Chronic Pain: What They Want You To Know

🔹The NIH reports that 25.3 Million American adults suffer from daily pain. 🔹The NIH reports that 25.4 Million American Adults category 3 Pain (on a 1-4 scale).

🔹The NIH reports 14.4 Million American Adults category 4 Pain (on a 1-4 scale).

Chronic Pain is defined as an ongoing or recurrent pain, lasting beyond the usual course of an acute injury or illness or more than 3-6 months and which adversely affects the individual's well being.

🔹American adults with category 3-4 pain were more likely to

  • Have worse health status
  • Use more health care
  • Suffer from more disability

If the above statistics weren't enough maybe the ones below will open you eyes.

It is said by the NIH that nearly 100 MILLION Americans suffer from chronic pain, & 1.5+ BILLION people worldwide suffer from chronic pain. Also 1 in 10 Americans report that they experienced pain daily for three months or more.

I know someone reading this is going to be thinking "Why, do I want to read another story about another "addict"?" Well, to that person I ask that you keep reading! Not all who live with chronic pain are addicted to narcotics and jonesing for the next high. There are SO very many of us who are NOT very far from being addicted and spend a great deal of time trying to spread the word about the use of legal pain medications. No matter how we chose to deal with the pain, we still have to live with chronic pain each and every day. Day in and day out with pain THAT....NEVER.....GOES......AWAY..... Chronic pain is about so much more than pain meds. Honestly, it is about finding the best way for each of us to live life with chronic pain. Trying to find a way to just survive each and everyday. Trying to just get through each hour, each day, each week, each month.

Here's a couple questions that get asked a lot! Do some choose to use legal pain medications to treat their pain, or do some choose to stay away from pain medications? The answer is easy! Yes, to both. Some use strictly pain medications, while others use a mix of holistic options and pain medications, and others chose solely they holistic methods. It's a personal choice that only you can make for yourself. Are some getting medications illegally?? Yes! But you can't judge all 100 million of us who deal with chronic pain in The US for the one (or more) bad apple you've come in contact with. You have to think about this. Would you want to live a life always in pain? Always hurting? Having to take the pain into account when planning anything, even just a trip to the grocery store because you never know when the meds might wear off or when the pain might become so unbearable that you can't finish whatever task or outing you're on.

I wish people would remember that I am still me. I am not lazy. I when folks(family, friends, strangers) think I am a burden. I feel guilty every time I say no to someone due to my health. Take the time to understand before you judge-Conversation doesn't always have to be health related. Lastly, it is not a competition who hurts more or is sick in some way. Complete strangers want to one up me at the doctors office - not impressed. ~ Tammy, Canada

People in general don't understand pain. Pain is something you feel when you stub your toe, twist your ankle, jam your finger or even for a few short days after surgery. But in general when they think pain, they think acute pain. Until you've live chronic pain it's not something you can wrap you mind around fully. You just can't understand that it's not something that just goes away in a few minutes or a couple hours or even a couple days. It may never go away. Ever. It may be something that we have to wake up to every day for the rest of our life.

We're not looking for sympathy, but a little empathy would be very appreciated! ~ Amanda, Ohio

All we want from our families, friends and the public as a whole is a little empathy. We just want people around us to show that they care. That they have an interest in learning about what we are going through on a daily basis. It means the WORLD to us when people ask questions about what we are going through and what they can do to help. And it means even more when they ask how our pain is. I can't even explain to you how much it means when someone asks that 5 word question. "How is your pain today!?"

"Even when I look normal, I am still in pain. On my worst days for chronic pain, I wore the most makeup. I put on my mask to fake being well, not fake being sick. I can't take pain pills due to my stomach problems, so I just have to do less and rest when I am in pain. I can work hard for a few days. But then I pay for it with my sore joints and have mandatory rest for a few days" Megan ~ Georgia

There are a lot of days I spend in pain, but you would never know it. I wake up and put my "cape" on and go about my day. I have a husband and three little people who depend on me to be there for them. Honestly if it were not for them I would wallow in my misery. Not every day is good, but there is something good in every day. Kyndle ~ Missouri

Megan & Kyndle hit the nail on the head when they both speak about their daily pain levels. As well as when they speak about how they deal with it. Like many, instead of saying anything they put on their CIW (chronic illness warrior) cape and fake it till they make it. There was a study done in 2012 on the Lupus Community by the American News Report. During this study it became clear that there is a true gap in communication between those with Lupus (and most likely all chronic Illnesses) and their families. Their study found that 87% of lupus patients downplayed their symptoms and Need in order to not upset their family members. In many cases they don't want to share how they feeling so they don't have to deal with looks of pity from others. Or hear the "Oh you poor thing!" That's not genuine. But mostly people don't want to worry and stress their families. If they don't tell them how bad it really is then their family won't be able to worry as much. It's awful that a person can't be honest about how they are feeling and where their pain level-is at for fear of upsetting their friends and family. We (those with chronic diseases) should never have to or choose to hide our pain from anyone. But especially from those we are closest to us.

