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undertreating chronic pain
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stellabloo posted:
Seems that all we read and hear about regarding pain medications,(narcotics) has put a big damper on recieving adequate pain medication. All you ever hear about is the abuse, and next thing you go to your scheduled appointmeent, and all these doctors want to do is reduce what was giving you a productive life. They are all afraid since the DEA has not only overstepped the bounderies of what as I would call the 5th vital sign! what ever happeened to that ammendment? than they turn around and reformulate the way extended release medications are made by plastic coating them both inside and out,hence than it takes almost 2 hrs to even feel any relieve,to make matters worse many are doing away with breakthrough medications. I am 53 and became seriouse ill with such a rare illness it took 8 weeks to get a diagnose. by that time I was in ICU and on a resperatore,only to flatline 4 times trying to wean me off. Ever since now 30 years later,I can barley walk, have fallen so many times that I not only broke my neck and almost every bone in m y body, I now have 3 c discs impinginging on my upper nerves, and 4 impinging on my sciatic nerves.
I have yet found a halway sympathetic doctore that could even imagine the pain I am in and the burden it has caused my family.
The DEA has gone way to far and now they look only to the addicts that have ruined our medication,by shoving us chronic pain people to the side.
where is the happy mediun?
Our pain doctors are so afraid to prescribe anything that the deaths resulting from those in chronic pain being undermedicated has skyrocketed,yet they fail to put this in the news or the papers!
I for one am due to get a pain pump this week and until than I have nothing for pain.
I think the DEA needs to go back and think about the ones that truley are in severe pain instead of always looking on the negative side of pain managemeent.
I wish all of my chronic pain family only to find a good dympathetic doctor. And I hope you all keep me in your thoughts and prayers this week that my trial for getting this pump does help,and they than can continue with phase 2 and getting it implanted.
Bless all of you,and my thoughts and hopes are with you all.
stella
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Caprice_WebMD_Staff responded:
Hi Stella,

I hope the pain pump really helps you. Let us know how it goes.

Good topic!
We must let go of the life we have planned, so as to accept the one that is waiting for us.
~Joseph Campbell
 
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Anon_160307 responded:
I absolutly love your passionate post and agree with you 100%. I am very lucky to have a great doctor that listens to me and works with me to achieve the right level of pain relief that restores functioning. However, I know I am the minority and so many are out there suffering from chronic pain due to being poorly treated or not treated at all. It is a shame! All of us only have one life and to deny someone medications that could help them live a better life is inhumane! So many days, months, years, were wasted curled up in bed in tears from the pain. We never get those days that we spent suffering back to relive them doing an activity that we enjoy with ourselves and/or friends/family. Those days suffering are gone forever and all we have left is our miserable memories.

A change needs to happen. The DEA said their REMS program would not deter doctors from treating patients but IT HAS. And the DEA needs to realize this is happening and come up with a better strategy. But see, it is easy pay to ramsack the private practice of a family doctor as it is operated in broad daylight and their are no weapons in the way of a successful raid. Who wants to go to where the drug dealer lives at 3am to stop diversion at the source?

Anyways, I get all rev'd up over this issue. My pain is being treated very well now but I remember the days when it wasn't and I truly feel for all of the chronic pain sufferers out there that are unable to live life to fullest extent possible. Life is so short. Our children grow up so fast and before we know it, they are grown and starting a family of their own. When that happens, all of us as parents and grandparents want to be able to say that they are happy with how their children was brought up and are confident that seeds of good memories were planted to pass on their children's children. No one wants their child to remember that mommy or daddy was always sick and in pain. We all want to feel good about our accomplishments in life and know that when the time comes to depart this earth, their children will carrying on a legacy of traditions that "you" helped establish. Pain stiffles all of these wonderful things from happening, which is devastating.

I pray that your pain pump trial is successful and that implantation comes quickly so that you can enjoy all that life has to offer. Please keep us updated on how things are progressing. Take care.
 
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annette030 responded:
I hope the pain medicine pump works out well for you and you do not have any problems with the insertion surgery.

I do have a compassionate, wonderful doctor, I have been her patient for nearly 13-14 years now. Before that I had other excellent doctors. The fact is the DEA has never affected me or the way my doctors have opted to treat my pain. I have been on daily opioid therapy for more than 15 years.

