RSD Angels Network 

RSD Angels Network 

I’m humbled and excited that this month,not only did I get a news article into the “Pain News Network ” (as you can see a couple of post ago!!).. But now how exciting to be spotlighted in the RSD ANGELS  

 Express newspaper for the Holidays!!!Im honored & humbled & wanted to share with you!  Thank you!!

  

A Call To Action: The War Against Chronic Pain Sufferers & CRPS

A Call To Action: The War Against Chronic Pain Sufferers & CRPS

Hello Luvs,

I wanted to let you know how excited I am that my blog post about this “war against Opioids” for Chronic Pain Patients, has made it into the Painnewsnetwork.org column and also now has found its way to the blog on one of the 2 National websites for RSD/CRPS ( I think it is on the other one, or on it’s way to RSDHOPE.org website also); RSDS.ORG and it is on their blog. I’ll make it even one easier for you because here is the link:  http://rsds.org/war-against-chronic-pain-sufferers/

Now I wanted to let you know that some of my posts, or many of them have been “password protected” for awhile.  IF you would like to read my blog in its entirety or read some of the protected posts, please please just drop me a quick email telling me who you are. I will in turn straight away send you the new password to those protected blog posts. Don’t be shy, I don’t mind at all. But there are some people who wish me harm and to those people, well we just don’t need them to read anything that may just flare up their tempers or any other unwanted behaviors, right?  Some posts, I just recently protected and those will be open again after awhile, some will always be protected. But please feel free to just ask, because you might get something awesome out of those posts and you may not feel so alone if you’ve gone through any similar situations to mine. Remember my new email and best one for this purpose especially is : RASEforCRPS@yahoo.com, and I won’t hesitate to send you the pw for all of the posts, so you can open and read them.

I was recently asked to be part of a documentary and I even spoke with the news employee and she was really very nice to me. I was going to do the documentary but then I got this bad feeling inside that it wasn’t going to have the same “take” about Opioids that I have in my heart. I’ve never taken an illicit drug, nor smoked pot, nor drank nor did anything considered “risky” or “bad” in my life really at all. I was always the “good girl”. I got hurt in a bad MVA in 2002, and I was forced, to take pain medications, have tons of epidural injections, nerve blocks, trigger point injections, Cortisone/lidocaine injections and I had 3 yrs of TBI rehab and 8 years total of PT and OT. and I’m DONE! The only thing that has helped me at all are the pain meds and I hated them at first. I didn’t want to take them and I was afraid.

You can be afraid, for good reason! If you have a “bad” Dr and he over prescribes and then leaves the practice and leaves you to “hang out to dry” without any help….that’s a bad Dr.!! Now I agree that there are bad patients as well. But the majority of chronic pain patients and those of us with CRPS are not “bad” patients  and we don’t want any meds to gain anything from it except Pain control. I will write to whomever I must to get someone to listen to me, to us and to help us! I will continue to write article after article and talk until I’m blue in the face and my pain is at a #9 if I must, to get someone to listen to me.

People with real pain, are the reason these Opioid medications were made in the first place. We shouldn’t have to suffer because some others abuse the medications!  There are many ways for all of us to be “safe” today with the pain contracts and the drug testing and the “MAPS” computer program and all kinds of things to keep everyone on the “up and up”. So Please, read my articles, in the short form or the longer version, I don’t mind either way. But Someone please listen to me, to us and let our voices be heard….As I started last November 2014 during “CRPS Awareness month” …Let’s “KEEP HOPE ALIVE” …that is MY SLOGAN and I’m sticking to it! #PainedLivesMatter

Thanks, Luvs,

Suzanne

My Life And The War On Pain Patients (*I was A Guest Columnist For PainNewsNetwork.org)

My Life And The War On Pain Patients (*I was A Guest Columnist For PainNewsNetwork.org)

I had the pleasure of being a guest columnist for the Pain News Network. It’s a non-profit, Independant online news scource commentary for chronic pain & pain management. Here’s my article on Dec 7, 2015:
My Life and the War on Pain Patients

December 07, 2015

By Suzanne Stewart, Guest Columnist

One of the arguments against gun control is that the “bad guys” will always have access and the “good guys” will die because their weapons are taken away.

That’s what’s happening now to chronic pain patients! We are fighting a war against being robbed of the very weapons we need to fight. I have complex regional pain syndrome (CRPS) and I’m fighting to live not “pain free,” but with less pain and more living.

Those in positions to help, need to take the time to do so. All 50 states now have proclamations that explain the burning, fire-like pain of CRPS. They discuss allodynia, or extreme sensitivity to touch, and the pain it brings.

But all of this means nothing if the government, FDA,CDC, physicians, and pharmacies take away the means of lessening our pain. We follow the rules, sign contracts with our pain doctors, and jump through hoops to get what we need to try and live some kind of life.

