My Story: Living Through Betrayal & Withdrawals

My Story: Living Through Betrayal & Withdrawals

By Suzanne Burnett Stewart

suzanne-burnett-stewart

Suzanne Burnett Stewart

I had gone to a pain Dr for 3-4 yrs s/p a MVA in 2002. I went through having multiple injuries/surgeries. The Dr.’s forced me to take Opioids! I didn’t want to take them and I was afraid of becoming addicted! Not for any reason; because I have no history of smoking, drinking or taking any kind of medications! I have a letter that the pain psychologist wrote, stating that I “don’t have an addictive personality.”

I did everything that was asked of me by all of the professionals who’s care I was under. I endured all of the painful injections, the years of PT-OT, Biofeedback etc. After all of that, they wanted to give me an intrathecal pain pump. Then we found that I am not a candidate due to Combined Immune Deficiency Disease. The risk for infections and/ or paralysis was too high and so the pain Dr “dumped” me off back to my GP for pain meds only! He said the the “Govt. looks at him through a microscope” so he wanted my GP to do the meds.

So that was 2005 and in 2014-Dec., my GP had Feds at his office & he was removed from that office & sent to an urgent care! I was stuck because nobody wanted to prescribe the fentanyl losenges and patches for me (I also had Dilauded for emergencies). I went back to my old pain Dr and he refused to see me! He said that “he didn’t want any part of that other Dr.’s (the GP) mess”! He wanted to send me to his “pain Dr. friend!” I researched the guy to find out that he was or is actually an addiction specialist. There was no way I was going there! I’ve never even smoked cigarettes! There’s no way I was allowing “that” to follow me around in my medical records.

So I did it on my own!

The partner GP offered to help me for a few months but, ASAP, I was told to find another pain Dr. But I wasn’t just told that, I was badgered over & over again to go to that specialist. I lowered my doseages myself.

When I finally found a kind pain Dr. who was respectful towards me; he told me that even though I’ve had a CVA and an MI, I was to “stop the Fentanyl losenges cold turkey!” I had gotten myself down to half of the amount of the patch. I stopped the losenges on my own, on the day that the new pain Dr. told me to. He told me that I never should’ve been on them in the first place. They’re for terminal cancer patients and even he’s not fond of them! He was visibly upset that I’d been on them for about 10 years! So I got down to half of the patch amount and to zero losenges!

I was very, very ill!

The new pain Dr. told me that my body would be “fooled” because he gave me a smaller amount of opioids & I was still on half of the amount of the patch! Well, I’m here to tell you that my body was not fooled! Nothing was fooled and I was sweating, nauseated, had diarrhea and got very high fevers and blood pressures! I started researching withdrawals myself. Nobody was helping me, except my poor husband, who was feeling helpless. Nobody felt as alone and helpless as me during those dark days! I was so happy to have my loving husband to take me by the hands & walk with me through it all. It was a horrible 1st week; like the flu, but worse because the pain was so much higher. After about 6 weeks, things got better. But I must tell you that I never once craved the medication! I was happy to be rid of those losenges, actually.

I’m very proud of myself for what I did all on my own, for the most part. I now have a wonderful pain Dr. Who cared enough about me to let me go and not treat me if I couldn’t do what needed to be done. I did it, and I’ve done it, and now I’m on about half as much medicine as I was on during those 10 years. I also feel like my pain Dr and I mutually respect each other. I did something by myself, that many or most people couldn’t do even with help!

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 23 comments for this article
  1. Tim Mason at 5:40 pm

    Hey Suzanne I did not judge you at all. I too was run over by a car back in the early 70’s. It was one of those that has a big shinny steel chrome plated bumper. I was laid up for months on blood thinners due to many blood clots. and broken bones-including my face that hit the windshield.
    I went into pain mgmt. after years of taking anti inflammatory medications lost 50 lbs and thought I had pancreatic cancer. When I finally saw all the blood in the commode I new something was bad wrong. I had a hole in my stomach from taking so many Cox 1 and Cox 2 inhibitors. Four months on Carafate and baby food and I was ok stomach wise.
    I have had my intestines and bladder moved twice by a vascular surgeon so they could get to my spine and stabilize it. I am 59 years old now and have the lower back of a 95 year old man. So they say.
    I have seen photos of CRPS and the limbs look like the victim of snake bites. My bosses wife has it and is in a wheelchair.

