How To Help Yourself and Keep Chronic Pain From Ruining Your Life

Diagnosis

 

You’ve been diagnosed with chronic pain. Fibromyalgia, Lupus, Sjogrens, Mixed Connective Tissue Disease – the list of conditions that cause widespread pain is miles long. Before your diagnosis, you probably noticed that you don’t sleep well, or have bruises you can’t explain.  Now that you’ve made it through the task of actually getting a diagnosis, some things you hoped would get better won’t. Perhaps your spouse’s playful smack on the butt will hurt for twenty minutes, or every time you drive somewhere, you get back spasms. You’re most likely tired. all. the. time.

No matter how  you got to where you are now, looking for insight on your new normal, welcome. I’ll give you some background on my diagnosis and treatment, and then provide a roadmap to this labyrinth that is treating chronic pain.

A little about me

First, a little bit of my history. I was diagnosed with fibromyalgia is 2010. My chiropractor had speculated for years that I had it, but I would always shut her down with “NO I don’t have that”, even though when she adjusted my lower back, it felt like hammers hitting my bones. I might as well have stuck my fingers in my ears and yelled “LALALALA NOT LISTENING” like a five year old.

When I finally went in to ask about it, my primary doctor poked around on me, asked me some questions, and gave me a prescription for Darvocet. When that was removed from the market, we progressed to Vicodin. Then my symptoms got worse. Fast forward to 2012 when my doctor disappeared suddenly – carpets rolled up, office closed – and I was left to find a new doctor.

The new doctors took me off of Vicodin and prescribed Lyrica. We probably went through twenty different drugs, round after round of doctor-hunting, and finally settled on the team I have now. I am in a somewhat good place with my pain right now, and I’ll tell you what that means and what it doesn’t mean. I hope very much that my experience and mistakes will help you.

Diagnosis

You do not have to accept a diagnosis. Always get a second opinion, and not from another primary care doctor. If your diagnosis is anywhere in the arthritis spectrum, go to a rheumatologist. The doctor should do a full work up including blood work and a physical exam. I know this sounds obvious, but the first doctor I went to didn’t order any blood, nor did he do a physical exam.

Dealing with doctors

This is a tough one, because most people will accept what their doctor says at face value without asking any questions. The number one rule to always keep in your mind is that you are the boss. It’s your body. You have to live in it. You’re the one taking the drugs. Here are some tips for dealing with doctors:

Take a list. Keep a log of your symptoms every day, and take a list when you go see your doctor. I give mine to him when we’re done, and he puts it in my file. It’s easy to forget your symptoms when you’re in the exam room, so this is essential to receiving good care.

Take notes. I suggest keeping a notebook specifically for your appointments and noting what happens during each. You will receive better care if your doctor knows that you are keeping track. Me and my doctor talk about symptoms first, then medications.

Be your own advocate. If the doc prescribes something that you have reservations about, or you’ve tried before, tell them. No one is going to advocate for you, but you.

Ask them if they treat other fibromyalgia patients. Their answer may surprise you.

Ask for referrals. “Is there anyone else you think may be able to help me?” Report back on how any referral appointments went.

Keep a list of questions, and go down the list at each appointment.

Don’t keep going to a doctor who isn’t willing to listen to you. Don’t keep going to a doctor who won’t refer you to others who may help. Don’t keep going to a doctor who gives you opioids with no other treatment options. Doctor shop. People will comparison shop for pants, but not for a good doctor who will work with them.

Mental Health

I once told a doctor “I don’t want to feel better about my pain, I just want it to go away.” While this is absolutely the truth, that’s not how it works. Treating chronic pain is about finding ways to ease the symptoms, not get rid of them. The number one thing you can do to help yourself is to find ways to improve your mood. Suggestions include:

Hobbies. Do something you love every day. Even if it’s just taking a 20 minute bath with a book, treating yourself a little bit each day is essential.

Therapy. Talk therapy and CBT (cognitive behavioral therapy) are both effective ways to help treat pain and depression.

Support. Since chronic pain and depression are close buddies, I cannot stress enough the importance of having friends and family who 1. believe you and 2. are willing to help. Be wary, though, of support groups where everyone complains but no one really talks about positive ways to assist each other. To be clear, saying what your symptoms are and whining are very different.

Say “no.” You can’t do everything. You have to ration your energy, so find your limits on the  amount and type of activity or socializing you are able to do.  Sometimes you have to say no to people, and they’ll have to get over it. Do what you can, pace yourself, and let go of the rest.

Laughing. Laughter is so important! My husband is hilarious, and we laugh every day. This is not only fun, but releases endorphins which help with pain relief. Be silly as often as possible.

Movement

The last thing you want to do when you are hurting is move around, but it is a very important step to feeling better. My husband and I try to walk every day, and some days when I’m lying down and my legs are throbbing to beat the band, I’d rather take a bullet than get up and walk, but I’m always glad I did.

