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When your doctor won't prescribe narcotics: Tips for getting the pain relief you need
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jrae922 posted:
Great article, really puts things in perspective.
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An_244127 replied to manoncampus's response:
I am sorry for the situation you find yourself in, you are not alone I can assure you! Many chronic pain patients are finding it harder and harder to get the proper meds prescibed to them to function on a daily basis. If I may ask a few questions? Why were dismissed exactly, did you use a different pharmacy to try a find your meds? I assume you had a pain contract with your dr. and if you switched meds (if I'm understanding this right), is it because you failed a urine screen? I do hope that things work out for you, good luck.
 
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BetteK replied to An_244127's response:
As others have mentioned, opioids don't always help. I went from 25 mcg/hr of Duragesic patch all the way up to 150 mcg/hr. I was switched back to OxyContin 25 mg and got better coverage. Another time the patches worked better. I'm now opioid-free and at a lower pain level than on any med. I get nerve blocks every 3 months.

My hubby got in trouble with the pain clinic for taking some of his previous med along with the current one when he had a bad flare on the weekend. Luckily our family doc was willing to prescribe for him and included a rescue medication.

I thought the official position is that "pain is what the patient says it is." I guess I was wrong. Docs have to realize we have bad days. We need a med to add to the mix on those days. Write it for only a week's worth. Make the patient come in for a refill. Reassess pain levels. But don't leave a patient home alone with increased pain and nothing to do about it. Show some compassion--and some sense.

If you aren't on first name basis with your doc's receptionist, get there. Then some day when you are in the worst flare of your life you can call the office, explain that the doc really should see you at least once in this shape, and get seen as quickly as your friendly receptionist can find a spot--not in 6 weeks.

If your doc doesn't know just how bad it can get, how can she possibly prescribe for those horrible days that we all know will come? Make a point of not getting all dolled up. Men, don't shave unless you really feel you have to. Ladies, skip the makeup. Dress for comfort, not for fashion. Emphasize the difference between you at a regularly scheduled visit and you on a very bad day. Your doc has to see the difference in you to understand it.

Hope some of this helps!
 
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bamagirlhurts responded:
New here, but have read this entire thread. I don't have an official fibro dx, as I cannot find a doctor in the area who treats it yet. However, I do have an extensive medical background and have read the Diagnostic Manual's criteria for a dx and I qualify. I also have bipolar disorder, anxiety disorder, dissociative disorder, post traumatic stress disorder, chronic fatigue syndrome, interstitial cystitis, pelvic floor dysfunction, a bulging L5/S1 disc with accompanying torn ligament, chronic daily migraines, peripheral chemotherapy induced neuropathy, and chronic pelvic pain. I was also just released from treatment for stage III cancer. My oncologist was prescribing my pain medication for the last 2 1/2 years. Then when I had my last visit last month, he released me from care. When I advised him I was out of pain medication, his reply was to find someone else to do it because my pain was not related to my cancer anymore so it wasnt his problem. Nice, right? My rheumy told me fibro does not exist. I found a pain clinic (which happens to be owned by my psychiatrist's husband) with a doctor who does treat fibro. His response was 'yeah you look like you have it, but I want to rule everything else out first.' Like I haven't done that already. I have had a migraine at a 9-10 on a 10 scale constantly since Thanksgiving. I have had intramuscular steroid injections and bilateral occipital nerve blocks for the migraines, and lumbar nerve blocks for the back. To add insult to injury, when I told him my oncologist wanted him to take over my pain management, he cut one of my meds (a C2) by 1/3 and my other opiate by 2/3. Its virtually useless to take the second one because I've been on it so long that ibuprofen is more effective than that dose. I called the next business day, told them something has to give, and they scheduled me an appointment for next week. In the meantime, I'm left to suffer. I cannot function, and I have a 4 year old to care for. On top of it all, her father and I are separating, so the help I currently have to care for her will be gone. I'm at a loss of what to do. I have two more procedures scheduled within the next month - one for migraines and one for my lumbar region. Both are repeats of procedures that have already been done but didnt help, just because insurance "requires" two attempts before moving to more intensive treatment. This will be my 4th lumbar nerve block in a year. Yeah, I'm pretty certain they DONT WORK! I'm stressed, frustrated, and I'm tired of not being the mom my daughter deserves because I'm hurting so bad all the time. So - I join the ranks of the hurting, frustrated, and fed up.
 