  2. connie at 12:45 pm

    Tim. They dropped my dosage from 125 mcg to 50 mcg. Dam I think I forgot to put that in my post to Suzanne! The fentanyl was replaced by 30mg oxycontin twice a day which often ends up to be less as I throw it up whole or it comes out undigested in my stool!!

  3. connie at 12:38 pm

    Suzanne I think we are in agreement but I am not good with words. I will try again. The amount of fentanyl was probably more than needed? I too have multiple pain issues, some of which I don’t seem to be able to get a doctor to even look at. I too need more pain meds than most but had most of them taken away thanks to CDC GUIDELINES. I was on 125 mcg fentanyl patches, 3-4 actiq suckers replaced by 2-4 mg dilaudid every 3 hours all of which replaced by 30 mg oxycontin twice a day and maximum 4 mg dilaudid per day. I think in my fuzzy brain I was thinking you didn’t require that huge amount since you seem to be saying you’re ok with what they reduced you to. According to the pain doctor my husband had after surgery in a cancer hospital if properly titrated up there is no upper limit on fentanyl unlike other pain meds but it does make it harder to have something like colonoscopy done since they have to do in surgery rather than the suite they normally use for such tests. Contrary to popular belief it’s one of the safest drugs to use for severe pain! I hope I made myself more clear this time since it’s my sincere belief that no one can know what another person needs to treat their pain! I do get frustrated when I hear how I should be able to treat my pain with exercise and positive thinking! My apologies for the misunderstanding. Peace

  4. Tim Mason at 9:01 am

    Connie. Surely they did not take away your fentanyl patches! You mean the sublingual form was taken away?
    Can you clarify?
    I use the fentanyl patches now since my morphine sulfate got to 100mg/day,

  5. Suzanne Stewart at 8:05 am

    Hello, I wanted to direct this response to #1 Tim: I just wanted to let you know that the doctors were not trying to differentiate between any diagnosis. I have several specialists that I see and I’ve already been DIsgnosed. So thank you so much for the advice. But I am not looking for a DIagnosis, as I have many high pain illnesses from A to Z . The main ones being: Severe FULL BODY/Systemic RSD/CRPS, RA, Chiari I, Gastroparesis, Polyneuropathy in Collagen Vascular Disease, Autonomic Neuropathy, Coronary Spasms aka Prinzmetal Angina & Degenerative Disc Disease along with multiple herniatedv& bulging discs in my cervical andLumbar spines. Also CONNIE, please read the above DX. Then please re-read the tire article to see that I very much NEED & am an Advocate for the Opioids that I in fact, DO NEED & have Never stopped taking since I was hit by a car in 2002! All I was explaining is that the pain Dr passed me off to a GP for pain meds because he said he was “looked at under a microscope by the Feds”. So then my GP ended up giving me waaaay too much more than my small 120 lb 5’5″ body should’ve had. He got me up to many many 1600 strength Fentanyl losenges + 2 Fentanyl 100 strength patches + Dilauded for BT pain! I was naive and trusted him & all of my other Drs in my team of physicians also knew what I had been taking. So I just trusted that the amount was OK! Then when my GP if 12 yrs. got in trouble & Feds came to his office & he can no longer write pain scripts, I was left alone with no one to help me. I said that I tried to return to my old pain Dr but he “didn’t want any part of that GP’s mess”! I had to find a new GP because the one I’d trusted for 12-13 yrs was suddenly GONE! I had to find a pain Dr because of the many HIGH PAIN ILLNESSES that I live with daily. Also then I wrote that I did find a very compassionate and respectful pain Dr. But he told me that “he could not & will not treat anyone with those Fentanyl losenges” because, he said “they’re dangerous & not meant for anyone to be on for 12 years especially! They’re for end of life treatment! Especially for terminal cancer patients”! He said that he’d see me once I got off of those. He gave me the tools I needed to get off of them; in that I was still given normal doseages of Opiods but not the amount for a size able horse, which could’ve killed me! But “being forced” (because there was not a Dr or a pharmacy that would give me the losenges anymore) to stop taking those Fentanyl losenges after 12 years of daily use of a high # of them (although monitored by my old GP who was fired & taken away *& I trusted him because he was my Dr for all of those years!)… I had to go through horrible withdrawals! It was horrible, painful and Ivwaa very sick . The new pain Dr then has seen me ever since and we have a great mutual respect for eachother. The moral of my article was that first I was told to trust and then passed around. I was given “more than anyone even more than they’d give a patient with terminal cancer”, according to my new pain Dr of the past 18 mos now. It was dangerous for me and I could’ve died! Now, CONNIE, I’m on a high dosage still, due to my multiple high pain illnesses. But I’m on much less than before; a more “normal” amount for someone of my age and size. But a high enoug amount to help my multiple pain issues. Also just ONE of my pain issues is “Severe Sysyemic Full Body RSD/CRPS” & thats enough pain to “Oviously NEED the Opioids”. I’m not a candidate for an SCS or a pain pump because I also have “SCID- severe combined immune deficiency disease “! So just like the person who stuck a note on my car, telling me that “I shouldn’t be in HC parking spot because I DON’T LOOK SICK”!” No one should judge another by saying something like “YOU OBVIOUSLY DIDN’T NEED THEM”! please read the entire article and maybe a couple of my other articles before you judge me so harshly. Lastly, I just want to let Joseph know that I did in fact find a wonderful pain Dr. 18 mos ago, luckily. I thank you for your compassion & concern.

