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I give up!

KatrianyaKKatrianya Posts: 5
edited 01/27/2016 - 2:14 AM in Pain Management
My diagnosis: Spinal Stenosis, Spondylosis, Spondylolisthesis L4-S1, Osteoarthritis, Degenerative Disc Disease.

I am a 41 tear old woman with a spinal condition that causes Chronic Pain. I was first diagnosed in November of 2005. I was without health coverage, unable to afford treatment, until September 2015. Life as I knew it was over, I could no longer do even some of the most basic activities. I lost my ability to work, as well as being less able to care for my children and our home. I had no other alternative, during that 10 year period, other than treating myself. I did so by utilizing the Stretches taught in Physical Therapy, OTC Topical Creams, Lots of Advil, Marijuana at bed time, and the occasional use of opioids when absolutely necessary to minimize my pain level. I did not waste time going to urgent care or the emergency room, because back pain is not considered a serious matter and those places are not intended to offer that type of care. Most days I wished for quick death. A life of every day debilitating pain is no life at all.

My only hope was, that one day I would be able to get health insurance, so that I could go to a real doctor who could hopefully work toward improving my condition through more intensive measures, ie. surgery. I was so excited to see the doctor the first time that my usually low blood pressure and resting heart rate was at an all time high. I was giddy at the idea of finally being able to get help. I was ready to turn my care over to him completely. If he had told me to dance a jig while eating gummy bears I totally would have followed his advice lol. I made the mistake of being completely honest with my new doctor. I gave him the list of my diagnosis along with a list of how I had been treating myself. I had hoped that this transparency would allow me to build a relationship of trust and solidarity - I was wrong.

This doctor didn't say two words against Marijuana but was highly upset that I had been buying my meds on the street. I explained that I only took them a few times a month - only when I absolutely had to. I had a logged calendar with all of my pain levels each day as well as any time I had taken medication - he was not interested in seeing this chart. I explained that I felt at the time that I had no choice given that I was unable to afford treatment without insurance, but now that I had a doctor I was ready to turn my complete care over to him.

My new doctor did prescribe me some very low dose opioid pain meds and a muscle relaxer. He was aware that I ingest marijuana before bed and did not request that I stop even though it is not legal in Indiana. I was signed up for multiple clinics and sent on my way. My Xrays and MRI both came back to confirm my previous diagnosis as well as showed the serious degeneration of my spine in comparison to my 10 year old MRI films. So it was obvious to everyone involved that I did indeed have several conditions that cause chronic pain. I was determined to follow my doctors treatment plan, but the treatment I received was not what I had bargained for.....

I took the meds exactly as prescribed,(percacet 5/325 - 3x's a day, everyday) while continuing to do my stretches and exercises. I had a non-pain related issue (cold sore), so I called to request a prescription for valtrax to treat it. They shut down my request on the phone telling me they would not give me another prescription. I told them it made no sense since I was asking for a antiviral medication which had nothing to do with anything concerning my pain treatment. Finally the following day they called to tell me they had changed their mind and my prescription would be filled - which by then didn't matter as my cold sore was already full blown and the meds would be of little help at that point. So be it.

I had a flare up and went to my doctors office to request a cortisone shot (it is an anti-inflammatory not an opioid). I could barely walk and was in tears from the pain. Before I could even complete my verbal request I was confronted by the nurse at the desk with a very loud and rude refusal, saying they would not give me a prescription. I was literally standing there with my little bag of refills in hand. I repeatedly tried to explain that I didn't need a prescription that I simply wanted a referral for a cortisone shot. They were not interested in hearing what I had to say, all they saw was someone asking for drugs, even though I had specifically said I was not there for that. Finally, they told me to have a seat in the lobby and they would see me as soon as they could. They left me sitting there until after closing only to come out to tell me that they had forgotten I was out there and I would have to come back the following week. I asked if they could refer me to the ER or Urgent care for assistance and again they went back to saying that I could not have more pain meds - NOTE: I had not once requested any additional pain meds.

This was par for the course over the next few months. No matter how far removed from the subject of pain management, they always seem to circle back to assuming I am seeking more drugs. I have never in my life been treated with such disregard and disdain!

I finally get into see the first of 2 surgeons. The news was not what I had hoped for. 10 years prior I was referred for surgery but I lost my insurance before I could get in for the procedure. Now, due to the progression of my condition, I was told that I am no longer a viable candidate for surgery and would have to enter long term pain management as my only option. Long term drugs and lifestyle changes. I was devastated. I have no desire to spend my life dependent upon a pill to get me through my day. I expressed my disappointment to my doctor, while he claimed to understand, there wasn't much he could do about it.

