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

A Day In The Life…..Chronic Pain

Co-written by Amy Nora

Chronic Pain… is just that. It’s chronic, meaning it’s something we live with ALL the time. It is not the same as stubbing a toe or knocking your knee on the corner of the table.  There is no cursing or exclamation of words and a few minutes later life is perfectly normal and you are moving on.  Nor is it like breaking a bone, wearing a cast and being done with the pain and annoyance 6 months later. Chronic pain forces you to live differently.  Life becomes methodical, more deliberate in the actions we take, and how we live our lives.  This includes the simple things like getting out of bed, going out with friends, cleaning, or trying to cook a meal.  You live you life in pain; therefore, you come to accept various levels of pain as normal.  This does not mean that you would constantly rate your pain a 10/10, you may rate your pain as a 2/10.  However, you had to stand and make a sandwich so now that has spiked to a 7/10.  This is a fight fought daily by millions of Americans with degenerative diseases or chronic medical conditions.

I wanted to give you all a look into a day in life of living with chronic pain. But I decided to go about it a little differently. My friend and frequent contributor Amy Nora and I will both be sharing our views of what like living with chronic pain is like. As living with chronic pain can look very different for different people.

Amber’s Story

I feel that there is so much negativity in news about pain and pain medication these days with all the issues with the changes in the rules and regulations with narcotic prescriptions. There are people killing themselves because they can no longer receive their meds. Others are being fired from their Pain Management Doctors because they don’t take their pain meds frequently enough. We have all heard the stories. But I don’t want to focus on THAT today. I want to bring light to what a real day of someone with chronic pain is like. I want to talk about what a day with multiple conditions that cause chronic pain can be like. I think many people have a stigma in their mind that people with chronic pain take their pain meds and may have some pain everyday, but most of their day is spent doing what they want with no big issues. Just so we are all on the same page here’s a point of reference: besides taking pain medication I also use a combination of heat, hot showers, massage, muscle rub and yoga to treat my pain. I do suffer from multiple chronic illnesses that cause chronic pain, I live daily with Lupus, Fibromyalgia, Debilitating Migraines, Endometriosis, Interstitial Cystitis as well as undiagnosed chronic back, hip and sciatic pain.

For most people when the alarm goes off or they wake up, they probably start going through the day ahead in their mind. As far as what they have planned, what’s scheduled, what they are making for dinner etc. For me and those with chronic pain the first thing I do when I wake up is lay in bed for about 15 minutes let my body wake up so I can assess my pain. I have to lay there for a little while to let my body connect to my brain so I can really take account of how I am feeling.  I generally start at my head and work down. This morning for example, I started with my head, and the pain was like a 2/10. Continued down to my throat, neck and glands because I have been fighting a cold/sinus infection, that was like a 2/10. Then down to my shoulders, elbows and hands. Left elbow was a 4/10, still not sure what that was about, but it has been happening a lot lately. My hands, about a 4/10 as well. So I start doing some stretches to see if they are just stiff or if they are going to hurt all day. They seem to be stiff and the pain seems to ease with stretching, so that is a relief. Down to my belly, cramps are like a 6/10 as endometriosis causes MEGA cramps when its time for your cycle. My bladder is probably an 8/10, because I didn’t wake up all night and it feels like it is ready to explode. My low back is a 6/10 as is my left hip, and for the first time this week I didn’t wake up with any sciatic pain or pain in my left calf. Which has been very painful everyday this week. Overall, I would say my pain would be about a 6/10 this morning. So now that I have assessed the pain that I woke up with, now I have to decide what I want to do about. Do I go ahead and take something before getting out of bed, or do I wait and see how things go as the morning progresses? That is sadly the question I address each and every morning after I wake up.