  6. connie at 9:26 am

    I commend you for being able to get off the drugs you obviously didn’t truly need. I have done that in the past with various medications yet for some of us those medications are necessary to have quality of life. Fentanyl patches have been a life saver for me and before my insurance refused to cover them because I don’t have cancer the fentanyl lozenges were great for breakthrough pain. Using pills as I have to now isn’t nearly as effective since I often either vomit them up or they pass through my poorly functional digestive system unchanged! Medicine by numbers don’t work for everyone as we well know and I get frustrated when even others who need various medications for pain vilify a medication because it isn’t the right one for them! Keep up the otherwise good work.

  7. Maureen at 5:03 pm

    Suzanne, I share your emotional pain, you don’t deserve that…
    so let me remind you ‘YOU ARE A WONDER WOMAN, YOU ARE U.S. PAIN FOUNDATION AMBASSADOR OF THE YEAR!!’ Bravo to you!!!
    Breathe that negativity away and keep strong.
    I pray that the effects of those horrid people leave your mind asap. They should know better.
    I am an Advocate for the US Pain Foundation, since Paul began it. I too facilitate a support group, in my town. I also work hard at educating others. I am constantly met by negativity from my family and some friends who are in denial of my life as it is.
    As you know, it is not easy to get our teachings across to everyone.
    So, hang in there! Tomorrow the shine will shine brighter for you.

  8. Joseph DiCapo at 8:23 am

    Susan u dont need to worry of others opinions who dont live a day in your body.. let alone your RSD/CRPS body… i believe it should always be followed w ( ) and inside say (suicide disease) so ppl actually understand how bad of a life u have go through every single day and that even the opiates although they improve your functional capacity, u are still by no means better or any less disabled… i really hope u took my advice from my 1st post… im telling u.. in far less time than it took to write this article u can find a handful of drs within a 45 min radius that will be able to help u and do so w compassion… first search propublica for whatever medication helps you the most. All u have have to do is type into google…propublica, name of your state and the medication… it will spit u back a link to the site and give u a list from the medicare medicaid database of the top prescribers of that medication for your state. Then just click around.. u can narrow it to cities around you… find out a drs habits and if they meet what u need add them to a list… when finished take that list and cross reference the drs on internet w sites like vitals and ratemds etc even a Google search. It will be able to help u find a friendly helping caring compassionate dr out of those on your list… it will take u less than an hr and i assure u that u will find atleast 3 drs that will be able to help u properly. In return for my info plz do me 1 favor and dont go back on the fentanyl… its not worth it.. their are much better drugs for RSD/CRPS.. I have heard ppl having alot of lucky w Nucynta. Its kinda a big steriod brother of tramadol and works well w neuropathic pain.

