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Don't Punish Pain rallies- April 7th #280186
04/08/18 07:35 PM
04/08/18 07:35 PM
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Madison, Wisconsin, USA
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Cake Offline OP
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Yesterday there was a rally in many cities around the nation called the "Don't Punish Pain" rally.

If you search on Twitter for #DPPRALLY2018 you will see photos, articles, and some videos. There is also a Facebook "Don't Punish Pain" group, which is where the rally originated. It was a purely grass-roots effort.

The purpose of the group was to get some media exposure for the ways that legitimate chronic pain patients are being harmed by the increased restrictions on opioid prescribing. While reading through the twitter posts, I came across this excellent article written by a woman with AS, which is one of the most articulate articles I have seen on this subject. I wanted to share it with folks here: https://beingcharis.com/2017/10/22/dear-prescription-opioid-debaters/

For anyone who wants to be well-informed about this topic, and who wants to get more involved if you are concerned about what is happening, the Pain News Network is a great resource. They are consistently publishing articles about the facts regarding the opioid problems in this country. For example, the CDC has recently acknowledged that illicit fentanyl is playing a much larger role in overdoses than prescribed medications. This is something you will not hear about on your nightly news program, though.

I speak as someone who has been on Enbrel for many years, as well as methotrexate, and an NSAID, and despite the benefit I get from these drugs, I have always needed pain medications as well. I know that I am fortunate to have a doctor who continues to prescribe these for me. I am on a relatively low-dose of morphine, under the 120mg cutoff that has been put in the CDC guidelines. I am very concerned that newly diagnosed patients who are just getting started in treatment are not going to have access to opioid medications the way that I was, due to the changes that have occurred over the past 7-8 years.

You may not be taking an opioid medication today, but all of us should be very concerned about what is happening. Even someone who is perfectly healthy can end up with a painful chronic disease or injury at any time. We should be concerned about those who misuse their medications and struggle with addiction problems, and we should be equally concerned about the people who do not abuse medications and need them to function while living with chronic pain.

Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280187
04/09/18 02:03 AM
04/09/18 02:03 AM
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Thesnakejakw Offline
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Very well put. Chronic pain patients have been the scape goat for all the illict fetynal ect coming on to the streets. Many are cut off and confused as nothing replaces it for pain, I mean there are some alternatives but sometimes that don't work. I my self never misused my medication, but in previous post I made you can see what can happen to anyone. Which also needs to be addressed is the people who prescribe the medication needs more knowledge on the interactions between multiple prescribed narcotics and the effects it puts on decision making.

I also think doctors shouldn't throw you under the bus after a 6 month long + dependence of drugs and should make sure you have a tapering plan or refferred to a methadone or Suboxone clinic asap the next day I was refferred and had a month waiting period with no taper . I don't know if you know how a withdrawal like that effects someone but it kills them on the inside and your trust is broken.


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280191
04/10/18 08:17 PM
04/10/18 08:17 PM
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Madison, Wisconsin, USA
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Cake Offline OP
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The harsh reality of the current climate is that any person who is taking prescribed scheduled medications (pain meds, benzodiazepines, and others) has to be 100% on point with their compliance. This means passing every UA, filling scripts on time every month (not trying to fill a couple of days early), going to the same pharmacy (and discussing with doctor in advance why another pharmacy needs to be used), etc.

Anyone who deviates from these is going to risk their ability to get a doctor to prescribe.

The deeper problem though is that many doctors are over-reacting to the CDC guidelines and using them as an excuse to not prescribe any pain medications. From what I have read, this seems to be a big problem in the VA.

Then you have the issue of UAs and how a doctor responds to a problem with a UA. Generally, the patient has absolutely no power in these situations and is completely at the mercy of how the doctor chooses to handle it.

The sad part about this issue for me is that people who don't currently use these medications can fall into complacency and say "well, this doesn't affect me so I don't have to worry about it." Trust me.... the day they need adequate pain control and they can't get they are going to care a lot.

I currently have the pain medications I need. But I don't feel comfortable sitting back on my laurels. I'm not healthy enough to go out to protests so my efforts are focused on sharing information so that more people can be informed.

Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280192
04/10/18 09:50 PM
04/10/18 09:50 PM
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SouthernMoss Online
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Cake, this is an issue that affects my family. Thankfully, I don't have to take controlled medications, but my husband does. He has severe OA (don't let me get on my soapbox about people who say it's "just" osteoarthritis). His spinal x-rays look as bad as a spondy's x-rays, except it's full of osteophytes instead of syndesmophytes. In addition, he has a torn rotator cuff that cannot be repaired because he can't tolerate anesthesia due to heart and lung conditions.

We are very fortunate that our family doctor is willing to prescribe the pain medications he needs and trusts him to take them properly. I shudder to think what my husband might have to go through if our family doctor moves away and he has to start over with someone new. It makes me very angry that people like you and he are scrutinized and judged, even when using meds properly.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Don't Punish Pain rallies- April 7th [Re: SouthernMoss] #280196
04/12/18 09:52 AM
04/12/18 09:52 AM
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NoreenT Offline
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Thank you for the 1post by cake with the article by the young lady expressing her views on opiates. I have not been on the boards in years I guess I have been busy living but after 6 years of pain management with my Remuy he just gave us notice to all patients (in DELAWARE) that he being told he can not prescribe the Pain meds any more and is sending me to a pain specialist (which has been a waiste of my time) but is my only choice. I hate. Having to focus on my illness and pain but now that I am losing meds I am trying to figure out what will I do.

I have had As for 18 years was undiagnosed for 9 but started getting iritis so this was how they finally figured out what was wrong. My history is complicated I have tried every thing but a voodoo doc ha. The pain meds were the only thing that gave me a quality of life. Basically I have gotten off one med on and already my quality of life is toileting sorry to be so dramatic I can post later a more civilized report but just wanted to say there must be more of us out there.

Like the Twitter letter cake posted I started thinking there must be many of other chronically ill people out there who are in the same boat we need to all somehow join voices. If I can do anything to help someone tell me before it is too late we have the right to be heard.

Usually I just read all of everyone’s posts because I learn more about my illness thru the real people out there than any internet article.

Hope to hear soon from others out there.


Diag: AS, undiagnosed 9 years ago 2002, diagnosed 8 years in the family grandfather, 2 first cousins

Meds: Prednisone(took Remicade away due to MS symtoms), narcotics for pain, doxipin, clorazapam, Hormone Treatment Biodenticals

Happily Married, 3 boys 9,16,18, 2 dogs
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280198
04/13/18 01:12 PM
04/13/18 01:12 PM
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Boston, MA
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This issue just infuriates me. Once or twice a year I have a full-blown flare of my AS (used to be much more frequent before Humira, knock on wood), and the only thing that made life livable were Percocets I hoarded from prior surgeries (hip replacements, Achilles). I would have six or seven pills leftover (or a few more) because I stopped taking them when the surgical pain stopped. Those six or seven pills would last two or more years as I stingily only used them in desperation during a flare.

Now I am up front with my reheumatologist about wanting access to opiates (like one or two pills, when I need them) when I am having a major flare and I get treated like a street addict. Infuriating.


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280199
04/13/18 02:01 PM
04/13/18 02:01 PM
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NY, USA
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kjb Offline
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Hello All,

Just wanted to say, that this is a real problem. So many of us suffer. I have never been offered anything to help with my pain, from my Rheumy. I wish that she would. I have had surgeries that I had scripts, never used them and ended up turning the pills into the county drug take back program. In hindsight I wish I kept them. ;(

Also, the article written by Charis is awesome, all of her articles are great, she really has a way with words. I follow her. I hope that one day I can be as strong an advocate as she is. At this point, I am still trying to find a treatment that works for me. Anyway, take a minute to look through all of her articles, they are worth the time.

Re: Don't Punish Pain rallies- April 7th [Re: NoreenT] #280200
04/13/18 10:36 PM
04/13/18 10:36 PM
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Madison, Wisconsin, USA
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Cake Offline OP
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Originally Posted by NoreenT
Like the Twitter letter cake posted I started thinking there must be many of other chronically ill people out there who are in the same boat we need to all somehow join voices. If I can do anything to help someone tell me before it is too late we have the right to be heard.


I'm sorry to hear you are one of the people being personally affected by this issue, Noreen.

One blog that I highly recommend is Pain News Network. The articles are good, but the comments section can be even better. The editor of that blog is always looking for people to share personal stories, if you ever wanted to do that. The blog gets a lot of readers, so its a good place to stay on top of developments with opioid prescribing.