Generally, my rule of thumb in the morning is that if my overall pain is over a 5/10, I go ahead and take something for the pain. I have learned that if I don’t the day is NOT going to get better. And I will most likely not be able to get the things on my to-do list done. Or at least not until later in the day. So this morning that is exactly what I did, I took something for pain got out of bed and did my morning stretches that allow me to be able to move in the morning.  Without those stretches, thanks to the fibromyalgia I would not be able to move first thing in the morning.  I won’t bore you with the exact play by play of my day. But at each step of the way I have to decide if I can complete this task or if I should wait and attempt it later. This morning after getting dressed and having breakfast, my first task on my to-do list was cleaning my bathroom, I knew I didn’t feel like it but it can only be put off for so long. For most able-bodied people they could probably go in and get it done all in one fail swoop. For me however, it takes several steps. Due to my pain and fatigue, any multi-step project will almost always require several breaks. Just to clean my small bathroom this morning I had to stop and rest FOUR TIMES!!!! And it took me over FORTY FIVE MINUTES. Even with the breaks, I still had to lay down with my heating pad on my back and abdomen for about 30 minutes before I could go on to my next task.

I continued on with my day the same way as above. I vacuumed and then had to rest and use the heating pad. Then I did some laundry and had to rest. After eating lunch the pain has escalated again to about a 7/10 so I had to quit what I was doing and lay down. Completing simple tasks is no longer simple. It has to be well thought out and planned. That is generally how it goes for most people with chronic pain/chronic conditions. I can no longer just complete a task without resting or taking several breaks. Things that used to be simple and easy are no longer so easy. Everything that is done has to be well thought out.

I miss my time out with friends and family. But a night out or even time at home with friends or family for dinner and a movie requires major planning. Over the years I have learned that if I want to spend a day out of the house no matter what I am doing I better prepare. I need to make sure I rest all day the day before, and maybe two days before. And I know that I will most likely be in bed and doing nothing for several days after. For what seems like a normal day out of the house shopping or an evening out to dinner and a movie to an able bodied person is much different to someone with chronic pain. For example, last week, my little sister played in her last competitive softball tournament. And I just simply wasn’t going to miss it. Sadly, I knew I was going to pay for it because I didn’t feel good going in and it was 95 that day. (People with lupus simply do not do well in the sun.) So I planned ahead and took it easy the day before, and stayed in bed till the last possible minute the morning of, got dressed, and got in the car for the 45 minute trip. I was already hurting (at about an 7/10) by the time we got out of the car, and at that point we still had about 15 minutes to go before the 75 minute game would start. I had taken my pain medication before I had left the house but it wasn’t doing much to relieve the pain. I made it through the game, a quick lunch after the game with the family and the 45 min drive home. After my shower, a COLD shower, I crashed. And I certainly paid for it the next couple of days. Everything you can imagine hurt, my back and hip from sitting, my head from the heat. And just about every joint you can name. I really was hardly able to get out of bed the next day because the pain was so severe. That being said I wouldn’t have changed it for the world. I got to see my sister play one last time. I would have done it 100 times over just to be there especially knowing how happy it made her that I was there to see her play.

If my pain is tolerable and I actually get out of the house like I talked about above when I attended my sisters game. Usually as soon as I get out of the house I am counting down the time until I can get back home to my bed and my heating pad. Generally I can’t focus on whatever I am doing because my pain is such a point of focus. I do enjoy getting out of the house but I can’t help but think about how much I am going to pay for leaving the house. So sometimes we have to pay for the good things in life. It shouldn’t be that way but it just is. We shouldn’t have to deal with all we do, but we do and we learn how to deal with the hand we were given.

Amy’s Story

I had my first experience being treated as a drug seeker this week, which I will tell you about in just a second. But I first want to give you a little backstory. Only a few months ago my family moved to a new state leaving behind the doctors who had treated me for many years. Knowing there has been so many issues with pain and pain medication, on my first visit I brought all of my medical records with me. In the state I moved from, the doctor treating the source of your pain would be the one that prescribed your pain meds.   I discovered that my new Rheumatologist does not write pain meds.  I take a rather mild medication; however, he preferred that my PCP write for anything related to pain.  I use a combination of physical therapies, yoga, tai chi, breathing exercises, rest, heat, massage, and tears to handle and tolerate pain.  Meds were a last resort for me.  In fact, this was a decision that was not taken lightly, and very seriously discussed with my previous doctor.  When I went to my new PCP to get the medication, I was promptly given a long lecture on how doctors are monitored and restricted, and how they are not allowed to write too many of these prescriptions.  They did not look at the scanned records that are in their system, they did not call my rheumatologist.  I was lectured.  I was informed that I had to go to a second doctor to get pain medication, because that practice encouraged doctor shopping.  Something the medical system here should know and discourage; however, this was their policy so I was being forced into this practice not by my choice but by their policy.  A prescription was finally sent to the pharmacy which I picked up the next day; only I discovered the prescription was for THREE DAYS of the medication.  I do not take the max prescribed, I do the best I can because there are no therapies left on the market for us to try.  We are at the end of the proverbial rope.  Asking for help once in awhile should not result in being treated like someone with a contagion that will cause deadly harm.  I feel like physicians are pushing patients into medical marijuana (legal in my state) and can see why patients feel forced to seek illegal options.  When you deal with chronic pain, you learn quickly what things will exacerbate it, what things you do that will make you pay a little bit of a higher price, and things you can do to help here or there.  I have Lupus, Rheumatoid Arthritis, Sjogren’s Syndrome, debilitating Migraines, Epilepsy, and Fibro.