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mybdy replied to Getoverit's response:
Who are you to judge who should be taking narcotics everyday? You are entitled to your opinion of course, however, you should also be open minded to the fact that some people, even though they may look healthy on the outside, are struggling every day just to get out of bed in the mornings because of their debilitating pain. Have you ever in your life have to deal with feeling like a horrible parent because you were in too much pain to pick up your baby? Imagine feeling like a knife is stuck in your back...every single day, all day, for over 1 month? Have you ever cried yourself to sleep at night because of the guilt you felt for not being able to sit down and play with your children because of this pain? When that happens, you can judge.
 
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dakotaspirit1957 replied to Getoverit's response:
Getoverit... you obviously don't know much about pain and how opiates work with pain... If you take too much pain killer yes you are effected by getting high and similar side effects... Most people in a huge amount of pain only feel the effects of some pain relief... Notice I said some... Most of them never feel total relief...

I personally have multiple reasons for pain... And yes take opiates...No I don't drive but I don't drive due to muscle spasms and pain... Not because my pain reliever makes me high... I don't feel high unless I am hospitalized and given pain killers intravenously... And they are stronger then I am on...

I know there are people out there that abuse medication and unfortionately giving us who need medicine bad names... I personally exercise 4 times a day regularly and on my bad days more often... I cannot fake any of my illness or pain... It is virtually impossible... I have proven documentation of reasons for pain... FM is just a little invisible gift to go along with them...

I cannot believe someone can read this board and write what you have written... So many people desire not to take these meds... So many in such pain that they find they have no choice... I personally couldn't live in my pain day in and day out without them... For without them I am suicidal for the pain is a constant 9-10... and is unbearable... With them my pain is a tolerable 4-5... I live disabled by my illnesses but I don't live disabled because of the pain when it is tolerable...

Give us a break... We are only human... Yes some may fall under the addiction but so many more won't... And it is that so many that we need to take chances for treating... We do understand the risks... But do you understand our pain...

I do deserve tolerable pain with perhaps someday a chance of no pain at all... And all the people who write here deserve the same... Your neighbor deserves the same... And God forbid you feel my pain... You deserve it too...

I have cried because of the guilt that I couldn't play with my children... I have lost part of their lives while other people have taken care of them when I was too ill to do so...{My husband had already walked out...} And cried myself to sleep every night... My children went thru h-ll and high water because of my illness and pain and came out better people because of it... It bonded us closer then I think anything could have...

Re-read some entries and information in this site... Perhaps a little knowledge could go a long way... Be open minded please.. Give us the chance I honestly don't feel you have given us... Leave your so called facts and stereotypes aside... Please...

Jan/Dakota
 
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junkyback replied to HDienst's response:
As a nurse, to a doctor, good Lord do you doctors frustrate me! Listen, I get where you're coming from, and as a nurse I've seen it all, believe me. I've seen plenty a med seeker and liar. What frustrates me is that it's really not that hard to tell the difference between those people and the people who truly need treatment for pain. Here I am, an experienced ICU as well as addictions RN, and also a chronic pain patient. I'm 36, three back surgeries so far and yet another herniated disc floating around in there. I regularly go to a pain clinic. My pain doctor, well....he sucks. He will inject my back until CSF is leaking out of my ears but God forbid he prescribe a narcotic for an acute exacerbation....ever. I don't get it. And so often I've had trauma patients that even ICU docs are scared to treat. It's ridiculous. Someone needs to get a grip here...docs, nurses, the DEA, the government...jeez, how about common sense? I know my intuition isn't so stellar that I can so easily tell the difference between the liars and the patients who actually need pain medication. And I understand when you say that narcotics are not the answer for long term management of chronic pain, but I gotta tell ya, looking at a picture of a rainbow, listening to ocean waves, and giving my pain a "name" sure aren't helping. Sometimes narcotics are the only thing that works, and people just need to accept that and stop judging. It's so disheartening that there are so few docs left that will step up and treat their patients based on their sound clinical judgment and not a vast array of rules pushed on them by the AMA or DEA.
 
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junkyback replied to HDienst's response:
After reading your reply to your own post, I don't believe you're a doctor. After reading your first post, I decided to overlook all your misplaced apostrophes, but for you to say that pain is not harmful and withdrawal from narcotics is not harmful, WOW. You need to go back to med school, buddy. I had a patient in oxycontin withdrawal who went into severe hypertensive crisis and had to be admitted to the ICU, I had another patient who suffered from status epilepticus after abrupt narcotic withdrawal, and the list goes on and on. And pain can be VERY harmful. This is why it's the 5th vital sign, because of the effect it can have on all your other vital signs. Pain can induce fatal tachyarrthymmias, hypertensive crisis, and stroke. I am stunned at what you wrote.
 
