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Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280229
04/21/18 12:46 PM
04/21/18 12:46 PM
Joined: Aug 2016
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GardenGnome Offline
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this is happening in Canada as well. Doctors are overreacting and its causing more problems than its trying to solve. Eventually some people will turn to illicit drugs on the street which is not good. I have been on opiates for almost 4 years. Im on very high doses and now my doctor is telling me to get off it. For what purpose? I have incredible amounts of pain. So i get off it and then what? go back on it becuase my pan is chronic? Dont go back on it and live with more pain for absolutely no reason ? I am so angry about these delusional guidelines made by people who do not suffer from chronic pain and obviously do not take advise from anyone who does have chronic pain. Our current liberal government is actually toying with the idea of legallizing ALL ilicit drugs. Im not sur how i feel about this. Im sure it would make gettting opiates easier and cheaper if one needs them. But i jsut dont know about this idea. Doctors need smarten up and stop overeacting becuase other peopel are overdosing on fentynal and carfentil and all these recreational users as well. We are patients with legitmate provable pain. Dont call us the land of the free and then torture us but not allowing us to get opiates for pain but allowing people to inject and supervised injection sites. Keep it up. Protest.

Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280233
04/21/18 11:22 PM
04/21/18 11:22 PM
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Jeffn Offline
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I wrote President Trump, Attorney General Jeff Sessions, both my US Senators, and my US Congressman. Its insane what is happening. What's next, no more insulin for diabetics? No more high blood pressure for those with the disease? No more antibiotics so we just die off?

Don't we have a right to life, liberty, and the pursuit of happiness under the Constitution?

What about the ACLU suing the DEA for this?


Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma. 7 hour spine fusion surgery in April 2014 for cervical spondylotic myelopathy and radiculopathy. Tried for a year to return to work and couldn't make it past a 5 hour day, so was forced to go on disability in 2015 and haven't been able to attempt another day of work since then. Living to help others now.
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280237
04/22/18 08:16 PM
04/22/18 08:16 PM
Joined: May 2010
Posts: 1,430
Whidbey Island WA
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WhiteCell Offline
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Whidbey Island WA
The ACLU is focused to a large part on crimes against groups of people and individuals who fit their definitions. Chronic pain sufferers are not amongst their current groups. The best thing you can do is form a song relationship with your doctor and advocate for yourself. One method is to keep records:

1) pain location and description (aching, burning, sharp, dull etc.) Other signs/symptoms (fever, nausea etc)
2) time of day.
3) pain level (0-10) where 10 is the worst pain
4) attempts to relieve pain non medication
5) attempts to relived pain medication
6) any improvement (0-10)
7) time and duration of improvement
8) time of return of pain to previous level

Use an app, a smart phone or a little ringed binder. Doctors are frightened of the new draconian rules to the point of hysteria. If they are targeted they can never work again. Doctors who have gone out on a limb for patients have been reported by those same patients and placed on restricted license. It is key to advocate for yourself with documentation and a politely assertive attitude. If you have resources you could file a sue as a civil right issue however you must be prepared to look for an attorney who will take you seriously. Many times crisis leads to change and exercise stretching and modifying lifestyle can be beneficial.

As a nurse and as a patient I have watched this trend over the last year since arriving near Seattle. I was ready to go to war when a new doctor wanted me to go onto a pain contract for intermittent use of vicodin. I still have strong feelings but I am glad I did not embarrass her as we work together now and she is an excellent Rheum.

That said, as before I am looking for the opening to advance this issue to put in place agreements and strengthen the relationship between doctor and patient. Our accurate notes will go a long way to support our goals AND supporting our doctors to advocate for us.

Note:
If you drive a vehicle while at the same time taking narcotic pain meds be aware in many states that is unlawful.
I recommend against using supplements or vitamins as many of these are contaminated, not subject to testing and can be dangerous.
Most pain is loss of blood flow to any area of the body (with exceptions). Massage, walking, swimming etc can be quite beneficial.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Don't Punish Pain rallies- April 7th [Re: Jeffn] #280242
04/23/18 07:03 PM
04/23/18 07:03 PM
Joined: Aug 2013
Posts: 158
Madison, Wisconsin, USA
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Cake Offline OP
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Madison, Wisconsin, USA
Originally Posted by Jeffn
I wrote President Trump, Attorney General Jeff Sessions, both my US Senators, and my US Congressman. Its insane what is happening. What's next, no more insulin for diabetics? No more high blood pressure for those with the disease? No more antibiotics so we just die off?

Don't we have a right to life, liberty, and the pursuit of happiness under the Constitution?

What about the ACLU suing the DEA for this?


Have you ever considered going public with your story? I know that many people would not be comfortable with that, but some people are. The blog Pain News Network regularly publishes first-person accounts of how people's lives are being affected by the opioid hysteria. ( https://www.painnewsnetwork.org/ ) - if you felt like you wanted to share, it would be a great place to do it.

I personally believe that the only way the tide is going to turn on this is for the general public to get a more balanced view about this subject. We need to get the media to start covering the stories of people who are being harmed by these changes in policies. I listen to NPR a lot and even they are extremely biased on this subject. Every week I hear stories about people who have overdosed or who are addicted, but I have yet to hear any stories about pain patients who use their medications appropriately (or those who have committed suicide when their doctor decides they won't prescribe to them anymore).

The thing is, no one cares about this until it affects them or close family member. Everyone thinks they are safe. They never imagine that they might one day be living with chronic pain that incapacitates them and prevents them from working, going on vacations, doing activities with their kids, etc.

Anyway, that is great you've made an effort to reach out to politicians... every little bit helps. I am in the process of working on a letter to my local NPR station to highlight their extreme bias on this topic and to urge them to start telling the other side of the story.

Last edited by Cake; 04/23/18 07:04 PM.
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280244
04/24/18 07:19 AM
04/24/18 07:19 AM
Joined: Jan 2012
Posts: 559
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Jeffn Offline
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I keep meticulous records and give them paper on every appointment. But I am always honest and I think my saying my pain at the time being a 4.5 / 10 was used against me. I had been waiting in the exam room and had pillows with me so I was lying down which helps my pain, and I had taken both my long acting narcotic and short acting narcotic only an hour later because walking through the clinic on a knee that needs replacing is difficult. But I think they are cutting everyone back, regardless. I've been on 110 mg of oxycodone for 1.5 years. The ridiculous thing is that back in 2001-2002 I was taking 170 mg a day and then was put on methadone which worked too well. And I got off all of it on my own once I got remicade and it began working. Like 170 to 0 in less than a month. ON top of that, I just underwent a blind pscyh eval (I had no idea what was happening) and was told my opiate abuse risk score was 0%.


Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma. 7 hour spine fusion surgery in April 2014 for cervical spondylotic myelopathy and radiculopathy. Tried for a year to return to work and couldn't make it past a 5 hour day, so was forced to go on disability in 2015 and haven't been able to attempt another day of work since then. Living to help others now.
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280260
04/26/18 08:33 PM
04/26/18 08:33 PM
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Posts: 559
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Jeffn Offline
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Last edited by Jeffn; 04/26/18 09:16 PM.

Dx w/ AS in 1985. HLA-B27+. Left total hip replacement in 1998, lost 2" of height due to osteoporosis. Relevant meds include Remicade, Oxycontin, Percocet, Lyrica, Soma. 7 hour spine fusion surgery in April 2014 for cervical spondylotic myelopathy and radiculopathy. Tried for a year to return to work and couldn't make it past a 5 hour day, so was forced to go on disability in 2015 and haven't been able to attempt another day of work since then. Living to help others now.
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