10 things people need to know about fibromyalgia

I was recently diagnosed with fibromyalgia – a long-term condition that causes pain and stiffness all over the body, as well as also causing fatigue and problems with mental processes.

Before the diagnosis was suggested and I started researching it, I was one of the naïve people who thought management of fibromyalgia was fairly straightforward.

Little did I know about the debilitating nature of it. My attitude of just wanting to ‘get on with life’ is the worst way to think about it and I’m having to learn how to look after myself in a completely different way.

Here are some things I’ve learned about fibromyalgia.

1. An estimated 2.9% to 4.7% of the general population has fibromyalgia.

It is difficult to measure as it is possible there are people suffering without a diagnosis (primarily due to lack of knowledge and awareness about the illness).

2. It is a chronic widespread pain and fatigue disorder possibly triggered by a traumatic event, either physical or emotional, but sometimes the trigger cannot be identified.

3. Research has shown that pain is experienced due to decreased serotonin in the central nervous system and increased substance P in spinal fluid leading to disordered sensory processing.

4. Other symptoms such as lack of restorative sleep, profound fatigue, headaches and altered functioning of the bowel and central nervous system are linked but the cause is yet to be found.

5. For some people the symptoms are mild,and they can lead a fully functioning life managing their fibromyalgia in the background.

Others are highly debilitated by it and cannot partake in paid work or enjoy much of a social life.

6. Diagnosis is difficult because the symptoms are very similar to other conditions.

Patients will undergo a series of blood tests and scans etc to rule out other conditions and fibromyalgia is a ‘diagnosis of exclusion’ which means there’s no specific test that will come back as positive.

7. Some doctors have limited knowledge of fibromyalgia and inaccurate understanding of its origins, nature and management techniques.

Unfortunately, this has been my experience. You can ask your GP for a referral to a specialist clinic.

8. There is currently no cure – treatment can involve input from rheumatology, neurology, physiotherapy and psychology.

Some medications such as painkillers and anti-depressants are commonly used, also muscle relaxants, anti-convulsants and anti-psychotics can be used at times.

Engaging in a specialised exercise programme is an important part of management.

Anything to aid relaxation can help, and some people find complimentary therapies such as acupuncture, massage, manipulation and aromatherapy are useful.

9. Pacing is an important part of management.

I’m someone who doesn’t really know when to stop, I just keep going ignoring the pain and fatigue as best I can. But this has been shown to make the condition worse and harder to manage.

Learning to manage both emotional and physical stress is important and sufferers need to learn when to say ‘no’ and when to push themselves with planned rest periods.

10. The condition can stay stable, get worse or get better.

The important message is that with the right support it is possible manage fibromyalgia and be a survivor!

 

Me vs. Fibromyalgia: Part 9 — 15 Things to Know Once You’re Diagnosed with Chronic Pain

In 2007, the iPhone turned one year old, Fibromyalgia wasn’t recognized as an actual condition and David Hasselhoff got really drunk and tried to eat a cheeseburger on the floor while his daughter filmed him. Crazy stuff, huh? I mean, can you imagine trying to manage and treat 24/7 pain while even your doctor tells you there’s nothing wrong with you?

Painful and freaky things were happening to my body and there was very little public information and nowhere to find support. As someone who loves to do my own research, I felt completely unnerved and helpless by the void. I felt there was no way to prepare myself for what was to come.

I never expected to wear a neck brace and hand wraps or use wheelchair and a cane. There was a long period of time where I thought that this was going to be my new forever: not working, barely able to brush my teeth, unable to get dressed on my own, in constant pain, fatigued and plagued by nausea that would make anyone’s head spin. I was railroaded.

To continue to fill that void, and just as important as the 25 Things People with Fibromyalgia Want You to Know, here is a list of things that would have been helpful to know after first being diagnosed.

