Living With Fibromyalgia

I've experienced the pain of fibro since I was a young girl. It would hurt to walk and I couldn't explain why, and my muscles and joints hurt or were fatigued for no reason. My pediatrician didn't know enough about the condition and thought it was something I would grow out of, so I didn't do my research until later on when it began affecting me more. There are many more extreme cases than mine, but it still does impact many of my activities at times and I would like to provide some information I've learned about it over the years. Every body and every fibro patient is differently, though, so what hurts me may not hurt you, and what helps me may not help you.

What is fibromyalgia?

It is a musculoskeletal disorder that causes widespread pain and fatigue. Basically, it affects the way your brain processes pain. Even though nothing is damaging your body, painful sensations are amplified immensely and can be impossible to ignore.

The Symptoms:

• Widespread pain and fatigue. There are many tender points that help doctors diagnose fibromyalgia (see right). These points, however, may not be the actual areas you are having the most pain. My muscle pain occurs mainly in my legs and left arm. It is a sharp pain at times, but usually I describe it as a constant, dull ache that flares up worse if I don't take it easy. There is also joint pain that makes me feel like I'm a fragile, brittle woman beyond my years, and a "bone" pain (to me, it feels like my bones are breaking). One of the worst pains associated with fibro, in my opinion, is the stinging skin. You know that feeling when your foot falls asleep and as it starts reviving you feel that horrible tingling? It's kind of like that, plus getting the chills that hurt when you have the flu... but worse. Everything that comes in contact with your skin stings- water, towels, certain clothing, hugs, air, etc. I have found that hot (like, hot tub hot) baths help about 60% of the time, and other times I just need to bundle up in the softest, non-scratchy clothes I have and let myself do nothing until the pain subsides a little.
• Cognitive problems. "Fibro fog." This is my most disliked symptom and in addition, or probably because, this one has the most impact on me. This includes difficulty with concentration, attention span, and memory. I think this is the hardest symptom to find an accurate and elaborate description of online. Measly, everyday tasks can become overwhelming and incapacitating because of not being able to focus, multitask, or to even be aware of my surroundings. Simple questions about my feelings are a challenge because I mix up words and am sometimes unable to formulate sentences. I know what I want to say in my head, yet when I try speaking it feels like my entire vocabulary just evaporated into thin air. It is frustrating when it's a crucial conversation and you can't get it together. Over-stimulation enhances the cognitive symptoms tremendously.
• Migraines
• Stiffness
• Numbness/tingling/muscle twitches
• Sleep problems. This can be anything from insomnia to waking up not feeling refreshed or rested. 
• Poor balance/coordination. I will admit that I run into corners of walls... a lot. Learning to laugh it off helps!
• Sensory overload. I feel this often. If there is too much stimulation around me, I freeze up and cannot concentrate. Certain fluorescent lights do this, as well as too much background noise, or changes to the pressure, temperature, and/or humidity. 
• Tendency to cry easily
• Bruising easily
• Popping/cracking of bones. All. The. Time.

There are more symptoms and details, but I listed the major ones that I deal with. Some of these have broken my self esteem down. I can't lie, it made me feel like less of a person because I was unable to recall important things, handle stimulation or pressure, or be as articulate as I know I can be. It still makes me feel selfish when I have to rest and am therefore not productive throughout the day because I feel pain that originates in my brain. I am getting better at pinpointing my triggers and knowing when to just take care of myself so I can bounce back more quickly. If I overdo it, it will only make it worse.

Finding Relief: Improve Your Lifestyle

Now, I know hearing these things gets old, but there is a reason everybody keeps saying them. It works. Taking care of you body and the most basic, physical level of existence is a major key to feeling better on the inside. Not getting enough sleep, a poor diet, and stress can knock you down and keep you there. That being said...

• Get a good night's sleep. Now, I know feeling well-rested isn't really a fibro patient's forte and no matter what anybody says about trying to improve the quality of sleep we get, realizing that quality sleep won't ever be guaranteed for us is probably something that we need to come to terms with. But there ARE ways to make the best of the sleep you get.
• Go to bed at a decent time. For me, I get the best results if I go to sleep between 9-10pm. I know for many people that is not possible, and even though it helps me I don't do that everyday because I enjoy giving in to my night owl tendencies. Just don't fight sleep until 1am every day and expect to not have full-on fibro fog and a migraine when you wake up.
• Assign a regular bedtime and wake-up, get-up time. Aiming to sleep around the same time every day really does help.
• Avoid caffeine a few hours before that bedtime.
• Eat right. Don't eat junk all the time. The difference you will feel is amazing. I'm not talking about becoming vegan or gluten-free (if that is your personal choice, good for you- I'm not inclined to do so, but I'm not against the concept), I'm just talking about avoiding processed foods. Eating fresh fruits and veggies and lean meats. If you like cow's milk, drink skim. Little adjustments here and there in your diet will greatly affect your overall health and you WILL notice a difference. You don't have to swear away all fast food places for the rest of your life, but you really are what you eat.
• Manage alcohol consumption. By manage, I mean reduce. Sometimes I like to relax with a few glasses of wine, but if it happens more than a couple days a week I notice it takes a toll on my body and mind. I feel more fog, pain, and stiffness.
• Exercise. I have tried so many different exercises over the years, and my body could not handle many. Don't overdo it, but don't completely stop. Find a balance. I found mine with pilates, yoga, and stretching. Stretching alone works wonders on days that you don't think you can exert yourself during a pilates workout. 
• Don't take on too much, and be easy on yourself. Learn how to say "no." Learn boundaries. Don't isolate yourself, but also realize it's okay to decline an outing because you're not feeling well. Don't try to multitask all the time and understand you might have to complete tasks one at a time, slow and steady. That's okay. Don't feel that you are selfish because you have sensory overload and need some quiet time.
• Find a support system. I am blessed to have such a wonderful husband. He does his best to understand what I go through to the point of researching it himself. He does what he can to help me and listen, but he also doesn't let me "play victim" because of my pain. Build a support system of people who are willing to listen to you. There are so many forums online of wonderful people in the same position as you, going through the same things. Reach out.

There is no cure, but we can and will learn to live our lives to the fullest. We can't let fibromyalgia win and steal our quality of life. If these things help for you as well, I am thrilled. Of course, always talk to your doctor about all of your concerns and symptoms. Learn to love and take care of yourself in the best way. You are NOT fibro.