Light & Noise Sensitivity in Fibromyalgia Patients

Light and noise sensitivity is something that doctors and researchers have closely linked to fibromyalgia since the early 1990s when medicine started to recognize it as a real condition. However, despite its recognition, it is one of those fibro symptoms that are not priority on the long list of fibromyalgia symptoms that most of us experience.

If this is one of the symptoms you experience and that your doctor seems to downsize, you are not alone. Light and noise sensitivity in fibro patients have been scientifically known for quite some time but there is no real treatment option to help patients deal with this issue.

Some mornings, I am not affected by noise and sound and other mornings it feels like I have been run over by a monster truck. I have pain, nausea, dizziness, trembling and extreme sensitively to noise, light and even smell. No one really knows what causes light and noise sensitivity which is often called “generalized hypervigilance.”

There is not a lot of information out there about generalized hypervigilance or, at least, information that makes sense for us lay people, and most the information and research is directed towards the medical community. Basically, it is the amplification of sensation so it does not just apply to just noise and light. Those of us with this condition are oversensitive to external stimulation and preoccupied with pain sensation. There was a research study that compared fibromyalgia, rheumatoid arthritis and chronic pain patients. Of all three groups, the fibromyalgia patients were least tolerant and most sensitive to stimuli.

Common symptoms of generalized hypervigilance include anxiety, rapid heartbeat, trembling, rapid and labored breathing, sweating, irritability, fatigue, sleep disturbances and of course, sensitively to light, noise and even smell. Because there is not a lot of information out there, there is really no specific treatment for this symptom of fibromyalgia. Some natural supplements for anxiety and stress can help to deal with this symptom. Patients may also benefit from massage or acupuncture.

Some things you can do ease light and noise sensitivity include:
• Wearing sunglasses when you are outside
• Staying away from fluorescent lights if possible or wearing tinted sunglasses in that environment
• Wearing ear plugs in noisy environments
• Deep breathing and relaxation techniques during these episodes
• Explain the issue to family and friends so that they can be considerate in turning down the volume or turning lights off when you have these types of episodes.
• Adjust your computer screen if it is too bright.

What’s the most ridiculous thing you’ve heard about your arthritis condition?

In the first year after rheumatoid arthritis came into my life, I quickly got tired of hearing people downplay RA as “just” arthritis. Here I was struggling with this new diagnosis and I was in a lot of pain because I had not yet found a treatment plan that worked for me, and what I was going through was being minimized as “just” arthritis. I would hear things such as “we all get arthritis as we get older,” and “well let’s face it, you are getting older.” My favorite comment was “we all get arthritis eventually and we all suck it up.” Seriously, I was 32 when I was diagnosed. If I was 50, those words “may” have made some sense to me but I was in my early 30s and I had been diagnosed with a destructive and debilitating form of arthritis.

Hearing “it’s just arthritis” didn’t really help and even osteoarthritis can be pretty painful so to that something is “just” simple doesn’t minimize what the sufferer is going though. Even so, arthritis from age and wear is tear is osteoarthritis. Further, osteoarthritis is much different than RA which is an autoimmune disease. Not to downplay lupus, but if I told people I had lupus, I would most likely get more sympathy. However, RA was “just” arthritis and as a result, it seemed no one could understand my need for understanding and sympathy. I found myself constantly explaining the difference between osteoarthritis and RA and I also found it ignorant that people would downplay the significance or pain associated with osteoarthritis. Unless you have lived with this a disease, you have no way of knowing its effect on the sufferer and even if you have, you only know how the disease affects you.

Every day, doctors learn more about RA and autoimmune diseases. Also, new treatments are popping up every day and these medications continue to help people living with RA to have normal lives. I know that there is hope despite RA and the years have taught me quite well that RA isn’t “just” arthritis. That statement no longer bothers and I no longer feel the need to have to explain my disease to anyone. RA is a part of my life but it no longer dictates it.

What’s the most ridiculous thing you’ve heard about your arthritis condition?

What did it take for you to get a fibromyalgia diagnosis?