You are NOT crazy

Newsflash! The healthcare industry finally recognized Fibromyalgia as an actual condition in 2015. It’s real! It’s really, really REAL! I bet you have a list of people who you’d like to not-so-softly share this with, huh?

Knowing is better than not knowing
It’s normal to feel hopeless at first but advances in Chronic Pain medicine arehappening. If you know what you’re dealing with, you can begin treatment that’s right for you and get some relief.

You are NOT alone
Thanks to social media, we don’t need to rely solely on our friends and family for comfort. (This is hard for them too!) Thousands of supportive communities are right at our fingertips. For 24/7 virtual encouragement and info, search Facebook,Instagram and Twitter for helpful entities. For in-person gatherings, Meetup.com is amazing.

Be prepared
Ask your rheumatologists a lot of questions, make a list BEFORE each visit so you have everything covered. Ask to record the audio of your doctor’s recommendations so you can listen whenever you need. There’s so much to learn and it can be very overwhelming.

It’s a marathon not a sprint
Push the limits of your body, but sometimes let it win. This goes back to trusting yourself; surrender is not defeat.

Remember to breathe
If you feel panic coming on, try not to go into a catastrophic mindset. This can be a frequent challenge so I created a mantra: “It’s like this now but not forever.”

Listen to your body
Every patient is different and nobody knows your body better than you. Just because a doctor prescribed it, doesn’t mean you have to take it.

Keep moving
Light physical activity really does help. Physical therapy, occupational therapy, walking, etc… Don’t let your body freeze up.

Do your own research
There is more information than ever before on Fibro, Chronic Pain, Lupus and other invisible illnesses. You may want to explore these topics: traditional and alternative treatments, the best doctors in your area, natural remedies, new findings and of course, helpful blogs. *Wink*

Food matters
You’ll quickly learn how certain foods can make the pain worse. My trigger foods are spicy, dairy and sugar. If I indulge (and i do), my sleep for the night is ruined.

Phone notes
For easy access, I keep notes on my phone where I list all things Chronic Pain: those offending foods I mentioned, helpful tips and treatments I come across and any questions I have for my next doctor’s visit.

Get good sleep
A good night’s sleep can save your day, but miss an hour and you’re a slave to your day. Find out how many hours of sleep you need then do your best to keep on schedule. This is a BIG one!

Stay safe
According to government statistics, about 2 million Americans currently abuse or are dependent on legal opioids. Be aware and get educated so you can make the right decision for YOU.

Feeling super sensitive?
One cool thing about Fibromyalgia is that once diagnosed, you’re officially part Superhero! Part Spider Man to be exact; if you’ve noticed hypersensitivity to sound, smells, food and weather, those are just your new Spidey senses. You might want to pack a sweater from here on out.

Things are going to change
And very likely, the change could be permanent, but that doesn’t mean things can’t get better. There are warriors and there are victims, bring out your inner warrior!

I love reading your additions to my lists, please add them in the comments below!

If you find my blog helpful, supportive or empowering, I’d like to ask for your help. I’m humbled to be nominated for 5 WEGO Health #HAAwards for giving a voice to those who suffer in silence with invisible illness.

If it feels appropriate, would you please take 30 seconds to endorse me for Rookie of the Year?

5 Ways to Cope With Fibromyalgia Fatigue

Fatigue is one of the hallmark symptoms of Fibromyalgia, and it’s probably the symptoms that I personally struggle with the most. It’s is all encompassing and can quickly take over your life, leaving you little to no control. Fatigue is hard to understand, which is why people with Fibromyalgia are told to “just sleep more” or “push through it, you’ll be fine.” However, those things are impossible when you have fatigue because it isn’t cured by rest, and pushing through it generally only makes it worse. So how are you supposed to cope with fatigue when none of the usual methods are effective?

Allow yourself to rest periodically, even when you aren’t feeling fatigued at that moment

When you live with constant fatigue and it improves for a short time it’s a natural reaction to want to try to get everything done you couldn’t do before. You will feel better if you continue to take periodic rests throughout the day so your body isn’t overtaxed. You may even have to schedule your rest time so that you aren’t tempted to do something else.