On the other side of the spectrum are those who don’t follow rules and who break laws. But they have a different disease called addiction and they ruin it for all of us. Only about 5% of opioid prescribed patients are addicted, yet they are making us all feel like criminals.

Would these same agencies and officials take anti-depressants away from the hopeless, or insulin from a diabetic?

 SUZANNE STEWART

The CDC’s new opioid prescribing guidelines could make things a lot worse next year. Many physicians are already refusing to give medicine for pain when it is truly needed. But those who who are true addicts always find a way to get what they need, while law abiding citizens, suffering daily, have no means other than self advocating. We need to rally and try to do something about this travesty.

Remember, we are not addicts! We are patients with chronic pain, who’s bodies are dependent on medications that help us live. Without proper pain control, there’s nothing left.

It is despicable that some pain doctors are being forced to push invasive surgeries on more patients. Physicians who pledged to “do no harm” will do surgery, instead of prescribing the medicine so desperately needed for the real chronic pain population.

There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our primary care physicians and even tying the hands of our pain management doctors. The CDC, FDA, and other groups think that they know more about pain and pain management, but when have they ever studied such things?

They are making a fake war on prescription drugs, when it’s really some kind of smokescreen for saving money!

I say pick on the real criminals, not the chronic pain sufferers. I went through an awful experience last year, when my doctor of 12 years unexpectedly left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me.

I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are these non-medical personnel, these agencies, to say that malignant cancer pain is worse than non-malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the McGill pain index, right next to childbirth or amputation of a finger.

These lay people and agencies are trying to tell us that exercise and healthy eating habits, along with physical therapy and “behavioral therapy,” are alternatives to pain medication. They say that the goal is to stop the overdoses and prescription drug abuse.

The “addiction specialists” scream “HYPERALGESIA” to everyone on opioids for any length of time. They say the pain meds stop working and that we all get addicted! We are all individuals whose bodies may become physically dependent, but that’s very different from addiction. If it is working, then how can it be hyperalgesia?

In all honesty, if the doctor is a good one, he or she will only prescribe the amount needed. Why take it away if the patient and doctor are doing everything right and when it gives some relief? The innocents should not suffer for the crimes of a few.

Many patient advocacy groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams to make up these new rules and guidelines. They didn’t listen to the voices of the doctors and patients who live in the pain world. Many of the people who put these new rules together have a monetary gain.

One physician wrote in the Pain News Network that he has had patients on high doses of opioids for over 20 years and they have led quality lives. He also agrees that taking these meds from patients who’ve been on long term dosages is cruel and inhumane.

Sometimes people who want to change things to save a few dollars or get their products pushed, such as spinal cord stimulators and pain pumps, are not thinking of patients like me, who do not fit inside a nice neat box. My issues are different. I need these pain meds to survive.

So many lives have been lost because pain was not mangaged well! Chronic pain can kill you because it causes so many other issues and there’s a snowball effect when pain is not controlled.

Please use your voice and be heard. We need to form advocacy groups that will work together for the common good. Let’s stick together and not allow ourselves to be treated so inhumanely.

Suzanne Stewart lives in Michigan. She suffers from CRPS and several other chronic pain conditions caused by a car accident.

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org.

Suzanne Stewart

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

***************************

Who is & what is “Pain News Network?” 

(***this article and this little section regarding what this online Independant news scource is all about;  was copied and pasted right from their website so that you would get the direct information. I copied & pasted my article as well for this post, so you’d get the full newspaper article. Please visit them directly at:  PainNewsNetwork.org)

Pain News Network is a non-profit, independent online news source for information and commentary about chronic pain and pain management. Our mission is to inform, connect and educate pain sufferers, caregivers and health care providers about the pain experience.

It is estimated that 1.5 billion people worldwide have suffered from chronic pain — including about 100 million Americans. Although chronic pain is a common experience, many pain sufferers feel isolated and misunderstood by their doctors, co-workers, families and friends. Many also go untreated or under-treated by the healthcare system.

Our reporters and columnists cover not only the latest research, regulations and treatments for chronic pain, but the many social and financial challenges faced by pain sufferers — and the remarkable courage they display coping with what is often a lifetime illness.

Pain News Network is a Google News certified site. We are also proud members of the Association of Health Care Journalists and the California Association of Nonprofits

The Heart of a Chronic Pain Warrior!

The Heart of a Chronic Pain Warrior!

