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
Steady As We Grow 