Take care, Annette
 
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dfromspencer responded:
Hi Stella, i sincerely hope this pump works for you! I have to agree with your post. My pain mgmt. Dr. is trying to cut back on the amout of morphine i take now, even after i told him it does nothing for my pain. WOW! The DEA has really blown this one!

I can only hope that everyone finds their own happy medium? I have yet to find mine, and its been years.

Good luck to all! Dennis
 
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lazydazey responded:
I will surely keep you in my prayers that your surgery for the pump and the pump itself helps you get back your quality of life. I sooooooo agree with your post, I wish there was some way that all the chronic pain folks (and the number is increasing daily!) could get together and demand decent medical treatment-to undertreat our chronic pain is not only medical negligence, it is downright criminal and is discrimination against a particular group of people; the DEA is on a major power trip, destroying peoples lives and treating vulnerable, ill folks that already have enough problems from their health issues (chronic pain) in a way that absolutely appalls me-how DARE they think they know what's better for me than my doctor!? And they have absolutely no right to decide how much pain I get to suffer! I don't need our messed up government making my health choices for me-I am an adult, I pay taxes (some of which pays the salaries of the out of control DEA) and I am damn well capable of deciding what is best for me, with the guidance of my doctor. I do not abuse my medication, I NEVER run out early, and the DEA can kiss my old, tired, aching rear! We chronic pain patients have a health problem and it should be treated as such, not the disgraceful way it has been handled, with so many trying to make us feel shame or guilt just because we may need medication to lead a productive life, be there for our families, just live our lives like everyone else! I don't see heart patients, diabetics or other folks with chronic conditions having to put up with the crap we do! Hope everything goes well for you and you get the relief you so deserve, I will be praying for you. God bless you and watch over you. Take care and good luck!
 
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annette030 replied to dfromspencer's response:
Hi, Dennis

I am sorry that you have not found the right treatment for your pain yet.

Maybe your doctor cut the dose BECAUSE you told him the morphine does nothing for your pain. Opiates do not help with all kinds of pain in every person. He has to be able to show that his patients are improving with any drug he prescribes. Communication can be very difficult between patient and doctor.

Take care, Annette
 
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dfromspencer replied to annette030's response:
Thanks Annette, you are absolutely correct. I did better on the Methadone. But, after so long, the effectiveness wore off. Then came the morphine. It worked for only a very short time. When i told the Dr. this, he would not up the dose. He say's that i am at a very high level/dosage now. 700mg a day??? Really? That is not even close to what a few other sufferers take. One friend takes over a thousand mg per day. He says it too barely works.

I will keep fighting! Thanks again, and take care. Dennis
 
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cweinbl responded:
The DEA has focused far too much on a tiny percentage of chronic pain patients who steal, overdose or abuse pain medication. The latest, most comprehensive research studies prove that 2% of all chronic pain patients who use opiates to manage pain become addicted. Here is the proof: http://www.ncbi.nlm.nih.gov/pubmed/20091598?itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum&ordinalpos=1 and http://updates.pain-topics.org/2011/01/study-finds-low-risk-of-rx-opioid-use.html .
Drug abusers and the media following them have made their mistakes our problem. Millions of chronic pain patients are caught in the undertow of public and government scrutiny because of the acts of a handful of drug abusers. Yes, we (the 98% of chronic pain patients who take opiates for pain, not to get high) are punished as the DEA oversees the prescription pads of our doctors. We sit and suffer in pain every day because a handful of drug abusers are given headlines by witless journalists for abusing the drugs that we use to survive — not to get high. In some parts of the US, so many chronic pain patients have been denied the drugs that they require just to get from one day to the next, that we have a new epidemic — an epidemic of thoughtless disregard for human pain.
cweinbl
csw2@bex.net
 
