Fibromyalgia

An In-Depth Guide to Fibromyalgia

An In-Depth Guide to Fibromyalgia

Imagine having flu-like symptoms for a year. Every day you endure the muscle aches, fatigue, headaches and brain fog that are characteristic symptoms of catching a virus or having a bacterial infection.

To make matters worse, the doctors tell you that nothing is wrong with you; it’s all in your head. Welcome to the world of fibromyalgia.

What is fibromyalgia?

Once thought of as a muscle or joint disorder, doctors and researchers are just now starting to realize that fibromyalgia is actually a disease that is related to the brain.

It involves the nerves and neurons triggering a pain response with no probable cause and,unfortunately,no clear cut cure.

Essentially, it’s like your brain tells your body that it is injured and in pain (such as when you touch something hot), but nothing has happened that would actually cause a pain response.

In addition, it never lets the pain go. It’s like the pain switch has been flipped to the ‘on’ position and never gets flipped back ‘off’.

What are the symptoms?

One troubling issue with fibromyalgia is that the symptoms present themselves differently in each person that has it.

This, of course, makes it all the more difficult to come up with an appropriate diagnosis.

That being said, there are some factors that do often present themselves in a majority of the people who have it.

Generally speaking, the most common symptom of fibromyalgia is pain. It is an all over the body type of hurt when there is no outward reason for this rather unpleasant and sometimes debilitating sensation.

Several sufferers refer to it as “feeling like I’ve been hit by a bus” or, as indicated above, having flu-like body aches; they reference having headaches, back aches and joint pain.

Another common symptom is fatigue.It’s a feeling of waking up in the morning and still being as tired as the moment you lied down.

It often also involves lying in bed and being unable to get restful slumber, or having insomnia.

Essentially, you lie around all day and don’t do a thing because you simply don’t have the energy to do anything that requires any effort.

Some people with fibromyalgia suffer from Irritable Bowel Syndrome (IBS) and others fight with depression and/or anxiety. There are reports of having a “brain fog” and not being able to think clearly.

What makes fibromyalgia so difficult to diagnose?

Although people have been suffering from this extremely painful and often debilitating disease for ages, it has only been the last few decades that have turned this “phantom disease” into a reality.

According to the US National Library of Medicine, National Institute of Health, criteria for fibromyalgia weren’teven established until 1990 so people were often misdiagnosed with some form of muscular rheumatism up to that point in time.

What are the criteria? The American College of Rheumatology has said that a person has to have widespread pain of moderate to severe intensity for three months or more and there can be no other medical explanation for the pain.

Because this condition is still relatively new to the medical field, there isa lot of questions as to whether today’s doctors are still missing the mark with a proper diagnosis in the patients that have it.

An In-Depth Guide to Fibromyalgia

It even prompted Dr. Oz, from The Dr. Oz Show, to run a special on it titled: The Disease Your Doctor May Miss: Fibromyalgia.

In this three-part series posted on the show’s website, Dr. Oz speaks with Dr. Jennifer Caudle and Dr. Sean Mackey, Chief of Pain Management at Stanford School of Medicine.

They discuss fibromyalgia in its entirety; from causes and symptoms to how numerous doctors are failing to diagnose it correctly in their patients.

Dr. Oz states that it takes an average of three doctors’ visits to even get a diagnosis. And, some people (like his guest, Judy) wait a year or more. Why is it so difficult to identify?

According to Dr. Caudle, there are no real testing measures that can say that you have fibromyalgia.

While other diseases and conditions can be identified via blood tests or x-rays, for instance, there are no tangible tests that a person can undergo to say definitively that they have it.

It’s almost a disease by exclusion of any other plausible explanation of the symptoms one feels.

Who is most at risk?

According to the Centers for Disease Control and Prevention, it is estimated that 2% of the population have this condition (which equated to roughly 5 million people in 2008, which is the latest statistic that they offer).

And, while no one is free from the risk of fibromyalgia, certain people have a higher likelihood of a diagnosis than others.

For example, women have a much higher risk than men of being diagnosed with this disease. Experts range in their estimates on this matter, but most seem to believe that it is somewhere between 75% and 90% higher.

Also, there is question as to whether it runs in families so there is concern as to a possible genetic component.

