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

Cultivating perseverance

Perseverance

[pur-suh-veer-uh ns] 

noun

-steady persistence in a course of action, a purpose, a state, etc., especially in spite of difficulties, obstacles, or discouragement.-

Whatever word you use to describe it, the ability to continue despite adversity is a powerful skill to have. It can help you succeed at work, lose weight, or earn a degree. It seems like some people are born with this ability; but if you are like me, you need to cultivate it.

Let’s say you’re trying to lose weight. For a few days – a few weeks, even – you are doing all the right things. Eating more vegetables, walking or going to the gym, drinking your water. Then it happens; one day, you just don’t feel like doing it. You sleep in instead of working out in the morning. Then for lunch, they bring in pizza at work. In the evening, you just don’t feel well. You skip your evening walk and watch television. The next morning, you feel tired and run down (probably because of yesterday!), and do the same things. You find it’s easy to fall back into your old habits. Just that simple, your weight loss plan which had been going so well is out the window.

Enemies of perseverance 

1. Habit

Once you get in the habit of doing something, the momentum of that habit is difficult to break. If your habit is work, fast food for lunch, home, frozen dinner, television, then sleep, you’re going to want to continue that, just out of sheer momentum. Whether or not you are aware of needing to develop better habits, you are used to your current routine.

2. Rationalization

In my mind, rationalization is the worst enemy of perseverance. Some of my “favorites” are a. I worked out yesterday, I can skip today. b. I have too many shows recorded to make dinner today, I need to catch up (I’ve actually used that one) c. My feet hurt d. I need to rest e. I had a hard day at work, I need to treat myself. f. I already blew my diet for the day, forget it. g. I haven’t lost enough weight to make this worth it, I give up.

The difficult thing about rationalization is that some days, the things you tell yourself to avoid developing habits are perfectly valid. Sometimes you should rest. Sometimes you should skip today if you worked out yesterday. It’s like trying to break food addiction; it’s not like you can just quit eating. The trick is to listen to yourself objectively, like you would listen to someone else. If you were accountable for someone else, would you let them get away with what you are saying? If you walked a mile yesterday and your only difficulty today is being a little sore, you should absolutely walk again.

3. Being too hard on yourself

Negative self-talk is a bad habit that is so ingrained in us that it is automatic. My friend Scott said “If you get shot with an arrow, don’t shoot yourself with another arrow.” Meaning that if you make a mistake, or something bad happens, don’t make it worse by beating yourself up about it. Negative self-talk serves absolutely no purpose. It doesn’t help you do better next time, it doesn’t fix the mistake, and it doesn’t help you feel better about yourself. You (hopefully) wouldn’t walk around all day talking to strangers the angry way you talk to yourself, so don’t do it to yourself.

Rather than saying “I didn’t write my paper today! I’m a terrible student, I’m not smart enough to do this. I’m sure everyone in my class is further along than I am”, try “I didn’t write my paper today. I did spend time with my daughter, though, and we both needed that. I’ll take an extra hour tomorrow night and get a good start on it.” This type of talk helps you complete tasks and feel good about yourself. The more you practice positive self-talk, the better your self-esteem.

Allies to perseverance 

1. Forget about being perfect.

One of my favorite quotes is by John Steinbeck “Now that you don’t have to be perfect, you can be good.” The idea that I had to do everything perfectly stopped me from setting and completing goals for a long, long time. In thinking that I had to be perfect I’d be paralyzed with indecision, doing nothing. Remember that millions of people have earned a degree, have lost weight, have climbed mountains, earned  a spot on an Olympic team. If they can do it, you can absolutely do it.

2. Set little goals.

Set tiny goals, but set goals. Whether it’s walking to the mailbox, or swimming 2 laps, you have to begin somewhere. Once you can finish your first goal, make bigger ones. Take small steps.  A good friend of mine, Gary, went from 435lbs to 218lbs by taking small steps at a time. When he started, it was all he could do to walk to the end of the block. Once he could do that ok, he walked further down the street, etc.

3. Don’t compare yourself to anyone.  

Comparison is not only emotionally damaging, it undermines your progress. I have pain issues, I’m working out for the first time in my life, really, and I also have CFS (chronic fatigue syndrome), so I can’t compare my activity and results with someone 20 years younger than me who is in good physical condition. All that does is make me feel bad about myself. Only compare yourself with your earlier self: “This time last month I could only do one sit-up, but now I can do five. Go me!”

4. Be gentle with yourself.

In physicality, go easy. Start with small weights, short distances, and gentle movements. You aren’t going to make a habit of anything physical if you are literally beating yourself up every day.

Emotionally, make a habit of positive self-talk. Do the best you can, then re-iterate that to yourself when it gets tough. “I only wrote ten pages today, but they are excellent pages. I did the best I could.”

Mentally, focus on one thing at a time. On http://www.rottenecards.com , there’s a card written by user Kathy Risser which says “Men, if you want to know what a woman’s mind feels like, imagine a browser with 2,965 tabs open. All. The. time” As a woman who suffers from Adult Attention Deficit Disorder, I can confirm that this is pretty much what it is like.

You can close some of the browser tabs in your brain by practicing mindfulness. “Mindful” is a pretty popular buzzword, but simply put, mindfulness is doing one thing at a time. Right now, I am writing this post. My phone is put away. My morning chores are done. I’ve made my phone calls for the day. I have all of my resources out, and I’m doing nothing but this.

Some tips to practice being mindful are making lists (if it’s written down, I don’t have to worry about putting a place-holder tab in my mind, and can come back to it later), using an app for your to-do’s, and keeping a clean desk. If items are put in their correct place, they aren’t in view and therefore are less of a distraction.

Here’s a Wikihow on How to practice mindfulness

Ultimately, ask yourself this “Is the feeling I get from quitting, from beating myself up, from doing ten things at once better than the feelings I get from finishing what I started, being gentle with myself, and being mindful?”

The answer is always no.