Shortly thereafter, I went for my first class of Integrative Pain Management Therapy. I was psyched to get started. Much to my dismay it was not what I had expected. I was now required to spend a couple hours 2 days a week, in a room full of strangers. The class consists of 20-30 minutes of stretching and range of motion exercises. These are the same exercises that I have been doing for a decade, so at least I was good at it! Then we have 15 minutes of Meditation - I am Pagan, so I already Meditate every day at home. The remainder of our time in class is basically spent Counseling us all on drug addiction and depression, and telling us that life is pain, suck it up and get over it. Everyday we are told that we are just depressed drug addicts, and reminded that attendance is mandatory. If we fail to attend they will pull our pain meds.

Later that week I was given a contract to sign. The conditions of said contract were a bit extreme - had to promise not to go to any other doctors or pharmacies, not allowed to request a change or increase in my dosage, no alcohol ( I do not drink so that's no problem) or illegal substances (I had been honest with my doctor about my marijuana use and since he had never said anything about it I didn't realize that it would pose a problem down the road), not allowed to refuse treatment recommendations, mandatory attendance to all classes and appointments, mandatory drug tests, mandatory pill counts yada yada yada.... I was given a drug test to get my prescriptions. I didn't think I would mind it, but when it happened i felt violated. I am not a criminal or a deviate but it made me feel as if I had been accused, judged and convicted on the spot. I only went through with it because I had no other choice.

A couple weeks later I had my first epidural nerve block. It was partially helpful - I no longer have radicular pain in my left leg, but it did nothing for the pain down my right leg, hips or the pain in my L4-S1. Any relief equals success in my opinion, so I am looking forward to my next injection. This caused me to miss 2 classes. Upon my return to class, I was informed that we were only allowed one absence and I had taken 2 - even though when I had called they had told me that both missed classes would be excused. Now they are saying that I will be dropped and my pain medication will be pulled if I miss another class. I have upcoming appointments that would take months to reschedule, I had to choose between those pointless, demeaning classes, or keeping my appointments with specialists that had been scheduled months in advance. The PM contract puts me between a rock and a hard place since I am not allowed to miss either class or appointment.

Later that week, I went in for my refill and was informed that my recent drug test had come back positive for THC. I explained that my doctor was aware of the fact that it would be in my system. They went on to tell me that since it was an illegal drug that any more positive drug tests would result in the restriction and loss of my pain medication. I understand that it is not legal in Indiana (yet), but the truth is, it is the only thing that really helps with the pain. The medication makes my stomach hurt so bad but barely does a thing for the pain. If forced to choose between the two, I would rather use marijuana, which is all natural/organic, as opposed to some chemically altered substance.

The build up of the past four and a half months has led me to the realization that there is no longer any Care in Health Care. From day one I have been treated like a drug seeker, even though I never wanted the drugs, I wanted surgery. They refused me surgery and offered me drugs. Those drugs come along with so many strings that I am simply unable to meet the conditions in order to continue in the program. I had to sit down and consider all of the pros and cons. Are the benefits worth the cost - not just to my insurance, but the cost of setting aside 2-4 days a weeks towards my treatment, travel expenses, and the toll their treatment was beginning to take on my mentally.

I added up the time and expense invested on my part. In just over 4 months, the bills amounted to almost $25,000.00, and with all that money spent I hadn't really been helped much at all. Who is benefiting from all of this? It certainly isn't me! Everyone is getting paid but little has been done to improve my condition. With as much as they have charged me, the very least they could do is treat me with decency, compassion and kindness, instead of treating me like an inconvenience and a criminal. Instead, I am given worthless medication that causes more problems than it solves, while I live under the constant threat of losing those medications, as if they are dangling a carrot for me to chase.

After much consideration and discussing my options with my husband, I have decided to drop out of pain management. I tell myself that I survived for 10 years without their sorry assed treatment. Looks like I will go back to treating myself via google, [edit] , and buying my medication illegally. Maybe I should take up drinking? I don't know what else to do at this point. It would be different if I actually felt like they intended to help me with this condition but every single time I am treated with callousness and disregard just makes me feel worse than I did before all of this began. I feel like they have done nothing more than wasted my time and destroyed any ray of hope that I may have had.

