Does the Pain EVER go Away?
For someone who is newly diagnosed with lupus, one of the first things he or she will anxiously ask is… “Will my pain ever go away?” Though I am not a doctor, I can tell you with absolute certainty the probability of you never feeling pain again is the same probability of me never eating chocolate again – slim to none. And, might I add, ANY doctor that tells you they can take your pain away for the rest of your life – is selling something. Please, don’t buy it. Because just like with Jack and the Beanstalk, those beans they are selling aren’t magic – they are just some plain, old, unromantic beans. So don’t sell the cow to buy them.
With my work at Kaleidoscope Fighting Lupus, people inquire about pain relief probably more than any other symptom that lupus presents. People write us regularly saying, “I am in so much pain, is this how my life will be forever?” And my response is simple, “Your pain may never go away, but it will get better.” You may be wondering, “You just said my pain may NEVER go away, but it WILL get better? Talk about a contradiction!”
Let me explain – when you are first diagnosed with lupus or a lupus overlap disease, everything is new, overwhelming, and often all-consuming. You are feeling intense levels of pain, fatigue and malaise. You are bombarded with doctor visits, lab tests, test results, more doctor visits, treatment plans, medication trial and error, etc. You wake up in the morning (if you sleep at all) and your pain smacks you right in the moon face. Your pain, in the beginning of your lupus journey, is at the forefront of your mind 24/7 because your body hasn’t adjusted to this transition. Once your body understands what this disease looks like and feels like to you, it learns to expect a certain level of discomfort. And after time, the pain becomes familiar, you adapt, and you are able to create a new normal. So, what used to be unbearable, will not overwhelm you because your body has become psychologically and physiologically equipped to deal with the pain. Crazy, but true.
In this blog, I will attempt to explain this process and provide you with tips on how to help you adapt to your lupus pain. Because, let’s be real. You are going to have to put your courage to the sticking place and do this. So let’s do this together.
PROCESSING THE PAIN
First, we have to acknowledge that we are but mere mortals and our physical bodies are not going to live forever. Our bodies get injured…and they hurt, they breakdown…and they hurt, they age…and they hurt…some more. Living in denial about this fact of life, blinds us from accepting our current status. Second, we have to acknowledge that there are no guarantees in life. As Forest Gump brilliantly stated, “Life is like a box of chocolates, you never know what you are going to get.” Life is full of uncertainties. And the last time I checked, there are only two absolute guarantees in life: death and taxes.
When we process our feelings about our illness and pain, we eventually realize that more often than not, we have no control over what happens to us. The only thing we can control is how we choose to respond to our illness and our pain. Learning to ride the wake of the pain ship instead of swimming against it, will bring a state of peace and acceptance that not only will help you emotionally, but physically too.
- Acknowledge The 5 Steps
Finding out that you have an incurable illness like lupus, is certainly a loss.
These feelings of loss are valid and must be dealt with before you can move through to stage 5, which is acceptance. Everyone moves through these steps at different paces.
Here are the five stages:
- Be Good to Yourself!
- Surround yourself with supportive people. If you have great family and friends around you, this can be an important network to anyone with a chronic illness. If your family or friends are far away or they ‘just don’t understand,” then try to find online or local support groups for other lupus or chronic illness sufferers, like the ones here at Kaleidoscope Fighting Lupus!
- Try to maintain a healthy lifestyle– In spite of the lupus, it is important to continue to be good to yourself, eat right, get enough rest, and exercise regularly. It will help your pain in more ways than one.
- Just take one day at a time – why worry about tomorrow when all you can control is what you accomplish today? It may help calm the overwhelming feeling of worry about all you need to do and just help you get through this day.
- Even though you have days that you will not feel up to moving around, try to stay active. Be engaged in hobbies, clubs, groups, yoga or tai chi or any other mind-body exercises. This kind of engagement can really lift your spirits and make you feel empowered over your illness.
- Keep a ‘go to’ list of things that make you feel better, like a funny movie, music you enjoy, a special walk that makes you happy, hanging out with friends. Keep that list handy for those tougher days. The mind/body connection is a very important factor in your well-being.
- Stay informed about lupus – the more you know about your medical options, the more questions you ask of your physician and other medical providers, the more empowered you will feel!
- Watch that negative self-talk. Replace it with positive self-talk. We are all guilty at times of being our own worst enemy. Unfortunately, over time, that negative talk can wreak havoc on our self-esteem. Be kind to yourself, having faith in the knowledge that you are doing the best that you can on any given day. Lupus is unpredictable and if laying low for a while (a day, a week, a month or several) is what your body demands, then that is honoring your body and your well-being, so be kind to yourself!
ADAPTING TO THE PAIN
Have you ever attempted to try a new sport or exercise? I remember the first time I tried yoga. Let me tell you, it was not easy. I was clumsy, off-balanced, and very sore the next week! I thought about never going back, but I wanted to see if yoga would improve my range of motion and muscle stiffness. So, I went back, and it was tough for a while. But, eventually, I wasn’t feeling sore anymore! And I wasn’t so clumsy. And I was getting stronger and my balance was improving! That my friends, is called adaptation. And you can use it to help with your pain, too. The principle of adaptation refers to the process that the body goes through when getting accustomed to a particular exercise, or feeling through repeated exposure. This principle is how, after 26 years of living with lupus, I survive my day. This is also how I am able to empathize and show compassion to others who are suffering, but I remember the agony of those first years before I was able to adapt to my pain.
EMBRACING YOUR NEW NORMAL
- Start your day the right way… with an attitude of gratitude!
- Praise yourself for who you are not what you do
- Let go of the past
- Welcome new experiences
- Love thy neighbor
To summarize, let me say this, “You’ve got this.” The pain is rough, this we know. The pain will get you down sometimes, this we also know. But, you will adapt and grow stronger. And one day you will be able to look your pain in the face and say, “Pain, why don’t you UBER your way somewhere else, you are not going to ruin my day.”
https://www.psychologytoday.com/blog/the-mindful-self-express/201610/living-mindfully-chronic-pain-and-illnessIf You Have to Wear an Ugly Dress, Learn to Accessorize, Linda McNamara, RN, MBA & Karen Kemper, MSPH, PhD, 2011 Wheatmark Press; P. 105-106
*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at firstname.lastname@example.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.