Don’t try to push through it

Fatigue is not like tiredness, you can’t push through it without encountering consequences. Trying to push through fatigue only puts a strain on your body. Listen to your body’s limits. Set your own pace and stick to it. You will get pressure from other people to ignore your fatigue, but just say no. If you have a hard time telling people no you may want to practice your responses ahead of time so you are prepared.

Light Exercise

We all like to roll our eyes when doctors suggest exercise for Fibromyalgia, because they envision us doing high intensity workouts that are a pipe dream. However, gentle, light exercise can be very helpful for people with Fibromyalgia, even if it’s only a few minutes. Everyone’s body is different, and only you know what will work for you, but some light stretching and gentle yoga can really help with the physical pain and the mental strain that come with Fibromyalgia. Improving those can have an impact on levels of fatigue.

Choose your priorities

You’re not going to be able to do everything you want to do, so you have to prioritize what is the most important. I like to make lists of all the things I need to do and then I pick the top tasks that I think I’ll have energy for. Everything else I ignore because I know there isn’t anything I can do about it that day. I don’t dwell on the tasks I don’t have energy for because that would just suck out more energy. Overall, I tend to prioritize my family and friends over other tasks because that’s what is the most important to me, but my list changes day by day.

This looks different for everyone. I love to read a good book, spend some time coloring, or going outside and enjoying nature. You need to find what rejuvenates you and makes you feel peaceful and fulfilled. As you take care of your mental health, it helps you to have better coping strategies when it comes to your physical health.

Unfortunately there is no magic answer to Fibromyalgia fatigue. It’s a frustrating symptom because it’s completely unpredictable. No matter how much you try to pace yourself and carefully control for it, fatigue often hits you out of nowhere. However, I’ve found that following these steps will make a small dent in the amount of fatigue I feel and helps my overall physical and mental well being.

DIFFERENCES BETWEEN FIBROMYALGIA AND RHEUMATOID ARTHRITIS!

Rheumatoid vs Fibromyalgia

Aches and pains are a part of life, especially as a person grows older. Pain can be caused by many different things besides bumping into something, including inflammation and swelling. These two causes can increase the pain felt in sore muscles, and also prolong the duration that these will last. Strenuous activity or even sitting or standing for extended periods of time can cause inflammation and swelling to become severe enough that they cause pain, sometimes extreme pain. When this pain is concentrated in the joints and bones, pain can become debilitating.While there is no cure for rheumatoid arthritis or for fibromyalgia, sufferers should begin treatment as soon as they have a diagnosis. Treatment can keep other ailments from developing, such as fibromyalgia.

Sufferers of rheumatoid arthritis have a much higher incidence of developing fibromyalgia although fibromyalgia can develop on its own, without rheumatoid arthritis being present. The symptoms are very similar, so if someone has rheumatoid arthritis, they may miss the signs of fibromyalgia as it develops.

Symptoms of Rheumatoid Arthritis.

RA Hands

∼One of the symptoms of rheumatoid arthritis is swelling and inflammation. This can create pressure on joints. After time, this pressure can actually damage the joints that are affected. The problems that rheumatoid arthritis creates continually gradually, flaring up, and then subsiding. Stiffness of the joints and a lack of ease of mobility are two other symptoms.

∼Redness around the joints, and being warmer than surrounding skin, as well as tenderness to the touch can point to rheumatoid arthritis, as well. With rheumatoid arthritis, when one side of the body is affected, such as the right elbow, the left elbow is usually affected.

∼Rheumatoid arthritis can also cause problems with the formation of the joints, altering them so that walking and other activities are painful, or even impossible. There is no cure for rheumatoid arthritis, but with early treatment, the disease’s progression can be slowed, and symptoms minimized.

