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Chronic Pain Patients: What is happening?
  1. #1
    gomphrena is offline Junior Member
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    Default Chronic Pain Patients: What is happening?

    Hello, this is my first post on my first official thread. I've been observing and reading many threads, largely on the "Need to Talk" forum, but I didn't find a situation like mine, so I'm posting here in hopes there might be others who share the predicaments we chronic pain sufferers are now finding ourselves in. My purpose ranges from gathering a forum of people in chronic pain who need or want to vent, talk, or otherwise communicate. There is a very large segment of the population that have been betrayed by certain government agencies and our dilemma is just now being looked at as a human rights violation, which could have far-reaching effects for all of us.

    So, if you are a patient with cancer, Fibromyalgia, MD, MS, CRPS, DDD, DJD, TMJ, PTSD, or any number of other chronic conditions I haven't mentioned but are certainly included under the huge umbrella of a condition causing chronic pain, here is your forum to speak and exchange ideas, how you cope, what's happening on your State Congressional level, etc.

    Hopefully, this will flourish and become an avalanche after I've rolled the first snowball. (Ouch, I realize some of you may not want to hear an analogy about snow right now where you live!) because, inherent to our lives with chronic pain, any of us, including myself, may not be able to post regularly. That's OK. I've found that no one really understands the chronic pain experience except .. you guessed it. The fellow chronic pain sufferer.

    A short bio: I'm 62 and have been in what doctors determined as a state of chronic pain since 2009. My main diagnoses are Fibromyalgia, chronic Lymes disease, Degenerative Disc Disease, Degenerative Joint Disease, Osteoarthritis, and PTSD. Vanderbilt University Medical Center referred me to a cutting-edge pain doctor, and he quickly found the diagnoses that had escaped previous doctors. We found the perfect pain regimen that worked for me. Though I had become disabled, this doctor helped give me my life back. He had authored 2 books on pain, and went on to write 2 more as he completed his research. But all good things must come to an end. He was 74 years old, and the winds of change began to blow. He retired, seeing the storm that would become a full-on hurricane onslaught that would become the chronic pain sufferers' nightmare that continues today: the meltdown and implosion of the system that had once had patients' needs at heart, now victimizing and criminalizing us.

    Now, your turn.
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  2. #2
    gomphrena is offline Junior Member
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    Well.. well. Not exactly sure what to say. I took up residence here, only to find out it's a deserted stretch of highway, and my house is the only one here. There are several enclaves elsewhere, some quite large, but I've yet to make contact with any neighbors here who might live just beyond the next hill. I guess I shouldn't feel a little sad, I should be celebrating because there is no one nearby who is fights the daily pain demon, besides me. So I should be glad. I'm not sure if I should disassemble my new home here, or let it stand as a sentinel of sorts; a tribute marker to those who either moved on, or checked out. The latter being what might have happened if help came too late, and there was no relief in sight..

    My humble heart goes out to them, wherever they may be..
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  3. #3
    Mackcuff is offline New Member
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    I am sorry that you feel alone. Unfortunately, you are not the only one who has suffered from the abuses perpetrated by our government's agencies. I have realized that we are only victimswithout voices. I have lost my medication because my pain management practice was required to lower their amount of prescriptions and their patient load. I live in indescribable conditions because I have lost my independence. I am only 53 years old yet I am dependent on my friendsand family to assist me in even simple domestic chores and personal care. I was bitter but I realized that my anger didn't help those who have dedicated their aid nor did it give me comfort or solace. I hope you find that although you feel betrayed by those we pay to protect our rights and welfare, you are not alone nor are you unworthy of relief. I wish you well.
    Mack
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  4. #4
    gomphrena is offline Junior Member
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    Thank you so much for your kind words. I did physically cringe when I got to the part where you lost your meds due to downsizing patient loads. I can't help but wonder how the clinic made the decisions of who stayed and who went, given your afflictions. Perhaps it was done by length of time as a patient with the clinic. Whatever the reason, I'm sorry you have had to suffer.
    When this brouhaha started, I really thought it would blow over, much like many initiatives I've seen the government start. I still can't get a handle on understanding WHY. I didn't mean to sound hopeless or hapless in my posts -- actually I'm thankful for the God I love and want to get back to concentrating on serving Him; He's gotten me through some really rough times with the illnesses.

    Have you, or would you, consider Medical MJ (if I'm not mistaken, the Mods will suspend or censure me for actually printing the "m" word) if it were available in your state? I'm in Tennessee and there's currently legislation that is moving through the Capitol right now. I am all for it! If it helps chronic pain survivors at all, I see no reason not to try it.

    Another question I have is are you on any other Pain Clinic waiting lists? There must be a lot of us, because I called a nearby clinic to get information, and they currently are booked up solid for 13 months. Over a YEAR! I'm aware some patients can stoically wait that time out, but there are many more who would look at that as a death sentence.