Fibromyalgia take about three to five years on average to be diagnosed and most patients endure a long and difficult journey in the process. There are many factors to contribute to this delay including the fact that the only indicator that something is wrong is pain and symptoms that go undetected in blood work and other exams. A fibromyalgia diagnosis is usually based on a patient’s description of pain and other symptoms.

Fibromyalgia is a diagnosis that involves a process of elimination. In other words, a good doctor eliminates all other possible causes of your pain, sleep issues and other symptoms before a fibromyalgia diagnosis cannot be made. Depression is common misdiagnosis because the symptoms such as poor sleep, depressed moods and prolonged body pain.

Another roadblock that doctors and patients come across when trying to look for possible diagnosis is that fibromyalgia has many symptoms that can apply to other conditions. You can have symptoms such as dry eyes, irritable bowel issues, migraine and extreme fatigue. Further, pain is not localized, it is everywhere. Fibromyalgia symptoms can overlap with those of other conditions. For example, if you have rheumatoid arthritis and fibromyalgia, it can be difficult for your doctor to determine what condition is causing your symptoms.

The last factor as to why fibromyalgia is often misdiagnosed is that most physicians have little experience with it. There are many people, including doctors, who believe that the condition is in a patient’s head and discount the real pain that a patient is having. Many doctors consider fibromyalgia “psychosomatic.” This basically means that the mind causes the body to respond a certain way to non-existent stimuli. They believe this because there are no real tests to prove fibromyalgia and most tests come back normal for fibromyalgia patients. For those trying to finding a diagnosis, this can be a very frustrating process.

As a fibromyalgia sufferer, you know that a fibro diagnosis isn’t an easy one to get. Each one of us has a long journey towards diagnosis.


Is there a cure for arthritis?

The number of persons affected by arthritis is going up and this number is going to continue to climb because the baby boomer generation is aging. Recent numbers indicate that over 21 percent of adults (1 in 5) reported being diagnosed with osteoarthritis or another arthritis related condition such as rheumatoid arthritis.

It can be very tempting for newly diagnosed patients to listen and consider unsubstantiated claims regarding various supplements, water treatments, diets, and other non-traditional treatments that promise a “cure” for arthritis. The fact is – there is no cure for arthritis and the key to management of arthritis symptoms is control. The Centers for Disease Control and Prevention report: “It is important to keep in mind that there are many forms of arthritis, and a specific diagnosis of the type you have may help to direct the proper treatment. Although there is no cure for most types of arthritis, early diagnosis and appropriate management are important, especially for inflammatory types of arthritis.”

Disease modifying drugs and biologic agents used for autoimmune arthritis conditions affect the course of the disease. Therefore, early diagnosis and proper treatment makes a difference in pain levels and joint damage.

Remission is not a cure because the disease is not gone. A cure would leave the patient with no symptoms at all and no need for further treatment. Remission, in particular, as it relates to rheumatoid arthritis and other autoimmune arthritis forms, is defined by the American College of Rheumatology as morning stiffness that lasts less than 15 minutes, no fatigue, no joint pain, no joint tenderness or any range of motion pain, or swelling in the joints. Moreover, ESR rates (measures of inflammation) less than or equal to 30 in women and 20 in men are also indicators of remission. Only 5% of those in remission discontinue medications but the rest have to stay on medication in order to stay in remission.

As far as osteoarthritis goes, it is the most common type of arthritis and it affects 27 million Americans. That high number, without a doubt, indicates that there is NO cure for osteoarthritis. It is a chronic disease which means it will get worse over time and right now, management of the disease is the only option. Research has also indicated that there may be ways to slow down the progression of osteoarthritis and researchers are starting to look at disease modifying drugs but until such time that these types of medications are available, OA patients must manage their diseases through healthy living and lifestyle management.

The Internet as a Resource and the Mistake of Self-Diagnosis

We have all been guilty of this but the truth is, self-diagnosis is a bad idea. It does not even matter what website you are using. WebMD or National Institutes for Health – don’t do it! First, it is not easy as it seems and it can lead to incorrect conclusions. Feel free to research your symptoms but leave the diagnosing to the doctors.

