The idea for this post comes from the article, “13 Mistakes Fibromyalgia Patients Make” by Amanda Gardner for Health.com. Amanda’s article reminded me, again, that chronic anythings are whole life challenges. Somehow I still need that reminder sometimes, even though chronic pain has touched almost every aspect of my life. So here is my version, adapted to chronic pain, and illness with pain, but not specific to one particularly chronic condition. I think we have more in common than not. 😀
1. Not tracking the efficacy of treatments, activities, and coping tools.
I personally have found that tracking pain without tracking related factors (emotional state, stresses, coping tools and medicines, etc.) is not particularly valuable. I need to know exactly what medicines and exercises make me feel better. I also need to keep track of my flare-up triggers because sometimes they surprise me :(.
Example: Fifteen minutes ago I finished my workout. The seated rows zinged my nerves (ouch!) but my musculoskeletal aches decreased. Free weight exercises that demand balance and focus are a good pain distraction for me. Yippy.
2. Expecting too much from just one management tool
I do this. I put all my eggs in one basket. Usually its because I don’t want to exercise or I don’t want to ask for help. But there is no medicine in the world that is going to exercise for me, cook my dinner, and work on my marriage.
Example: Develop an action plan for flare-ups and share this plan with the hubs so he will know what to expect.
3. Refusing to try new management tools and/or treatments*
We are all individuals and we just never know what’s going to work until we try it…a whole bunch of times. Like guided imagery. I listened to guided imagery many times, smiled, and nodded politely before I ever achieved any real benefit from it. And you know what? It wouldn’t work for me today. But tomorrow I might be in the right mood and it will be quite beneficial.
Example: I haven’t been willing to put effort into practicing meditation. I should really give it another try.
*There is a caveat with this one. Deciding on new treatments, exercises, etc., is done with the advice of your physician, obviously. If Doc says the hot pink anti-pain goo you bought off the internet is a total scam, well, then don’t use it!
4. Not exploring alternative treatments, wallet permitting
What is alternative these days? I mean, fitness and getting into a good mindset are more common sense life stuff to me than they are “alternative” treatments. So lets talk about acupuncture because I think most people would agree that it is not a mainstream tool for pain (in the US). Studies have shown that patients can receive pain relief from both real and sham acupuncture because of the placebo effect. So maybe its worth a shot?
If only I could find pain-relieving chocolate chip cookies…hm
5. Staying with the wrong doctor.
Ultimately, we are the ones responsible for making sure that we are getting the best care we can find and afford. Its tough out there but there are lovely docs as well as horrid ones. A neurologist once told me, “Don’t ever let another doctor tell you that this isn’t real. Your pain is real and you deserve real help.”
6. Denying that you have a health problem that requires active, ongoing management.
This is a bit complicated. I am trying to say that we have to accept the reality of our situations even if its a tough thing to do. It can be really difficult to accept a diagnosis, even after meeting with several physicians. Denial can also mean refusing to cope with an illness even though its necessary, like making diet changes as a diabetic.
Example: In my case it was difficult because I didn’t have a diagnosis for a long time. Some docs told me there was nothing wrong with me at all, so I jumped on the denial train. I loved the idea that there was really nothing wrong but in my heart I knew they were wrong. It was probably the biggest mistake I ever made.
7. Not asking for help.
So you have pain. You are still you. You are a good friend. You have been a shoulder to cry on. When other people needed help, you were there. You deserve help. However it can be challenging to communicate with loved ones.
Example: Clearly state your needs. Don’t expect your family or friends (or anyone else) to automatically understand what you are going through. How to Understand Someone with Chronic Pain is a web page for friends and relatives to help them see your point of view. The Spoon Theory written by Christine Miserandino is a great story about how one blogger used a fistful of spoons to explain her daily life.
8. Not reaching out for support
Some of us cannot rely on the people in our lives for support. Others have networks of support to encourage them and keep them going. The good news is that there are good options out there.
Support groups for specific conditions
Chronic Disease Self-Management Program
Blogs/social media & twitter
Friends and family
9. Feeling guilty
I fall into this trap only temporarily, but also fairly often. I feel guilty when I can’t take care of everything all the time for the people in my life. I also feel guilty when I think about the years when I didn’t know how to manage my pain. But the guilty feelings aren’t helping me.
Example: I focus on the positives rather than the negatives. There is no point in beating myself up about a condition that I did not choose for myself. It just happened. I also remember that chronic pain is an enormous challenge. The fact that I have kept going all these years is one heck of an achievement all by itself.
Another idea is to write an affirmation to look at every day or whenever these feelings arise.
10. Letting it take over your life
I think getting overwhelmed sometimes is a natural part of having a chronic illness. Its perfectly reasonable to experience a lot of difficult emotions, sadness, and depression. But after that the day must go on.
Example: Enjoyable activities, learning something new, staying socially active, volunteer work, a meaningful career, supporting others with chronic illnesses
Nutrition, Sleep, Exercise
11. Not having fun
Its easy to let this happen. You might say, “I was in too much pain to finish this project today. I am not going to go out with my friends tonight because I need to get it finished.” Pain management is definitely a balancing act. Particularly for ambitious, driven people the temptation is always to reach for perfection.
Example: Relaxation and laughter will improve overall self-management. When self-management improves there is much, much more that we can do in life. No matter where we start I believe we can still get some little pieces of our lives back. And those pieces are life.
12. Not moving because it hurts so darn much
Clearly you have to ask your Doc about any new fitness program. That said, move whatever you can. Physical fitness was the first entirely successful major step I took to manage my pain. I am not sure if there is really a more perfect medicine. The benefits of exercise include (among others):
Potential relief from pain
The physical and psychological effects of that relief
Knowledge that it is a tool that can be depended upon when in pain
Cumulative improved fitness of the body
Distraction from pain through the need to focus on movement, and
This post was inspired by “13 Mistakes Fibromyalgia Patients Make” by Amanda Gardner for Health.com