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TDXSP08 responded:
Since being stabilized on Fentanyl and Oxycodone over 12 years ago i have agreed to let my Doctor increase my dosage 1 time on several occasions she thought that i should increase my dose and i have disagreed saying that i think its just a temporary flare-up and i can handle it with my current Med's and not to say hey look at me or anything but i was right and i kept myself from artificially going to a higher med dose than i really needed,because we as patients need to be ever vigilant about how much of any Medications we take whether opiates or Vitamins we have but one liver and two kidneys in this lifetime so treat them with respect. I also am with a wonderful PM Doc who i have been seeing now for 5 years there was a crisis period between her and my last good doc who i was with 9 years 7 of which she prescribed my Pain Med's when she moved to another state i was in a bad way for about 5 months because no one else on my care team wanted to pick up the "ball" ,Yet i took all of my records to a PM Doctor who reviewed them ten days prior to my Visit and then examined me and could not understand how none of the other Doctors based on their own records and my exam would not or could not prescribe medication i was taking for 7 years without any problem- it all boiled down to DEA Paranoia and its just getting worse, there is no Pain Management in the town of 450,000 people i live in none nada zip zero can't say it any other way there are surgeons who will operate on you but PM forget about it you have to do what i do drive 650 miles round trip to get a PM Doctor, you have to devote 1 entire day to go to the Doctor ,THANK YOU drug addicts and like in Florida they cut off all pain killers to everyone did the true addicts care no they switched to something else that was available but the real legal sick disabled Chronic pain Patient was told go suck pond water well we try and send a message to somebody who isn't listening because there oxycodone was not available so they are "huffing" a can of spray paint to get high.

Good Luck Stellabloo

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
 
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annette030 replied to dfromspencer's response:
The problem is for you if your doctor dies, retires or moves away. Will you be able to find another doctor willing to prescribe that dosage? 700 mg. a day IS high, but it does not matter what the dose is, he still has to be able to show with notes in your medical records that the opioid is helping you.

If it is no longer helping you, the choice is to go off of it completely, or rotate to a different medicine and see how that works for you. Or add a non-opioid and see if that helps. Or try a non-drug treatment and see how that goes.

I take methadone now, after taking morphine for about 12 years, I am only taking 20 mg. of methadone a day, and have up to 50 mg. of oxycodone per day that I can use for breakthrough pain. I usually take 15 mg. at a time, sometimes 20 mg. if the pain is really bad. I also use cognitive behavioral therapy, and my hot tub, etc. every day. The pain is not ever gone completely, but it is generally managable. I just do what I am able and put off the rest.

Best of luck to you.

Take care, Annette
 
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annette030 replied to TDXSP08's response:
I have done the same thing in regards to short flare ups of pain, my doctor was willing to increase my opioids and I said no, I will add other things and wait it out. It leveled out again without increasing my opioids. That is probably why I have been able to maintain low doses for many years.

Don't believe everything you read on line about Florida and pain meds. I have a dear friend in Florida and she and her husband both have chronic pain, and take opiates regularly, both get their opiates from their pcps without any problems. I asked her myself a few weeks ago, that is what she told me. She is in her early 50s, and he is in his early 70s.

Take care, Annette
 
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dfromspencer replied to annette030's response:
Thanks for responding Annette. I have talked to my PM Dr. about switching meds. He is all for that. I have an appointment with him on the sixth of July. I will let all know how that goes.

My PM Dr. has told me that treating nerve damage is very hard. There is no one med that will ever be 100% effective for me. This is something i know i must live with for the rest of my life. That agonizing burn will always be there. Without any meds, i am a wreck! Even the morphine dampens it a little. The oxys help when the nerves pinch, and it puts me on my knees. Thank God for the oxys fast reaction time! The oxys i get, are only five mg., but that is usually enough at the time. I am allowed up to four of those a day, but rarely do i use them.

I also use CBT. It actually helps alot. Its too bad that so many chronic pain sufferers dont know about CBT. It has been posted on this site before. I hope that one day, everyone will know about it.

Best of luck to you, Annette! Dennis
 
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annette030 replied to dfromspencer's response:
Hi, Dennis

I adore CBT, and have used it for years.

I also have nerve pain, I use gabapentin and it does seem to help it. Everyone must figure nerve pain out for themselves. It is difficult to treat.

Take care, Annette
 
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finn2 replied to annette030's response:
The pain doctor I've been with for a year now is the same way, they don't seem to have any trouble with the DEA and they are taking very good care of me, between them and the orthopedic doc I have, my life is much better. The pharmacy is having problems getting the Oxy drugs though the last couple of months. I've had to use other pharmacies and call first to find out if it's ok as we sign an agreement to use only one pharmacy. The DEA is getting way out of line imo.


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