I wrote a week ago, a response from my heart; regarding the new CDC prescribing guidelines for …but actually “against” Opioids. Here is my shortened version: “From The Heart, About The War Against True Chronic Pain Sufferers!!”
Remember the “War” against carrying a gun? The “bad guys” will always have access & “good guys” die because their weapons are taken away! It’s happening now to pain patients! We are fighting against being “robbed” of the “weapons” we need to fight against the debilitating nerve pain, such as CRPS, that “WE” live with daily. I’m fighting the battle to live not “pain free”; but with less pain and more living!
Those in positions to help, need to take the time to do so! All 50 states now have Proclamations that explain the burning, “fire-like” pain of CRPS. They discuss Allodynia, or extreme sensitivity to touch; and the pain it brings.
But all of this means nothing if the Government, FDA,CDC, Physicians & Pharmacies take away the means of lessening our pain!
We follow the rules, sign contracts with our pain Dr’s & we have to jump through hoops to get what we need to try and live some kind of life.
The other side of the spectrum are those who don’t follow rules & who break laws! BUT they have a different disease called “addiction” and “they” ruin it for all of us. ( I read that only 5% of Opioid prescribed patients, are “addicted”)
Would these same agencies and officials take anti-depressants from the hopeless, or Insulin from a Diabetic?
“They” are trying to make us feel like criminals. Many of us have been through the rigors of the Auto claims adjusters, who have the power to take everything away with the swipe of a pen! It’s ruthless today for people living with chronic pain!
In 2016,conditions will continue to worsen unless we rally and try to do something about this travesty! This year the prescribing guidelines are getting worse. The Physicians are refusing to give medicine for pain when it is truly needed. Those who who are true “addicts” always find a way to get what they need! While law abiding citizens, suffering daily, have no means other than self advocating!
Remember we aren’t “addicts”! We are patients who are suffering daily with nerve pain and who’s bodies are “dependent” upon a medication that helps us live! Without proper pain control, after caring for daily basic needs, there’s nothing left.
It is despicable that some pain Dr’s now are being forced to “push” invasive surgeries on more patients than they would have in the past. Physicians who’ve pledged to “Do No Harm” will do surgery, instead of being scrutinized for prescribing the medicine so desperately needed for the REAL chronic pain population?
There are new controversial prescribing guidelines coming and some already in effect. These are leading to more and more restrictions put upon our GP’s and even tying the hands of our pain management Dr’s. The CDC, FDA, and other groups think that they know more about pain and pain management, when they have never studied such things? They are making it about a fake “war on prescription drugs”! This is some kind of smokescreen for saving money!
I say “Pick on the real criminals”, not the chronic pain sufferers! I feel uneasy & concerned. I went through an awful experience last year, when my Dr. of 12 years left unexpectedly! He left his practice under a cloud of suspicion. I never wanted to take any of these meds. I never smoked or drank! I was just naive enough to think that I could finally trust someone in this life and then the rug was pulled out from under me!
I’ve read that they are taking most pain medications away from anyone with non-malignant pain. Who are the non medical personnel, these agencies, to say that malignant pain is worse than non malignant pain? Unless they’ve experienced either, how would they know? CRPS is #43 on the “McGill Pain scale”, right next to childbirth or amputation of a finger!
These lay people & agencies together are trying to say that exercise, healthy eating habits, along with PT and “behavioral therapy” are an alternative to medication for this kind of pain management! They say that the goal in all of this is to “stop the overdoses and the prescription drug abuse”. In all honesty, if the Dr. is a “good one”, he or she’ll only prescribe the amount needed. Why take it away if the patient & Dr. are doing everything right & when it gives some relief? The innocents should not suffer for the crimes of a few!
They’re saying that the pain meds stop working for everyone & that we all get “addicted”! We are all individuals whose bodies may become physically dependent but that’s very different from addiction.
Many patient advocate groups have written to the CDC and the FDA and explained that they are not being transparent. They used biased teams of people to make up these new “rules” and guidelines. They didn’t listen to the voices of the Dr’s and patients who live in the “Pain world”. They found that many of the people who put these new rules together have a monetary gain!.
One Physician wrote in the Pain Network News, that he has” had patients on higher doses of Opioids for over 20 years and they have some semblance of a life”. He even agrees that taking these meds from us and others like us, who’ve been on long term dosages and who will most likely have to stay on them for their lifetime; is cruel and inhumane treatment! He said that they are “forcing us into suffering, sickness and possibly even death!”
The “addiction specialists” tried to also scream “HYPERALGESIA” to everyone on Opioids for any length of time! If it is working and has been, then how can it be “Hyperalgesia”? If they really think that Hyperalgesia exists and is a problem with high or low dose Opioids, then this one Dr., who did not give his name, said that “we must remove all intrathecal Opioid pumps because these devices deliver a MEQ directly to the CNS receptors that is far in excess of any dosage we can achieve by peripheral administration.”(PNN)
Please use your voice and be heard! We need to form advocacy groups that will work together for the common good! Let’s stick together and not allow ourselves to be treated so inhumanely!