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Managing chronic pain

 
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I have been suffering from chronic pain sice 2002. In 2000 I had to have a cervical fusion that was successful then 2 years later, I began having pain again, I was then diagnosed with Fibromyalgia. I am seeing a great pain management doctor now, but due to allergies and side effects, the only things that helps my pain are opiates, MS Contin, Dilauddid. However, when I go to the ER or a new doctor, the first thing that the nurses and doctors tell me is that I have to stop the narcotics. I feel so asshamed that now I will not even go to the ER when I should. I had a milkd heart attack in October, 2014 and the resident who was taking care of me would not give me anything for pain and called me a drug seeker, then said that the doctors who prescribed the medicatios for me should not be allowed to practice medicine. I got up the next morning and left the hospital and have not been back since. Even though there have been several times that the chest pain is so bad that I have fallen to the floor in the grocery store. I am so frustrated at being treated like this and there is nothing to do. I feel sorry for the doictors that really care because now, they have to see a patient for a precription for Vicodin. The situation with the pain medication abuse is terrible, but why are we, the ones who benefit from it, are the ones suffering? I did not choose to be "Opiate Tolerant" but that is what the pain management doctor has as one of my diagnoses.

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@denvermrr wrote:

I have been suffering from chronic pain sice 2002. In 2000 I had to have a cervical fusion that was successful then 2 years later, I began having pain again, I was then diagnosed with Fibromyalgia. I am seeing a great pain management doctor now, but due to allergies and side effects, the only things that helps my pain are opiates, MS Contin, Dilauddid. However, when I go to the ER or a new doctor, the first thing that the nurses and doctors tell me is that I have to stop the narcotics. I feel so asshamed that now I will not even go to the ER when I should. I had a milkd heart attack in October, 2014 and the resident who was taking care of me would not give me anything for pain and called me a drug seeker, then said that the doctors who prescribed the medicatios for me should not be allowed to practice medicine. I got up the next morning and left the hospital and have not been back since. Even though there have been several times that the chest pain is so bad that I have fallen to the floor in the grocery store. I am so frustrated at being treated like this and there is nothing to do. I feel sorry for the doictors that really care because now, they have to see a patient for a precription for Vicodin. The situation with the pain medication abuse is terrible, but why are we, the ones who benefit from it, are the ones suffering? I did not choose to be "Opiate Tolerant" but that is what the pain management doctor has as one of my diagnoses.


I have severe degenerative disc disease and was on opiods with success for 10 years. then due to some drug addicts, and the pharmaceutical companies breaking the law, I was taken off. since then i sit all day.

 

So it begins.
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Hi,

 I am new to this site on AARP so I hope I am doing this right.  I am so sorry to hear of your chronic pain issues. I myself have suffered from chronic pain since I wan 29 which was way back in 1989. I progressively got worse until there were days I could not get out of bed. I am disabled now due to a whole host of health issues. I see a pain management doctor every month and have had epidurals, saddle blocks, and facet injections. None of them really worked for me. In fact when I had the facet injections they made it worse. For about 10 years I was taking 30mg of morphine every 4 hours and 150mcg fentanyl patch changed every day. All that relieved the pain a little but relived the weight of my wallet a lot! Fentanyl is very expensive. I wont tell you how much I spend on all (32) my meds each month because I dont want to shock or scare you. 

 Anyway, what I wanted to ask you is if your doctor has suggested a Medtronic Neuro-Pain Stimulator? The couldnt operate on my back because they couldnt find anything that wouldnt be to hard that it would break down the surrounding area or to soft that it wouldnt be effective.

I have Ossteoporosis, Rheumatoid Arthritis, Fibromyalgia, Osteo Arthritis and Scoliosis along with a long list of other things, I have something wrong with every disc in my spine from the base of my skull to my tailbone, I have also broken my back 3 times. The last time I broke it I bent over a little to wipe of the seat of a chair and when I stood up I broke it in 2 places. 