As Dr. Caudle points out in the Dr. Oz interview, fibromyalgia can “co-exist with other medical conditions” such as rheumatoid arthritis and lupus, which may magnify the symptoms and increase the pain.

Although they don’t really know the causes of this condition, a person who undergoes a traumatic event has an elevated risk of developing fibromyalgia.

Dr. Mackey points out that people who are subjected to trauma, major injury or that have Post Traumatic Stress Disorder (PTSD) have a greater likelihood of the coming down with the disease.

It’s possible then that stress of the event triggers it and/or magnifies its symptoms.

What can you do if you have it?

So, what can you do if you have been diagnosed with fibromyalgia? Luckily, you have many options.

One of the most common is medication.Some people with this pain inducing disease take pain relievers and/or anti-inflammatory medications to help ease the symptoms.

While you can certainly get relief with both of these, they shouldn’t be counted on as a long term solution.

Taking a lot of medication over an extended period of time can be difficult on your body and create additional problems (such as with your stomach or kidneys).

Other options are therapy based, such as going to the chiropractor, getting massages, and acupuncture.

If you have medical insurance, it may pay for some or all of these forms of treatments.

If not, some businesses and organizations are willing to give their clients out of pocket rates, which may help you get the relief you need without breaking your pocketbook in the meantime.

What lifestyle adjustments can you make to ease the pain?

Although fibromyalgia is recognized as a ‘disease’, there are many things that you can do on your own to help ease the pain.

These are things that require no prescription of sorts, but rather taking care of your body.

First, you can make sure you get adequate sleep. If you’re staying up late at night only to get up super early in the morning, night after night, you’re going to feel worse.

Even someone without fibromyalgia is going to feel the effects after time, so it only goes to reason that this type of lifestyle can aggravate any medical condition you may have.

An In-Depth Guide to Fibromyalgia

What can you do to make sleep come easier?

  • Go to bed and get up at the same time every day
  • Darken your sleeping quarters as much as possible; especially if you work nights and have to sleep during daylight hours
  • Turn the alarm clock display away from your head so that the light doesn’t interfere with your body’s natural desire to sleep
  • Avoid the computer or video games within 2-3 hours of bedtime
  • Keep the television in your bedroom off when you’re trying to fall asleep
  • Have a warm glass of milk or chamomile tea just prior to bedtime
  • Take a long, relaxing bath with nice, slow music
  • Meditate to clear your head of any of the day’s happenings
  • Turn off your cell phone or any other media that automatically alerts you of incoming messages

All of these things will help slow your body and mind down so that it welcomes the recommended 7-9 hours of slumber.

Try to avoid taking sleep medications on a regular basis as your body will learn to rely on them and make natural sleep harder.

Another lifestyle change you can make is to become more active. It may seem harder than ever to increase your physical activity when you’re feeling extremely tired and fatigued all of the time, but research studies have found time and time again that exercise has a very positive effect for fibromyalgia sufferers.

Here are some great low-impact options that will keep your body busy and alleviate some pain:

Walking Do it in the morning and you’ll start the day refreshed; do it at night and you can walk off some of the stress that the day has brought on.

Bicycling Whether you are on a stationary bicycle in a spinning class or take your two-wheeler out on some local trails, this exercise will tax your legs in a way that is good for them.

Plus, it is easier on your knees if you experience a tremendous amount of pain in those particular joints.

Dancing Slow dancing or ballroom dancing can help you work up a sweat even though they traditionally aren’t super intense.

Also, you use a lot of muscle to stay in good form. This will keep you toned and taut and your body will have an easier time overcoming the symptoms that fibromyalgia typically brings about.

Yoga Performing this age old exercise technique is not only good for your body, but it is also great for your mind.

It helps you relieve stress, which is great since traumatic events (that are usually laden with stress) are one of the possible causes of this very painful disease.

Gardening Most people think of gardening as a relaxing activity, but it is also very beneficial to your health. It keeps your joints and muscles limber and you get to enjoy some fresh air in the process.

Of course, you can do pretty much anything as long as it keeps your body moving and isn’t too hard on you.

You certainly don’t have to train to win an Iron Man or Woman competition to get some relief from the pain (nor should you).

