Lately, I have had a lot of people either asking me or being directed to ask me how I manage my fibromyalgia. All I can do is share my experience and what has worked for me. But first, let me go back to when I first learned that I had fibromyalgia.
My Story and Diagnosis
Before I was diagnosed with fibromyalgia, I thought I was going crazy. I was in my early 30’s and having severe memory issues, problems with cognitive thinking and concentration. My joints were swollen, every movement was painful and slow, my bones felt like they were on fire. Consistent hot and cold flashes, major over sensitivity to heat, and exhaustion beyond description. Instead of feeling in the prime of my life, I felt as though I was at the end of a long, hard life.
Then began round after round of doctor. After running massive amounts of medical tests and having enough blood drawn to feed a vampire for decades, the answer was always the same. We cannot find anything medically wrong with you. They then began to politely suggest that this was all in my mind and I needed to see a psychiatrist. The frustration, anger, and fear were definitely taking a toll on my body, mind, and spirit. Especially since severe mental illness has been found in my lineage.
Finally, I found an article on rheumatoid arthritis and decided to see a specialist. It was the closest description to what I was going through. After ruling that out, my rheumatologist is the one who diagnosed me with fibromyalgia. After having my condition described to me, relief and anger were my immediate reactions. Relief that I finally knew what was going on and that I wasn’t going crazy. Anger that my body was failing me and that, according to modern medicine, there is not a cure.
So, I did what I always do. I declined all the hard core medication in lieu of natural options. I am not opposed to modern medicines, however I use them as a last resort. After a few years, we did try me on low doses of a medication to get the pain and inflammation under control. While the medication worked wonders, the side effect was horrid. It caused my natural scent to change and constant perspiring, disgusting! I constantly felt and smelt as though I had just finished a massive workout. That medication did not last long and increased my conviction to find natural remedies for this.
Mental Adjustments to my diagnosis
A lot of my initial work was mental. I had to adjust to the fact that I had a chronic condition. This meant that I could no longer run myself at the ragged pace that I had operated under for the last two decades. In fact, in my mind I heard the doctor that I had when I was 19. He told me that if I didn’t learn to slow down and enjoy life, I would suffer massive burnout. Part of me wondered then and now, if pushing my body, mind, and spirit well past its limits on a daily basis for years caused this chronic condition.
I was raised to work hard from the moment I got up to the moment I went to bed. That if I wasn’t busy, then I was lazy and worthless. Now, I wonder how much that mentality and lifestyle brought these changes within my body. After all, if we don’t do what is good for us the universe has a way of making us slow down.
Slowing down is one of the hardest things we can do. Many of us were not raised to go slow and if you work in corporate America, it is very easy to pick up a fast pace of life. However, there are things you can do to keep yourself from over scheduling. Plus certain lifestyle changes will naturally have you slow down.
Day Planner. Purchase one with limited writing space. The one I have allows me to write approximately 3 things down a day. This is absolutely perfect to keep me from overbooking. The first thing that I write down are any appointments. Then I write down the days I wish to exercise, meditate or perform a certain spiritual practice. I make sure there is one of those items each down (now to get better at actually doing the exercise consistently!). Then I have a spot left for a “to do” item.
Depending on the item is how many days I allow for it to be completed. Be realistic about this. Remember that you will have bad days and not be able to accomplish anything other than basic self care. Then be realistic about your normal time restrictions. For example, I am a stay at home mom. My kids always come first and they have radar for when your attention must be directed elsewhere. Perfectly good children always decide to lose their minds the moment you have to accomplish something. It’s in the child handbook on how to make mama insane … look it up. So, I have learned to pad in extra time.
Extra time. If you finish something early, don’t see what else you can throw in for your day. Take the time to add quality to your life, not quantity. This is still a struggle for me. But I am getting better at it. Sometimes quality is a trade off. I have been hurting a bit this last week. Normally, per an agreement with Freyrson, when the kids nap it is me time. Due to hurting, yesterday, I knew that quality for me would be to go grocery shopping while the kids napped versus taking me time and dragging them with me after their nap. So, I left the kids home with dad and accomplished that. The quality came in from making a necessary task much easier on myself by going solo.
Meditation. By its very nature, it will slow you down. Medically, meditation has been proven to slow your body down to healthy levels. This allows your body to attain more of the rest and relaxation it needs for self healing. You will fall asleep, especially at first. Your body is a mess and chances you are an emotional mess to. Having a chronic condition takes a major toll on you. So, you will fall asleep, especially at first. Now, it really comes down to how well I have slept or how long bear cub has let me sleep that night. Most days I can meditate without falling asleep. If you have trouble falling into quality sleep, I recommend laying on your back, closing your eyes and focus on slow even breathing. It will relax you and help you get into a deeper sleep. There are also medication channels on YouTube that play relaxing music and music designed to stimulate specific brain waves.
I have also learned that chronic pain and fatigue can put me on a short leash. So, to counter the affects of being snappy and impatient, try meditation. It gives you a great place of calm to work from. When I get frustrated I try and remember to close my eyes and take 7 breathes. I fell out of this habit and now am working on getting it back.
Quality vs. Quantity
Another difficult thing to learn is what is the quality vs. quantity in your life. Do not just apply it to one aspect of your life, but all aspects. How you spend your time, who you associate with, the types of conversations you have, mental conversations, tv, and etc. Learn to identify the negative in your life. Do you have that friend who only knows you when they need something? Gossip? Self-deprecating thought patterns? Identify them and then change things. I don’t care if you have known someone 5 minutes or 50 years. If that relationship has become negative and toxic in your life, then it is time to either see if you can change the pattern of that relationship or move on. negativity is only going to bring more illness.
Technology. How many hours a day do you spend on technology (smartphones, tablets, PC, e-readers, television, etc)? When is the last time you stepped outside for a length of time? Can you give yourself a technology free day a week? How about an hour a night before bed? Quality vs. Quantity. I love my technology but am always learning ways to use it more effectively. To add to my life vs. being my life.
Whatever your religious or spiritual beliefs, make time for them daily. It will force you to slow down and be reflective. Incorporating a few small moments of gratitude each day slowly changes our focus. It begins to shift our perspective until we look forward to the quality of quiet, communion, and reflection.
This is not for everyone. Find some artistic or creative way to release your emotions. My primary form is writing. I do private journaling and public writing. Free flow writing to reflective writing to topic writing. Every moment feeds my soul. Other passions are walking in nature, yoga (which I do not feed enough), and photography.
Water is amazingly therapeutic. Recently, a friend of mine has discovered salt water baths. They do help, a lot. Don’t use table salt, use sea salts. I also like to incorporate aromatherapy into my baths. As well as, wearing them on a daily basis.
I am sure there is more and when I think of it will update this post.