I live in a body that hurts. Always. Living with Central Sensitization Syndrome, more commonly referred to as Fibromyalgia has changed my world in many ways. For nearly 14 years Karen G Clemenson has been getting me ready for this challenge because she always is trying to find the positive; eking our every bit of goodness in my life is my greatest tool!
Although there is no specific x-ray, labs or physical exam that makes it easy to diagnose, fibromyalgia is very real. When you have fibromyalgia you are used to chronic pain and tenderness all over your body but there are specific spots that doctors use to diagnose fibromyalgia. These tender points are:
- Front and back of the neck
- Mid to upper back of the shoulders
- Upper chest
- Elbows
- Upper buttocks
- Hips
- Knees
Fibromyalgia is one of the most common types of chronic pain disorders. More than 5 million Americans have fibromyalgia. 80% of people who have fibro are women, but men get it too. Teenagers can also get it, although it is most common to show up in your 30’s. Women tend to have more symptoms and greater pain than men, however all people respond similarly to treatment
Some people think that fibro pain is mild, but that is only the case for those who can take the medications to help with the symptoms. I personally cannot take the pain medications and anti-inflammatory pills because they will react badly with other medications I take. Fibromyalgia has drastically changed my world and the more I learn about it the more I understand that it has been with me for a very long time.
I have had to learn to gauge my energy output. As my friend, Jamie Holloway, has told me many times, “We only have so many spoons,” or so much energy each day and when you run out, you are out. I miss my 20 year old body so much! I used to be able to work all day and be productive. That is how I used to measure my success. I think living with chronic conditions is not for the weak, nor for those who don’t like themselves very much because when you can’t move because you hurt so bad, that you can’t even sleep, you are stuck with yourself and what is running around in your head. This is where seeking out positivity and love saves me every day.
Symptoms for Fibromyalgia include:
- Widespread pain (constant)
- Chronic pain
- Deep pain
- All-over pain
- Aching pain
- Radiating pain
- Shooting pain
- Tender pain
- Chronic Fatigue (many people with fibro have sleep disorders, restless leg syndrome and sleep apnea that interrupt sleep)
- Cognitive difficulties (memory and thinking clearly)
- Irritable bowel syndrome (IBS)
- Migraine and other types of headaches
- Interstitial cystitis or painful bladder syndrome
- Jaw pain and temporomandibular joint disorders (TMJ)
- Depression and Anxiety
- Bladder problems
- Balance problems
- Tingling and numbness
- Tinnitus (ringing in ears)
- Rashes
- Muscle spasms
- Bloating
- Sinus problems
- Tooth disorders
Having fibromyalgia also tends to cause Hyperalgesia and Allodynia. Hyperalgesia a greater experience to pain; a pinprick may feel like a sharp, stabbing pain. Allodynia is pain to normally non painful contact like a hug or handshake. Allodynia also may include increased sensitivity to smells, bright lights, loud sounds and changes to weather, heat, cold and various foods.
I have suffered with allodynia for years. To borrow a phrase from a dear friend, Tali, “I sometimes feel like I am trapped inside my body.” Hugs sometimes hurt, lights and sounds are no fun sometimes and as I get older, there are more foods I can’t enjoy. Let’s not talk about weather…
Causes & Risks for Sensitization Syndrome
- Genetics & family history
- Infections may trigger fibromyalgia
- Physical or emotional trauma
- Fibromyalgia is most common in women
- Other disorders like osteoarthritis, rheumatoid arthritis or lupus may trigger fibro
- Pain and lack of sleep may make it hard or impossible for some people to keep up with responsibilities at work and home
- Constant frustration can also cause depression and anxiety
I also live with Generalized Anxiety Disorder, which causes me to twitch at varying levels; sometimes the pain I feel triggers it more, so much so, especially when I go from standing to lying down, that I look like I am convulsing for a few moments.
What You Can Do
Appropriate exercise. Start slow. All exercise causes inflammation so start with 5 minutes, or whatever you can do. To quote my rheumy, “If you can’t move then you did too much yesterday.” Listen to your body; if you are starting to hurt, stop. Always stretch before and after a workout and keep track of what you are doing. Try to be mindful of how long you sit. The biggest challenge for me is not letting my muscles get stiff. For some people with fibromyalgia, Tai Chi is a great way to move, some people enjoy yoga or swimming or walking…in case you didn’t know it, making love also triggers hormones that relieve pain and it is a GREAT way to burn calories!
Sleep. Stick to a sleeping schedule and nighttime routine. Keep your bedroom cool and relaxing. Do not drink coffee or other caffeinated beverages (and alcohol) at nighttime…Cut out naps as much as possible so that you are more tired at night.
Eat. Be mindful of medications that react badly with your medications. It may help to research foods that cause inflammation and eliminate or restrict how much or how often you eat them.
- Sugar
- Vegetable Oil
- Fried Foods
- White flour
- Dairy
- Artificial Sweeteners
- Artificial Additives
- Saturated Fats
- Grain-Fed Meats
- Processed Meats
- Gluten
- Alcohol
- Trans Fat Foods
- Fast Food
I have made several changes to my diet. We don’t even buy vegetable oil; olive, avocado and coconut oil are better for our bodies and they taste great. I try to plan meals that have lots of veggies and smaller portions of meats (soups are great for this). We do not eat diet food in our house; when we decide to have dessert, we try to be mindful of portions and how often we have treats. I also use Unsweetened Vanilla Almond Milk wherever milk is called for, it is lower in calories and cholesterol and it is a great substitute. I also don’t purchase very many processed foods, I have found I feel better when I eat foods I made from scratch and it is the best way to avoid additives.
Support. You can’t and shouldn’t try to live with fibromyalgia or any chronic illness alone. Create your team. Your team can include trusted friends and/or family who are compassionate and understanding, your doctors, your personal trainer and your counselor. You might even find a support group to join. When we learn from each other we grow faster.
Breathe. Stress makes fibromyalgia worse. Make time for relaxation. Meditation and visualization are great tools. Deep breathing is vital and helps our bodies release toxins that might be causing stress.
Pain Management. There are many ways to deal with pain that do not include medication. A lot pain management include sleep, what you eat, emotional support and relaxation but distraction is one of my most used tools. You can train the part of your brain to handle pain more successfully but it takes practice. First a positive attitude (or as positive as you can muster in the moment) is vital. Next when the pain is bad, try to think about something else, someone you love, a fun thing you did or are planning or make a small and achievable goal (like reading a book or playing a game or creating something) and then do it so you can feel successful. Do whatever you can that will make now better. Many times this saves me because focusing on what hurts only makes the pain worse.
A big part of pain management is accepting the pain. The fear of the pain can be more debilitating than the pain itself. It took me a long time to mourn the loss of my old life; I still am a little bit. But my counselor looked very excited when I told her I was ready to start working on quality of life instead of quantity. I can’t do as much as I used to, but it seems to be a great time to learn how to think, hope and most of all, love myself and others better.
I hope this article helps Fuel Your Wellness. Please leave your comments below.
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Summer D Clemenson co-owns Clemenson Enterprises and Wellness Works NW with her wife, Karen G Clemenson. Their personal motto is Creativity, Honesty & Positivity are a must! This mantra helps them stay community and wellness minded in all they do. Summer also writes poetry and inspirational blogs @ ClemensonEnterprises.com. Her crochet art can be viewed and purchased @ KnottyWares.com & she loves special orders!