Additionally, if you have a physically demanding job, you may want to reconsider it.

Your constant movement could be making your symptoms worse and be putting you through much more suffering than if you worked a less taxing job, such as in an office setting or as a teller or checkout clerk.

Another consideration is to make dietary changes. In his interview with Dr. Oz, Dr. Mackey points out that while no food really triggers fibromyalgia symptoms, people often find a lot of relief when they focus on eating healthy, nutritious foods.

Some great dietary advice that will help with fibromyalgia includes:

Eating a lot of fruit and vegetables. The key here is to choose foods from a wide variety of color hues. Go for oranges, reds, blues and greens as each one has their own nutrients and the more you get, the better off you are. Aim for 5-9 servings a day.

(As fruit is higher in calories and natural sugars, you may want to limit your consumption and try to get more veggies instead.)

Getting enough whole grains. A lot of people believe that carbohydrates are the enemy and avoid them at all cost.

However, not all carbs are bad. When you eat complex carbs (like whole wheat bread, barley, oats, and such), your body gets much needed energy in a way that doesn’t induce a blood sugar spike like not-so-good carbs (such as candy, cakes, desserts, chips, and crackers).

Consume lean protein. Part of eating a healthy diet includes choosing proteins that aren’t high in saturated or trans fat.

Options that meet this criteria include eggs, lean beef or pork, chicken, turkey and seafood.

If you pick fish like tuna and salmon, you’ll also give your body a healthy dose of Omega-3 fatty acids which are very good for your heart.

Essentially, you need to pay attention to how foods make you feel. It is recommended that you keep a food diary for 1-2 weeks and note if you feel better or worse after consuming certain foods.

If you believe that a certain food is making you feel ill, try eliminating it for a few weeks and see if you notice a difference.

Also, as fibromyalgia is thought to be stress or trauma induced, it is very important to relax your body as often as possible. Make it a priority to relieve your stress and let your body rejuvenate itself.

An In-Depth Guide to Fibromyalgia

Some things that can help you relax and ultimately deal with life’s ups and downs are:

  • Practicing regular meditation
  • Undergoing counseling or therapy
  • Talking with a close friend
  • Listening to soothing music
  • Engaging in a hobby that brings you joy
  • Enjoying quality time with family and friends
  • Surrounding yourself with positive people
  • Signing up for motivational emails or updates from uplifting social media profiles
  • Sitting outside and just watching nature
  • Getting a massage

Basically, anything that brings you joy and takes your mind off your problems will benefit you.

It will give you a break from reality and let you smile and laugh, which helps your spirit just as much as it does your body.

Finally, as Dr. Caudle recommends via her interview with Dr. Oz, get a doctor you feel comfortable with.

As fibromyalgia is often misdiagnosed or under diagnosed, it’s very important that you have a doctor who recognizes it and is willing to help you treat it.

If you feel horrible yet all the test results continue to come back negative, you can easily feel like you’re losing your mind.

And, if your doctor believes that you’re either a hypochondriac or just feeling the effects of stress, then you’ll spend a lot of time wondering what is wrong with you – all the while not getting the relief you desire and, quite frankly, deserve.

Therefore, it is important that you doctor with someone that you trust and someone who will give you a proper diagnosis. You need to be your own advocate and not stop until you get satisfactory answers.

In summary

Fibromyalgia is a very real condition that can cause a high level of pain to its sufferers. And, although it isn’t a lethal condition, it does interfere with your quality of life because of the pain and fatigue, which can be just as detrimental.

There are no known causes, but it has been found to be triggered by traumatic events and genetics may play some role as well.

It is more prominent in women than in men, and it can co-exist with other just as painful medical conditions such as arthritis and lupus.

Treatment of the symptoms ranges from medication and doctor involved therapy to lifestyle changes such as eating right, exercising and reducing stress.

Of course, sleep is an important factor as well, so you’ll want to make sure you don’t skimp in that area of your health regimen.

Also, make sure you doctor with someone you trust; someone who will help you deal with the pain. The sooner you get it under control, the sooner you can live a quality, happy life.

