In my post about frustrations with my body after pregnancy, I shared this chart that I had created to try to explain my pains to my doctors.
I still have endometriosis and I knew how those pains felt but this was much more. Parts of me felt bruised or sprained, my whole body ached like I had the flu, my jaw clicked, and I was exhausted beyond the normal fatigue of a mom, wife, and small business woman. I had IBS symptoms most days and skin rashes that popped up, most recently one on my face and that caused some self esteem issues. There were parts of my body that were tender and sore or shot bolts of pain when bumped. Some nights I tossed and turned because every position was uncomfortable and I couldn't even rest my knees together when laying on my side because that caused discomfort.
Bouncing around between multiple doctors, getting blood draws and x-rays so much that the insurance company called to ask if I had been in an accident, I finally got an official diagnosis from a rheumatologist. Before the exam, the nurse called and asked me pre-appointment questions. After the quiz, she told me that it had been a quiz to screen for possibility of fibromyalgia. After my appointment with the rheumatologist, that diagnosis was confirmed - on April Fool's Day. Nice joke, body :/.
Though I had been dealing with these pains for a while, having the official diagnosis was both freeing and upsetting all at once. I allowed myself a little pity party but then picked myself up and started researching the disease and what I could do about it.
Mayo Clinic Disease Definition:
"Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable syndrome, anxiety, and depression.
While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help."
The rheumatologist also sent me a packet explaining fibromyalgia and the common symptoms. As I read through it, I thought, "Yep, that's me, and that's me, and that's me, too". My body was such a mess of symptoms that it was difficult to explain, but this diagnosis brought most everything under the umbrella of fibromyalgia or endometriosis.
Having this diagnosis has brought me a lot of peace mentally. I now can confirm:
It was not in my head.
I am not crazy.
I am not lazy.
I am not weak or overly sensitive.
So, what's next?
Fibromyalgia is a chronic illness of the central nervous system so it is not just going to go away, but there are things I can do to improve my quality of life.
Antidepressants are often prescribed even if the patient is not depressed because antidepressants can be helpful in relieving fibromyalgia pain and improving deep, restorative sleep. They work by balancing serotonin and other brain chemicals involved in pain processing. Currently, Lyrica, Savella, and Cymbalta are the most prescribed to help with fibromyalgia. My gynecologist also told me about LDN or low dose naltrexone which helps reset the brain at night. A lot of these medications are not recommended to use while breastfeeding but I was put on a low dose anti-depressant that is safer with nursing and will look into stronger medication options once Eliana decides to wean. Until then, I am concentrating on other coping mechanisms and lifestyle changes.
Though it often hurts to move, it hurts even more to not move. Inactivity can cause even more pain and tenderness so it is important for me to get moving every day. With fibromyalgia, stress can trigger a flare so it is a good idea to find a balance. Though it's not helpful for me to do high impact exercises, I have been taking a one hour weight lifting class 2-3 times a week and going on fast paced stroller walks in my neighborhood 3-4 days a week. I still need to work in some yoga, swimming, and tai-chi type exercises.
|Pump it up!|
|My strolling buddies.|
It has not been proven that certain foods can adversely affect a person with fibro, but it has been shown that those who keep a healthy/fresh food diet do have less severe symptoms. I already have this down for the most part because of my food awareness from endometriosis. I need to keep up my intake of fresh produce and it'll be a little easier now because my Community Supported Agriculture (CSA) has begun. Yay local veggies!
Mindfulness is often recommended to people who deal with chronic pain. It is a way of rewiring how your mind reacts to painful stimuli. I have begun reading the book, You Are Not Your Pain by Vidyamala Burch and Danny Penman and soon in will start taking me through meditations on CD. I am excited so see how this, along with prayer, can help.
This is a tricky one! Many that live with fibro have issues with non-restorative sleep. I am in that same unrestful boat. A sleep study was done a while ago and it was found that I have insomnia, restless leg syndrome, and that I have active/awake brain waves during my deep sleep cycle. This means that even if I am in bed for 10 hours, I can wake up exhausted without having had my body and mind healed during sleep. This is also tricky because I am a mommy of an almost one year old and when she doesn't sleep, neither do I.
My docs have recommended trying to find ways to make getting to sleep easier - things like no caffeine in the afternoon and no screen time an hour before bed. They also said that I might have to take more rests or naps during the day. This is not an easy thing to work into an already busy schedule - which brings me to the next point.
This may be one of the most emotionally complex changes I need to make. I like to make people happy, to work dependably and with quality, to pursue many artistic ventures, to support friends and family and make it to their events, to be strong and consistent. My schedule has always been a full one, even before my daughter came along, and trying to balance it all was extremely challenging, but I did my best to manage as gracefully as possible. Adding two chronic illnesses to the mix that each come with pain and exhaustion tipped that precarious balance and something had to give.
Recently, during one of the evening power strolls with my husband, I brought up what weighed heavy on my mind: priorities. What are the things in our life that take precedence? Our family and health came to the forefront of the conversation. Such a full schedule does not allow time for the self care that is necessary for me and having an unpredictable week and weekend schedule puts stress both on my body and our family. Since the birth of Eliana, my husband and I have been struggling to find time together and having me work weekends makes that even more difficult.
It turns out that the thing that has to give right now is my face painting work. Ask any professional face painter - the job is much more extensive than the time put in at the parties. The hours spent communicating with customers, learning the craft, preparing and cleaning the tools and products, and designing option boards all add up. The time painting is not the easiest on the body either. There are a lot of unnatural positions you put yourself in when trying to paint a moving/squirmy target.
Deciding to respectfully bow out of face painting is a very difficult decision. I adore the artistry, the amazing people I get to work with, and all the smiles I get to see. I have been painting faces for 10 years and it feels strange to stop but it is what needs to happen to create the kind of life environment that will be beneficial to both my family and my health. I will continue to create art and do illustrations and some graphic design, but these are things that can be done from home as well as scheduled around health and family needs. Once I publicly announce this, I will begin to change my web site, business cards, and social accounts to reflect the change. I have a few more gigs booked this summer that I will work but after that, I'll lovingly send customers to my fellow face paint artist friends.
What can I do?
Some of my friends who know about my illnesses have asked how they could help and that is so very kind. Thank you! Right now, there is not much I need but I will let you know if I do. The best things for me from friends and family would be patience, grace, and understanding. To assist with that, there are a few things that I would like for you to know:
• I enjoy my life and I am happy even though my body is not so great.
• If I am having a rough day, I may seem distracted or foggy headed. Please have patience with me.
• You can generally not tell I am sick from the outside but the discomfort is there almost constantly.
• I still am doing my best to enjoy every day and will work through pain; I'll smile and try to act like my usual self.
• I am still figuring all of this out but I am thinking positively and I am grateful for kindness and support.
Writing all this out has been a great way to process everything. Thank you so much for reading!