When I first got diagnosed with fibromyalgia I was set out to fix myself – the doctor wrote a letter to keep me off of work for two weeks to try to figure out how to get a handle on my fibromyalgia. Little did I know, learning to manage fibromyalgia was not just a two week process. My two weeks on medical leave ended before I even figured out what fibromyalgia was! Weeks turned into months, then a year – Here I find myself three and a half years later. I have realized you can’t put a time limit on learning to live with fibromyalgia – as it can change drastically in minutes. After all – it is considered a chronic condition.
My doctor referred me to a persistent pain clinic after I had a rheumatologist confirm my fibromyalgia diagnosis. Pain clinics usually function as a multidisciplinary team. The team works together to help relief pain and help you learn how to maintain the pain on a daily basis. I had high hopes when I finally got a call back to come in for my initial appointment. After a few appointments at the pain clinic I soon questioned myself to whether I made the right choice in attending a pain clinic. There are many mixed emotions on pain clinics. Some people feel they have benefited from them, while others are at the totally opposite end of the scale and express they have not helped manage their chronic pain at all. My experience was by far the worst experience of my life.
With that being said, I come to my first word of advice about learning to live with fibromyalgia.
1. Take your health into your own hands and take responsibility. Don’t wait for someone to “fix” you. I soon realized that many health care providers did not want to help guide me in trying to manage my fibromyalgia. It is not our fault we got diagnosed with fibromyalgia, but it is our responsibility to step up, and try to improve symptoms.
2. Learn your limitations! Do not let anyone else determine these limitations for you. You know your body best- especially if you learn to pay attention to the warning signs! I always explain to doctors that I know I am close to my limit by a certain level of pain or fatigue at the time. No one else can determine this, but YOU! Obviously everyone has a different pain threshold and tolerance. It took me months to realize when to stop and rest. I can’t even begin to put it into minutes. Usually we are asked by health care providers how long can we work at a task before the pain or fatigue set it. I stopped trying to explain this to people in minutes, because frankly it changes everyday. I now explain – until I feel a certain pain level or fatigue.
Let’s talk about pain threshold for a second. A pain threshold is a ” minimum intensity at which a person begins to perceive a stimulus as being painful.” If you push yourself way over this pain threshold – you will experience more pain or a fibro flare. Experts say to push yourself just above this threshold line, to allow your pain tolerance to slowly increase.
3. Learn your strengths! I learned a long time ago, instead of concentrating on weaknesses, one should find their strengths. Your strengths can help build up your weaknesses. If you focus solely on your weaknesses you may feel defeated. Fibromyalgia can bring about many weaknesses/limitations. By building off your strengths, one will be more motivated and involved in their treatment routes too! Example: I may be able to walk for 10 minutes at a time. Before fibromyalgia took a front seat I could walk hours on end. However, walking 10 minutes is a strength in my eyes. Not my weakness. I can still walk and move! A ten minute walk is better then zero? Correct?
4. Don’t compare yourself or allow anyone to compare you to others. If you know others with fibromyalgia and you are also faced with having to learn to live with fibromyalgia – don’t compare yourself to them. Don’t let health care providers compare you to other patients with fibromyalgia either! Your fibromyalgia journey is your own. You can’t begin to compare yourself to others. You may experience the same symptoms, but the way your body responds will be far different. I’ve had health care providers tell me they saw success when a specific patient did a certain exercise routine. That same routine caused me flare ups every time.
5. Self care is not negotiable. Life gets busy and it begins to pass by in the blink of an eye. Our schedules get hectic and we often forget to take those moments for self care. I soon realized when living with fibromyalgia, self care is not an option – it is a SURVIVAL tool. You must take those moment to indulge self-care practices – even if it is five minutes to watch the last few moments of the sunset disappear behind the horizon while you drink a cup a tea from your favorite coffee mug. There are many other ways to take part in selfcare. Try a 30 day self care challenge like the one below!
6. Learn to live life at a slower pace. Ever hear the saying, ” stop and smell the roses!” It simply means slow down and enjoy life. It is hard to enjoy life when we live in constant pain all the time, but living with fibromyalgia has taught me to slow down and look at life a little differently. When I slowed down ( I was always on the go) my pain levels began to lower. Having a slower paced life, does not mean you have failed. It means you are doing what your body needs – and that is okay!
Now is all we have. We don’t know what an hour from now will look like or even what tomorrow will bring. One moment you are feeling well enough to get something done, the next there is severe pain ruining your day. The unpredictability of fibromyalgia had made me realize I have to live in the NOW. Is this why we are often told to work at being more mindful? Did you know practicing mindfulness can help relieve stress, lower blood pressure, reduce chronic pain, and improve sleep!
I have come to the conclusion learning to manage fibromyalgia is a lifetime process. You cannot put a time limit on this process. I found when I did try to set a time frame, I became frustrated and discouraged when those goals were not met. Day by day – or better yet minute by minute!