    Again, thanks for coming by; I want this thread to be a safe, non-judgmental gathering place for people like us. God bless.
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  5. #5
    gomphrena is offline Junior Member
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    Hello, it's me..L



    Did I show my age with that 3-word stanza just now? Who sang that??

    Hello, it's me..
    I've thought about us for a long, long time
    Maybe I shouldn't but I've been in too long
    Maybe I think about there's something wrong,
    Oh, shoot. Can't remember diddly. I do have CRS Syndrome, and it's not "Can't Remember Songs." Oh, no, no, no. It's SHort and I think it's To the point.
    Anyway, it's me, Gomphrena. That's my Username and it's a really pretty flower. But I chose it because, down here in Southeast West Tennessee, we say we're "messin' an' gommin' " when we refer to whatever it is we're doing, at any given time. So we can "mess and gom" doing just about anything, except for work. You never mess and gom on the clock.

    Now that THAT'S out of the way, I'm checking in on my little home thread after I've been out visiting (messin and gommin) in the "Need to Talk" neighborhood. I must say, the neighborhood over there is always lively, with lots going on - most of those good folks are in various stages of active addictions; many are in recovery. But they all, like this "General" 'hood, have a story to tell. Just like we do. Er, well, I do. And Mack. Mack, how are you doing on the reduced dosages? I hope you're feeling better since my last post here almost a month ago.

    I don't.
    Oh, I try to stay cheerful - a merry heart does the soul good - so, oftentimes, I keep up silly or fun banter while I'm dying inside. Oh, not really dying, but more like every cellular entity in my body is in pain. Don't we all do that to a certain extent? We don't want to yada yada about how terrible the pain is - Fibro, at its very worst, has been likened to having the flu, getting kidney punched repeatedly, walking on nails or hot coals (Gosh! That reminds me of Hawai'I right now - please pray for them as the volcano eruption and fissures are causing widespread damage!), someone twisting your arms behind your back, a concurrent migraine. ..I could go on and on, but you Fibromyalgia sufferers know the drill. Lymes disease generally presents with the same set of symptoms, so I don't try and figure out which painful process is what, because it doesn't matter.

    Then there's the shoulder. I had surgery on my Rt. Shoulder in March for a torn rotator cuff, bone spurs, adhesive encapsulitis (frozen shoulder), and bursitis. I had daily physical therapy for 2 weeks, then 4 weeks of 3x week, and now I'm 1x week for 6 weeks. The therapists gave me a big elastic band and a rope-and-pulley system, among other independent exercises, to do at home. So there's that, and I was really surprised at how slow shoulder recovery is! I don't know how athletes do this. Oh, I guess I do, too. They don't have Fibro and Lymes, and they're not 62 years old. If any of you have ever had to finger-walk up the wall, you know what I'm talking about!

    Let me say this, and I'll quit rambling for a while. I don't know if there is anyone here in the "General" neighborhood who is in Pain Management, but I am and have been for 9 years to battle the pain, with what is now inadequate since all the recent dosage decreases and discontinuance of some. But this month my pain was exacerbated by one of the physicians at the clinic last month. Those of you with Fibromyalgia know what can happen when you undergo undue stress, trauma, etc. Last month, one of the Nurse Practitioners was typing away (some hardly look at you or talk to you, they just type) and re-ordering my monthlies, when she stopped abruptly and said the doctor last month was going to discharge me this month if I came up short again! (This clinic embarrassingly counts your remaining pills each visit) I drew a deep breath. Then she said that because I had just had surgery, she'd let it go. I WAS SHORT 4 PILLS, PEOPLE. FOUR.

    I didn't think to say I had taken my last dose the night before.
    I didn't think to remind her that they had discontinued my long-acting opioid the end of January, to get me down to the 80 mme that the powers-that-be in Washington or wherever want us pain patients to be at.
    I didn't think to tell her that the doctor who wanted to discharge me would not work with my Orthopaedist, therefore having nothing for pain control for shoulder surgery except my maintenance drug (which was originally ordered for breakthrough pain while I was taking the long-acting on a scheduled basis.

    Another worry that sent me straight into orbit on a painful flare lasting most of the month: We have random urine screens (which I also find humiliating when you think about it) and a few months ago, they said I "tested positive" for "Demerol metabolites" and I nearly jumped through the ceiling. They LAUGHED and waved it off, telling me there's about a 20% FALSE POSITIVE rate with these tests. WELL WHY DO THEM????? To satisfy the State, I know! But you see where I'm going with this? There's so much room for abuse on THEIR part! If they don't like me, all they have to do is mess with any of the above, and I am OUT of there. And I'm totally innocent. That's what scares me out of my wits, and I have no alternative. Other Pain Management practices are booked up over a year for new people.

    Oh, I did my due diligence on the "Demerol metabolites." Turns out, Benadryl can cause that to show up. Needless to say, I stopped taking that at bedtime. Maybe my new choice of Melatonin won't metabolize so strangely. Demerol! Can't get over that. Maybe 20 years ago for a dental procedure? Demerol has not been given in ages to patients.