If I am lucky, I wake up and think that my eyes might open properly the first time.  My dog is a service dog and has been trained to help gently wake me.  Part of this is because of pain, but also if I am jarred awake it is a promise of a day with a horrible migraine.  I begin taking stock of what is alive or asleep or wishing it were dead on my body.  One thing with RA is morning stiffness, so often you don’t allow you initial impression of the day define you.  I roll out of bed and hope I don’t actually fall.  The first 15 minutes of the day moving is generally agony; an 8/10 because your muscles and joints have no idea if they even want to move.  This does not include all of the other fun stuff like cognitive dysfunction (you can’t think clearly) or your eyes don’t actually focus (thank you Sjogren’s).  After 15 minutes, sometimes 30 minutes, you have an idea of where you are going to hurt the worst for the day and what you will be dealing with.  Normally, I know that my knees, hips, and lower back will always be a 5/10 and that is just what it is.  If I having a migraine, I automatically medicate for that, and if the rest of my joints are above of 6/10 I will take medication to help with that.  This is when two things hit me simultaneously.  My need for coffee or tea and also what will I be able to do today?  Is it a stuck in bed day?  Maybe I can do a couple things, but I will have to depend on my cane?  Oh, it is a good day.  I can walk around and get two or three things done and just rest in between and after.

I had one day recently when I got really ambitious.  I wanted to get sheets, blankets, and clothes washed and dried in the same day.  That morning my pain started at around a 5.5/10.  My energy was pretty decent, I had a plan of action in place and life was good.  You become a bit of a master planner with chronic pain and any chronic illness.  I have learned that I can have the best plan, and it will go straight down the toilet.  I started with the regular clothes.  Just the act of getting them moved from the washer to the dryer, using my laundry aid, escalated pain to an 8 and delayed me getting to my next load for an hour because my legs and back gave out and I was unable to tolerate the simplest actions required to put a load of laundry in.  Sadly, this was with pain medication on board.  My goal was three loads of laundry for the day.  To an able bodied person, that may seem like nothing, for me to complete that in one day would have made me feel like I had just climbed Mt. Kilimanjaro.  When you have a chronic illness that no longer is how life happens.

For me, time with friends is one of the most beautiful and precious things.  It also is the one thing you lose that people don’t understand about you.  When first diagnosed I thought that I could just power through, now I have learned the price I pay.  Last week I went to the movies with my sister and niece.  I wanted to see Mamma Mia 2, they did too quite frankly.  It was girls night.  I had to rest 2 days prior.  The night I went I almost collapsed going into the theatre, and I did collapse coming out.  I started the night fatigued and about a 5/10; before we left I had a slight moment where I wanted to sit down and sleep for a month but I was not missing.  By the time I got home I was about a 9/10.  I have been flaring, which in our world means additional pain, swollen and stiff joints, and fatigue since.   I would not trade that fun night though.  There is a price you pay for all of your time.  I know with this post, I am not asking for sympathy.  But before you make a judgement, pause and maybe try and step into another’s shoes for just a moment.

Even our families and closest friends don’t always understand. Chronic pain is hard for anyone to understand because it can’t be seen. When you look at us we don’t look any different from the next women. Unless you you see us limping, walking with a cane or rubbing a sore spot you wouldn’t know we were hurting. They try to understand, and at first they do really well. But even the closest of friends or family start to get frustrated after repeated cancellations. They think back to the time they sprained their ankle or tweaked their knee, and the pain was gone in a couple weeks and they don’t understand why “a little pain makes life so hard!”

