Fibromyalgia Hell in a Nutshell
What is Fibromyalgia?
Fibromyalgia is a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas, loss of concentration, short term memory loss, sleep problems such as insomnia, and sometimes even digestive problems. Unfortunately many people are not well informed about this condition and others ignorantly dismiss it as not being a real condition. It is very real, as many can attest. Fibromyalgia attacks often out of no where, although there are some things that can trigger a bad flare. The thing is though, many sufferers of this dreadful condition don't often know what their triggers are.
Some triggers could be the weather, certain foods, a low immune system, lack of sleep, and even stress. A flare up is when, out of the blue you feel awful. Let me define awful. A sufferer from Fibromyalgia can wake up on any random moment and feel as though they've been in a brawl. Their shoulders hurt and burn. The pain shoots deeply through the back of their neck. Their head is throbbing and in a daze. A thread of pulling, stretching pain runs down their forearms and everyday activities like typing, using the phone, or even combing their hair becomes extremely painful. Other pains and symptoms include, hip and buttocks pain, making it uncomfortable to walk short distances or even stand for lengths at a time. For me it feels like the joints in my hips are loose and my legs are tender to the touch, perhaps the most tender part of my body. Sometimes my feet feel numb.
Besides the widespread pain, I experience almost daily, I also have to deal with very poor sleep habits. I am often fatigued beyond measure and feel sluggish as a result. Just imagine your arms hurt to lift, a deep-seated and constant gnawing pain in the middle of your back, being so tired that you're often dozing off, but then when you can finally retire for the day, you toss and turn because every way you try to rest your body, it causes another part to ache. Sometimes I might lay on my right side, but then it feels like my left arm and hip are hanging off by the thinnest sinews. so I turn over on the left side, but that shoulder pain isn't one of those pains where when you lie on it and apply pressure, it subsides. Instead it just throbs. So, obviously I attempt to lay on my back, and when I do so, I try to press the middle of my back down hard and flat, hoping to alleviate that lingering pain that lives in the middle of my back, but this causes the pain to travel into my neck. Additionally with a poor digestive system, often associated with Fibromyalgia, and separately diagnosed as GERD, lying on my back often results in me choking, and many times choking and even vomiting in my sleep, which can be very dangerous.
How Fibromyalgia Flares Change Your Life
These flares can last anywhere from a few days to a few months, and when you're not in the middle of a horrible flare, perhaps your back just hurts, or your shoulder just hurts, or your legs are tender to touch as though they are bruised. A flare up is characterized by having multiple Fibromyalgia symptoms at once and not being able to do much if anything about it. Fibromyalgia flare ups can leave you very cranky and depressed, even sourly pessimistic. When you suffer from flares, your life is upside down. You can't get your work or chores done, you don't get adequate sleep, you are always in chronic, never-ending pain and the worst part of it all is that PEOPLE DON'T UNDERSTAND. And since they don't understand it leaves you isolated, left out, and sometimes even picked on and teased. You tend to get used to your friends stopping inviting you places because you often cancel or don't show up. When in large groups and making plans, you hear comments like, "I know you're not coming," or "She never shows up," or "I don't believe you're coming." This hurts because often a Fibro sufferer wants to participate in the fun of life just like everyone else, but when it hurts, IT HURTS. Sometimes we just can't do it. What people don't understand is that when you live with chronic pain on a daily basis, you learn how to push through it as best you can. That means we sometimes smile or crack a joke when our back is killing us, or we may decide to dress up nice although we feel horrible. We understand that life goes on despite our pains. It seems, however, that the people around us don't understand though, that just because they can't see the physical evidence of our suffering, it doesn't mean it's not real. I can't tell you how many times I've attempted to discuss my pain and have been dismissed as though I'm a hypochondriac or as though I'm not even speaking. The truth is that makes you resentful of people. If we were balding like chemotherapy patients or covered in tubes and surrounded by machines, it would be different. Then someone might offer to carry our bag, give up their seat on the bus, cook us a meal, etc. As it stands though, there have been many days where I thought it would be easier to just die or I wondered what do I have to do to be admitted into a hospital for a week or so and be taken care of for a change. It is depressing. Yes, Fibromyalgia can cause depression.