∼Testing can be done with a blood draw, and four out of five people who have rheumatoid arthritis will show that they have a substance in their blood called the Rheumatoid Factor. If the test is negative, a diagnosis can be made from other symptoms.∼

Treatment for Rheumatoid Arthritis

treatments for Fibromyalgia

Treatment for rheumatoid arthritis can include NSAIDS, such as aspirin or stronger medications, different types of inhibitors and depletors, immune suppressants, and steroids. Treatment depends on the stage that the disease was in when a diagnosis is made, and the severity of the symptoms.

Physical therapy can also help keep joints more limber, and keep them from freezing up. At home, liniments can help a great deal in coping with the pain, and pressurized bandages and socks can help decrease swelling in joints.

Symptoms of Fibromyalgia

∼Fibromyalgia has many of the same symptoms, but there are a few differences. While both produce fatigue, fibromyalgia sufferers will have a much stronger sense of being tired and exhausted. One major difference between the two is that fibromyalgia does not produce joint swelling. Joints may hurt, but in rheumatoid arthritis, muscles are not generally affected.

∼In fibromyalgia, muscles are continually left feeling weak and painful. The pain is not symmetrical, as it is in rheumatoid arthritis, but can be experienced on only one side of the body. For example, someone with fibromyalgia might have a shoulder that is affected, while the other shoulder is normal.

∼Other symptoms that rule out rheumatoid arthritis are problems concentrating on tasks, constant fatigue, irritability, problems sleeping even when extremely tired, and moodiness. rheumatoid arthritis does not cause these symptoms. If these are present, chances are higher that the pain and soreness is caused by fibromyalgia instead of rheumatoid arthritis, or that an rheumatoid arthritis sufferer is developing fibromyalgia. Additional symptoms can include headaches, dizziness, TMJ pain, pelvic pain, bladder and bowel inconsistencies, and restless legs.

Treatment of Fibromyalgia

∼Fibromyalgia can be excruciatingly painful, and many sufferers of rheumatoid arthritis also have fibromyalgia, but they are not the only ones who can develop this disease. Like rheumatoid arthritis, diagnosis and early treatment are very important to slowing the disease’s progress, and fibromyalgia also has no cure.

∼Treatment can consist of three medications. These are the only ones approved for fibromyalgia. They are pregabalin, an anti-seizure medication, and duloxetine and milnacipran, which are anti-depressants. While people may think that the last two may not help much with pain, they actually work to relieve a great deal. This is because they work with the same neurotransmitters that tell the brain pain is being felt by the body. The first helps by allowing the muscles to relax and not be as tense.

∼If you are experiencing joint and muscle pain, it is always best to be examined by a physician as soon as possible. The diagnosis may be something you might not want to hear, but without it, it is impossible to begin treatment to protect your health.

Why Fibromyalgia Makes It Hard to Lose Weight

Whenever I’m asked about the subject of weight loss, I admit that it makes me sigh. I have so many conflicting feelings when it comes to this weighty (forgive me) topic! My own weight loss journey is full of twists and turns and I’m far from perfect. Striving for perfection in this area is an exercise in futility. Do you feel futile at times, too? If you have fibromyalgia, read on.  Perhaps you’ll discover just the right tip to get you started on your own healing process when it comes to weight loss.

As an author, speaker, and practitioner who specializes in helping others to heal from chronic illness, here’s the first problem I have with the subject of weight loss. Weight loss is a RESULT of healing. It’s a common side effect of a much more important goal – healing.

Therefore, I feel conflicted about addressing weight loss alone. It feels as if I’m putting emphasis on the cart and not the horse.

But, I get it. I have fibromyalgia, too. I once had overwhelming symptoms that included weight I wanted to release. I understand that when it comes to all of the symptoms of illness, excess weight (whether 5 pounds or 100+) is pretty hard to ignore.