What Amy and I shared above is simply a small glimpse into the life of someone who has chronic pain. Someone who has to carefully plan each and every task they do on a daily basis. No on will never be able to explain to what it feels like to feel like your body is no longer your own. Your head and heart want to do one thing but your body says NO. No one will ever be able to explain to you how hard it is when you have to turn down your best friend for the 9th time, simply because the pain is to unbearable. No one can ever explain what it feels like to be told by the people who you are closest to to “Just take some Tylenol, and a nap, and you will be fine!” No one will ever be able to tell you what it feels like EVERY SINGLE TIME you go to a doctors office and they see that you take pain medication, and you can see their thoughts about you change for the worse. No one will ever be able to tell you how it feels to have someone tell you to “Just exercise and lose some weight, and you will feel better!” All that being said, until you have lived and walked in our shoes please try to keep your judgments about us until you meet us, and really get to know us. Yes, my pain impacts almost all of my daily life, but it DOES NOT make me who I am.

With Love,

Amber & Amy

The Honest Truth About Our Periods

Lets just really honest today! Periods…… they are not the favorite time of ANY ladies month. But even less so for those who have endometriosis. Men will never be able to truly understand what its like to deal with a periods every 28 days or how often you might be “lucky” enough to get to deal with these awesome body function.

We don’t have to talk about the obvious, the bleeding. But its a major part of why we all love them, oh so much. Then we are lucky enough to also get to deal with irrational mood swings, cramps that are not easily explained to men or others who don’t have to deal with those, and the bloating. Then there is the insatiable hunger. And of course we couldn’t want veggies, and fruits and lots of protiens. NO most women want anything sweet, salty or fried!!!!! Which does NOTHING for the ache that comes along with eating crap food.  Okay, you may be thinking that I am going overboard. But no…… I think most women would agree that, that one week of the month we would rather not deal with is far from pleasant and is oftentimes just awful.

NO, I am not here to write an ENTIRE blog post on how bad a menstrual period is. Because chances are those of you, that read past that first paragraph are women. Or men in committed relationships with a women so they know the ins and outs as well. What I really want to talk about is what we can do to make that week of every month a little easier.  So I went to my friend Mr. Google to help me with information for this post. Below you will find my (and others) recommendations for how to make that wonderful week a little easier for everyone involved.

1. Exercise With Lighter Activities –

If you are anything like me when you read this the first thing you said was “ARE YOU CRAZY, HOW WILL EXERCISE HELP?” But that may be my common response to several things LOL. In all seriousness a lady can increase blood flow which will help cut down on the cramps. So if you decide to do this you need to go light. Do easy exercises like yoga, or stretching or walking, some encourage swimming but that sounds like a disaster to me!!!!

2. Hug A Heating Pad

This is and always has been my go to. For any abdominal or back pain I have during my period. I find a good heating pad and don’t let it out of my site for the whole week. The heat can actually sooth your muscles which in turn eases your cramping and overall discomfort

3. Its Important to Drink Plenty of Water and Stay Hydrated

I know some of you are thinking “No way, I am already holding on to three pounds of water weight, why would I choose to drink more water?”  I know, it sounds crazy but the more water you intake, the easier it will be to eliminate the extra water building up in your body. We should always try to drink more water, because it really is good for out bodies even when we think it sounds crazy. No matter if we are on our cycle or not we should all really try to drink 10-8ounce glasses of water a day.

4. Avoid Caffeine

Caffeine has truly become an issue for many people around the world. But for women its important to remember that caffeine actually makes you hold on to water weight, and definetley contributes to that achjy, crampy, bloated feeling we often feel during out period.

5. Eat The Good-For-You Food

Even though the only things you want are chocolate, ice cream and french fries (okay, maybe that is just me), we should all really try to eat more fresh fruit and green veggies. By eating enough of the good stuff it could potentially help to steer you away from the bad choices. You could try snacking on carrots with hummus, apples with peanut butter (which will give you the sweet and the crunch you make be looking for,) or blend up a smoothing with good fruits.