    Best of luck maam… hang in there!

  9. Suzanne Stewart at 11:23 pm

    Hello everyone, this is Suzanne Stewart again the writerAuthor of this article. I had to return to tell you that I thank you so much for your kindness and your comments. I was a member of a group and it was called something like “Americans and Veterans for the advocacy of opiods”…or something like that. I thought I would be helping people. They read this article and all they saw Was 6 words that I wrote. They saw “I was forced to take opiates”. I was put down with a vial, rude horrible language used to abuse me. They called me names. I have never been treated so horribly in my entire life in a group that was supposed to be a support group. Obviously I said my piece and I left the group just now. My article was talking about my struggle and how I felt betrayed by my old pain doctor & my GP when he just left me. There was no one to help me after I trusted them for 12-13 yrs., because I was afraid, at first, to take the medicine that they wanted me to take. Because I wrote “I was forced to take opiates”, these two girls thought they had the right to be “beat me up verbally”! I was afraid because I had never taken any pain medicine in my life. I knew nothing about it I never smoked a cigarette, took drugs, smoked pot or drank a beer! I graduated from college with honors I never did anything that was considered “scary” to me . I was afraid…but that’s what I was writing about. Not that somebody “opened my mouth and put the pills in my mouth and forced me to take them!” I never said those words! If they would’ve read the entire article instead of focusing on just that sentence they might have understood but they did not finish reading it and they took only what they wanted to out of it and that was their own anger and helplessness feelings of helplessness. If you’re hurting or you’re in pain it’s doesn’t give you the right to “beat anybody up”. I was abused all my life by my mother ! I was abused by my brother and my father and my family. My mother was in pain my whole life and she took it out on me. I would never do that to anyone ever ever! I use my pain to make “hope” for people!! I write, I do groups & I make support groups and I set up “meet ups- in person!” so people can be loved, listened to and helped. I just needed to come here and read the comments that you people wrote. I want to thank you for being kind. I know I have to have thick skin because people aren’t always going to agree with me. But what was said in those groups was horrifying. Needless to say I am no longer a member of the group. Thank you for letting me respond to your Kind comments.

  10. I.C. Harddays at 11:41 am

    I have been on many different types of pain medication and some were non-narcotic at first. Tramadol was very dangerous to me.and in fact made me think of suicide and DID NOTHING to relieve pain.I have several friends that I have made over the years that tell the exact same story about t tramadol.I really understand when a person states that they can not live in pain much longer. Don’t give up Constance. Death is the ultimate unknown. My religion tells me that my own life is not mine to take. It is utterly rediculous to have to live in agonizing pain, emotionally cut off from your family, your friends, and the outside world because of the few people that do not consider the consequences of taking opioids (mostly the illicit opioids) seriously. I don’t think that those of us delaing with pain so severe that death is an option worth taking when the “opioid death epidemic” CAN be dealt with in a much, much, more intelligent manner.. If you are in enough pain to need opioids to relieve the pain, a specialist needs to be the authority to prescribe them. I reaize that money, insurance, and government is all part of the equation in getting adequate pain relief for NON cancer chronic pain patients. We still have methadone clinics and for about $15, $20 per day, you can get prescribed up to nearly 200 milligrams per day of methadone. Methadone is also a pain reliever and a very effective one. It is being targeted by the “authorities” to be removed from the list of opioid medications available for chronic pain patients. Why? Because it is effective? Because it is inexpensive in relation to other opioid medicines? No money to be realized by the people in authority? I don’t know. . If you take your pet to the vetenarian and if it has a painful terminal disease or injury that is causing extreme pain, we don’t hesitate to remove the pain from our pet even when termination is the only option. It is emotionally hurtful to the pet enthusiasist as our pets become family.. WHO would take your pet home and watch it slowly perish? Our physicians and learn-ed ones state that pain can not kill. I beg to differ Chronic .pain ruins lives. I can not believe that a more intelligent method of opioid dispensation and monitoring can not be developed instead of simply removing the medications from the people that need them. Physicians KNOW who really needs medication. It boils down to being responsible. If someone goes to the extent to seek help from a pain specialist, stays in accordance with their agreement with the specialist, is urine tested at every visit, pill counted (if necessary) at every visit, and is physically evaluated at every visit before being prescribed pain medication. I would say that is a RESPONSIBLE patient. Even if opioid prescribing is reduced “across the board”, opioids will still find their way into hands of those who will not be responsible with opioids…….period. If the specialists are keeping a vigil watch and records on the responsible patients and the CDC/DEA is keeping a vigil watch on the physicians/clinicins who are prescribing opioid medication to their patients, then the problem with opioid mortality must not lie in this system of prescribing opioids. Yet ALL patients are being targeted and abandoned from sufficientt treatment. If a physician does not refer their patient to other physicians when said patient is not receiving gainful treatment, then this called patient abandonment.