My clients share their frustrations with me as well. They tell me that they’re:

  • Frustrated with how they feel.
  • Frustrated with how they look.
  • Frustrated with how they’re treated by others.
  • Frustrated at the “condescending” advice to lose weight from their doctors.
  • Frustrated with the added pressure on their joints, muscles, and bones.
  • Frustrated with comorbid experiences such as diabetes, digestive problems, cognitive dysfunction, hormone dysregulation, sleep disturbances, and more.

Have you expressed these frustrations, too? I sure did!

Where it began for me

I’ve mentioned before that when I first started my own health journey, I jumped in with both feet. I jumped with complete ignorance. I had no idea what to do, but I knew I had to do something. I was tired of the fibromyalgia pain, fatigue, confusion, frustration, and growing symptoms that plagued me.

So, I started with nutrition. I completely changed what I ate and removed processed and packaged foods from my diet. I had no experience with, and hadn’t even heard of, gluten free, dairy free, sugar free, grain free, or preservative free programs. I didn’t even understand the concept of clean eating and had never heard of food sensitivities or leaky gut.

All I did know is that I thought my doctor was wrong.

At that point, I still didn’t have an official fibromyalgia diagnosis. The doctor I’d seen dozens of times said he finally had an answer for me. He declared that high cholesterol was my entire problem and one more medication would “fix” me. I was already on more than two dozen medications and he wanted to add statins to the list.

I simply said, “Enough.”

I was going to prove that I could lower my cholesterol. And prove that I’d keep all of my symptoms.

As you know – I did prove it.

I proved I was right. And, I also proved I was very, very wrong. (Thank goodness!)

I did reduce my cholesterol numbers (a teensy weensy bit). And, no one was more surprised than I to find that my symptoms began to reduce … a LOT! I reduced my internal inflammation which resulted in less joint and muscle pain. I experienced better sleep, fewer gastric/intestinal problems and improved digestion. I could think more clearly. My hands and wrists stopped hurting. My teeth stopped hurting.

Oh … and I dropped a few pounds.

I lost about 15%
of my body weight.

This all took place in about four months. At that time, the weight part of this equation was a very big deal to me.

In my workshops and interviews, I often talk about my symptom reduction in my early healing process and go on to share the rest of my journey. But I don’t often talk about the weight. You see, I don’t want listeners to miss the big picture. The big picture is that I changed my entire life, and my future health, by changing my behaviors.

But I know that weight loss
is the elusive, bright,
shiny object we’re looking for.

Being overweight is a royal pain. I understand being in a place (both physically and emotionally) where it’s a central focus of worry. That’s why I decided to write about it here.

Of course, not every person with a fibromyalgia diagnosis experiences stubborn weight concerns. But those who have no weight issues are the minority. This article is for the majority. Here, we’ll look at the connections between fibromyalgia and stubborn weight loss.

I have clients confess their inability to drop pounds no matter what they do. And I know how that feels. While I’m not significantly overweight, I struggle with the same situation – carrying more weight than I’d like.

Next, we’ll discuss the circumstances, diagnoses, and behaviors that are linked to an inability to release weight.

Causes of weight loss resistance

I sat down to write a few main points on why we may find it difficult to release unwanted weight. I wasn’t surprised when a few points multiplied into many. I wanted to include them all since it’s important to look at as many pieces of the puzzle as possible. By looking at all of the pieces, we can begin to sort and arrange them into place, making our personalized health picture.