6. Try To Stay On Top Of Your Sleep

We all need 7-8 hours of good sleep all the time. That is especially important for teens who are on their periods, They really need eight to nine hours of sleep per night. Getting enough sleep will help you wake up feeling refreshed and rejuvenated.

7. Take Notes

Being prepared is your best defense when it comes to that time of the month.You should start keeping a record of your period each month. You can do this on paper or now with just about everyone having smart phones there are great apps that you can get that help you keep track of not only the dates of your cycle but also the symptoms, and how heavy they flow is. After a few months of doing this you will be able to see a pattern and can talk to your doctor if needed.

8. Use Period Protection That Lets You Stay Active

These days there are pads and tampons for every shape and size. Even special items made who are more active. And completely natural options. But what it comes down to is efficiency and comfort. It doesn’t matter what the women in your family has used for 3 generations, or even what your best friend uses. Don’t be afraid to jump out of the comfort box and do some research on products that are out there. You honestly just need something that makes you feel less self conscious and takes care of what it is supposed to.  And be prepared to be able to change said pad or tampon every 4-8 hours. This is especially important for the younger girls in our life who may not have been told the risks of Toxic Shock Syndrome.

Since we are really being open and honest lets talk about a couple of other things. One being at what point should you contact your doctor about your cycle.

The symptoms that you need to be talking to your doctor about quickly:

  • heavy bleeding
  • extended bleeding (more than 7 days)
  • bleeding after sex
  • spotting
  • excessive clotting during periods
  • abdominal pain
  • any odorous discharge
  • excess hair growth on face
  • unexplained weight gain

Likely Causes of an Irregular Period

Many issues can cause irregular periods, things like changes in the bodies production of estrogen and progesterone can alter the normal pattern of a ladies cycle.  This is why young girls going into puberty and women approaching menopause often experience irregular periods.

Other common causes of irregular periods include:

  • Having an IUD
  • Changing birth control pills or using certain medications
  • Too much exercise
  • Polycystic Ovarian Syndrome (PCOS)
  • Being Pregnant or Breastfeeding
  • Stress
  • Overactive Thyroid (Hyperthyroid) or underactive thyroid (hypothyroid)
  • Thickening of or polyps on the uterine lining
  • Uterine Fibroids
  • Endometriosis

The hormone estrogen thickens the uterine lining before ovulation, so when estrogen levels become unbalanced the uterine lining sheds irregularly. This may result in heavy bleeding.

The conditions Endometriosis can also cause extreme cramps, very heavy bleeding, pain with intercourse and pain in the rectal area.

If you have any of the above issues or just want to talk to your doctor make an appt to do so. Most of the issues that cause irregular periods can be treated in one way or another.

With Love,

Amber

Why Is Sleep So Important?!?

Sleep…. sleep…..sleep. It’s all my doctors seem to want to talk about these days. I can count on every doctor I see to ask me how I’m sleeping. When I tell them the truth I always get THAT LOOK! A look I’m sure anyone with a chronic illness/pain is used to seeing. Then they proceed to tell me why I need to sleep more. That being said I’ve always wondered how much of a difference sleep really makes. And why it is so much more important for us (the chronically ill and those with chronic pain) than other people. So I decided I would do some research and pass on what I found to you guys!!

The 2015 Sleep in America Poll found that 21% of Americans deal with chronic pain, along with 36% who suffered, in a period recent to the time of survey, from acute pain. That shows that only 43% of the population report being pain free. Pain joins with stress and poor health in general equals poor sleep, shorter duration of sleep and poor sleep quality! The people who suffer from either acute or chronic pain are more likely to have problems sleeping that will impact their daily lives. More than half of the people with chronic pain and were part of the poll say that sleep difficulties have or will interfere with their work. That. Number drops under 25% for those who have no pain. Those with pain also report that lack of sleep often Interferes with their mood, the activities they may take part in, relationships and overall enjoyment of life.

People with chronic pain also feel that they have less control of their sleep, the report that worry more about lack of sleep could affect their health. This group of people also say that they are more likely to have their sleep impacted by environmental factors that make it more difficult to get a good night sleep. These could be things like noise, light, temperature, mattress or even the person who they share the bedroom with. Just to give you an idea the survey indicates that sleep is a significant problem for those with chronic pain. The statistics don’t lie. It showed that almost one in four people with chronic pain (23%) said that they have been diagnosed with some kind of sleep disorder by a dr. That is compared to just six percent of those who don’t have any issues with pain.