Some people may be suffering from simple sadness, while others may be depressed, or depressed and not even know it. According to www.webmd.com, there are distinct symptoms of depression that is associated with chronic pain. Those symptoms are:
- decreased energy
- difficulty concentrating or making decisions
- feelings of hopelessness, guilt, or irritability
- loss of interest in nearly all activities
- persistent sad or anxious mood
- uncontrollable tearfulness
"In severe cases, depression with chronic pain can lead to thoughts of death or suicide (webmd)."
The pain and fatigue that come along with Fibromyalgia can lead to anxiety and social isolation. The pain and tenderness sufferers endure will inevitably lead to a lot less and even minimal to no physical activities, which in turn results in a person being withdrawn. Sufferers sometimes stop making plans to enjoy life altogether. Instead their life revolves around making plans for how to minimize pain and discomfort, When this change of life and isolation sets into reality, Fibro sufferers can become sad or even depressed. Imagine looking forward to the rest of your life with daily chronic pain, no cure, and missing out on regular daily life activities, with little to no acknowledgement. Fibromyalgia sufferers often feel invisible or like they don't matter. Sometimes people don't believe that their pain or fatigue is as chronic as they say it is and other times, people simply forget because physical evidence of this condition is so rare... out of sight, out of mind. It can feel like a dismal fate.
You often feel left out and forgotten about. In my case, I get so angry when my children or partner don't complete chores or when messes pile up. I feel neglected when I'm in pain, but I have to go cook dinner, go to the grocery store, or carry grocery bags. I feel like I'm being taken for granted when I cook and serve meals and no one ever does it for me. I feel like "I'm the one who doesn't feel well. When will anyone ever care?" I get angry when other people in my house take naps and I never sleep, or when I finally do sleep and I'm awakened. I often feel like no one cares. I suppose for them, all they see is a person complaining about not feeling well or being in pain all day, but no visible symptoms. On the flip side, I feel like I'm crying out and begging for acknowledgement and extra help and I get nothing. I admit, I'm sometimes no joy to be around because I'm grumpy, or I'm moaning in pain, I have short patience, and I can be snappy. There have been days where I have hated being alive and I have verbalized it, surely putting a strain on others around me. That is, if they even noticed. I'm officially registered in the State of New Jersey as a person with disabilities, but in my everyday life no one cares, the show must go on, and I'm resentful. It hurts to be in so much pain all of the time (pun intended) and be dismissed or get no extra help because the symptoms don't show on the surface.
Fibromyalgia Attacks Sufferers in These Recognized Tender Points & More
Dealing With the Pain
I went through many different doctors and medications before finding a treatment plan that even made a difference in my pain and discomfort levels. I saw a Neurologist regularly and was prescribed Gabapentin. That seemed like a placebo drug, as it did nothing for me. I would go through a bottle of Ibuprofen in 2 weeks and when I felt they no longer worked or that my body was becoming immune, I would switch to Excedrin Back & Body, Alleve, and most recently Tylenol Arthritis. I switched doctors and was prescribed Cymbalta, which gave minimal relief, and then a combination of Cymbalta, Lyrica, and Tramadol. I also use pain patches and different pain creams.
I have learned to listen to my body and not over exert myself. Studies have shown that when a person with Fibromyalgia over exerts themselves, they often regret it later on when they suffer from flare ups. I learned the hard way. Even on my worst days, I felt obligated to make it to work and be on time. I ignored my body when I crawled out of bed in a hazy brain fog and pain. I stood at the foot of the bed, trying to decide what to wear to work, when my legs just crumbled underneath me and I crashed down hard to the floor. I was in shock and confused. I thought that I would feel myself fainting before I went down, as I have felt the room darkening and dizzy before when I knew I would faint. This time, however, I didn't know what hit me, or what I hit. All I know is in what seemed like a millisecond, I was on the floor, bruised, and in even more pain.