    It's a crazy world, I'm in a Fibro flare, and I'll probably be short this Thursday when I go for my appointment. For real, this time. I haven't counted them because it is what it is. I might have to move from this neighborhood into "Need to Talk?" Manor because if they discharge me - after almost 10 years! - I'll need intensive aftercare to get through the withdrawal, and I'll lose the migraine med, my Flexaril, and my Duexis.

    It's a shame. But thanks for listening.

  6. #6
    gomphrena is offline Junior Member
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    Wink

    I also meant to give a shout-out to Catrina, who lives in Need to Talk? Manor. Let me tell y'all right now, she is the royalty of this suburb. She is the First Lady of this entire city. I've hovered around since last fall, reading and getting to know her and others such as Hope, Beef, DravenD, Randy, Lvg, Chief Che (gotta love it), Ryka-Leah, Somo, Blondie (where IS she?), Dave P., and others (sorry, guys, it's the CRS, I swear) and more recently OKC and oh golly there are so, so many that have imprinted on my heart. Don't feel bad if I didn't list you ,just know I've read your every word.

    Yes, Catrina, there is a reason I've landed in this little city, in these neighborhoods. I can see your house from here, and I see the new house you built for Hope, too. (Hope, a lady after my own heart. Hope! I feel like I know you well, and your given name is so fitting!)
    I can see who was it? flying around whooshing by on her broom just to say hello and checking on the good folk in your 'hood. In fact, I feel like I know you ALL. Please don't think I'm weird or a stalker - these ARE dangerous times we live in - just know I can be a friend to most anyone. I need to stay in this General 'hood, because the nature of my dealings with opiates are, for now, different than most here, and my posts would or could be detrimental to the sweet souls who are progressing with taking their lives back, diametrically opposite to what I'm doing.

    That said, allow me to thank you, Catrina, for the warm and inviting (and very complimentary, but you'll change your mind, just wait!) post that I was so pleased to see. (If Catrina likes what you write, I feel like she not only signed the back of my T-shirt, she autographed her 'book' with a personal note to me; AND she stopped and took a selfie of the two of us. I'm just glad she can even hear me, what with being so far up on that pedestal I've got her on! Don't tell her any of that, okay, y'all? Pinkie Promise.)

    Anyway, here's my Thread, and I totally understand if there's mixed feelings or trepidation in visiting me in my General 'hood. We're fighting our own demons, whatever they may be. Cat, I agree that there are parallels here, probably deeper and stronger than either one of us know. If I know anything, it's how incredibly strong and disciplined you are; others here, too.

    Thanks for the invite, Cat.
    I'm home.
    Dang, who's cutting onions up around here?
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  7. #7
    Catrina is offline Diamond Member
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    Quote Originally Posted by gomphrena View Post
    I also meant to give a shout-out to Catrina, who lives in Need to Talk? Manor. Let me tell y'all right now, she is the royalty of this suburb. She is the First Lady of this entire city. I've hovered around since last fall, reading and getting to know her and others such as Hope, Beef, DravenD, Randy, Lvg, Chief Che (gotta love it), Ryka-Leah, Somo, Blondie (where IS she?), Dave P., and others (sorry, guys, it's the CRS, I swear) and more recently OKC and oh golly there are so, so many that have imprinted on my heart. Don't feel bad if I didn't list you ,just know I've read your every word.

    Yes, Catrina, there is a reason I've landed in this little city, in these neighborhoods. I can see your house from here, and I see the new house you built for Hope, too. (Hope, a lady after my own heart. Hope! I feel like I know you well, and your given name is so fitting!)
    I can see who was it? flying around whooshing by on her broom just to say hello and checking on the good folk in your 'hood. In fact, I feel like I know you ALL. Please don't think I'm weird or a stalker - these ARE dangerous times we live in - just know I can be a friend to most anyone. I need to stay in this General 'hood, because the nature of my dealings with opiates are, for now, different than most here, and my posts would or could be detrimental to the sweet souls who are progressing with taking their lives back, diametrically opposite to what I'm doing.

    That said, allow me to thank you, Catrina, for the warm and inviting (and very complimentary, but you'll change your mind, just wait!) post that I was so pleased to see. (If Catrina likes what you write, I feel like she not only signed the back of my T-shirt, she autographed her 'book' with a personal note to me; AND she stopped and took a selfie of the two of us. I'm just glad she can even hear me, what with being so far up on that pedestal I've got her on! Don't tell her any of that, okay, y'all? Pinkie Promise.)

    Anyway, here's my Thread, and I totally understand if there's mixed feelings or trepidation in visiting me in my General 'hood. We're fighting our own demons, whatever they may be. Cat, I agree that there are parallels here, probably deeper and stronger than either one of us know. If I know anything, it's how incredibly strong and disciplined you are; others here, too.