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junkyback replied to An_249546's response:
Woo hoo!! Couldn't have said it better myself.
 
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junkyback replied to An_249929's response:
Spoken like a true moron.
 
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junkyback replied to mybdy's response:
mybdy,I can identify with what you wrote so much. It breaks my heart to read it because that is exactly how I feel. Every day, it's so upsetting to me that I can't do the fun things I want to do with my one year old daughter. All I want to do is roll around and play on the floor with her, and some days I can barely pick her up without shooting back pain. It's so bad sometimes. People look at me and I don't fit the picture. I'm 36, look perfectly healthy, have a beautiful baby and wonderful husband, and then they see me park in the handicapped spot and look at me like, "Who does this woman think she is, scamming that handicapped spot?" I have had three back surgeries, and yet again, I've herniated another disc. It is killing me all the time. My pain doctor is such a jerk and he just refuses to give me narcotics of any kind no matter how much I cry. All he says, over and over, is "I am mandated by the DEA. If I give you narcotics, it has to be for the rest of your life, not for an acute exacerbation of your chronic pain." I don't get it. I'm a nurse and this makes no sense to me. All I want to do is to be able to get back into the ICU and take care of patients again, but right now I've got to get this pain under control. What so many people don't even understand is that if you've taken narcotics for a long time, you're not walking around "high". Not at all. Honestly, I find the pain to alter my judgment even more than the pain meds. The pain is so bad I can't even see straight sometimes. Anyway, best of luck to you, and I'm certainly not judging you.
 
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mybdy replied to junkyback's response:
The shooting pains in my back are better. I still have the pains but not as severe. I saw my doc and she wants me to have an MRI of my brain done because I started having weakness in my arms and right leg. I was trying to feed my son fruit and I couldnt get my fingers on my right hand to grasp the fruit. My right leg feels like a weight is on my thigh when I go to lift it up from the bed or couch. I am waiting for blood work to come back, which I am sure will be normal anyway since it always is. I fell about 1 week ago and even though I didnt hit my head, my doc thinks I could have a concussion just from the force of impact. I havent been able to work and now I am on brain rest which means nothing but sleep. And that is boring!!! My MRI is saturday, which I am sure will also be normal. So frustrating!!!
 
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TJ713 responded:
After 2 back surgeries and a permanently damaged sciatic nerve, I had to resort to finding a pain doctor. The problem is that the feds have shut down all the pain doctors. So I started a petition today on the White House website. Please sign it and let's find a different way to handle drug seekers than denying patients who are REALLY in pain. https://petitions.whitehouse.gov/petition/allow-physicians-prescribe-pain-medications-their-discretion-without-scrutiny-federal-government/P75db5z1
 
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TJ713 replied to dakotaspirit1957's response:
Jan, I'm sorry to hear about your pain. I'm been a nurse for 13 years on the crazy med/surg/telemetry floors and EVERY single shift have been called to help lift or turn heavy patients (I'm a male nurse). Finally one day my L5-S1 disc ruptured. That's the worst pain I have ever felt in my life.

Even though the MRI clearly showed a need for surgery and a reason for pain, everyone at the hospital treated me like a heroin junky looking for a fix...and this was while I was waiting to be taken back to surgery!

During my nursing career, I have watched other nurses play the role of "control freak" and deny patients their ordered pain meds. I was never like that, and was HIGHLY REQUESTED by patients admitted into the hospital for pain.

Now the surgeries are all over, nerve block shots are not possible because of scar tissue blocking the nerve canal, and a tens unit, heating pad, recliner and pain meds are my only friends.

I was shocked to find that there are NO real pain management doctors left around where I live! The feds have shut them all down! My pcp is terrified and majorly under-prescribes narcotics to me (I have to decide which part of the day I want to be in extreme pain so my few pills will last me the month).

I decided to start a petition today on the White House website to get the DEA off of pain management doctors' backs. Please sign it if you like it. I hope you feel better. TJ/Houston

https://petitions.whitehouse.gov/petition/allow-physicians-prescribe-pain-medications-their-discretion-without-scrutiny-federal-government/P75db5z1
 
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irishroots replied to TJ713's response:
I've read all the stories, and I feel it's criminal the way we chronic pain patients are treated.