I spent 10 years, hanging on the hope that if I could just get into a real doctor that they would help me. I know now that this is not going to happen. I am 41, other than having a bad spine and severe arthritis, I am the picture of perfect health - not even high blood pressure, cholesterol, or diabetes. The women in my family tend to live well into their 90's. The idea that I may have to live another 40 - 50 years in pain, with no possibility of medical treatment is terrifying. I do not know how long I will be able to force myself to continue with such an existence. Not trying to sound melodramatic but if I were a horse, they would have shot me already......

Lumbar Spinal Stenosis with Synovial Cysts
Diagnosed 2006 at age 31


  • KatrianyaKKatrianya Posts: 5
    edited 01/27/2016 - 2:30 AM
    To further clarify: I have never been on welfare, or applied for disability. I state this because people tend to assume the worst.
    I recognize that lifestyle changes do go a long way.
    I am overweight from loss of physical activity - I would love to be more active if they could curb the pain a little bit. Increased activity tends to leave me bedridden for a few days to a couple weeks depending.
    I rarely eat fast food. We prepare 97% of our meals at home. Most of our meals consist of a protein, a fresh veggie and a carb with milk to drink - we do not eat much processed food.
    I do not have a history of drug/alcohol abuse.
    I do smoke cigarettes but hoped to quit soon (although now I am considering it the only legal form of assisted suicide lol)
    I do meditate, stretch and exercise almost everyday, even when it hurts.
    Lumbar Spinal Stenosis with Synovial Cysts
    Diagnosed 2006 at age 31
  • sandi123ssandi123 Posts: 474
    edited 01/27/2016 - 5:45 AM
    Your frustrations, but there are a few things that I would like to point out that may explain things a bit.
    You have been dealing with your condition for at least 10 plus years. These doctors and clinics you are seeing have been dealing with this for 4 months. Many of us have waited far longer to get imaging, let alone anything other than physical therapy. There are steps in treating back pain that insurance regulations and the medical standard of care say must be followed, before the next step can be taken.....no matter how long you have been dealing with your condition, this is all new to your medical team.
    The use of street drugs, no matter the reason is unacceptable and that includes marijuana. Even if it were to become legal in your state, unless and until, your medical doctor approves your use of it, it is illegal and in most cases would be automatic grounds for dismissal.
    Contracts , with the terms you related are typical in the world of pain management these days and have been for the last 6-7 years now. Doctors will not put their license on the line for anyone who isn't willing to follow the rules in the contract, or is going to use street/illegal substances, once you enter pain management.
    Urine testing is necessary to ensure that the meds are being taken as prescribed, not diverted and that other illegal substances aren't being used. It is no different than a urine test done by your primary doctor for a physical or other appointment.
    As far as the classes go, many pm practices offer them, and it is not a bad thing. It ensures attendance and participation in physical therapy and provides another tool to help ease pain.
    When opiates are used, they are commonly started at the lowest dose, in part to ensure that you can tolerate them, and to slowly build tolerance with minimal side effects. Adjustments are made as medically necessary, and may wind up with extended release meds added at a later time.
    Injections are helpful in some cases, and not in others. One time you may get some relief, but they are not a cure.
    You might want to read a thread called Step by Step to getting treatment for Chronic pain.....it might help you understand the process a bit better. I believe it is under the FAQ section. http://www.spine-health.com/forum/pain/chronic-pain/chronic-pain-treatment-step-step. Remember, these doctors and nurses are just beginning to get to know you. They must deal with patients all day, some of whom may be hounding them for more pain meds,so sometimes it is helpful to remember that they also are dealing with many people, all in pain, and some may not be quite as legit as others.
    Should you decide to quit the pm program, and resort to going back to the streets for meds and marijuana, you are taking a huge risk...eventually, everyone gets caught. With children, is doing that worth risking?

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  • Hi Sandi! Thank you for taking the time to respond. My issue is not so much the restrictions, treatments, or the ridiculous amount of appointments . I simply can not tolerate the disrespectful treatment, or the fact that every single member of the pain management team has literally told me to suck it up and get over it. Reading my PM contract there are a slew of requirements on my part, with very little offered in return. Then to see the fees being charged to my insurance - I have a huge issue with the idea of being treated like a 3rd class citizen by "professionals" how are being paid extremely well to take care of me. I honestly feel that they are bleeding my insurance for every cent they can squeeze out of it.