  11. Jean Price at 11:21 am

    Reading over the comments and the story, it’s plain to see this all speaks to both our frustration in being treated so poorly, and our courage to take care of ourselves…as a way to survive…and hopefully, like Suzanne, come out ahead! I’m so sorry that anyone would be abandoned by those who are supposed to partner with us in our health care and have the joint goal with us of finding what works best with the least possible negative effects.

    Suzanne’s story, and other stories of those already being drastically limited in receiving ANY pain medication, are being repeated way too many times in other people’s lives across our country!! And sadly, many are without the family support and even the ability to do what she did! Until we can get everyone on the same page to treat pain appropriately AND truthfully….our advocacy groups, our doctors, our government agencies, the patients, and the caregivers or family members…I don’t see we stand much chance of stopping this screnario playing out more and more…with many having much less positive outcomes than Suzanne worked so hard to achieve! The current state of pain care isn’t logical, scientific, compassionate, or at all helpful to those with life limiting pain!! So trying to combat these issues then with logic and science and a call for more compassionate care puts us at a distinct disadvantage! How do we hold up the truth when the current care is based on such falsehoods?

    I think telling our stories MORE TO THE PUBLIC IS OF PRIMARY IMPORTANCE… and of course continuing to use places like on here, as a way to offer support and hope to each other! I believe the public is mostly unaware of all the abuse in pain care and the tragedies this is creating. They have been bombarded with stories of drug abuse and overdoses, but not with OUR STORIES AND THE TRUTH OF WHATS HAPPENING!! Please consider posting any and all information you have to the public, on social media, in your local paper as a human interest story, and just anywhere you can think of…even a church bulletin or an unrelated organization or neighborhood newsletter…to get the message out AND UNDERSTOOD! We need help with this and i think it will take people who don’t have pain to ALSO be supportive before we can make the needed impact. Make it short and to the point, telling how life has changed without medication and appropriate care, and telling of the abandonment and the abusive treatment!

    Our lives may literally depend on this, and surely our ability to have even minimum function and some semblance of quality of life WITH pain does! Yes, we do have to advocate of ourselves…but it will also “take a village” to help stop the abuse and get us back on track…not just for adequate pain medication when needed, but for all the other aspects of support we need as we struggle to live with persistent pain and do more than merely just survive. Giving us the chance of ALSO having some joy and contentment in life…and contributing to our families and communities!