I have a fusion at C5-C6, an artificial disc at C6-C7, both failed, which causes severe muscle spasms on both sides of my neck and upper shoulders. Sometimes the spasms cause numbness, tingling and weakness in my right arm. The spasms also cause what my old pain doc called "cerviogenic (sp?) headaches", caused by my neck problems and spasms. The headaches were't migraines, but so severe I vomited from pain. Couldn't do anything but lay in a dark room (inactivity "bad for fibro"). I fired that doc. He became very paranoid about drug seekers, which didn't include, he treated everyone in his practice as drug seekers. He had me bring in my old med bottles every visit, always with meds still in it. I only used it when I had no option (I had 3 small boys at the time). It wasn't the pill monitoring I had the problem with.He hired a psychologist to "screen" for drug seekers and help pain by talking(?). He stressed exercise, which I did, but I'm sure everyone here knows that some days you're lucky if you can get out of bed to go to the bathroom. I told the psycho (Freudian slip?) that was the situation. He called me a "sloth." I was so sick and furious I walked out and never returned, without explaining why to anyone because I was seeing red.

I've used TENS, PT, Cymbalta (made me very sick, but I was told I needed to stay on it to give it a chance). Just a warning: if you've been on it for any length of time, even if you're weaned off of it over a period of weeks, the withdrawal lasts 2-3 months. Twitching, inability to concentrate, memory loss both short-term and long-term, times when you just "zone out", shakes, vertigo, queasy, just sick.

After going through that I didn't want anything more to do with "fibromyalgia" meds, but tried Lyrica. Started at low dose, moved up to the highest over a period of time. Made me vomit constantly, so I probably wasn't getting the right dose anyway, but no help for pain.

Then I was a sucker and tried neurontin. I've never been so sick in my life after only 3 days - blinding headaches, confusion, INCREASED pain (in places I didn't have pain before) and btw, it did the same thing to my sis, who has had 3 failed lumbar surgeries, the last one (done by a quack,sorry doc who posted here, but 50% of all docs graduate in the bottom half of their educations) has left her permanently disabled because of her doc's incompetence. I could go on and on about that, but it's another story for another day.

I've had facet rhyzotomies , nerve blocks (more times than indicated), plus the 2 neck surgeries (not fibro, but chronic pain).

I've had "fibro is a garbage can diagnosis". Couldn't get into a pain clinic, because the head doc there asked for my past med records and I complied, getting records from every doc I saw for these conditions, and the pain clinic doc called me and said he absolutely wouldn't consider me as a patient, as obviously I was doctor shopping and drug seeking, and when he made a decision, it was for "life," meaning he'd never consider me again - seriously!

All that to preface that I feel like the luckiest woman alive right now. I've got a rheumy who's been working with me for 3 years. Of course, he says "Diet, exercise (gentle exercise like yoga or tai chi or walking), stretching, heat/ice depending on what helps, even checks my osteoarthritis each visit. With no problem he prescribes me Norco and Tramadol (but does suggest Celebrex when it helps). I see him every 3 months, he gives me the script & 2 refills, to last til the next visit. He's kind, he listens, he doesn't kick me out after 3 minutes, I'm not just a file # to him. I''m 1 of the lucky ones. I hope you all find the luck I've found.

Sorry for the novel, I know you've all been there. Somehow I hope you all get the help you need.

.
 
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dollbug replied to irishroots's response:
Hello and wecome....MiMi in NC..I wanted to comment to yyour post...It is so very important when we FMers find a good doctor....not all doctors believe that FM is real much less understand how to treat it...it is sad that so many doctors are *uneducated* on this mean and ugly illness...

I would like to encourage you to be sure and ask your doctor to check your Vitamin D level, which is important to a lot of people these days....not only those of us who have FM either...My daughter, who does not have FM...but had some medical issues got hers checked and it was a 2....almost no Vitamin D at all...she gained a lot of weight and was exercising every day but could NOT lose any weight...it had something to do with her Vitamin D level...she has since lost most of the extra weight that she gained and she is doing so much better.

I would also like to mention that from the research that I have done....pain pills are not always good for us since we have *chronic pain*...pain pills are normally good for only *short term*...FM is not short term...it is for life.

I am one of the FMers here who has learned how to *control my FM pain with vitamins and supplements and doing other things as well...it took me a long time to figure out exactly what my body needed....but I did it..and I am now much better than I use to be...I still have issues with *stress* and what it does to both the mind and the body.

I have learned just how important pacing is...and eating right and being on a schedule of sorts...along with using a heating pad and Stopain Spray...getting enough sleep at night and resting during the day.

Anything and everything connected to FM is indeed a process....which does take time and effort...what works for one person may or may not work for you...but only you will know when you have tried something and allowed at least 6-8 weeks of allowing it to process, (unless, of course, what you are doing is making you sicker)...will you know when you have found the right combination of *tools* is helping you cope better.

I am sure that you will find something that will help you cope better if you continue to search for it.

Take care and good luck...'



MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..


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