    Thanks for the invite, Cat.
    I'm home.
    Dang, who's cutting onions up around here?
    WOWZER Gom. I think my head just grew several inches. Thank you for all those compliments.

    I'm glad that you posted here making it easier for me to find you. I have no idea how I missed this thread; just know I didn't intentionally ignore it. I just caught up with the posts and now I know your story. I cringe when I hear the things that pain management patients have to endure just so that they can get adequate pain relief. I do know and understand how all of you have been affected by all the newer legislation that ties the hands of these healthcare professionals who can't prescribe what they think would be appropriate because government is restricting them. I also apologize for all of us who have abused the system helping to launch these changes. I wish I had some answers to make this entire mess better but I don't. I'm afraid that that ship has sailed and there just isn't any going back. The pill counting and the urine tests that are thrust upon all pain management patients is humiliating.

    I wish I could say that I'm astonished that there are still healthcare providers who continue to have this condescending attitude to their pain patients. Shame on them!! This nurse practitioner, who by your description treated you so shabbily should find a nice primary care office and get out of the pain management business. While I understand that it can't be fun to work and always be in fear that legislation or guidelines might be violated with the sweep of a pen to paper, it doesn't excuse what appears to be some apathy. Having said this, I do have to add that more recently I have noticed that at least some of the judgement placed upon pain patients as well as those who abuse their pain meds is beginning to slip away. It's hard to find anyone who hasn't been touched by addiction either themselves or with someone they love. It's pervasive, unfortunately. However, while the medical atmosphere is improving with more compassion and understanding, it's become a double edged sword because they continue to be even more conservative with writing those scripts, so afraid are they to add to the problem or being accused of abusing their script pad. This is a very good thing for patients who have found themselves abusing their meds either intentionally or not, but patients like yourself have become trapped in the mess. I'm really sorry.

    I hate the practice of booting pain management patients for violating their contract. Hate it! I do understand that these providers have to be diligent to help ensure that their patients don't get into trouble with their prescriptions and I even understand that there are times when it's reasonable and right to discharge a patient for those abuses. However, wouldn't it be far more humane to at least try and help them by setting up a taper plan and to give them a chance to get off their pain medication without having to suffer? Of course there will be a lot of folks who won't be able to stay to plan and perhaps it will become necessary to discharge them but under no circumstance does it make sense to me to just boot them out of the practice without attempting to help. There's the fallout that comes with this. Never in a million years would I have thought that I'd to to the streets to get my pills but I did and that's when my use got totally out of control. The streets don't care how many pills you buy so long as you have the money. I don't know what the answers are. I'm just sorry that you are stuck in the middle of this mess.

    Now that I've found you, I expect that you'll post here regularly. I applaud you for not being bitter and are willing to communicate with those of us who quite unintentionally helped to make it so hard to get the treatment you deserve.

    Peace,

    Cat
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  8. #8
    hopes1211 is offline Senior Member
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    Gom - you fit in very nicely in our tight knit little group here. You are just a couple years older than me, and our paths are much the same. I am sorry you are going through what you are going through. It stinks. It really does. I go to an internist and just have a small amount given to me monthly... I think it's the people who are on H and Fen... and all that, that has made it impossible for people with real pain to get help. That's just my opinion. I know, prescription drugs are supposed to lead to drugs like that. It doesn't for everybody. I would not purchase illegally. Mind you, I am not judging people who do. I am not. I am just saying I wouldn't.

    I am astonished having a Republican president who bucks the system every chance he gets, especially about regulation, would allow the government to step in, per se, to doctor's offices and pharmacies and basically tell them what they can and cannot do. To me, it should be left to the medical society. They should review their own and determine who is a quack and prescribing too much, etc. They are out there. My sister died because of one. However, just like teachers, lawyers, etc. a peer group of their own should be the ones to determine. They have knowledge of the illnesses and pain people go through, not some President who likes to ride on his high horse. I don't mean to make this political, but I guess I just did. To me though, he needs to mind his own business, and let the medical society police their own. That is just my opinion.

    You will have to come over to the House that Cat Built. It is so cozy and beautiful. Cat did a great job. When we can, we get together and have coffee. Sometimes we have a dinner party. I am trying to become more social again. Very hard once you isolate yourself. Work, come home, work, come home. It's really something I have to force.

    I'll write more later. Glad you came over to our side of the fence. Sometimes it is so quiet on here, I wonder if everyone has left. Other times, it becomes very chatty. It goes in phases. We had a time when people were getting banned right and left. I would have to go on their "vacations" for not saying something in the proper context. It almost made me leave until Cat built my house. I came back and try to be a good girl. LOL. It's hard some times.

    Have a great day.

    Hope
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  9. #9
    gomphrena is offline Junior Member
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    Oh, Cat and Hope, my newfound online besties!

    Sorry about typos and grammatical errors. Instead of a laptop (I haven't even opened mine since 2008 - the technological equivalent to the Dark Ages) -- I use my phone because lying down with head and shoulders propped up is the only way I can get comfortable reading or doing stuff online. Cellphones are definitely not the best when it comes to actively participating in these tiny threads. But I'll have to admit, I'll use my cell any day if it helps keep the ol' pain at bay! At least for a little while.