Stretching. There are lots of online stretching videos and resources. Find a good one and stretch every day. When I first started, it took about three months of doing it every night for me to be able to touch my toes. This also releases endorphins and helps relieve pain because your muscles won’t be so tense all of the time.

Gentle movement. Yoga, tai chi, swimming, and biking are all excellent, gentle ways to relieve chronic pain. Find a gentle exercise program and stick with it. Try to learn how to recognize when you should take it easy and when to push yourself.

Sleep

Sleep can be really difficult when you have pain. Make sure your doctor knows the difficulties you are having with sleep. I didn’t realize how bad mine was until I got an exercise tracker that also tracks sleep. It showed that I was awake about 10 times per night, and I was only sleeping about two to three hours per night. Yikes!  You can also video yourself sleeping to see what is going on. Keep working with your doctor, once you get your sleep under control, it will help ease some of your symptoms.

Research

Do your own research. Internet, library, support forums, youtube, there are endless chronic pain resources. Don’t overwhelm yourself, but read what is helping others. Try everything you can that sounds feasible and not like quackery. Of course, beware of anyone saying that for only $500, they can cure you forever, but don’t be afraid to try new things after you’ve done your research.

Last, I can tell you the thing that helped me the most is realizing that my condition is a physical set of symptoms. I used to think that my issues – Fibro, Sjogrens, and Depression – had joined forces and were a sentient being working together to kill me. Some days it certainly feels that way. It isn’t, though. It’s a series of symptoms, and they can be managed.

If you’re still reading this, you’re probably thinking “Holy cow that’s a lot of stuff to do!!”, and it is. But, each step you take toward helping yourself makes a little bit of difference. All of the little steps add up. And sometimes it’s the taking of the step that’s most important for your well-being.

Finding a good place

Being in a good place with your pain doesn’t mean being pain free. For me, it means that I’ve accepted that it’s there. It’s not going away. I have, however, found a treatment that helps quite a bit. Even when I have bad days, there is some good in them. Being in a good place with your pain means knowing that life is good, even when pain is present.

 

 

-Guest editor Liz Bolyard-Mick

Changing focus – How helping others can ease depression

Changing focus – How helping others can ease depression

As people who suffer from pain and depression, we know exactly what doesn’t help us feel better. It doesn’t help for people to throw platitudes at us. It doesn’t help for people to say “call if you need me!”, because we’re never going to call. It definitely doesn’t help when people tell us that if we take our meds, everything will be fine and happy. We know what doesn’t work, but especially in the throes of a depressive episode, or a flare of pain, we certainly don’t know what does work.

What really works?

For the last nine years, I’ve suffered from crippling depression. For the last six, pain has been mixed with it. Muscle aches, inflammation, stabbing pain, you name it, I’ve probably felt it. When my pain flares, my depression coalesces into a numbing, terrifying mix of feelings that culminate in predictable suicidal thoughts. During those times, I’m fully inside of myself, living inside the pain, at the bottom of a well, and the walls are made of some slippery stuff. I feel as if I’m never going to climb my way out.

For all of the articles I’ve read, people I’ve talked to, and praying I’ve done to help myself out of that well, the activity that has helped the most has been, to me, the most unlikely. When I’m hurting and in need, I always thought that of course I should focus on my own well-being and how to heal myself. Me, me, me.

Look around

Because I never bothered to look around, literally or figuratively, I didn’t see the other people in the well with me. It always feels like you’re alone in there (ask any depression sufferer). I didn’t realize that they were there next to me, also were looking up, desperate to find a way out and seeing no hand holds. There was sunshine at the top, but inside, only darkness.

When I felt that I had tried everything I could to help myself feel better (and boy did I try hundreds of things), I finally realized that the help I needed wasn’t going to be had by thinking about me and my problems.

Start small

It started small. I began to smile at people in the grocery store. I’d pick and choose people who looked sad. It made me feel wonderful to see their faces light up. I expanded it a little to smiling at everyone in the grocery store. Then I added little compliments “You have a great smile!” or “You are rockin’ those shoes!” Next, I added little actions like helping people carry things, or putting away their cart. Again, the smiles that followed me were amazing. When I’d peek back at them, I’d see a little lift in their step. I could actually see the lightness in their hearts.

For the first time, I began to feel connected to other people. As an introvert, I usually feel a disconnect from the world, as if I’m in it, but not part of it. Just by doing these tiny acts of service, I started feeling like I mattered. Depression is awesome at convincing you that no one cares if you live or die. You are rock-solid-sure that no one wants to receive your phone call or visit with you. That just isn’t true, though.

You have value

Within your community – your work, church, hobbies, meetings, family, and friends, you have a role. You fulfill a need. Anyone who serves people will tell you that they gain fulfillment from their service more than anything else that they do.