  12. H.B. Hamby at 9:46 am

    I have been a chronic pain patient for over 19 years. I was told by my GP to seek the help of am orthopedic surgeon at age 37 for sustained leg and back pain. I was in significant pain from a herniated disc. I have been a home builder now for over 30 years. I was not seeking to “extend” my life or cheat death.I would not think that a younger person diagnosed with a very painful disease or has been involved in an accident would be thinking of extending their life at a young age but just seeking pain relief. Continuous, disabling pain is not normal. Pain does not take age into accountabiity. Yes, as we age the normal is for a person to develop very painful arthritis and other elder people symptoms that tylenol and other NSAID type meds can not help. I agreed to surgery after being referred to an orthopedic surgeon on the assurance (no such thing really) that my pain level would decrease approximately 70 percent. And I believed it!?!? One year after the first surgery, another disc became herniated. Anther surgery was in order, a fusion with metal plates and screws. No choice the ortho pedic doctor advised me. I was still working at the time of surgery no.2. It took almost a year after surgery no. 2 to be able to attempt to go back to lighter work. No such thing in building though unless you just supervise. Small businesses like mine required my interaction. After the fusion surgery and recovery time, I was still in incredible pain. No sleep, a back brace, heating pads, ice packs, physical therapy, water therapy, core exercise, even minor chiropracticagain, still incredible pain. Referred to a pain specialist by the ortho surgeon, the surgeries reinforced my “skeletal” problems but, I had muscular pain and nerve pain. I took the opioid medication offered by the specialist and I reached a fairly high dosage of several different medications. The pain specialist I was seeing came under investigation by the CDC or DEA and instead of helping those of us reduce our medication that he had gotten many of his patients dependent on, he did the simple, fastest, remedy he could. He was was being forced (by the CDC/DEA) to reduce his opioid prescribing…….immediately!. He DISMISSED many of us to keep his own license! My GP helped me find another specialist and by the time I had been accepted, I was ready to end it all, literally. I managed to stay alive and with the help of the new specialist I was placed on one type opioid medication daily and now after 6 years with him I am steady on that one medication and taking 100 milligrams of medication per day versus 160 milligrams of the same medication, plus other opioids for “rescue” from the first specialist..I have been on the same 100 mgs of opioids for 4 years now. I have some very painful days but overall I can deal with the chronic pain and I am still working. Not as hard, not as long per day, but actively working. Now, the CDC has came out with the new “guideline” and I am to be reduced to 20% of the 100 mgs per day I have been prescribed for years. I have already been started on a reduction agenda. I am worried, and I am actively seeking a way to cope with the medication reduction. It does disturb me that the authorities want to place ALL chronic pain patints that are not having to fight an active cancer on the same amount of opioids per day. I believe that some patients may be over prescribed opioids but, I would hope that this evaluation would be left to a practicing specialist who has ben educated in prescibing opioid medicatios and stays within the confines of opioid prescibing regulations. I too wish that there were non opioid medications that could help those of us with our chronic pain regardless of “how” they came to need pain relief. Unfortunately different patients need different treatment and it sometimes does come down to opioids as the last treatment. I can not judge anyone as for the “intensity” and continuous pain they may have. I am happy that some of us can deal with minor or minimal pain with OTC medication. I don’t think that we should ever doubt that pain can and does become disabling both physiologically and affect the psyche to the point of being completely overwhelmed and self destructive. I thank the Almighty for those physicians who take a real interest in their fellow man suffering from chronic pain. I agree the entire body, body and mind needs to be treated for chronic pain but it is redicuous the authorities think that one type treatment or one type medication and dosage will work and comfort all with overwhelming continuous pain. We the chronic pain patients realize pain is devastating and I doubt if we will convince many of the more blessed people of the real suffering we experience.. We need professional help but, if not to be found we have to find our own solutions. It is so needless for people to have to suffer to the point of self destruction as the final alternative. Yes, pain can be that bad.

  13. Suzanne at 8:39 am

    Hello everyone, I thank you for your kind comments! As one of you said, & it’s true, I don’t want or need a medal. It is what it is and was what it was. But for Thomas, I was first hit by a car, when a man ran through a red light. Then I had 8 surgeries and 8 yrs of PT/OT and 3 yrs of M-F Brain injury rehabilitation for a Traumatic Brain Injury. After all of that, and including a pacemaker, a heart attack and a stroke, I ended up with “severe systemic full body RSD/CRPS disseminated”! There are more painful DX from A to Z, but I don’t wish to bore anyone. So I was very young when this happened at only “just turned 40”!
    Also for Maureen,I’d like to let you know my point; and it’s definitely NOT wanting anyone to ever go through this kind of pain and agony! I’m a health Advocate. I Fundraise and I write for RSDSA & I am “family” with the Orsini’s from RSDHOPE. I’m a writer, Author and a blogger because I fill my most painful times trying to help advocate for myself but others as well. I’m an Ambassador for US Pain Foundation and so I’ve been learning from them also how to advocate by writing and even if possible, visiting the state Reps and Gov. To get their help for us, so nobody else will have to go through what I went through. I make advocacy videos and then I had been an Interpreter for the Deaf, before this happened. Therefore I’m unable to interpret any longer due to hearing loss from the TBI, and due to pain issues; but Now & again I do a video to an uplifting song in ASL; to help cheer up others and keep us all going. I don’t want to give up or let my friends give up. I try to help others by telling parts of my story. It makes us feel less vulnerable and less alone. I suppose that is my point, Maureen. I also fill some of my time resting because of pain, but I don’t dwell on it or compete regarding it. I own my pain and only I know mine. Each of us has our own pain also that is ours alone and nobody can know it, the feeling of it, except the person experiencing it! It’s not anyone worse or better than another, because we all have our own worse & better. But my point again, is to help others to know that they’re not alone. To also let the non pain persons know what we are all going through! Like I always say-“Hope is a Verb! You must DO something to have it & to keep it.