Back to the Neuro-Pain Stimulator, they put a temporary one in for 10 days and if it does not relieve your pain by 50% they dont do a permanent one. I have a hight tolerance for pain and also for medications so they could never give me enough meds to reduce my pain more than 20% but that atleast allowed me to get out of bed,. I couldnt do anything but I was up. When they put the temporary pump in I told them it relived about 40% of the pain and they decided that they would do it anyway because it worked better than the meds,   

All I can say now is Thank You God for that decision and sending me to that doctor.  My chronic pain is very bearable now and somedays I dont have any back pain at all!!! To me it was like getting granted a miracle. 

If your doctor hasnt mentioned this to you, mention it to him and see what he says, Look it up on line, Medtronic Neuro--Pain Stimulator, I am sorry I dont have the actual web address but I found it by typing that in.

May God heal your pain

 

NancyB
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HI,

 

I had many of the same problems, but didn't want surgery every 6 months bc nerves grow back. So I take a topical cream called Voltarin (generic) & it lasts forever. gets rid of nerve pain, fibro, arthritis and back pain (broken 3x.) $50 per tube that lasts 3 months. Perhaps someone could take advantage of this ortho cream. Beats surgery anyday & not that expensive. Just have to wait 10 minutes after shower for it to absorb. So, brush teeth, do hair, etc. Miracle for me.

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Hi everyone! I am new to this discussion but can only say that the FDA only lists 2 types of pain management. Short term pain, typically that is over after several weeks, and Chronic Pain that is defined as pain longer than 3 months, or that last after time needed for tissue to heal. All pain recommendations and education do not deal with pain treatments longer than that. Most all helpful medications for long term pain are "Controlled Substances". Guidelines only address abuse. In fact the FDA released in January 2016 new guidelines for Opiod pain medication management. There are no recommendations for patients that use Opiods for long term pain management. It is not even discussed other than to present a monitoring attitude for Doctors to recognize abuse. Doctors are held accountable as a Police Force for abuse accountability only. I agree that Opiod Pain Medications do have a bad abuse history, but please do not categorize my needs as that of an abuser.

 

i would like to see a new term for Chronic Pain that lasts longer than a year. Thousands of people are categorized into the two types of pain that do not recognize pain that lasts for years as a treatable need. As pain is continued after treated care options a "I have done all I can, Good Luck" attitude by Doctors, Surgeons and Therapists follows individuals who continue with Opiod Pain Management. I would like to introduce a new category, "Consequential Chronic Pain", or CCP. As pain continues after 12 months, or as in those who continue to have Chronic Pain and Opiod Pain Management for decades, Doctors and all Medical Practioners alike do not want to stay involved. Consequences follow and Individuals are left to try on their own to find someone to help and stay involved. CCP also leads to severe complications as the body becomes adjusted to Opiods and strips the body of automated mechanisms that control pain receptors in the body, but also destroy body function over time with Opiod Induced Constipation (OIC), desensitized insulin control for sugar leading to Diabetes and to the inability of the body to absorb nutrients and vitamins leading to all sorts of complications that are being seen in CCP individuals currently. Yet no real therapies are taught to compassionately help. Medical attitudes are mute to recommendations other that Opiods are bad and if used long term result in abuse. Would a Diabetic be tested every six months randomly to verify that an individual is not abusing their medications? This analogy may be a little dramatic, but an attitude needs to be afforded to CCP individuals that does not come off as an abuser, but as a need for a more compassionate, caring and educated Medical Practioner with a better understanding of CCP and how to treat as in any other medical need.