    I hope you don't mind me posting a note to both of you concurrently this time -- when I got home and got settled awhile ago, I was pleased to see your post too, Hope! My husband Steve and I had been to our regular monthly visit at the pain clinic today. (He's also a chronic pain patient. He got hurt at work a few years ago, was laid up a year, company got lax and put him without a helper and he got hurt again, requiring surgery that time; two doctors advised him he was done working, so he retired on a disability in 2013, after 30 years with them. So we go together to the pain clinic.)

    Anyhoo, I'm excited to see you both in my new digs! Kinda quiet around here in my neighborhood, which may not be an entirely bad thing. (Have y'all looked over some of the old threads here? Some are downright scary.) I'll tell you about visitation at the pain clinic today before I say goodnight, as I want to now launch into my epistle that I've had rolling around in my head since I read what you wrote, Cat.

    And how you wrote. I thought I felt a deep kinship to you as I read along from 2010. But after reading what you wrote in your last post, my head just exploded and I took the better part of a day or two to understand; to let it all sink in (after I picked up the parts I thought I needed and put them back in my head, of course). I was so totally overwhelmed at your feelings of guilt and contribution, along with many others, to this opiate fiasco, I knew I'd have to choose my words carefully, lest I sound contrite and superficial. Just when I need you and Hope both to see my body language, only words will have to do. If you could just see how I want to hug you and somehow let you know that, no, no, NO, the opiate issue was not borne of ordinary people (not that you're ordinary at all, quite extraordinary!) who made a few bad choices years ago. It didn't start with bad doctors writing good people scripts with abandon (insert a virtual hug here, Hope), although these things contributed in a miniscule way. And, as far as people who had physical trauma who sought out ways to continue the blocking pain signals, what normal human being does NOT want to feel better? No, I believe down deep it was a huge operation, bigger than we even realize, and was getting bigger and bigger, as those who were making the most money off of it got greedier and greedier. I'm talking about such grandiose schemes and operations moving back and forth across our borders. I'm talking about hundreds of thousands of pills -- opiates -- and millions upon millions of dollars. Did y'all know that I-40, that runs east-west across the country, is a major, major artery moving drugs back and forth cross-country? This interstate happens to run across Tennessee, and is how we go when we go to Nashville, and points beyond, from West TN. There are always, without fail, K-9 patrol units -- State Troopers -- parked every five or 10 miles or so. (We usually see them waiting and watching, but today, I-40 in Middle TN was a sea of blue lights and German Shepherds! They were sniffing everything in sight today!) Anyhoo, Cat, I was so moved by your responsibility -taking, it just cemented in my mind what I already knew about you. But I'm convinced it's such a massive deal that it's the big guys they want to take down, and to use a worn-out cliché, just "follow the money." Probably will prove more difficult for the kingpins as we move to being a cashless society because I think, but I'm not sure, you leave electronic "tracks" when you go cashless. But as technology improves, so will the methods of the criminals. So, take heart, ladies. It's way beyond us, and tribulations will increase as time goes on.

    Now then, my monthly visit at the house of horrors -- I mean the pain clinic! Our appointments were for Thursday the 10th. Last night, as I put my phone down, behold! A new message. From the clinic! I'd already confirmed for Thursday. This one said Wednesday! Called first thing to tell them. No glitch, said she. We were scheduled in twenty minutes, so could we get on up there. Hmm. We live 75 miles away. Don't think so! So I got her to schedule afternoon appointments. She said she was very glad to do that because the office (being a satellite) would be closed on Thursday and Friday, as they always were! (Yet you scheduled it in April and had a month to catch it? The computer wouldn't have kicked it out? Fehhhh!) So we made it in, and they had me pee in a cup right away. Uh-oh, this can't be good, because I peed LAST month, even though random can happen like that. Sure enough, my urine flagged for Hydrocodone! Oh, for...are you serious? SERIOUSLY? ! I take nothing scheduled except Oxy. They d/c'd long-acting morphine around first of the year. And I haven't done as well. They have to keep chipping away until you're under 80 morphine milli-Equivalents, an amount set by the government instead of your doctor and you, according to needs of the patient. I haven't done as well -- Cat, I could be a gobbler too, you just don't know -- but I'll reserve that for a later post. So now they're finding a drug foreign to my system! Last took a Hydro in 1995, I think it was, when I had a cyst removed. Wasn't even a script -- they gave me two. But it's in my urine at the April visit. Right. Oh, it gets worse! About 8 months ago, Steve and I both showed Demerol metabolites in our urine! So we fly home and I got online and found that Benadryl, which we were both taking I cap at bedtime, can sure enough undergo a physiological chemical reaction and produce this. We decided no more Benadryl! So today, the doctor says "don't worry about it, we'll get verification." DON'T WORRY about it!!?? What keeps it from being right to begin with?? So I'm good to go for another month, and then today's urine will make or break me.