    So much has changed in the past decade, since I was last in care. I understand the reason for those changes but I can't help but to be shell shocked. The idea of having been literally on the Eve of surgery to being shuffled back to the beginning is daunting. I was getting far better results on my own - cheaper and with far less BS involved. I understand and have always accepted the risks that go along with self treatment. Fortunately, my children are grown and now on their own so that does not further compound the risk.

    I haven't really made a decision yet. Right now I am just angry. I have spoken to several friends going through similar issues and my experience seems pretty darn typical - but I'm still angry dammit! I honestly like my PCP even if he does try to pass the buck and play stupid. I don't see any reason to try to find a different doctor/clinic - running the risk of being accused of doctor shopping, or having it blow up in my face going from the frying pan into the fire with an even worse situation.

    For now I have withdrawn from the classes, have not been told the consequences for that yet. This may get me booted from the rest of the program. Just in case, I have stopped taking the opioids so that my body will adjust prior to having my scripts yanked. I am going to try to remain med free and see if I can indeed "suck it up" and "get over it". Wish me luck!
    Lumbar Spinal Stenosis with Synovial Cysts
    Diagnosed 2006 at age 31
  • dilaurodilauro ConnecticutPosts: 11,348
    are becoming the normal procedure in pain management. They are put in place to protect both the doctor and the patient.

    Over the years, there has been so much abuse, again some coming with the prescription writing from doctors and from patients abusing their medications. The requirement for urine testing, pill counter and more is not intended to be a personal insult on a person's character. Its there for everyone.

    It was good that you were open with the doctor and told him about your self treatments. But I am sure, as with any doctor, purchasing illegal street drugs, even once is going to raise a red flag. You may also not be doing yourself any help by Telling the doctor you need or want a cortisone injection That is their responsibility to determine when and if that is warranted. But by you making requests like that, you just put
    yourself in a bad light.
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Hi Dilauro. Thank you for taking the time to share your thoughts. I absolutely agree about my presenting myself in a bad light. I made the mistake of thinking that all the past records, from my previous 18 months of treatment/diagnosis, would count as validation and show what worked best and what did not work at all for me. I did not consider that my new doctor needed time to get to know me as an individual. My mistake, wish I could go back and change that one.

    I can say, at the time, I was not in my right mind. I was having one of the worst flare ups I'd ever had. I grabbed my insurance card and desperately limped my way to what I assumed would be my ticket to some relief. 10 years prior I had amazing insurance and a fantastic doctor. Whenever I had a flare up, I could just call once and they would get me in within a day or two for a shot. Things are so so so different now and I am slowly learning to navigate (stumble through) the changes. I have not had an easy go of it hahaha.

    Changes I have noticed:
    Xrays and MRI results are much faster now!
    No one uses films anymore - everything is digital.
    They no longer call in prescriptions, you have to get a paper script from your doctor's office and take it to the pharmacy.
    Instead of 1 doctor to treat my conditions it now takes a small army - I currently have 5 different doctors (all with separate locations and staff).
    It takes several to a dozen weeks (sometimes more) just to get into see any of them personally, but you can see a nurse almost any time.
    Hospitals and health complexes now have police, metal detectors and property scanners!
    Patients have to pay to park at almost every facility.
    HIPPA has really cracked down!

    A lot of changes in 10 years. Some good, some not so much but I will get used to it in time.

    Lumbar Spinal Stenosis with Synovial Cysts
    Diagnosed 2006 at age 31
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  • sandi123ssandi123 Posts: 474
    edited 01/29/2016 - 1:45 AM
    You are so right, things have changed significantly in the last 10 years, some improvements, some more difficult to navigate.
    The difference from your previous treating doctor and the ones now, is that the previous doctor had all of their previous experiences with you, your records, treatments tried and failed, but most importantly, they had plenty of time to get to know you....
    As I said in my previous response, these new doctors have had a very short length of time to get to know you and your previous history, coupled with the fact that in terms of your current condition, the information is considered old and not of much value, without new, updated testing, imaging ,etc.
    Believe me, we certainly can co-miserate, jumping through hoops is frustrating, especially when we think that they already have the answer to what's wrong in front of them, and we often assume that the new doctor should and will just pick up right where the old one left off....but it's really not that simple. Things in your spine have likely advanced, so basing your current needs off 10 year old reports could do more harm than good, even injections if done incorrectly or in the wrong location may cause more problems, so it's wise to take time to get new imaging ,new test results before jumping into procedures or therapies that may not help if not given for the right condition.
    Anyway, hang in there, navigating this new world of doctors ,specialties and treatment can be tricky but we can help.

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