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11 Comments

  • I’ve had fibromyalgia for nearly 20 yrs now and the pain is undescribable but to look at me if i didn’t have my leg braces n crutches to look at youd think they are was nothing wrong,,,, i wish people would be more understanding of the pain thet we try so hard to hide ,,, its not easy being only 42 and having this illness for 20 yrs out them 40,,, but i still try to smile and laugh ,,,,,, it was very hard for my children too,, anyone going through this get as much help and advice as you can as i cant live with my little boy because of the illness ,,,,, and me not having a family hes in foster care ,,,it breaks my heart not seing him i love him so much but at least the foster carers are good to him n hes happy,,,,,,, doesn’t matter how gutted i am im older ,,,,as long as hes happy all i can do is ytr and get the right medication as my bodies used to my old medication so at the moment im on morphine but need higher dosage but i got a gud dr whos tying hard get my pain relief right ,bless her,,,

  • I have been suffering with fm for 27 years and each year seems to be getting worse. I have degenerated disc desease and osteoarthritis also. I was never depressed till the pain was unbearable and doctors telling me I am nuts. To walk is impossible, spasms so bad I use a walker now so I can sit down. Massage therapy is the only way to get my muscles to relax as painful as it is I can move more freely without spasms,and pain. I use heat and ice to get through the day and the worst days I do take medication. I do what I can when I can and pray every day for God to help doctors figure out and treat this fibromyalgia. I read so many relationships breaking up , unable to work, I worked till I was 40 and I would love to be able to work again yes even at the age of 57

  • I’ ve suffered with fibromyalgia since I was 22 yrs old. Drs. Thought I had RA and the test was negative. Then I was treated for chronic fatigue syndrome. Luckily, I had a doctor who knew I was sick and tried test after test to find why I was so tired and in so much pain. I worked 12 hour night shift as an RN and he finally told me I had to get off night shift or I would continue to get worse. I refused to quit working nights and sure enough for 10 more years my pain continued to get worse. In 2001 I switched to day shift but that made me worse. I wasn’t sleeping nights and my body was so tired I developed pneumonia and after being off work 3 weeks I got some better. As soon as I went back to work the pain, fatigue and brain fog only got worse. My doctor put me on Lyrica and magnesium and omega 3 and for a while I felt better. Then the symptoms came back with a vengeance only this time I had other problems and after a year and a half, and chronic shortness of breath, I was referred to a cardiologist. After several test I was diagnosed with Hashimotes disease. Now with 300mcg and Cytomel 0.5mcg I am feeling some better. This has been a 35yr. Battle and fighting depression has changed my life. I am not the outgoing smiling happy person I once was. I have become very outspoken with a temper and can go from nice to mean in 0-5 seconds. My doctors have tried everything to help me but it is an ongoing battle. No one understands unless they walk in our shoes. This is the first time I have spoken about my pain. I have hide my health issues because to look at me I am the perfect picture of health. I pray and cry begging God to guide me through this horrible disease of fibro and Hashimoto’s. Hopefully with increasing my synthroid I will soon get some better with the Hashimotes but the fibromyalgia has been a battle but with Gods help I will win this war. I pray for all of you with this disease because I know what you are going through. God Bless and help all
    Of us.

  • I meant to say I was taking synthroid 300mcg and Cytomel 0.5 mcg. I suggest anyone with fibromyalgia ask your physician to test you got thyroid antibiodies, TSH and free T 3 and Free T 4… You may have fibro and hypothyroidism. This is just a suggestion and may prevent you from getting hashimotis disease. Which is infection of the thyroid gland and no cure only treatment with many of the same symptomatic problems of fibromyalgia only worse.

  • My heart goes out to every body with this horrible disease it gets on my nerves got diagnosed this about 3 year ago and being male made it harder to accept however its hear to stay.

  • I can relate as well.I have had insomnia since I was a child so I know how much it intensifies a chronic pain illness.I also believe that a traumatic event in one’s life can be the cause of .Mine began after my father was murdered in 1994.Before that , I was extremely healthy. God bless all you fellow sufferers reading this.