  14. Constance at 10:39 pm

    My PCP dropped me in March 2016, right after the DEA sent letter with their suggestions about the crack down on pain meds.
    I was with this doctor for 4 years with NO problems with meds. I had to go cold turkey was taking 240 mgs oxy per day for over 3 years…cold turkey was PURE HELL!
    And to make things worse, my cat had to be euthanized-he was 2 months shy of his 21 birthday.
    Now I suffer every single day with chronic pain (MS, back pain, pelvic pain, carpal tunnel and headaches). My new doctor has me on so many drugs that I have to take other drugs for the side effects. I now have chronic diarrhea, which I have to take meds to control. It’s so servere that I now have hemorrhoids (2 more meds added to help with that pain). Consequently, I have to have surgery on hemorrhoids (sorry, so embarrassing)
    Now he thinks I may have Fibromyalgia.
    For the past two nights I have been so depressed that I had to call the crisis line 2 nights ago (at 3 AM).
    I told my doc that the Tramadol causes me to have dark and foreboding thoughts, (literature said it causes suicidal ideology), but he prescribed them anyway.
    I can NOT live like this much longer. Desperation knocking me down.

  15. David at 10:28 pm

    Suzanne,
    Thank you for your storiei got hurt in 99 and understand your pain and some people cant I am tired of people putting people down and not understanding people with pain the list of my issues is to long to write and thanks for expressing yourself i myself deal with pain the doctors are getting introuble for what they went to school for. People with diseases are dieing every day i have been reading alot of this site also brittle bone disease runs in my family i hope you well and negitive people just try to ignore.

  16. Linda Dulin at 4:15 pm

    Dear Suzanne,

    I too, was caught up in the drama that happened when the Feds decided that opioids were a bad thing only I had been on Vicodin at a pretty high strength for 30 Years since I was attacked by some street people hanging out in the City I worked for’s Parking Garage. I was a single mom with 2 teenagers and 3 men decided they were taking my lunch away from me. They knocked me down on to the concrete floor where I fell on my right hand first. Needless to say – that lead to nerve damage and a dx of RSD (now CRPS) of the right upper quadrant. That caused me to develop Carpal Tunnel Syndrome. I settled with the City that was privately insured and I continued to have worse and worse problems till I had to file for Disability. Now at 63 I am 4 Years into a dx of Secondary Progressive Multiple Sclerosis. Until 18 months ago I was still on Vicodin when the big Fed Scare happened! My GP whom I absolutely love said I needed to get off of Vicodin in 3 months or find another Dr. to dispense mine as He was not going to dispense it after that time. I was off in 6 weeks on my own! Now I take pain meds only when I really need them because I am now the proud user of 2 Medtronic Spinal Cord Stimulators! I have a Pain Interventionist who gives me injections when I need them, but I am on no opoioids! I am quite pleased with myself about getting off of the Vicodin by myself, but then I really did not have terrible withdrawal symptoms due to the fact that my Pain Interventionist helped me with Pain Injections when things got rough! So Congratulations on getting off of opoioids on Your on from one who knows the struggle very well!

