My Story: Forced to Change Pain Medications

My Story: Forced to Change Pain Medications

My story is oh so very similar to many featured here, but in a slightly different way. I have fibromyalgia, chronic myofascial pain, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), along with their varied comorbid friends, like irritable bowel syndrome and peripheral neuropathy.

I also have a significant other with three blown discs in his back. Both of us have been on opioids for a long time, and also seeing the same doctor. I live in Massachusetts. I love my doctor, and would not want to trade him for the world. My whole family sees him, right down to my granddaughter.

Two months ago he came into my regular monthly appointment with a disheartened look on his face. I could also see some sadness and regret.

Audrey Liebl

Audrey Liebl

I am on a lot of medications, some of which I’ve been taking for 15 years. It has taken us a very long time to come to the mix of meds that work best for me, and my breakthrough pain med had changed recently. Luckily the new one was doing well and I started rattling off things about my newly diagnosed temporomandibular joint disorder (TMJ) that I, for the first time in months, did not have a headache from.

I soon found out why he was so somber. Our governor had just signed a large bill concerning stemming the heroin epidemic here in the northeast. The reason there are so many using heroin now is because they started to crack down on the pain clinics in Florida and stopping the pills coming up the east coast.

Once there aren’t as many pills, the price goes up, and people turn to heroin. So you’d think they would open more clinics, and get people off of the illegal drugs.

I was not ready in any way, shape, or form for what happened next. I knew they were cracking down on some people, but I never thought that day it would be me.

I went from changing a transdermal pain patch every two days, because I metabolize some medications quickly, to having to change it every three days. Oh, and the breakthrough pain meds that were finally working on my TMJ until I could get my insurance to cover a mouth guard to wear at night? Completely and utterly gone. I’m now supposed to use one of my “extended release” medications for breakthrough pain. It doesn’t work like that.

I have NEVER abused my pain medications, and the only thing my doctor has ever done has been to treat me with respect and treat my pain. Yes, the normal individual would be knocked out by what I take, and if you look at it from the outside, it’s a lot of meds. But I have also been with the same doctor since 1999, and my whole point is that it shouldn’t be looked at from the outside. I do not call my scripts in early. I do not run out early. I take them as prescribed. So why am I being made to do with less medications?

I have gone from having the luxury of going out once a week, maybe twice if I was really feeling well, to leaving the house once a month to go to my doctor’s appointment. I am almost bedridden some days now, after fighting for so long not to be. I have kids and a granddaughter living with me, and I can no longer be in their lives as much. It has put so much pressure on my 20-year old daughter that she has changed college plans partly so she can commute from home and make sure that her parents are okay and grocery shopping gets done, etc.

I know the theory behind the law – you take the pills and heroin off the street, get people help and the “epidemic” gets better. However, how are medications that I rely on to function and put into my body going to help reduce anything outside of my body?

They aren’t. The numbers look good on paper though.

I went out yesterday and went to three places, just running errands. I now feel like an 18 wheeler ran me over in my sleep. I’ve taken my meds. It’s not going to get better today unless I go to the ER and hope they can give me something.

I’m better off trying to just sleep through the pain, which is often an exercise in futility. Who the heck in their right minds would want someone to suffer needlessly? The answer is no one.

However, that is exactly what has happened, and it is neither fair nor right. But that’s the way it is.

12_7.jpgAudrey Liebl lives in Springfield, Massachusetts with her family.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Audrey Liebl

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linda

Response to ‘Linda’: You have no idea. We are told that something that is, isn’t, enough times w/o having one of our own claiming that they know the answers to our individual issues. I had spent over 20 years seeking proper treatment for CFS/ME/FM, including your Fibro Fatigue center. Their ‘answer’ was not my problem, especially their insanely expensive treatment, without guarantees or verification of results. I have since learned of the genetic issue that has set me up for these syndromes. This woman is expressing her own frustration with pain control, for both her and her husband. She doesn’t need a wake up call. She needs help with her pain. Without that, it is almost impossible to even think, much less search the medical community for help.

CHRISTINE PORTER

i completely understand ALL that you are going through!!!!

Celeste Cooper

As people living with chronic daily pain, we should have the right of choice. Treating pain is a basic human need. As animals, as human beings, we have an instinctively avoid pain. As people living with painful conditions for no fault of our own, we have rights. Why don’t we ever hear about that? There is plenty of evidence to suggest that going down the “all in your head” route to boost pharmaceutical sales of drugs that can do more harm is NOT the moral thing to do.

It is not our fault that we have chronic pain conditions. We all wish differently. This nonsense has got to stop. Referring a patient to a pain specialist is a JOKE! I need myofascial trigger point injections to help with ONE of my chronic pain conditions. I can get them in Arizona, but there is not ONE doctor in Kansas City that will do them that takes Medicare. All they want to see me for is my spinal issues because they can inject meds that put me in a craze and create more havoc than they solve. Why? One look at the MRI of my spine and the see dollar signs. So, even finding a compassionate physician is difficult. I just want to be out of pain or at least minimized so I can live our what little of my life left with some dignity. I am advocating for the legalization of medical marijuana in Missouri because patients need choices. There too I go for the Grace of God.

Cheryl Lumpkin

It is so awful that so many of us chronic pain pts have been messed with. We are the ones taking our meds right and getting drug tested by our doctors to make sure we are doing everything right. If you have never been labeled a drug seeker why are there still somany people who condem us? My guess is if any of them had to deal with our level of pain daily they would have a very different view. Yes we too want drug dealers and druggies off the street. Change the darn program people
God bless everyone who suffers.

