CRPS and Chronic Pain – Help Spread the Awareness!

CRPS and Chronic Pain – Help Spread the Awareness!

By Staff.

November is Complex Regional Pain Syndrome (CRPS) awareness month, and National Pain Response is asking for those suffering from CRPS to share your stories and comments – especially stories and comments that may help others going through similar situations.

While CRPS is debilitating, CRPS sufferers share a trait that seems to be common many chronic pain patients – an (often silent) underestimated strength; despite the constant pain, despite the loss of social empathy that comes from a chronic pain/illness that is invisible to the outside world, despite the uphill battle for a respectful conversation regarding access to the very medication that keeps the pain at barely-bearable levels. A strength that CRPS sufferers and all chronic pain patients know and share amongst themselves – a strength that the “outside” world cannot, and sometimes chooses not to, understand.

Here are a few excerpts of comments from a recent National Pain Report story on National CPRS Awareness Month:

“I’m going to spread the word by contacting my senators and congressman and talk only about this horrible condition called CRPS. What have I got to lose? We gotta start somewhere...CRPS in my experience is the MOST painful condition I’ve ever felt. God bless my chronic pain brothers and sisters.”

“Overall, we are thankful for his improvements and progress these past 5 years. I pray for anyone suffering from his invisible and misunderstood illness!”

“After 8 years, 3 months and 27 days, of this paper trail, I admit that I am exhausted.
Not ready to stop, but ready to ‘start’. Instead of sowing seeds of dispersion and depression from dealing and not dealing with CRPS, I would like to harvest from my experiences a platform to navigate better.”

Click here to read the story and the full comments. 

These are not comments of self-pity, nor pleas for handouts or sympathy – but rather statements of strength and support that deserve awareness and respect.

As National CRPS Awareness Month often attracts an increase of news stories, we hope each and every news story helps raise awareness not ONLY of CRPS, but of all those who deal with chronic pain – and that these stories may introduce a few more people to the vast impact of CRPS and chronic pain. Perhaps then, there can be a better conversation about the political battle, or “crisis”, that impacts (but without consideration for) those living with chronic pain.

Keep wearing orange, spreading the word, and sharing thoughts and tips you may have that can help others living with CRPS and chronic pain.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Staff

7
Leave a Reply

2000
7 Comment threads
0 Thread replies
0 Followers
 
Most reacted comment
Hottest comment thread
7 Comment authors
  Subscribe  
newest oldest
Notify of
Sharon C.

November is CRPS awareness month. To bring attention to this horribly painful condition, we are supposed to wear orange and write our congressmen. So I write to any government official who has a mailing address. Anytime I leave home, I wear orange. I try to tell as many people as possible about CRPS. I’m
trying to help the chronic pain community as much as I can.

But what is the chronic pain community doing? Trying to recruit “qualified” pain
psychologists to talk me out of my CRPS pain. The next time a patient has bone
on bone osteoarthritis, let’s alleviate that person’s pain using psychology, instead
of knee replacement. If psyco babble doesn’t work for knee replacement, a wholly physical problem, it’s not an acceptable treatment for CRPS, a wholly
problem.

Any discussion about alleviating the symptoms of CRPS must include the option
to use opioids. People need to know that CRPS patients need access to opioids
just as much as anyone else who must learn to live with pain.

I hurt all the time and I’m tired I’m so very tired of hurting but instead of it getting better my Drs feel like there hands are tied and really don’t know how to make it better. The Dr that I have seen for year’s has not posted me to another Dr that doesn’t know my history but again hands are tied it got so bad that around 2000 I started having seizures due to the pain I had to start seeing a psychiatrist because they were not epelectic seizures, I have since been a seen in the ER repeatedly but BECAUSE they are not epelectic I have been called a multiple number if drug seeker names now my heart being bad because of them I’m still to terrified I go to ER now and the only medication that totally stopped my seizures ( Klonopin ) I’m told I can no longer receive so which is worse that are both dipiltating it doesn’t matter I guess because now I suffer from agoraphobia people are cruel and because of back pain that started seizures I was no longer able to work and I not be able to receive disability for either issue so what are people suppose to do. I’m sorry if this is all over the place but my frustrations has me all over the place and fearful of what is happening and if my pain is going to get worse from here on out!!

ElizabethR

I do not have CRPS specifically–“just” chronic back/neck/shoulder pain–but I do want to share that it can be worthwhile to contact your Members of Congress, perhaps especially following the recent change of balance in the House. I wrote to my Representative a couple of weeks ago regarding the “opioid crisis” and figured that–like many other times I’ve contacted government on various issues–I’d get a form letter response at most.

However, this time I was completely and very pleasantly surprised to receive a personal phone call from a member of my Representative’s staff. He sounded knowledgeable–like he’d actually READ my email (or maybe he’s even had some personal or family experience with chronic pain). He assured me that my Representative is aware of and will consider the concerns of chronic pain patients when crafting legislation related to opioid misuse–a situation that we did not create but are now being penalized for. I felt heard and valued as a constituent. I voted for this Representative on Nov. 6th, as I have throughout his long career. I feel that he has always deserved my vote but especially this time.

Rob

I am grateful for this site – I have Crohn’s disease for 37 years now, along with multiple surgeries and the aftermath of those corrective procedures, which cause more long-term pain than the condition they “correct.”

