Learning to Face the Everyday Trials of Fibromyalgia

Living with fibromyalgia isn’t an easy thing to do. You learn to live with a high pain tolerance – otherwise, you would never get out of bed. The television commercials saying fibromyalgia is a disorder with widespread pain don’t even begin to describe the pain. They make it seem like there is no way you can have pain all over your body at once, but you can.

Just being bumped into can send shockwaves through your nervous system and can start a chain of events. Most times I have to still myself and breathe deeply to get past it. Today is a moderate pain day, but my energy levels are almost nonexistent. I did manage to get dressed and eat some breakfast/lunch. I made the mistake of thinking I could accomplish what needed to be done over the weekend and doing it on the same day instead of breaking it down into two or three days.

I miss having a clean home. So, I set myself to the task of cleaning and putting away toys that a 3-year-old thinks it is OK to string through the house. Then came folding a week’s worth of laundry for a family of four, because it was getting harder and harder to find clothing items without digging through four baskets of laundry. I played with said 3-year-old, him climbing on me, jumping up and down and giving me big hugs and squeezes. He is full of energy and I am not, but I try to fake it. Dishes had piled up in the kitchen and recyclables sat everywhere that needed to be rinsed out and placed in the bin. The floor needed cleaning. Two hours later the kitchen was cleaned.

You can’t tell it now – it looks like I haven’t touched it. What normally would have taken two to three hours max to clean took almost eight. The constant need to sit down and take a break is ever-present. Standing for more than 10 minutes at a time causes burning and searing pain in my lower back and excruciating pain in my hips and legs. My legs and feet swell if I am up on them for any length of time and my skin stretches so tight my legs weep. Even my legs “cry” because of the pain.

Today, I have been sitting trying to rest and store up any small amount of energy so I can go to my women’s group at church tonight. If I do anything, I won’t have enough energy to drive up there and walk in. Dusting hasn’t even happened yet this week. I see it needs to be done, but that requires more energy than I have. I have incessant itching on my arms and back, daily. Although I use prescribed lotions to help, it doesn’t take away the itching. Raw spots appear, followed by scabs. My arms look like a war zone, so when I go out I wear long-sleeved shirts, even if it is warm out – fewer questions and embarrassment to deal with.

Sleep patterns are no longer restful sleep. When I was working full-time, I would be severely depleted when I came home and by the time dinner and bath time was over, sleep was not a problem. Now insomnia attacks daily. As a person who also struggles with severe sleep apnea, not only do I use a CPAP machine at night to help keep my airway open, in the attempts to achieve REM sleep, the restorative sleep our bodies need, I also must use supplemental oxygen, because without it oxygen levels in my blood drop to dangerously low levels. My oxygen levels drop to 60 percent. They should be at 92 percent or higher. It is so frustrating. I can feel exhausted and just want to go to bed but once I am there, I can’t sleep. I have learned sleeping without my CPAP causes a whole host of other problems. Headaches, body cramps, confusion, extreme fatigue. It’s like sleeping without any oxygen coursing through your veins. Almost a lifeless state. And days after that occurs, you literally drag yourself to just function. Doing anything that requires attention to detail can cause you to nod off. It is not a way to live.

When I first wake up in the morning, I have a hard time focusing, even with my eyeglasses on. My eyes feel like there is a haze glued to them and it takes almost 30-40 minutes before objects are clear enough to see. Sitting in any one position for too long causes pain in my hips and knees and since there is also arthritis in my back, hips and knees, it is a constant battle to just sit, move, lie down. I know from living with all of these chronic ailments that I have to keep moving and have to push myself – otherwise, I will be in such horrific pain, I won’t want to do anything. But, I have to be careful not to overdo it or I will be down for the count. The fatigue is always there. It’s not just being tired from working too hard or not getting enough sleep – it is fatigue you can feel in your bones. It’s the type of fatigue that if you don’t lie down and rest for at least several hours, you will be physically sick.

You never know when it’s going to hit you and you pray you are at home when it does. It’s like being on a long road trip and you’re stiff and sore and if you don’t get out of the vehicle soon, you might just crash. Fibromyalgia causes so many other symptoms. You never know what your day will bring until you are in the midst of it. For some people, heat makes it worse. For me, the cold is worse because of arthritis. Although, I do tire more easily in humid weather. Looking at me, I may look tired and maybe even close friends see I am in pain, but I don’t look like I’m sick. I am thankful I don’t look like how I feel because it would be a scary sight. Between irritable bowel symptoms and constipation, there is always a fear of what will happen at any given time. It is no way to live.

When you have fibromyalgia, you are aware of everything but have no way of controlling it. Many people I know who have fibro use narcotic painkillers to help with the pain. I am not one of those people. Due to my oxygen levels and breathing problems, I can’t take those. So I use OTC pain meds to help take the edge off as well as anti-depressants to control some of the pain and the depression that comes with it. I hesitate to make any concrete plans with family and friends, because once it’s time to go away, sometimes I just can’t do it. Or I do go and pay for it after the fact. This usually throws me into what’s called a fibro flare. When I’m in a flare-up the pain is magnified 500 times. I don’t want anyone touching me and I don’t even want to breathe. Obviously breathing is important.

I wouldn’t “wish” this disorder on anyone. Living with chronic pain is one of the hardest things I have ever done. I used to love to craft and plant flower beds and spend time outdoors, but now planting my flowers is out of the question. I don’t have the stability to kneel down on my knees or I fall over. I don’t have the muscle tone to stay upright. The degenerative disc disease in my lumbar spine makes it nearly impossible to get up and down without help. If I sit on a hard surface it is easier to get up and down, but that too causes pain; if I sit in a recliner or on the sofa, I can’t get up without assistance. I prefer not to lie in bed all day, although there are days that is exactly what I have to do.

The one thing that gets me through all my pain and afflictions is Jesus Christ. I know He is with me always. I cry out to Him in prayer and let His peace wash all over me. The pain doesn’t end, but I know that no matter what pain I am enduring, Jesus understands and can comfort me.

Some days I cry and grieve of all the things I have lost that I cannot do anymore because of my disabilities, but I cherish the friendships I have gained because they have become a support system to me because these special friends struggle just like I do. We vent to one another; we laugh and cry together. Invisible chronic illness is hard to live with because many people do not understand. Those of us with this disorder don’t like canceling plans and we don’t like complaining. We live in silence for the most part, because we too get tired of hearing it. If you know or love someone with chronic pain and illness, be kind. If you haven’t lived the battle within, ask questions, but be prepared: you may not like what you hear or you may want to help, but sometimes the best thing is just to listen. Let them know you care. It’s hard.

May 12th was Fibromyalgia Awareness Day. Learn what you can, because my guess is you know at least one person that has this. It might even be you. Blessings to all!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via lzf.