  • 4 years ago I found out that this terrible thing they call Fibromyalgia was going to be part of my life. Things have changed so much. I hadn’t been on any pills until I became ill with a bacteria infection in my intestines and also found out that I have IBS and disk diesease and several issuses with my stomach I started taking morphine in Oct last year and last weekend I started to feel ill to my stomach and didn’t get better as Monday came I was in terrible pain. Was taken to the hospital via ambulance and found a blockage in small intestine and had to be admitted but as many of u know they change ur meds while in the hospital so all my meds for fibro was taken away and I was only getting IV pain meds and of course no sleep cause of the lovely hospital beds. So for the long rant but sure wish there could be a cure. But one day at a time and slowly trying to get back on my feet as much as I can.

  • I have met many men who have Fibro over the years. If you can find a Fibro support group in your area, you will meet men, women and even some children who have Fibro and it’s related diseases. Also the more you learn about it, the easier it is to deal with it. I’m one of those people who has had Fibro for so long that my doctors had to learn from treating people like me–when Fibro wasn’t excepted by doctors or anyone for that matter and we were made to feel it was all in our heads. I went 5 years of doctor’s visits before finding my own diagnosis in a paperback book I saw in a bookstore’s window as I walked by. I took the book to a doctor and he learned from it, too. That was back in 1994. I had started having symptoms in 1985 and it just kept getting worse. Finally, a doctor sent me to a pain management doctor and I found a support group for Fibro and took a copy of every paper, pamphlet and article they had on the problem. We learned about it together and he was a big help. I took my poor husband to the meetings and it was then that he started understanding that it wasn’t just me. We met some men with Fibro. then. That was back before it was called Fibromyalgia then and it was just a series of symptoms. My husband heard the stories and realized that this was a real thing. It helps to know other people who also have Fibro and other Chronic Pain Diseases. I have had this for at least 30+ years now and I also have CFiDS, OA and IBS. We work around it and try not to make plans that can’t be cancelled. I take a pain med and muscle relaxer. I will tell you, Dave, what has really helped me. I take vitamins, of course, but when I started taking a combo of MSM, a good quality of Cal-Mag, Glucosmine and CoQ10, the pain started getting easier to control. I still get bad headaches, but I try to “head them off” early enough to get them under control so I don’t have to get any more spinal shots or pain shots I used to have to get when the headaches were horrible and lasted for days and even weeks at a time. I STOP and take my meds. no matter what I am doing and don’t put off taking them until I sit down or relax. When my body says, “No more, idiot”, if I don’t stop and quit, go home or whatever, I pay big time for days. I know how men, and many women like I used to be, want to work through the pain or get past it, but don’t ever do that. Train the people you love and who love you to accept that you aren’t that person anymore. You can’t afford to be. It took my grown sons several years to accept that I wasn’t going to get better and that I couldn’t help that I wasn’t the spitfire “volunteer mom” who could work a full day and still keep going. It bothered them a lot that I (in their words) “was different” and not the mom that helped them though school, was one of the first women “Assistant Scoutmasters”, went to their plays in Jr. High and High School, supported whatever they were doing, etc. They both graduated high school and went to college just as my body said, “No more” very loudly. From then on it was very difficult for a lot of years. It still would be if I kept trying to do the things my body said no to. That’s part of my story. There isn’t a miracle cure yet so all you can do is educate people around you. My husband has a male co-worker who works in the cubicle in back of him and my husband has been able to be a support to him..especially when I’m having a bad day(s) and he knows that his co-worker will need extra support that day. Please know that you are not alone, Dave.