Think about it this way – if you want to know the highest mountain in North America, the internet is a great resource but if you dealing with constant head pain, the internet won’t help you. There was recent Twitter based survey that asked people where they get their healthcare advice. You won’t believe this but 54% of respondents said that they use the internet as their primary source of health advice. Is diagnosing yourself really that good of an idea?

As someone who struggled with chronic illness for many years, I do believe in the getting the most accurate care when you are sick. However, the self-diagnosis/do-it-yourself approach doesn’t do it for me. If you are actually thinking about trying the whole do it yourself thing, consider the following:

• If you want right answers, ask the right questions. If you are dealing with constant head pain, don’t spend your day research aneurysms because that is the only possible conclusion you can come to. For all you know, your doctor will diagnose those headaches as migraines and in the meantime, you have driven yourself crazy with this so make sure you get your facts straight.

• Consider the source. Are you reading a research article from medical journal or are you reading something that a company has posted for its own agenda?  As you know there plenty of people out there that practice snake oil sales and the internet has plenty of those kind of sales people waiting for you to fall for their so called cures and diagnoses. As I tell my kids, just because it is on the internet doesn’t mean it is true.

• If it is on the web, it is not about you. The internet can be an educational source but what you are reading doesn’t apply to you, your medical history, family medical history and your specific circumstance. I am a firm believer in learning all you can about your condition but it is important to understand that what you read doesn’t necessarily apply to your unique situation.

• Look for information that is up to date. As you know, the field of medicine is constantly changing and advancing. It changes year by year so check to see when the information was published. If it is an old resource, look to see if you can find an updated version or another more timely reference.

• Avoid the self-diagnosis. Think about the self-fulfilling prophecy in a psychological setting. If you believe something, your behavior will lead it to appear true. In this case, you are likely to influence yourself into self-diagnosis because of the knowledge that you have about the experience or something you are afraid of. For example, if you have a family history of heart attacks, you are more likely to notice chest pain or even think you are having a heart attack simply because it is something that worries you.

The bottom line – it is okay to use the internet as a resource but be smart about it. Don’t stop with what you are reading and follow up with your doctor about what is ailing you.


Chronic Illness Tip: Make Job modifications

If you want to keep working full or part time, you have to stay physically and mentally able to continue to manage your job responsibilities.  To avoid stress and anxiety, you need to allow yourself more time during the day to get your responsibilities done.  Speak with your employer about a flexible schedule that would allow you to come in later or leave later. Or you could ask if you could work from home two or more mornings a week so that you can get more rest.  Another way you can help yourself is to take a nap during your lunch hour to minimize fatigue and give you more energy.  Whatever plans you make to modify your job situation, it is better not to put this off. To accommodate chronic illness in your work life, you need to work to budget time, create and follow to-do lists, and limit outside and personal commitments on workdays.

Consider writing a letter to yourself

One of things that the majority of us living with chronic illnesses like fibromyalgia and rheumatoid have is this tendency to feel self-doubt. I mean, who wouldn’t? We live with pain daily and our conditions are unpredictable. Chronic conditions forces us to feel frustration about life, the issues that they bring into our lives, and about the future.

I have found, from my own experience and the experiences of others, that those us who are willing to help others and give good advice are often hesitant to help themselves. I think it is because it is easier to see someone’s situation and implore them to take action than it is to accept what is personally and emotionally affecting one’s self. However, it is not a good idea to shortchange ourselves.

So here is my suggestion to you. If you could write a letter to yourself, what would you tell yourself to change or improve about yourself? Imagine as you are writing this, you are your own best friend and you are offering yourself support and encouragement. What would you tell yourself to improve your quality of life as you live with your chronic illness or illnesses? As your own best friend -What things would you tell yourself that you like about yourself and what good qualities would you ask yourself to focus on?

If you want to go further, put this letter in the mail and send to yourself and when you get it, keep it as a reminder when you feel bogged down and frustrated by the things that chronic pain and illness have brought to your life.

Winter Months and Fibromyalgia

For many of us with chronic conditions such as fibromyalgia, the wintertime blues is a fact of life. A stormy sky or a sunny day can affect and impact you mood and your ability to get outdoors. Rainy and windy weather can exacerbate pain and other symptoms. Winter is fast approaching and many of us with fibromyalgia wonder if there is anything we can do to avoid getting the wintertime blues.

