I love these graphics. Sometimes the best way to understand a bunch of statistics and data is visually. I know I’m a visual learner. The only thing I don’t like about these graphics is that the statistic on how many women have fibromyalgia should be how many people. Men get fibromyalgia too. This is not just a “woman’s disease.”
I’ve been working through a lot the past year and a half, and perhaps most especially the last few months. I came across this this morning and it struck a chord so I wanted to share. I think of all the lessons I have learned, “You will relapse and that’s okay – as long as you keep fighting,” is the most important. I’ve been frustrated by the feeling that I recover from one physical ailment just to have another one come at me that I have to deal with. Life is a rollercoaster sometimes and sometimes all you can do is roll with the ups and downs as they come. I’ve also learned to get the most enjoyment out of the “ups” as I can. It’s important to enjoy those times while they last. They help you get through the “downs.”
“In the confrontation between the stream and the rock, the stream always wins not through strength, but through persistence.” –Peter Davies
Today is Fibromyalgia Awareness Day! In honor of this, I thought I’d repost one of my first posts discussing what fibromyalgia is. Wear your purple today and show everyone you are a fibromyalgia warrior! #FibromyalgiaAwarenessDay
What is Fibromyalgia?
For those of you who (unfortunately) aren’t already intimately aware of what fibromyalgia is, I thought I’d give a brief introduction to it. Fibromyalgia is also know as Fibromyalgia Syndrome (FMS) and chronic pain disorder. It actually has some links to PTSD, as far as the way the brain works — or rather the way it works but isn’t supposed to be working. Here is the definition of fibromyalgia from the Mayo Clinic’s website. I find that WebMD has some outdated information on fibromyalgia and prefer to reference sites like Mayo’s.
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 bowel 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 pain associated with fibromyalgia often is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
- Back of the head
- Between shoulder blades
- Top of shoulders
- Front sides of neck
- Upper chest
- Outer elbows
- Upper hips
- Sides of hips
- Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms.
If you want to read more about fibromyalgia, here is the link to information it through the Mayo Clinic: http://www.mayoclinic.com/health/fibromyalgia/DS00079/
For me, fibromyalgia at it’s best is the “dull ache” described in the information above. I hurt everywhere, all the time. I have trouble relating to people how much pain I’m in. If you’ve never been in chronic pain, then you really have no clue what I’m going through. The closest analogy I can come up with — and it’s a poor one — is having a migraine headache only the headache is your entire body. It hurts to move, it sometimes hurts to breath, sometimes it even hurts to be awake. I have every single “tender point” in the so-called diagnostic test where your doctor pokes you all over and if you yelp in pain to enough of his pokes, then you have fibromyalgia. My rheumatologist did that to me once and it spiked my pain so badly, he hasn’t done it again. He likes to do it at every check up to see how much his patients improve, but for me he doesn’t bother. I can tell him if I’m improving or not and don’t need him spiking my pain by poking me.
I often use the scale of 1 to 10 (1 being no pain and 10 being the most pain you can imagine) to try to tell people, especially my husband and immediate family, how much pain I’m in on any given day. An average to good day is a 5 or a 6 on that scale for me. I always feel the worst right when I wake and as the evening progresses. 10am to 2pm is the best part of the day for me, and unfortunately I spend those hours at work. After 4 solid years of non-stop, chronic pain, you get used to a certain amount of pain. On the good days where I drop below a 5, it’s actually kind of startling to suddenly realize “Hey, I’m feeling pretty good right now. My pain isn’t terrible.” At those times, your inclination is to rush out and do something fun, or something you don’t normally have the energy to do, like go shopping. That’s an urge you have to fight because if you overdo it any given day, you’ll pay for it the next day. Living with fibro is all about balance. Balance in everything. You have to balance the amount of time you sit in one place (like at your desk) with the amount of time you stretch, walk around, and exercise. You have to get a full 8 to 9 hours of sleep each night to balance out the toll the pain takes on you every day. You have to balance out your depression with good emotions to try to stay in the “up beat” state of mind doctors have found leads to the least amount of pain on a daily basis for people with fibro. You have to eat a balanced diet. You have to balance the time you spend working with time you spend on yourself, meeting your needs and your pain’s needs. You have to balance the time you spend with your husband and family with the time you want to spend in bed, exhausted, just giving in to the pain for awhile.