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The American Geriatrics Society calls it persistent pain rather than chronic pain. Most medical references describe chronic pain as lasting longer than three months and not being curable. Often associated with depression, fatigue, and irritability.
Long term acetaminophen has the potential for liver problems. Long term medicines like ibuprofen and naproxen including the prescription versions have risks of stomach and kidney problems. In fact they are a common cause of kidney failure. They also increase your risk for heart disease.
Right now opioid are the only thing that works for severe chronic pain. They are not addicting to all people, although tolerance does develop it is different than addiction. The problem is with people that misuse them and sell them. When used properly the person is more functional and alert. When misused they are just the opposite.
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You just wrote my story exactly. President Obama has started a Witch Hunt against legally prescribed opioid medications that is affecting all of us who suffer from legitimate long-term chronic pain. He claims that the rate of deaths caused by opioid medications is out of control. I have performed my own research regarding opioid related deaths and found that this is not even in the top 15 causes of death in the country. I don't understand where he is getting his information and why he is so determined to get rid of opioid medications. My pain management clinic has reduced the amount of pain medications prescribed to their patients across the board to 150 milligrams a day. I have been told that this has been done for every single patient. DEA and other Federal organizations are putting so much pressure on pain management doctors and pharmacists that they are afraid to look at each patient and prescribe medications on a case-by-case basis as it should be done. This is the second time in 4 years that my medications have been reduced. My record of following the rules and taking my medications as prescribed is spotless. Even so they reduce the medications arbitrarily and don't seem to care that the more they reduce them the more they are destroying my life and my ability to take care of myself. I feel that this method of reduction of medications will continue until they have eliminated the use of opioids altogether. This is the same thing as getting rid of cars because people die in car wrecks. I am extremely frustrated and terrified of my future if this happens because doctors have told me they cannot operate on my back for fear of paralyzing me. I can function fairly well on the proper dosage of opioid medications. I also have a spinal implant which blocks pain messages to my brain, but it does not block all of them. I have gone as far as I can seeking solutions for the chronic pain in my back. If opioid medications are eliminated my future is very bleak and I will not be able to take care of myself. I am on Social Security disability because of my back injury, but I could work as a paralegal if I were not in such pain. Raising the amount of pain medication that I receive buy just a little bit would allow me to go back to work. Something needs to be done to stop this Trainwreck before millions of Americans are reduced to bedridden lives where someone has to take care of them. Please help.
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I agree with you! It upsets me to hear when they talk about more and more tough laws on opioids. It ruins it for us that have chronic pain that only one medicine helps. I do not abuse mine but bad apples are ruining it for the rest of us! If Over the counter medicine worked believe me I would take it and get off the prescribed medicine but Tylonal, Advil and ibuphrophin don't do anything to help with the pain!
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As one of those people who suffer from long term chronic pain, I agree totally with your observation. Doctors seem to give up because they do not know what to do with us.  We need doctors that specialize in Chronic Pain Management that do not view us as "pill seekers". All we want is pain management so that we can live a life as close to normal as possible to be able to enjoy time with our family and friend as we use to.

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I agree completely! I have Reflex Sympathetic Dystrophy, nerve damage, Rheumatoid Arthritis, and Mild Traumatic Brain Injury. I am on opioids because nothing else even touches the pain! I am physically dependent on these drugs, but would LOVE to give them up! When they solve the pain, if its in my lifetime, I will gladly line up to have these drugs withdrawn. I am not now, nor can I see myself becoming, addicted to the pain pills. Even so, I must take them in order to be able to relate to family and friends!

I have an absolutely wonderful pain doctor. The entire practice treats me like a person with a pain problem, not just a pain problem. My practitioner would gladly refer me for massage therapy, PT, chiropractic, biofeedback, meditation, and whatever other non-chemical treatments are available. But, the insurance company absolutely will NOT pay for those alternatives. So, what I've got is opioid medications, and not even a full array of those chemical options. For instance, I' d really like to use pain patches to lower and control my systemic intake. But the insurance company says no. Why? Because I already have a method of addressing the pain!

So, the way things are now, I know that there are alternatives out there, and I'd like to give them a try or two or three . . . perhaps even lessen my dependence on those big, bad opioids . . . but, the bean counters don't like the odds or the actuarial data or something, so I'm just an example of better(?) living through chemistry.