  17. Constance at 1:53 pm

    I say we all flood the DEA, CDC, Congress, President, doctors (and whomever else we can think of) with Skittles or something similar that represents pills. Like the teabaggers did…

  18. gerard l becker at 1:26 pm

    Dear Suzanne—an incredibly moving story!
    Your efforts are to be applauded and your journey, perhaps known only to yourself as you went round and round that revolving door, extraordinarily heroic and stoic! Yet , like you living in chronic pain, I have experienced a similar path and I am sure it is true of many others! What you wrote is not shocking (EXCEPT PERHAPS TO THE NON-PAIN COMMUNITY) !! There ARE NO MEDALS PINNED TO OUR CHEST BUT OURS IS TRULY AN OLYMPICS OF THE SPIRIT!–a fellow pain warrior and facilitator for the ACPA -NYC

  19. Maureen at 9:08 am

    Suzanne, Happy New Year!
    I’m proud of you for the hard work you’ve done to change your med intake and hope that your pain levels are well controlled??
    I tend to think that many of us have been through the same as you.
    I myself took myself off meds twice in the last 2 yrs. only because of how the doctors were treating me, changing my meds from month to month, making me very ill with side effects from being on the ‘new med of the month’, then discharging me and throwing me to the wolves simply because I would tell them that those meds were putting me in more pain and feeling sick etc.
    I would never do it on my own again. I was all alone going through it.
    I would wean myself off of them just because I could NOT deal with the side effects. But…it put me into a whirlwind of horrific pain and desperate need for relief.
    I learned just how much my body hurts without treatment.
    I eventually found a doctor back in March who understood and put me back on my original treatment with the least amount of side effects for me.
    He is now leaving the group he is with in Jan and once again…I have to find a new doc…my 6th in 2 yrs, at no fault of my own.
    So, please take no offense, but I’m wondering what your point is?
    Are you encouraging us to do what you did?
    From what Ive been recently reading about the upcoming 2017 gov’t reports…
    we will all be going through difficult med changes again this year.
    The treatment of ‘controlling pain’ properly has long gone right out the window!
    God help us all.

  20. Tim Mason at 6:13 am

    Sounds like you were being treated during what I call “the transition years”. These are the years that chronic pain treatment was transitioned from GP (PCP) to Pain Management Professionals. I was there too For me the year was 2008. It used to be that most pain was managed using over the counter formulations i.e. Tylenol, aspirin, ointments, etc. Yet, some of us reach an age when our inherited genetics kick in. It is said that “Genetics loads the gun and lifestyle pulls the trigger”.
    The genetic enigmas manifest themselves as morning stiffness, pain that does not seem to respond to BC powders, acetylsalicylic acid, acetyl para-aminophenol and mentholated rubs and ointments.
    Many became victims of pharmaceutical sales scams – sublingual fentanyl, etc when they did not need such medications. Youth were prescribed narcotics when bed rest and head and cold treatments would have sufficed in due time. They received medications reserved for the aged and those with pathologies indicating something more sinister was at play.
    Sometimes the truth can be a hard pill to swallow.
    I ran from spine surgeons that told me I needed a fusion. On more that one occasion I told them they were crazy. Alas, the weekend warrior is a warrior no more. We become the old person we were destined to be. Due to genetics some of us fail sooner than most. For us there is the Pain Management Professional. Hopefully we get a physician who has empathy for the geriatric class of citizens. Some of us trying to milk a few more months or years out of our professions. Others, trying to milk a few more years out of life itself.
    No one can cheat death. We all have an appointment to keep. Getting there is not always easy.

  21. Michael Bellas at 4:31 am

    I just wanted to let you know you’re very brave to do what you did. I also have the same disease and I couldn’t imagine going through that. Your story was inspirational to me stay strong

  22. Joseph DiCapo at 3:55 am

    Im sorry for all your hard times maam… it is certainly your CRPS.. So many Drs have no clue and its not really their fault… CRPS is just that complex… the dr who said u should never been put on the fentanyl is 100% correct… its sux u had a week of hell but u should be happy that its out of your system. My only suggestion is to research research research.. find the dr u need.. compassionate, personable and caring.. it may take some time but will be well worth it in the end.. some good points of reference online are sites like vitals and other dr rating sites. Then also do a search on propublica for drs in your area and their prescribing habits.. im not saying find any dr feelgood but it will be alot easier knowing which drs to research when u know their prescriptions that they are not afraid to write… best of luck w such a hard disease to live with… CRPS is also referred to as the suicide disease at times… i really really feel for u…. but remember there IS a dr somewhere out there for u just waiting to help u… ur task is to find them and now u have the tools… best of luck in your journey!

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