsen as the months goes by. I was taking 4 pain pills per day and I even had the doctor put me down to three, pain was some what manageable. And this was before the government (ya we the people) step in and yelled Opiate abuse. Even before that, I tried taking 2 pills a day, and I suffered from 2 pm til my 8pm. Agonizing pain where all I could do was cry. Pain so bad down my left leg, I wanted to cut it off. I tried every pain relieving cream, heat and cold packs, I have bought the pain patches that are sold over the counter. I do not abuse nor sell my pills, would take a lie detector test. I have had many xrays and MRIs that confirm what I have written. If my pills are all taken away from me I will die from the pain one way or the other. I never took pills to get high never!

7. I have been disabled since 1995. I have chronic arthritis and stenosis. I have sciatica both in my back and shoulder from stenosis. Most of my time is spent in bed. I can hardly walk very far without hurting. Some nights I can’t sleep. My doctor has taken me off my pain meds and I have a hard time functioning without them.

8. I am a person living with long term chronic pain from multiple accidents and suffering the same experience of under prescription of opioids (which is the only thing that has been found to help my pain) and contemptuous treatment by doctors.

   However, as useful as articles written by professionals that advocate for us and sites such as Don’t Punish Pain Rally, protests, etc – and I am ecstatic to see the pendulum start to swing in the other direction – I don’t think anything will really change until lawsuits are initiated on our behalf. At the bottom line, it’s always about money. When I went to the web all I could find were ad after ad from legal organizations offering to sue my doctor for prescribing opioids or the company itself who makes the opioids that I took. Nowhere was even one ad offering to help patients with chronic pain sue their doctor for under medicating a patient in severe chronic pain.

   It would be really, really, great if sites advocating for us patients with chronic pain would start to seek lawyers to represent us and also, publish information about any lawsuits initiated on our behalf.

9. I am writing on behalf of my husband who I cannot bear to watch suffer any longer. He had had chronic pain for 10 years. He has had a microdiscectomy, lumbar laminectomy as well as a lumbar fusion. His fusion failed so he had a two-part procedure to correct the fusion. He has done epidurals, physical therapy, chiropractor, spinal implant trial which failed. His surgeon said his source of pain is stemming from significant scar tissue that is entrapping his nerve roots. He was recently referred to pain management whose treatment plan is for him to “stretch more”. He was given zero pain medication. I am a physical therapist by trade and my professional opinion is that if you put that nerve that is entrapped in scar tissue on stretch, you will only aggravate the nerve and increase pain. My husband is 36 years old and has suffered since he was 26. He is an extremely hard worker and his only goals in life is to return back to work and to be able to care for his children. Simple quality of life goals. I watch this grown 36 year old man sob every single day of his life laying in bed, contemplating suicide almost weekly at this point. How can I watch this any longer? How can he deal with this excruciating pain any longer? Day in and day out with no end in sight. DON’T PUNISH PAIN. My husband did NOT ask for this life. He went to work. Worked 6 days a week and was injured. This is the price he has to pay for being a hard worker and being an active member of society, however if you were to look at him now, you would never know that. He is severely depressed. He can no longer spend Christmas mornings with our children, go on vacations with our children. He sobs… and sobs and sobs… daily. All he is asking for is SOME quality of life. On his behalf, I am begging you. DON’T PUNISH PAIN!

10. Hello I’m 40 years old and have been dealing with severe pain in my back and other parts of my body since 2011. I went for a gallbladder surgery and ERCP and ended up with pancreatitis, 1.1 month in the hospital. Came out of the hospital 60 pounds lighter could not walk on my own. I regained walking on my own but had severe pain in my back. Doctors could not explain for years until 2017 when I finally got diagnosed with ankylosing spondylitis late stage – fibromyalgia, and doctors are still trying to figure out other issues I’m having. I have not had any pain meds since 2012 when I took myself off because the pain was tolerable until 2014 when it starting hitting me hard. Doctors told me sorry you will get addicted. What?? I took my self off. So the past 2 years the pain has made it impossible to do anything. My daughter is a junior I have not been able to go to her games or concerts because it hurts so bad to sit in those seats and she says she understands but I don’t. She has one year left and I have no relief to do anything with her and that troubles me more then anything. Recently I went to a doctor he asked who I was. I told him my name. He introduced himself then said we do not give out opiates in this office and then went on spewing about addiction. When he was done I asked him if he drinks. He hesitated and said yes he enjoys a drink here and there. I stood up and said I do not want a doctor that is an alcoholic and walked out. His office admin called me. I explained what happened and that he discriminated against me as soon as he saw me. They apologized and asked if I wanted to come see another doctor. I said no not in your office. I am 6 feet, 240 pounds, have tattoos and a beard. That seems to make me an addict even though I have not had a pain med since 2012. Sorry this is scattered other medications I was on gave me brain scatter and I had to learn how to spell my own name again. Thank you