Fibromyalgia Awareness (Photo credit: Kindreds Page)
In this segment, I’ll be addressing symptoms that are common with Fibromyalgia. When I refer to flare-ups, for the most part I’m referring to the severe pain flare-ups and not the daily chronic pain and other daily chronic symptoms. It’s so much more than the quick sound byte you see on the Lyrica and Cymbalta commercials. ”Fibromyalgia, thought to be the result of over-active nerves sending widespread pain.” Or the rheumatologist‘s view: it’s a musculoskeletal disorder that causes pain in the joints and muscles/fibrous parts of the body.
That’s only if you can find doctors that will recognize it as legitimate. Yes, it’s true. A great many doctors believe that it doesn’t actually exist. You can’t take a blood test for it. You can’t do a scan for it. You can’t do an X-ray or an ultra-sound. There’s no visible cause for the pain.
If there’s an old injury that hurts much more than it should, there’s no explanation for why it hurts more than it should if at all. The only explanation is the disorder of Fibromyalgia itself. And the only “test” is putting pressure on the 18 tender points on the body but it’s not 100% reliable. Many doctors aren’t even aware of that test (I wish I were making that up). The pain is much more than “joint and muscle pain.” It goes far beyond aching, but that’s a place to start in description. Imagine a full body workout with weights on top of jogging at the gym after not working out for years. Not only that, but you go for a swim. When you get up the next morning, imagine how your body feels. Except in addition to that, imagine the “cracking your knuckles” feeling in your knees, neck, shoulders, and back. Imagine that nearly every morning when you get out of bed, simply stepping on the floor sends rockets of pain from the bottoms of your feet up through your calves, aching and pressing at the same time, partly due to the pressure and partly due to the temperature of the floor. Slippers can only moderately cushion the sensations. You hobble to the bathroom, sciatic area already aching, the light too bright, and you brace yourself for having to sit on the porcelain throne. Why? That hurts too.
But it’s very important to note that Fibromyalgia affects everyone differently. So very, very important. As I’ve mentioned before, it’s sort of a spectrum-y disease. It can be worse for some people when they’re still in their teens and twenties, or it might not be diagnose-able until they’re in their 30′s and 40′s. It ends up being a disease diagnosed by exclusion of other diseases as well as the symptoms that you do have. But because it’s so different for everyone, that means that not everyone copes the same way. Not everyone’s pain is the same. Not everyone has the same abilities or disabilities. What works for one doesn’t work for others.
I had someone over the weekend criticize me for still not having found a job yet. Yes, I’ve been job hunting. Emphatically. She said,
“You know that So-And-So also has Fibromyalgia, right? Well, she has a full time job. She works all day every day! She takes care of her family AND SHE WORKS! If she can do it then you can too! So why can’t those people helping you try to find a job find you a job?”
There are so many things wrong with that statement, but my point here for the moment is that she didn’t really grasp the concept that Fibromyalgia is such an individual disease. So-And-So’s symptoms may not be as progressive as mine are, or she may have her symptoms under better control or medications are working better for her. It could be any number of things. She may be more progressive than I am, and she’s just not letting on that she needs to cut back her hours at work and is suffering through her days while her weekends are her time to detox. Who knows? Some people are crippled by this disease and can’t get out of bed. Others can climb mountains. [/end rant]
Diet can be a Very Big Deal in handling symptoms. A natural diet with little in the way of preservatives, artificial sweeteners, artificial food dyes, staying hydrated, avoiding foods that are allergen triggers, avoiding foods that cause digestive upset depending on the person… all can help reduce flare-up frequency, flare-up duration, and flare-up intensity. Diet can trigger a flare-up. For instance, I have to avoid foods that tend to be associated with Diverticulosis and Diverticulitis. I will get the symptoms of Diverticulosis. I was actually hospitalized for that a year ago this past October. That means I need to avoid foods with the whole grain, seeds, nuts (which I’m already allergic to), and other foods I know I’m allergic to. No cucumbers, no seedy tomatoes, no strawberries or raspberries or blackberries. It will trigger severe digestive upset, and that will also trigger full body flare-up of pain. Controlling the diet has helped reduced the severity of my symptoms.