Sadly this story is becoming all too familiar. Those of us with multiple chronic illnesses, especially invisible ones, have been caught in the cross fire between the Bureau of Drug Enforcement and the drug abusers. So have our doctors. Sometimes it seems as if we are the actual targets. The drug warlords shoot back. Rather than go after the large and profitable diversion of opioid for street abuse, it is so much easier to go after people who need medications to function. We can’t shoot back. I have tried sending medical reference after medical reference to the Food and Drug, but they refuse to listen. More and more doctors will not take chronic pain patients, and few doctors are trained in both chronic myofascial pain due to trigger points (the commonest source of musculoskeletal pain) and fibromyalgia, a condition which amplifies that pain and other symptoms. As doctors and law officers don’t understand the consequences of having both of these conditions and often others, we are often confused with drug seekers. This is the real drug emergency in this nation, and we are the victims.

Kellix

What gets me is this, What did we do that was so wrong? Were just chronic pain patients, I have failed back surgery and I have crohns disease. I had 4 surgeries in 2 years. I live in Atlanta and the pill mills tried moving here when they closed them in Florida, Georgia, slammed the door hard. hey made it where you had to have special paper, theirs a database and the doctor has to own the pain clinic so if they get raided they can lose their license. Also theres a database if your on it and stupid enough to try to doctor shop, your butt will be in jail quick. Our stupid news station did a whole thing about the Heroin epidemic in Georgia because its the same way here, pill costs have gone so high kids get Heroin now, But out news station was sooo irresponsible they say there and told where this place that’s a well known place in Atlanta, where to find Heroin, told them 11 times. I counted. Now every kid in Georgia knew where to find Heroin. 2 Days later another kid died. But what gets me is what did we do wrong. The government should be trying to work with the pain management doctors instead of against them, making commercials for kids, hey we know you didn’t mean to become a addict we can get you off of it safely, it beats dying. But what do they do they go after US, and make it harder for us to get our medications. We didn’t cause this, its not our fault, some stupid parents left their pills out for their kids to find and its not our fault, Florida was so lax that they would sell you the whole state. now if your a pain sufferer there if you can find pain meds there, is like finding gold. I wish the govt would make legislation defending chronic pain patients and not treating us and the doctors like the ememy. Do your job and stop the Heroin coming in the country, but its 10 times easier to go find a doctor and screw with him and his patients, they lie and say no we haven’t talked to pharmacies or doctors. I have family members that are doctors and my doctor told me and my pharmacy told me. So its not the first time the govt has ever lied to us. Do your job and stop Heroin from coming in the country and quit screwing with us, and work with the doctors to help kids get off of these drugs.

Linda

The first thing I want you to do is type in all or most of your symptoms. Not your diagnosis just your symptoms. Headache, fatigue, muscle pain, TMJ, etc. like that. Once you start using the wastebasket labels doctors give you when they don’t know what is wrong with you then you fall right into a bad diagnosis. Have you ever had summer flu? There is no such thing!

The entire East coast is endemic for Lyme and co-infections. Your doctor may not be aware of the symptoms and I believe you have most of the ones I had. Please try to find a Lyme Literate medical doctor. All of those symptoms are gone for me with proper antibiotic treatment and replacement of hormones that my body doesn’t make.

I thought I had CFS and then FM dating back to 1981 when I contracted Epstein-Barr Syndrome. It is very possible you have food allergies or intolerances causing the IBS. When adrenal function is low that can also happen.

I went to a Fibro & Fatigue Clinic and was tested for everything that could possibly cause fatigue back in 2006. My hormones were all low and I didn’t make any growth hormone. I took copies of my blood tests to an endocrinologist and other holistic, integrative, complementary physicians and DOs that are familiar with Lyme disease, B12 issues, low Vitamin D, and food intolerances/allergies. Look for a doctor near you on Lymenet flash discussion. There is hope! You do not need to live with all those symptoms of Lyme disease. It’s sad they changed your pain meds but maybe it’s a wake up cal that you need to get the correct diagnosis.

Heidi Jones

Do you have ehlers-danlos syndrome? Please look it up, you may. Many symptoms overlap. As an EDSer our skin is weird, so I had the same problem with patches. And TMJ and chronic fatigue are symptoms of EDS, too. Along with spine problems (I’ve just schedule spine surgery #3). Just take a look… EDS hypermobility type is not rare, just rarely diagnosed. If you feel you may have EDS, see a geneticist, not your PCP, because the PCP usually feels it’s so rare, you couldn’t have it besides, they are nervous to dx a genetic disease, and they really don’t know what to look for.

http://www.ednf.org

It is my understanding that there is now testing http://www.practicalpainmanagement.com/treatments/pharmacological/opioids/cytochrome-p450-testing-high-dose-opioid-patients that can quantify that a pt is a “fast metabolizer” and should provide proof to support an appeal with an insurance company that the pt needs to change their patch every 48 hrs as opposed to the FDA recommended 72 hrs. I have yet to hear of any insurance company that does not have some sort of appeal process for denial of claims being paid. They have to tell you what their appeal process is.. BUT.. only if you ask.. if they prefer to play “hard ball”.. get as far up the corporate ladder with the insurance company and indicated that you don’t have a problem filing a complaint with the state’s insurance commissioner.. they will often trip all over themselves trying to avoid someone filing a complaint. IMO.. there are a number of issues here.. from bureaucrats practicing medicine without a license… To pt abuse.. to denial of care/service..l just for starters…

BL

I’ve wondered lately if the powers that be aren’t happy because the drs aren’t reducing the number of pain meds they write enough. So new laws are being written and what insurance will pay for is being changed.

People with private insurance don’t realize that what happens with Medicare & Medicaid will trickle down and also effect them.