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You have hit the nail on the head. I have been suffering from a nerve disease called Arachnoiditis, it is extremely painful and will never go away. It took me 4 years to not only get diagnosed but to find a doctor that would treat me as I use several opiates and other medicines so that I can get out of bed and have a so-called "normal" life. There are Pain Management Doctors out there but not nearly enough. I have to drive 3 hours one way to see mine. Thank god I only have to do that once every 3 months, it is very hard on me. We need to fight for more doctors to help the more than a million people that suffer from "Chronic Pain".
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The best way to avoid becoming addicted to opioids, is to decline them if or when your doctor offers them to you. There are plenty of other effective pain-relieving medications that are not narcotics. Try them first.

I have arthritis/DJD. Walking and/or standing for long periods of time can become painful. Still, I try to get out for a long walk each day which helps me avoid muscle cramps that accompany the arthritis pain.

I've had to start carrying Tylenol with me just about everywhere I go. I haven't given in to the pain yet, but I have had to adjust my life according to the pain. I still have goals that I'd like to cross off the old 'bucket list'.

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It is true that you cannot get addicted to opiods if you never take them, but if you choose that path, how do you avoid suicide?

There are plenty of other treatments available out there, but they don't help people who need more than then hot pads and tylenol.

It seems clear from your post you do not have serious pain problems.
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Tylenol doesn't work all by itself when you have multiple problems that cause chronic pain. If you are on Plavix, you cannot take Ibuprofen or Advil or Aleve or any other nsaid type of drug. So it only leaves opiods or opiod-like medications. That is the situation that I faced 5 years ago and I've been on an opiod-like medication that they just included in the list of narcotics and I tell you it does nothing like that to me. It only takes care of my pain. I could stop it tomorrow if my pain went away but that's not going to happen so I will continue to take my medications; a whole long list of them and that's the way some people have to live their lives. I can't even walk more than a block without having to stop because I'm in severe pain. I'm 50 going on 51 years old.
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I tried ibuprofen to address my migraines that are being created by my the nerves that are being affected by degenerative disc in my cervical spine, in addition to mobic and I had a ulcer perforate the wall of my stomach emptying the contents into the peritoneal cavity. I went sepsis and almost died. I had to had cervical spine surgery to address the severe pain in my cervical spine. The c-5 was replaced with a cadaver bone. The C-4,5&6 we’re fused together and I have a titanium rod stabilizing the fusion. Unfortunately there was some permanent nerve damage that can not be addressed with Tylenol or Advil due to my stomach history so I am left with little choice. It is easy to stand back and say “I would or would not do something” based on what you think  but when you are in the grips of pain and you just want it to stop, just please God make the vice grip let go. Or please make the migraines stop because it has been 4 days straight. Then come talk to me or any of us about making the choice. I have degenerative disc and I am waiting for my insurance to approval for my C-7 / T-1 surgery. This will be my third in that area so the surgeon plans to use a previous scar….  

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Regarding the migraines, have you ever tried Sumatriptan?  Before I started taking it, I would remain bedridden in intense pain and nothing seemed to help.  I was really surprised at how effective Sumatriptan has been.  I take it the minute I feel a migraine coming on and within about 20 minutes, the migraine passes.  But I've learned through trial and error that I *must* take the Sumatriptan at the very first sign of the migraine because if I wait too long and the migraine is fully flourishing, the Sumatriptan only mutes the pain but does not stop it.  