What resonates to me is the collective experience that is shared on this site – I read the stories, and I say – “that’s me.” Or “that’s her.” Another silent, neglected, suffering voice. There are two truths that can’t be denied: 1) As stated in this blog, chronic pain patients have an inner strength that is unique to us – it is born out of the never-ending pain and discomfort we experience. 2) We will never (repeat never) be able to communicate what we go through to non-chronic pain sufferers.

So what’s the answer? To me, Science (as always). We all owe it to each other to research the data, correct the wrong assumptions – and prove what we go through, and also illustrate the true root cause of the opioid “epidemic”. For those who are too young to remember, there was no opioid epidemic in the 70s – there was a heroin epidemic, just like there is today – what’s different now? Why was there so much heroin use before opioids were more widely prescribed?

Let’s all unify and continue to not only speak the truth – but prove it. I am one who has compassion for everyone, but more compassion for the victims of chronic pain. It is such a major, life altering experience that it can’t be communicated accurately – so let’s work to prove what we know is the truth. Responsible opioid use for chronic pain is the same as responsible use of any medication.

I am with you all, I support you all, and will do anything I can to communicate the truth to help us all.

May everyone get a decent night’s sleep tonight. Bless you.

I have had this horrible monster for almost 20 years and just published a book on it. RSD/CRPS from a Patient’s Perspective. It has been edited by a Doctor. It is on Amazon. In it I discuss the fact that the gov’t went on this attack on opioids without considering those in chronic pain. It is beyond imagination that in this day and age our government believes torture is ok for those who live in excruciating pain. Pain they can never understand because they will never feel this pain unless they develop the disease. The insurance companies also have a hand in causing us to suffer. They took radio-frequencies away from us and those actually put my RSD/CRPS to sleep for 7 glorious years. I am whole-body as well. Blocks work great on me but don’t last as long.

Getting a diagnosis can take up to 8 years and usually by then it is so hard to get the pain under control!! Physicians only get 4 hours of training on chronic pain!!!! How are they expected to be able to recognize RSD/CRPS with all its strange symptoms or believe what we say? The only way doctors will even hear about it is if they do a residency in chronic pain. That is why we have to educate the ER if we have to go in there and then they think we just want pain pills.

My general physician told me once, don’t go to the ER unless you break a bone or are having a heart attack. They will only waste your time and will only make you feel awful about yourself. How true that is!

Well, just remember my fellow survivors, moving is important for us even if it does hurt like … and we aren’t alone!!! Also, life is precious and no matter how much we hurt, suicide is not the answer!!!!!

Terry

It’s been my experience, when trying to explain to people how absolutely horrible CRPS can be, especially if it’s confined say to a single limb and not your entire body, is almost impossible. You would have better luck telling someone how much your arm hurts if you broke it and have a cast on it. Pain that doesn’t present with any outward symptoms or obvious distress, like a stitched up head or a cast. I have experienced confused looks, eye rolls, hrmphs, and even flat out disbelief. I feel like they look at me like someone making something up just to get drugs. Creating awareness for this little known condition is a monstrous task. Trying to get a little compassion from people and being prescribed the correct medication is almost futile. I don’t need sympathy or compassion from everyone necessarily but having a break from horrible pain because you have a prescription that meets your needs is vital to support a life that you can participate in. That’s all we want or need, nothing else. Why was the chronic pain community affected at all from the so called “opioid epidemic”?!!! There should have been exemptions for chronic pain patients who follow the rules and don’t abuse their meds. Why is that so hard? We’re not shooting up heroin or fentanyl and 98.2% of ALL opiate overdoses are from those two opiates alone. It shouldn’t have anything to do with patients taking prescribed medications! Think about that, it’s insane! If people started getting high from insulin would we cut back the meds from diabetics? It’s just unbelievable. Keep on writing to your congressman and senators. God bless my chronic pain brothers and sisters. Hang in there.

Alex

I am doing my best to stay abreast of the work being done by ATIP, the Alliance for the Treatment of Intractable Pain. They have filed a protest with the CDC and Medicare to attempt to stop these agencies from enacting their plan to force people like you and me off the only medication that allows me to have a quality of life. Opioid Pain Medication. For myself, I have tried all of the “Alternative Therapies” that the CDC says works – they don’t! Fortunately I am one of those folks who has the strength to just use meds to take the edge off. For lack of a better phrase, I have befriended the pain from my CRPS- cold type, Stage 2. I am able, despite full body CRPS, to hold down a full time 40 hour a week management job. Without my meds that working will end. I will no longer be able to work, drive a car, hunt, fish, and do all the things that my life a full and fulfilling life. I have written to congressmen, senators, state reps, the governor ad infinitum with not even so much as a response. I’ve heard this from many fellow chronic pain patients – I hate the word “Sufferers” – sure we have invisible illnesses that are in many ways debilitating, we are not sufferers, we are survivors, we are strong people, and we go all out every day of our lives to help and give comfort to people like us. My only wish is that the work ATIP is doing is the point of the spear that gets what we deal with noticed by those who think they control our lives. Be Strong my fellow survivors – tell our government that ENOUGH IS ENOUGH. If you can show your support to ATIP and add your name to the lists of people who are pain patients, maybe, just maybe there will be enough pressure put on Medicare, Medicaid and the CDC to let us live our lives – not just exist.