  • Rebecca, I have had muscle spasm problems for about 25 years now. I take a muscle relaxer to help with that, but our new doctor is making noise about taking me off the them now that I’m in my mid-60’s. I take pain meds. when I have to. I’m trying to figure out what they are planning to do about the muscle spasms if they take me off of the med. I won’t let myself get depressed because that is letting the Fibro. win. I pray to God that He lets me be the winner over these diseases and He and my angels are stronger than the pain and the bad stuff the thoughts keep forcing on you. I make it one day at a time. My fibro and CFIDS are classified as serious to severe, but each day that I can control them is a day that I WIN! I was 39 when I had to stop working and our boys were active, busy teenagers by then and asked me to stay home anyway. It worked out just right because I asked God to help me get through it and was stubborn enough to not give in. Everyone is different in what they can take and what they have to deal with. Remember the prayer about accepting what you cannot change, change the things you can and the wisdom to know the difference. That prayer is perfect for Fibromites like us. I pray for that wisdom and have stopped wishing I was able to do what I did when I was young. I’m really hoping that we get a cure in our lifetime. That would be wonderful for the millions of us who live with Fibro, but none of us are the same people who we were. We have the wisdom that hard days have brought to us, the understanding that we weren’t able to have before because we didn’t have the life experiences we have now, the patience we have now to get through each day and then to look behind us and see how strong we were to get through past days. Take each day and go for the victory of getting through that day without the Fibro taking you down. You and I have had decades of getting though each day and we are the winners–not our health problems! Smile every day when you realize that you can get though any tough day because you have done it many times. I always try to remember during those bad days that there is a reason that God has let me, and helped me, to get through each day and that though it really sucks, there are a lot of people who are having a tougher time than me that day. Every day I was negative or felt sorry for myself (and I still do sometimes) the pain is a lot worse. Keep an eye on that and see if that is true for you, too. For me, that is just giving in to the pain. Find stuff to laugh at online. Laughing and positive feelings seem to help me when I allow the negatives to come to the surface. Just try it when you have bad days. There are a lot more relationships that change and get stronger and more mature than there are those who break up. My two younger sisters also have Fibro and still have their husbands like I do. We just taught the BIL’s what support looked like and not to be selfish like they were being. The way I look at it is that those relationships that break up weren’t based on the right foundation anyway. The vows said, “For better or for worse” and you cannot control which of you is going to have a “worse” and life has to change. No one needs a selfish mate or fairweather friends when you have to deal with the Fibro, too. There are always people out there who are understanding, good people who want to be in a Fibromite’s life.

  • Jullie, all we can keep telling ourselves is that one day there will be either a cure or a way to successfully treat this. It happened with some types of MS and it will happen for those of us with Fibro., Arthritis and all of the other things that go along with them. Until then, we live our lives and just fight on every day. I hope that you get back to your version of “normal” soon. I have IBS, too. What a pain that disease can be at times, huh? I don’t know if it will help you or not, but my IBS has gotten a little better over the last couple of decades, but wow I have to be careful what I eat and when. Turns out that I can’t digest dairy foods at all and that I have the same problem with wheat and some other grains. I’ve had to give up a lot of foods–some for good and some for when my IBS is acting up. Most of the time that works, but not if I ignore the triggers. Stress also is a big trigger for my IBS. I have really had to learn to cool it and not let myself get stressed very much, but it does happen and I do pay for that in many ways. You’ll get back on your feet soon. 🙂

  • Keep up the fight, Julie Anne. Every day that you live, you are a winner and your problems aren’t. I’m sorry about you not being able to have your son living with you, but I’ll bet he grows into someone who will have a lot of compassion and love for others. Our kids learn from us about strength and love. Your laughing and smiling is what he is going to remember when he is an older adult, not your braces and crutches. What makes you their mother is what your children will take from you. You teach them about your diseases so they will learn and be nice to others who have challenges, but make sure your children know that the disease isn’t who you are. You sound like a wonderful,, strong mother and person. I’ve been fighting this fight for over 30 years and I know I’m not as strong as I used to be, but I’m older, too. Stay positive. It was hard on my teenage boys when my diseases started getting bad and we had no idea what was happening to me. They didn’t understand and believe me, neither did my husband and I and we were scared. As the test results came back each time over 5 years of tests, we were happy that I didn’t have any of those serious life-threatening diseases, but didn’t have any reasons as to what it was over 30 years ago or what it would do to me. Now, the way I function is that every day that has less pain or less fatigue is a day that is a really good day. I’ve had to give up so many things that I enjoyed that I enjoy the things I have found to do more enjoyable. Each of those days is great. I sure didn’t see great days years ago in the same way I do now, but they became good enough and I started to change my thinking about what is good and positive. What I would like a researcher to find first is something to take away that fire pain inside my skin while the outside of my skin is ice cold. It sure makes it hard to know if I should use hot or cold to treat pain. Besides it is just wierd-feeling and hard to describe. The aches of having the flu is the only thing we can find to try to describe it, but no one can understand it unless they have felt it. I can feel okay one minute and then it just comes on suddenly. That gives me an idea for a post….

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