Keep in mind that of all the chronically ill patients that take pain medications only 5% become addicts. When hearing about the opioid crisis, sadly they have combined illegal and legal substances together. Most of the deaths that are occurring are those due to illegal substances. Chronic patients are being denied medications because of this serious problem. ~Amy, Michigan

The CDC just recently to release more accurate numbers than those that had been reported. In the 2018 Annual Surveillance Report of Drug Related Risks & Outcomes by The Centers for Disease Control they state that "14,487 out of a total of 325.7 MILLION people in US died from LEGAL PRESCRIPTION opioids." That's .000004% of the population. This is much less than the numbers we have been hearing as lately where the CDC has combined death by legal prescription meds & death by illegal illicit drugs. Is the updated number too many? Yes, honestly even one is too many. But it is not quite the problem that is it being made to seem it is. People have been using pain relieving products for YEARS, more than we can even begin to conceive I'm sure. Are the products available now a thousand (or more) times stronger than the stuff our Great-Grandparents used. No doubt! With evolution and change of society comes evolution and change in medicine. I think for most of us that is the way we would like it to be. Can you imagine dealing with all the conditions and injuries we have to deal with or potentially deal with now but only having access to the pain relieving methods that they used in 1800's?? No, it's not effective. Are there people who abuse narcotics? Absolutely! With just about anything you can find abuse of it in some way. With the evolution of cars comes the abuse of speed. With the evolution of technology comes cyber crimes. I digress, there always has been and always will be abuse of medication in some meaning of the word. I just wish everyone wouldn't assume that just because you have the medication prescribed to you that you are an addict.

I never knew pain, until Lupus knocked me down and I never knew strength until I got back up" ~Christall, Missouri

Chronic Pain SURVIVORS are just that!! Survivors, because we survive each and every day to live another day to tell our tale. Myself and many other United States Pain Foundation, WEGO, Chronic Disease Coalition Advocates, and many many more Advocates work so hard each and every month to share stories of chronic pain survivors and to show that not all those who take pain medications are doing so illegally or are addicted to them. Many of us take pain medications to get through the day but many have also made the choice to use other available methods. Really we just do what we have to do to get by! We want to spread the word this month especially as September is Pain Awareness Month that there are all KINDS of chronic pain conditions. Many that you and I might never even consider. So please if you get nothing else from today I hope you get this. If you meet someone somewhere and learn that they deal with daily chronic pain don't assume the worst. Don't just jump to the fact that they are an addict simply because they choose to use medication to treat their gain. Or that they are going to over dose because in most cases that's not the case. We are all just trying to survive another day with our chronic pain.

With Love,

Amber

Medical Research with Antidote

Medical Research is a topic I know I can’t be the only one interested in. Sadly, when you have chronic illnesses like I do, you hope and pray for medical research to be conducted on your conditions. Without medical research, many of us wouldn’t be able to live the lives that we are living. For me and many other Lupus patients, Benlysta (Belimumab) has given us part of our lives back. Without this med I only have a few GOOD DAYS a month, but with it, I have several GOOD WEEKS!!! Lupus isn’t the only condition that benefits from medical research. Any long term illness including, asthma, heart disease, migraines, diabetes, other autoimmune disorders besides Lupus and other conditions like cancer or Alzheimer’s benefit from ongoing research! Benlysta was approved in 2011 after going through many trials and final approval by the FDA. Most recently after trials and research, Benlysta was released in a injectable form that can be given at home which will further imorove peoples' lives. So what exactly is medical research?According to The Nature journal, "Medical research involves research in a wide range of fields, such as biology, chemistry, pharmacology and toxicology with the goal of developing new medicines or medical procedures or improving the application of those already available. It can be viewed as encompassing preclinical research (for example, in cellular systems and animal models) and clinical research (for example, clinical trials)."

Many people struggle to find medical research and clinical trials for their conditions and often have difficulty understanding them due to the complex medical language used. Depending on a person’s condition & location, finding a local trial can be difficult. However, I have recently found and partnered with an AMAZING company, called Antidote. Antidote works to help patients get connected with clinical trials and provides easy to understand descriptions of each trial without all the medical jargon. They have a very easy search function on their website where you search for your condition, provide your location and indicate how far you are willing to travel. The site will then provide a list of open trials for that condition. Currently, there are 69 open trials nation-wide for Lupus alone. Once you put in how far you are willing to travel, the site asks you basic questions to try and connect you with the best trial for you! 

The best part is that this is a free search. There is no cost to search for trials for your condition and if you have multiple issues you can search for multiple trials. If you get accepted into a trial you would only be allowed to do participate in one trial at a time. 

Being part of a trial does seem scary and does have its risks like almost all things medical. Despite this, it is imperative that people participate in this kind of medical research. Without clinical trials, the world of medicine would not advance and treatments would stay the same as they have been for years. If you feel called and there is a trial near you, please at least apply to see if you could benefit from participating. Not everyone who applies for a trial will get accepted, however. I was curious as to how many people would be willing to partipate in research, so I asked a generic question to my Lupus Support Group, "If you had the option to join a clinical trial, would you?" The responses varied. Of the 27 people who responded, 22 stated that they would participate, while the remaining 5 said they would not participate. The biggest reasons reported for not participating in a trial were that it is scary/dangerous, and the amount of time and needles (for IVs or blood draws) involved. 

If you are interested in medical research and write a chronic illness blog and might be interested in partnering with Antidote, please contact me. I have just began a partnership and would love to get the word out and get others involved. I know what you are probably thinking. And the answer is NO! I do not receive any commission or payment of any kind for referring other bloggers or recommending people use the search tool! I am just truly excited that there is a tool like this that exsists and is available to everyone. They may not have your condition listed but they are working on finding more trials for more conditions. I am so excited to share this information with you and as I learn more I will continue to pass along information. If you would, please share this information with people you know or with your communities. We must get the information out about the need for more involvement in medical research so we can advance treatment of chronic conditions!!! If you would like to check out the search tool or the website for my information I will list the website below. You can also find the link on my sidebar within the blog. Soon I will also be adding a page focused on current trials available for conditions I currently have.  ANTIDOTE WEBSITE: https://www.antidote.me/

LIST OF CONDITIONS: https://www.antidote.me/ Amber 💙 Other References:

https://www.nature.com/subjects/medical-research