These statistics above show what we all know. They show that those with chronic pain issues don’t sleep well. But why is it so important?!? Some doctors feel that the duration and quality of sleep should be considered a vital sign, because both are known to be strong indicators of qualify of life and overall Health. It is recommended that a person gets 7-9 hours of sleep a night. The importance of good sleep should never be underestimated. Sleep deprivation has been clearly linked to increased rates of obesity and increased body fat. Along with a compromise immune system, and even diabetes. Research shows that a full nights sleep (7-9 hours) is essential to help the body repair and rejuvenate. Lack of sleep has been linked to poor performance on the job and very slowed reflexes behind the wheel. A non-restorative sleep pattern can potentially cause diminished energy, depressed moods, fatigue and along with experiencing more pain. That being said new research is showing that getting a full night of sleep can not only help you be more alert and it can also reduce inflammation and pain. Basically the takeaway from this is that sleep deprivation and poor sleep along with chronic pain are part of a vicious cycle, that can be hard to break.

The good news they say, is that sleep deficits can be remedied easily and the effects of lack asleep can be reversed. There are specific ways to improve your sleep hygiene that can give you immediate rewards. The American Sleep Association there are some steps that one can take to make sure that you can get better sleep. These steps are done to help you wake up feeling refreshed and energized for your day!

The following are steps recommended by the American Sleep Association(ASA):

  1. Keep the room cool- In General when we sleep our body temperature drops. So it is recommended that you keep your bedroom around 65 degrees. That is so you can add blankets. The drop in body temp signals your body that is time to sleep!
  2. Go to bed earlier- Just like kiddos, adults can get over tired and won’t be able to fall asleep. Also for those who like to stay up late and sleep fewer hours research has shown that those who keep that as part of their routine oftentimes report more negative thoughts and more pain.
  3. Stay on Schedule- In order to help your body get used to sleep, try to go to bed and get up at the same time. By doing this your body will get used to this rhythm. This making sleep somewhat easier.
  4. No Naps- This is a very debated topic. That being said the ASA says that nap decrease the “sleep debt” that makes it harder to fall asleep at night. So by napping during the day you increase the odds that you will have trouble falling asleep and/or staying asleep!
  5. Turn off screens- Turning off all kinds of sleep a couple hours before bedtime for all ages allows the body and brain to settle down and shift into sleep mode.
  6. Make the bedroom only for sleep and intimacy- In today’s society the bedroom have become multifunctional. It is no longer just for sleep, it is used by some as their office, or a place to workout or a movie theater of sorts. By making your bedroom uni-functional it will make it easier to sleep there. It’s hard to relax and go to sleep when you can see your desk piled high with tasks that need to be completed. By making the bed and bedroom just for sleep one can hope that your brain will subconsciously associate being in the bed or bedroom with being asleep. They also say that one shouldn’t lay in bed and surf their phones, watch TV or even read. They suggest sitting in a chair in the bedroom to do those tasks and crawl into bed only when you are feeling sleepy.
  7. No caffeine or other stimulants after noon – in order to get better sleep it’s best to avoid any caffeinated beverages, cigarettes and alcohol after noon. By doing so it is hoped that your body & mind will be able to wind down and sleep when it’s time for bed.

Let me be real and honestly say I don’t think that this is something easily changed or reversed. As someone who has suffered with insomnia for many years and have made many of these changes through the years. And I just don’t see the great change in my sleep by doing so. That being said these tips may benefit one of you reading this greatly. So I feel like even if it hasn’t helped me I want to share this information with others in hope that it can help someone else. By doing this research I was able to see the dangers that can come from not sleeping. This the importance of getting a good nights sleep every night. So I am willing to make these changes once again and see if it is beneficial to me. I will try the tips listed above for a month or so and report back to you all as to whether or not they have improved my sleep!

Finally take a moment to look at the graphic below. It shows some Interesting information on this topic. Graphic is from the National Sleep Foundation.