This blog is about my search for balance in life. My path to making the best of my life in pain. My search for the best path out of the mess fibro has made of my life. I’m always trying to make myself feel better, be better. I’m trying to learn to control my pain and improve my quality of life, and thereby improve the quality of life of my husband and those around me who are affected by my fibro. I hope that writing about my experiences and my journey will help me but will also help anyone out there reading this as well.
R – is definitely for remember. Fibromyalgia is tough on your life. Most of us were Type A personalities that would thrive on the stress of our lives or careers. Once this lovely syndrome Velcros itself to us, we remember with longing our lives and for those of us who lost it….our careers.
R – which brings us to reinvent. If you lost your job or career, Fibromyalgia causes you to have to reinvent your life purpose. This is a tough one. I still struggle with this one but every time someone comments how I’ve helped them I know that I’ve found something that I wouldn’t trade for the world. It has given me a creative outlet and it’s given me purpose.
R – is for reluctance. Even though I’ve found an outlet, I’ve been reluctant to let my old life go. I still go through periods of longing and wish I could try sales again. Every time I think I can do it a doozy of a flare serves as a reality check. Ooh……another R.
R – Here we go. Reality check. Like I said…..just when I think I can disregard my body and run headlong into another idea, a flare comes along and slaps me and says….”not so fast…”
R – is for rebellious. Yes, I’m a rebel. Just look back at the other words. I try to live in a way that is kind to my body but every now and then I say…..eff it and push myself. I need to keep saying…”if you push you will pay.” I cannot forget this because it is true.
R - is for relax. I need to do this more often. It’s not in my nature to live on the comatose side of life but I push too much. If we just close our eyes….shut out the world…..it will help our pain. When life’s challenges come at us: just relax.
R – is for recognize. Listen to your body and recognize what it’s trying to tell you. I know that my flares usually start in my hands. I’ll start rubbing them and then, before I know it, the old familiar ache starts to spread throughout my body. It’s also very important to write symptoms and feelings down for your doctor. I hope you have one that listens to you.
R – is for reminders. When the fog hits and you don’t know why you walked into a room it’s helpful to have little reminders around. I make lists and lists in my phone. I have all my appointments in the calendar. What screws me up is that I forget to look at my phone.
R – is for those restless nights. Even though we have fatigue, we don’t get enough restorative sleep. Thank goodness for my iPad. I don’t know what I’d do without it. To try to get to sleep, I spray lavender on my pillow and I use melatonin tabs called Mid Nites. I know there’s medication to help sleep but I take muscle relaxers and pain medication. I’m afraid to take a sleeping pill on top of that.
R - is for responsible. Remember that all medications are powerful and we need to be responsible with them. That means responsible in taking them and responsible in where we keep them. If you have others in the house with you take care who has access to them.
R – is for relatives. My hope is that they recognize what is happening to you and don’t make you feel like your faking it or being lazy. Fibromyalgia is real. It’s tough enough to deal with the symptoms of this illness without friends or relatives making it worse. If you have people in your life that don’t believe you, get to a support group. Reach out….it will help you. None of us can go through this alone.
R - is for realization. Fibromyalgia isn’t going away and right now there is no cure. We need to learn management tools so that we don’t get overwhelmed. Fortunately, there is a research going on out there that may help point to a cause.
R – is for renewed. I may not get enough sleep but each day I wake up feeling a sense of renewal. I know that life could be a whole lot worse so I try to be grateful for each day. Gratitude and laughter go a long way.
R - is for rewarding. Thank you so much for reading my blog and commenting. All of you have truly given my life a direction that has so much meaning. It truly is one of the most rewarding things I’ve ever done.
R - is for ridiculous.
Reduce it down to the ridiculous and find something to laugh about each and every day.
Find joy and happiness and love.
Sometimes the pain makes it very difficult but find it…in spite of the pain.
In loving memory of my dear aunt Lorena who we lost to cancer last night. She will always be one of my favorite people and I will miss her dearly. This was one of my grandfather’s – her brother’s – favorite poems.
My life is but a weaving
Between my Lord and me
I cannot choose the colors
He worketh steadily
Oft times he weaveth sorrow
And I in follish pride
Forget he sees the upper
And I the underside
But till the loom is silent
And the shuttle ceases to fly
Will he unroll the canvas
And explain the reason why
The dark threads are as needful
In the weavers skillful hand
As the threads of gold and silver
In the pattern he has planned.