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Ask your pain doctor about an implanted stimulator. I am happier since having my "Boston Scientific" installed. Simple out-patient procedure and you have control to turn up or down depending on how you feel.
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Ask your pain doctor about an implanted stimulator. I am happier since having my "Boston Scientific" installed. Simple out-patient procedure and you have control to turn up or down depending on how you feel.
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You are right to a point. Some people have diseases that hurt so bad the only option is to take opiates. I have Arachnoiditis which is a severe ner e disease. I started off just using non opiates but as I progressed it became a nesissity to take the opiates just so I could have some kind of quality of life. Did I want to go down this road? Absolutely not! I was scared to death of these meds. I had never taken a pain pill in my life. I was afraid that I was going to become addicted.I had my therapist explain to me the definition of addiction. All though my body needs these medicines to function as best as I can. My mind is NOT dependent on them. If they were to find a cure for Arachnoiditis tomorrow I would be first in line to properly take me off these opiates.
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Do you or have you taken Neurontin for your nerve pain? Good Luck with your pain control. I have chronic pain and I'm on a number of pain medications. It's all in the mind, if you know you are only taking them for the pain and you stick to the prescribed dose and no more than that then you have a good chance of being okay. I've been on pain meds for 5 years and I've never asked for an increase in my dosage. Again, good luck.!
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The people who treat you like this have never experienced chronic pain. People who have not experienced it should not be allowed to treat or comment or make rules about it. Until I experienced it I had no concept of the utter desperation and depression that it causes. These people think they are doing good and all they are doing is causing needless suffering.
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I agree! The only time I had a doctor really help me was one who had the same condition!
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I'm so sorry for your predicament, and it could have been written, word for word, by my kids'

mother here in Ft Collins with the addition that one doctor scolds her for taking these pain medications while another tells her that she must take them regularly to manage the pain. I wish that I knew the solution, but I'll encourage her to share yours and other posts regarding this. I hope and pray that she, you, and others will find some relief. Please don't give up.

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Hi there,

            I know the feeling well 😞 , I am on Norco for spinal stenosis and several other spinal issues.

When I go to any other doctor for some other reason ( not pain ) and they ask for a list of the meds I'm on _ I get that look and they always comment on the pain med, say " you need to get off that ".

          I have told them right out _ I would if I wasn't in such awful pain everyday of my life.and HELLO- I am seeing a spealist for my spine and he put me on them.  I know they are addicting, but I DO NOT abuse them and without them I would have no quality of life at all.

         I also get angry over the new laws that make me have someone drive me to my doctors every month now ( 1 hour each way ) to pick up my script and take it to the drug store. I don't understand how this is hurting people who abuse or sell drugs? All it does is make it harder for those who need it to get it.

     I am so sorry you were treated like that 😞 , don't let that get to you!     Blessing to you and know your not alone.

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There are no laws that require a patient to have somone drive them to pick up a prescription. I don't know who told you this but they lied. Ask them for the state statue that says this. It will be interesting to see what they make up.

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I don't know if it's an actual law here in Colorado, but it is required to go through those exact steps to get narcotics.  There is a state registry available to pharmacies and doctors.  They check with this before filling the written scrip to make sure you're not filling them all over the state by different docs.  It is horribly unfair to those of us who do not abuse meds. 

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Yes it is a law in Colorado. Everytime you go to a pharmacy and have a prescription for any narcotic, the scan it to the Board of Pharmacy in Colorado along with your ID and then any doctor can get this report to see if you are taking the medications  you say you are or to see if you are Dr. shopping for drugs. You can also call the state board of pharmacy and fill out e release form and they will send you a copy of your report. I check mine once a year just as if it were my credit report. I make sure that it is only my information on the report and that it is all accurate. I am glad that they started this. I wish that they had a national data bank for this because I think they would catch more of the people that they are looking for than just having a few states have information for their state. Also this report from Colorado does not show any prescriptions you have filled through a mail order pharmacy unless that pharmacy is here. So it only shows the doctors, patients, and pharmacies here in Colorado.

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My doctor told me the same thing initially, but when I pressed for more information, it comes down to the insurance group requirements or the Medical groups policies. Mine won't allow them to issue more than a 30 day prescription of these opiate drugs. So now I also have to pay for an appointment with my dr every 2-3 months and she write monthly prescriptions, labeled with "do not fill before" dates on them. More cost to insurance company and us for these appointments just to pick up the prescriptions.
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Well in n.y.. refills on opiate pain meds are no longer legal and it is also not legal for doctor to call in prescriptions,so you have to physically go to your doctors office to get them once your 1 month supply is used up.This also means a charge for the office "visit".

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To this point, in WI, I have been able to pick up scripts for my wife's meds and bring them in to pharmacist. So she does not have to come, and we do not get charged for a 'visit'. So far....

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