Re: Don't Punish Pain rallies- April 7th [Re: Cake] #280207
04/17/18 05:49 AM
04/17/18 05:49 AM
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Jeffn Offline
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I was told to expect a 20% cut in my narcotics next month. In addition to severe AS that I've had since I was 16 and diagnosed in my early 20's, due to doctors back then not knowing what I had, and of course I'm HLA-B27 positive, but also have all major joints below my waist and in my hand are wearing out. I had a hip replacement back when I was in my 30's, and have been bone on bone in the other since then but I put up with it because my operated side still limits me before my non-operated side due to all the muscle they had to cut through that grew back as weaker scar tissue. But now I need a knee replacement as well, I need the big toe of both feet fused and a large osteophyte is growing up into the roof of my foot so I can't wear shoes anymore and both hurt just walking 10 feet to the restroom. My spine is 100% fused from either AS or surgery, but by the time they did the surgery my spinal cord had been "strangulated" for 2 years according to my university professor of neurosurgeon, had a large contusion (bruise) in the cord and the back of my cord looks like the letter "z" from the bone spurs that grew in from the front, back, and both sides, and despite a 7 hour neurosurgery I still have severe compression of nerve roots at C spine and palsy from one nerve root with abnormal deep tendon reflexes in my arms and legs with clonus, I have osteoporosis with multiple compression fractures up and down my spine, and my neck fused off center which puts a huge moment arm of torque on my neck muscles to try to counterbalance the off center weight. Also, my right thumb now has a large osteophyte growing up into the top of my hand at the final thumb joint so I can't use my right thumb as I should, making using a pen hard and using a laptop not trivial. I was told I have "generalized osteoarthritis" meaning every major joint including my spine and legs and hands has cartilage that has been destroyed or is final stages of being destroyed so I'm bone on bone all over my body. There is currently NO treatment for OA and nothing doctors can do to slow it down or preserve the joints that so far haven't been destroyed, so at less than 55 years old, I'm totally disabled and rarely leave our bedroom where I sit in a zero gravity chair nearly 24/7 since nothing else fits me in my altered physiology. So long story to say I'm a wreck, strong in the Lord, but my body has been brutally attacked in so many ways that despite 20 surgeries, I'm still in need of at least 3 major surgeries right now and have essentially given up on more surgeries because all the other joints are failing as well so I can't entertain another 20 surgeries, especially since my last surgery didn't go well with anesthesia having to be reversed when my blood ox level dropped to dangerous levels, and I'm a high infection risk due to anti-TNF medicine, so at some point you just have to say enough's enough.

However, now the government is mandating these mindless cuts in our pain meds, the last line of defense, the only thing that gives me a medial existence. I've been in pain since I was a teenager, and now in my 50's, and I have a pain threshold so high the dentist can drill into my teeth wtihout any soft of novicane, and I don't feel IV sticks or shots anymore. I wake up each day in 7-9/10 pain, take my oxycontin and wait 1-2 hours, on good days I can get up and at least go to the restroom without urinating on myself, but some days its so bad that after an hour I have to take a percocet that is supposed to be for breakthrough pain because I've been on pain pills for years and yes I'm not opiate naive, and of course I have a bit of tolerance so my body needs all its getting and actually more. I was going to restart physical therapy to ensure the 30 pounds I lost in the last 7 months sticks, but with this cutback I'm not sure I can even get to physical therapy, and I probably will sit around and regain all 30 pounds and be back obese again.

Sorry to rant but I've about had it with our cowardly government and their targeting of us valid pain patients who are victims of genetic disease and not some poor lifestyle choices, we've done nothing wrong, and yet we pay for the sins of the idiots who buy fentanyl from street dealers and end up overdosing trying to get high on narcotics. Why should we suffer our pain holocost just because some scientists who probably have never felt any pain thinks we are taking too much medicine? Why should we die in such terrible pain or suffer for years wishing we were already gone? Why should we surrender the balance of our lives to a system that punishes the innocent while statistics show none of these efforts is making so much as a dent in the real problem, precisely because they are shooting at the completely wrong target?

Last edited by Jeffn; 04/17/18 05:53 AM.

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] #280209
04/17/18 11:39 AM
04/17/18 11:39 AM
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Miguelito Offline
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Jeff,
That is one of the most powerful posts I have ever read. I really don't know what to say, but I wanted to let you know that I read it and was moved by it.
Mike


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
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