So like my daughter Gracie, I’m following a modified Feingold Diet. I’m also finding that if I reduce lactose in my diet, the flare-ups and digestive upset are reducing in severity. The more I know!
I’ve also found that yoga can help with some of the symptoms. I try to do yoga daily, but on days when I’m having a terribly bad flare-up the yoga can make it worse. Yoga in general, however, is a wonderful benefit for Fibromyalgia.
Heat therapy, hot showers, and water therapy (swimming) are also wonderful although admittedly not always as effective as I would like. Unfortunately, there’s no cure. What has helped the most is recognizing the symptoms and why I have them. Sometimes all you can do is treat the symptoms. I’ve actually found that I have less anxiety now knowing why I have all of these chronic problems, and I can address them as they occur, such as making sure I take good care of my eyes by keeping my prescription updated and wearing transition lenses. I avoid foods that will trigger eczema, since when the eczema flares up so do my pain symptoms.
Anyway. Common symptoms that you may have noticed over the years but not associated as belonging together because of the nature of Fibromyalgia being a disease that affects every major system of the body (not all of these symptoms will appear all at once or even in the same week but can be spread out AND most importantly not everyone will have all or even most of these symptoms, especially early on in the disease):
- Widespread Pain in joints and muscles
- Muscle Weakness
- Morning Stiffness
- Back Pain
- Chronic Fatigue Syndrome
- Vision Problems
- Nausea
- Sleep Disorders
- Urinary and Pelvic Problems
- Weight Gain and difficulty losing weight
- Dizziness
- Chronic Headaches (migraines and tension)
- Chronic Cold Symptoms
- Temperomandibular Joint Dysfunction Syndrome
- Multiple Chemical Sensitivity Syndromes
- “Fibrofog“: Cognitive or Memory Impairment
- Skin Complaints
- Chest Symptoms
- Anxiety
- Depression
- Dysmenorrhea
- Aggravating Factors
- Myofascial Pain Syndrome
- Muscle Twitches
- Memory Loss
- Weather Changes affecting flare-ups
- Troubles Breathing
- Asthma
- Food Allergies and Intolerances
- FIBROMYALGIA (Photo credit: *SHESHELL*)Seasonal and Contact Allergies
- Fainting feeling upon standing up from sitting position
- Digestive problems similar to Irritable Bowel Syndrome
- Irritable Bladder
- Swelling in the hands and feet
- Reduced tolerance for exercise and muscle pain after exercise
- Stiffness upon waking or after staying in one position for too long
- Sensory Processing Disorder
- Jaw and facial tenderness
- TMJ aka Temporomandibular Joint Disorder
- Tinnitus (ringing in the ears, and can be constant or can signify an oncoming or worsening flare-up)
- Hair Loss
- Numbness or tingling in extremities
- Injury “memory” (old injuries that are healed still cause “phantom” pain for no apparent reason)
- Barometric pressure changes affect body pain and headaches
- Sensitive to blood sugar levels and dehydration
- Compromised immune system: frequent illnesses and infections
You can see why, from this list of symptoms, people have a hard time understanding why Fibro is so serious. They don’t know about all of these different issues that affect daily life.
If you suffer from Fibro, one of my best pieces of advice is to keep a journal. A portion should be an activity journal and a portion should be a food journal. Keep track of how much sleep you’re getting, how much fluid you’re taking in, as well as the weather changes that occur around flare-ups. You’ll begin to notice patterns in your general health as well as what may trigger your flare-ups and makes them worse.
Talk to your doctor about getting to a Rheumatologist. For now, that’s what we have. We don’t have a Fibromatologist, but a Rheumatologist. Be a pain in the butt until you find one that will take you and listen to you. Arm yourself. Walk in with a full list of your symptoms and how long you’ve been feeling them. Write everything down so that you don’t forget everything. You have to go in sure of yourself. Be open to back and forth discussion, but make sure that you have a clear idea of your medical history.
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