For me, because I have pain, my contributions are small. Smiles, little bits of help. I’ve also begun reaching out daily to a friend or family member by sending them notes or saying that I’m thinking about them. Figure out how you can help, even if it’s in tiny ways. Those little things ripple out to big things. You make a difference to people. You matter.

If you have a talent such as sewing, sew a little blanket and send it anonymously to a friend. If you can bake, bake a pie and show up on someone’s door step. If your gift is time, spend it with people in an elderly care home. If you can do nothing else, call someone and just listen with your whole heart. Every single person has gifts they can use to reach out. If you think on it a little, I’m sure you will remember yours.

When you are at the bottom of the well, take the hand of the person next to you and help them up. They’ll help the next person, and they’ll help the next. We can all help each other up, and out. By helping each other, we heal ourselves.

Love and happiness to you!

What is influencing you?

What is influencing you?

DeDe Parker

July 31 2015

When was the last time  you thought about how many different influences are affecting you every day? How often have you changed your mind after reading a social media post or news article?

Changing your views can be an effect of a positive influence on your personal growth. If you find yourself mindlessly agreeing with an idea before checking the facts or examining your feelings, that could be the effect of a negative influence in your life.

Before the Internet’s presence in our lives, our individual outside influences were far more limited. In the beginning, our parents and families were our primary influences. As we grew, our teachers and friends, the books we read and the music we listened to were all added sources of influence. Even with the addition of art and media, the number of influences in our lives was a countable number. Out of the mold formed by these influences came a rational human adult.

Now, from a young age, we have access to the entirety of human knowledge. As soon as we are able to comprehend, we can pick up any Internet ready device, and learn almost anything that we want to know.

Everyone knows that these tools are extremely powerful. Those of us who made it through school without the Internet understand the miracle of being able to pick up your phone and look up any information, listen to music from many cultures, and talk to people all across the world.

With this ability comes unfiltered information from millions of websites, bloggers, and social media members. As we read articles, scroll through our Facebook and Twitter feeds, and watch videos, we are always being influenced by the opinions of these content generators. Sometimes we are conscious of these influences because we actively agree or disagree with the content.  It’s difficult to gauge just how much we are being unconsciously influenced by the information load we experience in even a single day.

How do these influences affect us?

Our parents worked to instill their values in us; hopefully values like honesty,diligence, and compassion. Our teachers can give us a love of learning. Bloggers can open our minds to different issues and present different sides of familiar topics.

I’ve recently had the experience of a positive influence which helped me change my point of view. Recently, there has been an explosion of conversation surrounding race in the U.S. I am white and was raised in a very small midwestern American town. I’ve always believed that everyone was equal, and I’ve always had an innate sense of right and wrong, but I was raised with some incorrect opinions about people of color.

I treated everyone with respect, and I didn’t judge people based on their color. I believed my actions were not the actions of a racist. Through the influence of some friends, I’ve recently read some articles about different types of racism – things I had never considered. I learned that some phrases I’d always thought were ok, are considered racist speech.

My first gut reaction was to say “No, they don’t know me, I’m one of the good ones!”  The more I thought about it, the more I realized that I don’t live that type of aggression. I can’t tell people of color that they are wrong about something they live every single day. I examined my own thoughts and behavior and realized that in order to live up to my own picture of human equality, I had to change my viewpoint.

How to intelligently change your point of view.

Before I did so, I took the time to learn about the subject and look inside myself to see if what I learned sounded right to my own intuition. When it comes to making decisions regarding different influences in our lives, these steps ensure we are making sound decisions.

We have all experienced this scenario: a Facebook friend reads a headline, gets upset about what they see, and immediately re-posts what they read with comments expressing their outrage. Then it happens again and again with other friends. Someone may take the time to comment “I read on (reputable news source) that this was a hoax”, or “This happened in 2012, and the company has since corrected their mistake and apologized.” In most cases I’ve seen, these comments are not appreciated. Evidently what’s important is spreading the outrage, not the facts.

When learning about something new, take a moment to check sources with opposing views. Then, listen to what your gut is telling you. Our initial emotional reaction may not be the correct one. Next, examine your beliefs and values, and the facts, to see if what you are learning rings true.

Lastly, do the hardest thing. Consider that you may be wrong. It is absolutely O.K. to be wrong. Everyone is wrong sometimes. As Maya Angelou said “I did then what I knew how to do. Now that I know better, I do better.” Believe me, your life will be so much better when you can just say “I was wrong” when it happens.

Using this advice won’t ensure you make the correct decision 100% of the time. Even if it leads you to a different decision, the time you spend learning and practicing self-examination is never wasted time.

Finally, consider your influence on others. People who trust you are going to take what you say at face value. Taking these steps is a good way to be confident you are passing on not only well-informed opinions but the truth.

DeDe Parker

Guest editor Liz Bolyard-Mick