With Love,

Amber

Resources

https://www.spine-health.com/wellness/sleep/chronic-pain-and-insomnia-breaking-cycle

Better Sleep Guide

https://www.sleepassociation.org/sleep-disorders-n/insomnia/amp/

How I Really Feel About…….. Pain

Pain….. is something I deal with daily. And I am guessing that many of you do as well! It has just become a part of our daily lives and something many of us don’t give a second thought to. And most of us would give anything to have one pain free day where nothing hurt at all without having to take a pill to get that way. That being said it has become a BATTLE for some to actually get the medicine that they need to treat said pain. Thanks to all those who are abusing pain medicine it makes those of us who actually battle chronic pain to also be viewed as an addict to some care providers. It is so sad that people who have chronic pain and live in pain everyday have to jump through such hoops just to get the medicine that we need to be able to function.

I usually try to stay away from the highly debated issues like this, but I read something that really struck a chord with me this weekend. A fellow Lupie posted that she got to the point where she could no longer handle her pain at home with all the alternative options, and ibuprofen she has at home. So she went to the ER, simply because she didn’t know what else to do. And of course because her primary complaint was pain, she was looked at by some of the care providers that she was simply drug seeking. And I know she is not alone in this I know this happens all the time. It has happened to me when I went in to the ER with a Hemiplegic migraine, there was no test to show that I was truly in pain so its easy to assume that I really just want pain medications. I even had one doctor tell me that I was just a hypochondriac and that there was no reason for me to be seeking treatment in HIS ER.

That’s the whole problem with autoimmune conditions and chronic pain syndrome, there is not always a blood test or imaging that will show that the patient is truly hurting. Most doctors don’t understand autoimmune conditions therefore they don’t understand why we are in pain. If they can’t see a lab result change or something on an MRI or CT Scan to explain the pain they just don’t get it.  And it frustrates me to no end that I can’t be honest about my pain with some of my doctors without them looking at me and thinking I just want the drugs. When in all reality I just want a day where I can wake up and function like a normal person. I don’t like how the pain medications make me feel but if that is what I have to do to function then so be it. I think many of you would agree with me when I say I just want a day without pain. I would give almost anything to have a day, a week, a whole seven days where I didn’t hurt somewhere and I could do all the things that I want to do without having to spend the next day(s) in bed.

The government at the local, state and federal levels are trying to do what they can to change how pain medications are prescribed and filled to decrease the level of abuse. In some states you are only allowed a seven day prescription no matter what the reason for needing pain medication is. In other places you have to give a urine sample every thirty days before you can get a new script to show that you are really taking the medicine and not selling it. Pharmacies are now being linked in many states throughout their local areas to try to prevent those abusing drugs from doctor hopping and having multiple scripts from multiple different doctors. While all of this is positive and will hopefully start to decrease the abuse of pain killers. It has actually made it harder for those of us who really need it to function. We are being made to jump through more hoops then ever before.

The real question I guess is how do we change the views of these care providers, especially ER providers. Where they see a large amount of drug seekers everyday. What can we do to prove to them that we aren’t wanting more and more medications, that we just want help getting through this flare up. Even with our conditions in our charts that say LUPUS, MIGRAINES, ENDOMETRIOSIS or whatever conditions you have that cause pain, they still often times wonder. I have thought about this a lot and have come to the conclusion that we will never change the way they look at us. We just have to have tough skin and prove to them that we don’t want an extra script or something new to take at home, we just needs something to break the cycle we are in. Maybe one day more doctors and care providers will start to understand the conditions that cause chronic pain. Until then we are stuck in this horrible rut and just have to prove our self to each new provider, and show them who we are and what we stand for.

With Love,

Amber

Let Me Tell You How I Really Feel!!!

Disclaimer: These are my opinions and it’s okay if yours don’t agree!

As I lay here feeling as tho I can feel every….single…. part of my body and it all hurts. I decided to look for some inspiration. Something to get me through this trial. I decided why not? None of my other tricks are working. Not even my Gold Standard Go-To’s. Like sitting in a hot bath, I think I’ve used all the hot water in the house! Probably good that no one will need any for several hours yet. I can’t sleep because even my hair hurts. I started looking for other ways to deal with the pain. Tried guided meditation which has helped some in the past. NOTHING! I started reading other blogs, reading inspirations pages, and I found some that fit. Then I decided maybe my pain could help someone else so I’ll Blog. And it’ll be a good way to pass a few minutes where I can focus on something other than the pain. And I’ll

Place the inspirational things I found helpful throughout the post!