That day began a different but dangerous type of flare up that I had never endured before. Still I pushed on and did not listen to my body. I forced myself to go to work when I felt my worse. My commute was about 45 minutes to an hour long, but everyday I would have to pull over and close my eyes midway or even right before I reached my destination. The fatigue was accompanied by a weird passing out or dozing off. I would be awake and tired and then suddenly picking my head up from dozing. I persisted on even still. My Dad and significant other would take turns staying on the phone with me until I made it to work or home, fearful that i wouldn't stay awake or conscious for the drive. They were right in doing so.
One cold morning, I was exhausted as usual and on the phone with my significant other, but wanting to listen to music. I assured my significant other that I was fine and within 10 minutes I had blacked out behind the wheel. I remember being strangely calm as the car started to spin out of control. It felt more like a dream than my reality. I spun around almost two full times in the middle of a 3 lane highway. When I finished spinning, my car was facing oncoming traffic and I had managed to avoid all cars and even the dividers in the highway. I slowly did a K-turn and rejoined regular traffic, still in a haze, still calm, still fatigued. I relived that moment a dozen times that day. I realized that it was time to listen to my body. A part of me gave up fighting and was sad. Another part of me merely accepted reality and resigned, and another part of me promised to take better care of myself.
I've since then considered giving up my job, but decided i would feel helpless and useless. Instead, I decided to use my sick-days when I need them. I've learned to just say "NO" when I can't or simply don't feel well. I make less plans and am upfront with people from the beginning. I tell them that my presence is no guarantee. I prepare dinner for my family and get right into bed afterwards. I try to rest as much as possible and I try to make it as peaceful as possible since rest for me doesn't often involve actual sleeping.
Studies suggest reducing stress, getting on and keeping a sleep schedule, finding tolerable exercise that works for you, sticking to your medications, trying massage therapy and acupuncture, trying calming herbs, seeing a chiropractor and more. Each person will respond differently to different methods of coping, just as each person will experience symptoms uniquely.
How Do You Cope with Fibromyalgia
What method do you find most effective with helping you cope with the symptoms of Fibromyalgia?
Understanding How Chronic Pain Affects Daily Activities
Getting The Help You Need & Deserve
If you think you or someone you know may be suffering from Fibromyalgia, be sure to find a good doctor who understands this condition and is willing to work with you. Diagnosing Fibromyalgia is very difficult and often involves lots of tests, ruling other illnesses out such as Crohn's disease, Lupus, Arthritis, etc. Be open to and prepared to try several different medications at different doses before finding one that helps. Understand that even when you find a suitable medication dosage, it will not be a cure, flares are still inevitable, and the medication's purpose it to merely make life with Fibromyalgia more bearable.
Read as much as you can about the condition. Being armed with information will help you find the right help you need: doctors, physical therapists, massage therapist, acupuncturist, support groups, and help from family and friends.
Here are some common symptoms to look for if you think you have Fibromyalgia:
- Chronic muscle aches, charlie horses, spasms
- Fatigue and decreased energy
- Total sleeplessness or sleeping without rejuvenation
- Poor concentration and memory called FibroFog
- Body Stiffness
- Body tenderness as though you are bruised, sore to the touch
- exaggerated pain to stimulus
- Stomach pains, bloating, nausea, constipation, and diarrhea
- migraine and tension headaches
- Numbness in hands, face, legs, feet, and arms
- Anxiousness and/or Depression
- Sensitivity to one or more of the following: odors, noise, bright lights, foods, cold temperatures, and medications
- Feeling anxious or depressed
- Numbness or tingling in the face, arms, hands, legs, or feet
- Little to no tolerance for exercise or strenuous activities
Symptoms vary from day to day and from person to person. For more information, do a thorough internet search. You'll find that there is a lot of information out there about Fibromyalgia and lots of journal accounts from real life sufferers who want to tell their story. It is important to know that if you are a sufferer, then you are not alone, and if you know someone who suffers, you don't have to let them suffer alone.