    I hate to say it, but Steve and i would both refuse to participate in this pony-and-dog show if we weren't getting a certain amount of relief from the medicine we DO get. There is SO much more crazy stuff I can entertain y'all with as I continue to post. I don't want to bore you to tears, so I'll wrap up here. I still can't get over such a sweet welcoming party that both of you -- Catrina and Hope -- have gone to the trouble of visiting over here. I know for sure that I do NOT want to overstay my welcome just because of our complex relationships we have -- or don't have -- with opiate therapy. In other words, would reading about that sort of thing be like drinking around an alcoholic? Heaven forbid that! And I can easily zip my lip if it even remotely was causing any sort of...how do I put it...jonesing? Or am I overthinking it? Anyhoo, I'm very glad I found this forum, and yes Hope, I'd love to come visit your Home that Cat Built because I smell the coffee brewing over here!! Oh, and one final word..I will most assuredly keep my blinds closed, curtains drawn, etc at my house over here in the General subdivision, and more importantly, not bring any baggage with me when I'm over in Need To Talk .. for obvious reasons.

    Gom (I was gonna say "Fran", that's my real name, but I saw a Fran had already moved into an apartment over there. So I'll stick with Gom )
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  10. #10
    Catrina is offline Diamond Member
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    We can call you Fran. I like that. Your story is far different than our other Fran's so it's not at all likely we'll confuse one of you for the other.

    Just wanted to throw out there that this Need To Talk Forum is largely, and sometimes exclusively, people who are posting about narcotics. I can understand, I suppose, that you have reservations concerning talking about your scripts or the pain clinic because it might be like having a drink in the presence of an alcoholic, but no worries!! Every single day we come back by choice and spend some time reading the plight of others with the hope that we might be able to support or help them. it's quite the opposite of what you may think, as odd as that may be. When I read what others are going through, I say a silent prayer and think that, "There by the Grace of God go I". Oh yeah! That was me!

    Well. I'm glad that your and Steve's appointments went well yesterday, or as well as it can be. What a way to have to live! Day to day, month to month and having to subject yourself to those visits every single month. I'm quite sure there's at least a little anxiety as the date of your appointment grows closer especially with your recent run-ins with false positives. I've read stories of others where their pain doctor isn't nearly as understanding as your's appears to be. This month, anyway. Right?

    Don't hold back and post whatever is in your heart and mind. If there are members here who are bothered by anything you might say, then they can just avoid your thread. There's an amazing spirit here at the Forum and the reason we are all here is to just try to make a difference. You are more than welcome to join the ranks. Your experiences are worthy of sharing even when they differ from most of us.

    Peace,

    Cat
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  11. #11
    LenLeaps is offline New Member
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    I have the exact same dx's as you do along with a few other dramatic surgeries scattered in. You're not alone! I chose to get off the merry go round and give my body a chance to get back with it's own natural pain suppressing hormones. It's worth a shot to me.
    Two weeks ago it took jumping through fire hoops to get medicine which I know I have abused having reached an unbelievable plateau. I have previously managed to get off the fentanyl but nother the pills that I always need more to quell the pains.
    I hope you find equilibrium in your journey.
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  12. #12
    LenLeaps is offline New Member
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    Footnote:

    As of May 1st legislation was signed limiting narcotics to a seven day supply meaning yes, we have to return 4x a month and pay 4x as much if a fixed copay. It's all too much dealing with pain and throwing on the psychological uncertainty and added expenses.
    I was also informed yesterday by my pharmacist @ Rite Aide that Walmart will no longer be filling ANY narcotics. The influx is overwhelming the other pharmacies and medications that should have been there normally for me weren't as a result. Additionally, this month already one of the largest manufacturers have been shut down by the DOJ. This is causing a shortage in supply that I fear isn't going to rectify itself any time soon.
    This prompted me to dive off into higher dose Lyrica land and do a rapid Suboxone detox to push through getting off the ever decreasing doses of medications I couldn't taper...I tried but always found myself in such a bad spot. I never thought I'd be here. I'm hopeful that anecdotally I'll be greatful to have been pushed to get off the diving board into the water. I hope I can swim.
    Hope is the word I continuously use. I have hope that my body will somehow reset and balance. I hope not to need anything more than Lyrica and tramadol (if the pharmacy can even provide that in the climate now). I worry that that may be all my doctors and I can come up with, but still I rise.
    The light in me honors the light in you.
    NAMASTE
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  13. #13
    Catrina is offline Diamond Member
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    Quote Originally Posted by LenLeaps View Post
    Footnote:

    As of May 1st legislation was signed limiting narcotics to a seven day supply meaning yes, we have to return 4x a month and pay 4x as much if a fixed copay. It's all too much dealing with pain and throwing on the psychological uncertainty and added expenses.
    I was also informed yesterday by my pharmacist @ Rite Aide that Walmart will no longer be filling ANY narcotics. The influx is overwhelming the other pharmacies and medications that should have been there normally for me weren't as a result. Additionally, this month already one of the largest manufacturers have been shut down by the DOJ. This is causing a shortage in supply that I fear isn't going to rectify itself any time soon.
    This prompted me to dive off into higher dose Lyrica land and do a rapid Suboxone detox to push through getting off the ever decreasing doses of medications I couldn't taper...I tried but always found myself in such a bad spot. I never thought I'd be here. I'm hopeful that anecdotally I'll be greatful to have been pushed to get off the diving board into the water. I hope I can swim.
    Hope is the word I continuously use. I have hope that my body will somehow reset and balance. I hope not to need anything more than Lyrica and tramadol (if the pharmacy can even provide that in the climate now). I worry that that may be all my doctors and I can come up with, but still I rise.
    The light in me honors the light in you.
    NAMASTE
    Welcome!

    Have you started your own thread? If not, you should. There's so many folks around here who will support you and give you tips and/or advice. I haven't checked so if you have started that thread, I'll find it and post there. If not....well then go, go go.

    I applaud you for your bravery and for jumping into the deep end of the pool (you started it with that analogy!). It isn't easy and we all know it. Not to rain on your parade, but be careful of those trams. They can be nasty because they have an SSRI in it so as a result if the time comes that you need to get off of those, they will need to be tapered very slowly. In the meantime, my sincere congratulations for making the decision to get off of the merry go round. Keep posting!

    How are you feeling? It's going to take awhile before you'll feel well both in mind and body but it'll happen. After a few weeks, you're going to find that over the counter pain relievers really do work. I didn't believe that when people told me that but it's true.

    Welcome again. I'm going to go check to see if you have your own thread and if I don't see one, then I expect that I will tomorrow after you have started it.

    Peace,

    Cat
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  14. #14
    gomphrena is offline Junior Member
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    LenLeaps,
    I join Catrina in welcoming you to this awesome place. THIS is seriously where to be standing when the rubber meets the road. The names you'll see repeatedly, by and large, are those who have the best stories to tell. Most from he||-on-earth to clean today, and the documentation all right here, right now. How they did it, the biggest potholes to avoid on the road to recovery, and so on. Unrivaled online support and advice from the people who've been where you are now. I applaud you for choosing to get off the merry-go-round and wish for you nothing but the best. You really have come to the right place.

    ◇Fran◇

  15. #15
    gomphrena is offline Junior Member
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    LenLeaps,

    Wouldn't you know, I have a footnote for you, as well.
    First and foremost, do start a thread so people will know exactly where to find you, as,Catrina suggested. Of course you're always welcome, but sometimes posts get buried and rather quickly. Always good to build your own house in the neighborhood of your choosing!

    Also, I meant to tell you of my experience with Lyrica, that fascinating drug that you either love or hate. In my case, Lyrica was a lifesaver for me. I'm convinced it was THE reason -- along with fervent prayer -- that I was able to continue working for what would be my two final years of work life! The only reason I had to stop taking it was that I had a 40-lb. weight gain (a common side effect) that, try as I might, could not lose even for years after stopping it. Call it vanity, or whatever, but I know obesity can present with a host of other medical problems that I didn't need or want. I'm a big old gal anyway -- 5'7" -- people said I wore it well. Thanks but no thanks -- nobody wears extra weight well!

    It will indeed be interesting how the major chain pharmacies respond to these changes in the pharmaceutical industries and the consumers/patients who take them.