There are many things you can to keep your fibro symptoms down and your mood up. Consider some of the following suggestions from the National Fibromyalgia Association.

• A sun box or full spectrum lighting in your room can help to boost your mood and your vitamin intake. A timer to turn on the lights before your alarm goes off can help you to awake to a bright room rather than a dark one.

• Staying warm in the winter months will help you to manage pain. A heating mattress, heating pad or electric blanket can help you to stay warm. You can even take a heating pad to work with you or get yourself a portable heater to keep in your work area. Warm baths and showers, hot tubs, extra layers of clothing, gloves, hats, and socks can help to keep you warm at home.

• Watching your weight during the winter months is as equally important as keeping your body warm. During the winter months, many people crave comfort foods, sweets and fatty foods. A change in diet and decreased activity levels leads to weight gain.

• It is also important to stay active the winter months. As you know, exercise is the best way to minimize fibromyalgia symptoms. Most fibro patients have found walking to be the most gentle of exercises but in the winter months, you really don’t want to be out walking in cold and damp weather. Find yourself an exercise regimen you can do at home (such as yoga or Pilates), sign up for a tai chi class, or go to an indoor poor, etc.

• Consider alternative therapies to deal with the increased pain such as massage or physical therapy. Invest in a hand held massager, massage chair cover or an actual massage chair. This is something you can use all year round. If your winter symptoms are debilitating, discuss physical therapy or chiropractic massage options with your doctor.

Now that we are in the winter months, we are all quite aware of the increase in our fibro symptoms, and if you are like me (I also have RA), you expect an increase in symptoms for a second chronic condition. Do you generally see an increase in your fibro symptoms during the winter months? Do you become depressed? What things do you do to keep flare-ups and depressed feelings away or to a minimum? How you plan on remaining active during the winter months?

Did you know that rheumatoid arthritis patients have an increased risk for heart disease?

Research has revealed that rheumatoid arthritis patients have a much higher risk of early death as a result of cardiovascular disease. Researchers at the Mayo Clinic have concluded from various studies that people with RA have a greater risk of heart disease than the rest of the population. Further, they are more prone to silent unrecognized heart attacks and more sudden cardiac deaths. (Sudden cardiac arrest (SCA) is a condition in which the heart suddenly and unexpectedly stops beating. If this happens, blood stops flowing to the brain and other vital organs. SCA usually causes death if it’s not treated within minutes – National Heart, Lung, and Blood Institute.) Moreover, RA patients are much less likely to have chest pain complaints.

Increased Risk Even Before Diagnosis

The Mayo Clinic research also recognized the increased heart disease risk even before patients receive an RA diagnosis. Up to two years prior to diagnosis, RA patients were: (1) three times more likely to have been hospitalized after an acute heart attack: (2) less likely to have a history of chest pains; and (3) five times more likely to have unrecognized heart attacks and sudden cardiac death. Once diagnosed, patients were twice as likely to have unrecognized heart attacks and sudden cardiac death.

Things to Be Aware Of

Mayo Clinic researchers have determined three things that RA patients need to be aware of. First, the risk of heart attack already exists by the time an RA diagnosis is made. Next, heart disease can be silent in people with RA, making regular cardiac checks necessary in addition to lowering your other risks such as blood pressure, cholesterol and smoking. Last, in RA patients, sometimes the first evidence of a heart disease is sudden cardiac death.

Researchers believe RA patients have a higher risk for heart disease because of RA itself but also because of additional risk factors. The reason that RA plays a role is because systematic inflammation associated with RA promotes cardiovascular disease.

Be Vigilant

Researchers emphasize that RA patients must be aware that they have a higher risk for heart disease. Therefore, they must be vigilant about cardiac symptoms should they experience those and seek immediate medical attention. Further, RA patients should be aware of the role that pain medications used for joint pain play in the picture. Those who take painkillers may not recognize or feel chest pain in the way that those who do not take pain medication would. Therefore, cardiac checks are necessary in addition to diet and lifestyle changes.

Source: Mayo Clinic (2005, February 4). Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death.