Chronic pain is all psychosomatic (all in your head) people have been told! First, I would like to know how many (if any) o have been told that?!?! Secondly , I would like to know what gives those “Doctors” the right to tell you the pain you are feeling isn’t real? And lastly, I would like to know if they have ever spent a week, a day or even a few hours totally overcome by PHYSICAL pain. No, I’m not talking about spraining an ankle, or hitting your funny bone. While yes, those things hurt, that pain isn’t going to last. You can see an end in sight! With chronic pain you look for that light at the end of the tunnel and see nothing. Nothing but BLACK. There is no light. Chronic pain is just that, pain that’s chronic. Pain that you will live with at some level EVERYDAY FOR THE REST OF YOUR LIFE!!

If I had a nickel for the amount of times I’ve heard “Well, I just don’t know how you do it! how you put up with all that pain!” I’d be a rich lady. My answer is always and forever will be, “It’s my only option. I don’t have another. I can’t just say you know today I’m not gonna deal and wish the pain away.” There are days I wish I could, like right now. In this moment I wish I could just say “I’m done with you for now pain and it would go away!” But I can’t. And neither can all the other hundreds of thousands who deal with similar things. So for all of you who also deal day in and day out with chronic pain I applaud you! You are some of the most courageous people I know! And it’s because of you that I know I can keep pushing through.

“Courage is not having the strength to go on; it is going on when you don’t have the strength.” – Theodore Roosevelt (1858-1919), 26th President

The sad part to me is that most chronic pain sufferers & Lupus Patients suffers in silence.

They feel that it is a better option to suffer alone than to open up to a close friend or family member about what is going on. It’s sad that we have to feel that way. But I know why it happens. Let me give you an example that maybe you can relate to. Have you ever been home from work on a sick day? Not welling enough to work but well enough that you can text or play on Social

Media? If you have been in this situation, did you receive any backhanded, dirty text, or comments about how much better you MUST be since you are up and on Social Media?!? Probably not. But the second you have a Chronic Illness or Chronic Pain and stay home and someone notices you on the Internet the rumors start rumbling about how you must not be THAT sick if you can be on Facebook. When it’s quite the opposite. You still feel like a giant pile of horse manure, but Facebook is giving you a much needed distraction from what you are dealing with. And if you really wanna know, It’s my business how I spend my time!! Not yours!!

Living with a Chronic Illness or Chronic pain sucks. That’s just all there is to it. You usually end up losing out on opportunities in every aspect of your life, simply bc the pain is too much. No one should ever have to deal with pain to the point that they can barely physically move bc their entire body hurts. In this day in age there should be more medicines available to treat these horrible life altering disorders more directly. Those of you non-spoonies may be thinking, so go to the pain Doctor and get on some meds and move the heck on. Well, sadly it’s not that easy. I am in the third largest city in my state and no pain dr will touch me bc I have Lupus and Fibromyalgia. They won’t even see me in their office. So I, like many others across this fine country, are stuck without or get medication from a family doctor who is not trained in treating chronic pain.

In many cases we have those who are abusing the system and pain medications who have ruined the system the rest of us. Those of us who truly need treatment and medications should NOT be punished based on the poor decisions of another person. Okay I’ll get off that soapbox.

But seriously if you’ve never lived a period in your life where pain took over don’t be so quick to judge those who have. We who suffer would gladly give it all away to have a normal life again. We didn’t ask for this, want this, and the largest majority of Lupus Patients did nothing to cause the situation that they are in. So please before you judge do a little investigating on your own. Don’t assume that just because I look like a normal 32 yo female that you can yell or give me dirty looks for using a handicap tag. I have it for reasons that you may never know.

All we can do is keep fighting the good fight!! Keep doing all we can to advocate that we get good care and the meds we deserve. We deserve the chance to live a normal (or as close to it as possible) life just like everyone else does!

It does not matter how slowly you go so long as you do not stop.”

– Confucius (551-479 BC),

Philosopher

With Love,

Amber