    ■ Fran ■

  16. #16
    JCampbe6 is offline New Member
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    As chronic pain sufferers, we did not start this wave. The fingers of our gov., in an effort to make themselves look better (just my opinion), has unfairly caused the snowball of fear, pain, and insecurity within the chronic pain population. I recently had my medication cut by HALF. It wasn't easy and pain is worse, but tolerable. Yesterday, I took my prescription to usual pharmacy because I let myself run out. Pharmacist said he couldn't fill it without first, speaking to my doctor regarding other meds I'm on. He filled the same prescription last month! It's SATURDAY. I had no idea new legislation was signed on May 1. Our pharmacies could, at minimum, keep us informed. I have no desire to be impaired, and I can't smoke, but I am so SICK of this never-ending uncertainty, I am ready to turn to alternative pain relief. Our pain control should not be government controlled. Everyone who uses narcotics for chronic pain is addicted, but not all are abusers. I filed a complaint with civil rights for violation of HIPPA and ADA, rights and dicrimination, and Walmart for not advising the public regarding their policy. I'm sick of jumping through hoops for a problem which was due to no fault of my own and can't be helped by any other means. If I couldn't function because the pain was so bad in 2005, and aging has done nothing but make it worse, how is it supposed to be better now? I don't have a problem getting off narcotics. I could taper off them and never look back. Never wanted to take them in the first place. I never expect to be pain free. I just want some kind of quality of life. That's what we need and deserve. God bless you all.
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  17. #17
    JCampbe6 is offline New Member
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    By the way, you guys really add some comedy to the thread. Thank you for that. I'm not quite as colorful with words...well, not in the way you are.
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  18. #18
    JCampbe6 is offline New Member
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    I would like to offer some information I gathered by calling the FDA, Medicare and Medical Board. Specifically, regarding the 80 MME, the FDA informed me that these are GUIDELINES and the physician still has the right to treat his patient as he deems necessary. I urge anyone in this to call the agencies who know the truths about these changes. I'm not saying regulations may not have changed since I called 2 months ago, but we have a right to be informed with accurate information. I apologize, in advance, if this posts twice. Take care, stay informed and pass it on to each other. ❤
    J.
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  19. #19
    ladybinns is offline New Member
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    Quote Originally Posted by JCampbe6 View Post
    I would like to offer some information I gathered by calling the FDA, Medicare and Medical Board. Specifically, regarding the 80 MME, the FDA informed me that these are GUIDELINES and the physician still has the right to treat his patient as he deems necessary. I urge anyone in this to call the agencies who know the truths about these changes. I'm not saying regulations may not have changed since I called 2 months ago, but we have a right to be informed with accurate information. I apologize, in advance, if this posts twice. Take care, stay informed and pass it on to each other. ❤
    J.
    thank you so much jcamp for this information. i am so sorry for your pain. i to suffer from chronic pain with millions others. all of these new regulations have only made the pain worse. due to stress of course. i am trying on my own to get off of pain meds and anxiety meds after 25 yrs. please pray for me. pray for us all.
    god bless
    mary
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  20. #20
    gomphrena is offline Junior Member
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    Hello Jcampbe6
    and Ladybinns (Mary)
    I’ve not been “home” much lately (home meaning right here in the “General” Forum in this, the Chronic Pain thread) .. so please forgive me that there was not so much as a greeter upon your arrival, nor anyone to show you where the fresh coffee always is! (Another neat trick having a virtual home here provides - coffee, always fresh, and a platter of goodies that never gets stale, or spoils.)

    Jcampbe6 yes! That’s all true about the guidelines and such. Nonetheless, practically all licensed physicians are so gun-shy, they’ve stopped prescribing to be on the safe side. It’s another reason so many pain clinics have sprung up almost overnight. They’re not going to risk their practices, and I don’t blame them! New legislation is being drawn up as we speak, however; the Feds allowed online input from anyone (until June 12) who wanted to contribute anything to this national conversation. Oh, did I “in my put” and fired off a very heartfelt and stinging (in some appropriate places) epistle to which I ultimately, before hitting that too-late-you-can’t-take-it-back SUBMIT button, went back and used an alias. I know, I know! That might be considered dishonest by some, but I reckoned I might have disclosed some information that might be incriminating about myself, and I didn’t want the ATF showing up at my house at 4 a.m. in riot gear. It was actually nothing to write home about, but one can never trust the government (even though I admit I do like it better now) but OOPS there I go getting political, so never mind. We’ll all just have to wait and see what the brilliant minds in Washington come up with in the months to come.

    Do either one of you keep up with the National Pain Report? Google it and get on their email list. Very good articles from a plethora of contributors such as Pharmacists, physicians, psychologists, bloggers, etc. Very interesting stuff, and comments are allowed and encouraged.

    Again, I apologize for the seemingly empty room when y’all got here. There’s a lot of us, but few ever take a walk down our street. Maybe more will happen by as time passes. To be brutally honest, I’ve hit a new “low,” depression-wise, and that sure is depressing. For the past month, doing anything extra than tasks necessary for life itself became undoable. I was practically in a catatonic state. Seems when I was on the pain regimen that was right for me (took about a year of trial and error with a pain specialist who was one of the best, imho), I was able to discontinue medication for high blood pressure; depression; anxiety; and even Fibromyalgia itself. I subscribe to the position that, if you can take care of the pain, all that other stuff would “shake out” when sifted down. So, a long-term pain patient like myself really can have a productive life. Well, maybe “could have had” is more appropriate here, a nod to the crazy times we’re living in.

    One thing I’d respectfully add is that in general, chronic pain patients are not addicts, we’re dependent. Issues with tolerance are lateral, and not really included in my loose descriptions. The difference is whether or not certain recognized addictive behaviors are present - like running out way early (taking more than prescribed) or changing the form (crushing to snort) or route (up the nose instead of swallowing). But those are just examples. There are more; some subtle and some not-so-subtle.

    Anyway, I wish you both well and post often to get amazing support from people on here. If you are trying to stop taking your medicine and want off and done with it, I’d like to mention the Forum “Need to Talk?” There are unbelievably wonderful over-the-top folks there who not only have done it themselves, they’re helping others get and stay clean every day. Look for “Catrina’s Journey” and there are others too. But they all live in that awesome neighborhood and good things are happening there! God bless!

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