Here are more than two dozen reasons why you may have trouble with achieving your weight management goals:

  1. Medications (including antibiotics, steroids, antidepressants, etc.)
  2. Whole body inflammation
  3. Leaky gut syndrome / impaired digestion
  4. Food sensitivities
  5. Emotional traumas
  6. Chronic stress
  7. Other additional diagnoses including autoimmune conditions
  8. Macronutrient ratio imbalance (out of proportion ratio of healthy fats, healthy proteins, and fiber-rich veggies)
  9. Family/caregiver influences and pressures
  10. Blood sugar imbalances (insulin resistance / diabetes or pre-diabetes)
  11. Hormonal, thyroid, and/or adrenal imbalances
  12. Lack of sleep (or poor, non-restorative sleep)
  13. Lack of physical activity (due to pain)
  14. Toxic exposures (including cigarettes, pesticides, herbicides, manufacturing chemicals, heavy metals, and more)
  15. Consumption of processed sugar, flour, and dietary chemicals, preservatives, additives, flavorings, dyes, etc.
  16. Eating quickly (insufficient chewing and savoring)
  17. Isolation (feeling cut off from healthy, positive support and/or a lack of spiritual connection)
  18. Lack of phytonutrients in the diet (micronutrient deficiencies)
  19. Dehydration
  20. Chronic dieting
  21. Distracted eating (eating in front of the TV, computer, tablet, etc.)
  22. Skipping meals
  23. Eating too often
  24. Exposure to Xenoestrogens found in plastics (1)
  25. Excessive alcohol consumption
  26. Excessive exercise
  27. Frequent business travel

How do these problems fit together for you?

Weight loss resistance as linked to fibromyalgia

Which of the above items would you guess are most linked to fibromyalgia? You may be surprised to learn that a vast majority of them are. In fact, I’d select items #1 through #21 as applicable. Additionally, the remaining items may or may not apply.

Surprised?

I’m willing to bet that at least a few of the connections listed caught you off guard. Finding that they’re related to fibromyalgia may surprise you even further.

It would take an entire compendium of information to list the reasons that each of these items restricts the body’s ability to release weight. But you probably have enough background to pull out some basic themes.

The hallmark root “problems” of fibromyalgia are poor gut health, blood sugar regulation, and hormonal dysregulation. That’s a wide collection of conditions, but together they create issues that will look familiar to you:

  • Hormone imbalances
  • Adrenal fatigue/exhaustion
  • Slowed metabolism
  • Compromised immune system
  • Cognitive impairments
  • Digestive disorders

Keep in mind that the underlying functional problems related to fibromyalgia are systemic. They affect the immune, muscular, integumentary, digestive, respiratory, circulatory, nervous, lymphatic, endocrine, urinary, and cardiovascular systems. Because of this systemic connection, one problem, if left unaddressed, may trigger another.

While this sounds like bad news, the same effect can also be good news. When one system of the body is improved – for example, the digestive system – the improvements can be seen in other systems of the body. The health benefits of healing are far-reaching.

While many of the above items look obvious and common, others might be a bit more obscure. For example, item #8. How could caregiver pressures relate to potential weight gain?

One of the most underrated influences over our behaviors comes from our friends, families, and caregivers. We’re raised in similar environments with our siblings and are exposed to the same external and/or internal toxins, the same foods, and the same belief systems. We may even handle stress in the same ways.

These “societal norms” become part of our behavior patterns, so if our parents, siblings, friends, and caregivers eat unhealthy foods, there’s increased likelihood that we will too. If they practice addictive food or substance behaviors, we may too. If they are the food-preparers, we may find that we simply eat what is served. After all, we don’t want to be a bother or have them go out of their way, do we?

How does this item in particular relate to fibromyalgia?

Due to our increased need for help or outside assistance, we may experience greater influence or exposure from our family and/or caregivers than the average person. Their behaviors often become ours.

If you’d like to learn more about other influences that directly impact our health,

Fitting the pieces all together

By now, you’ve probably reviewed the items listed above and noted the ones that seem relevant to you. You’ve made a mental note of ones that are familiar and ones that may take a bit more thought. I’d encourage you to look further into both categories.

Experiment with fresh approaches
to known problems and be
open to trying something new.

Because a majority of those diagnosed with fibromyalgia have had a problem at one time or another with unwanted weight gain and/or inability to release weight, dieting is a familiar behavior.

As society has proven over the past 30 years, dieting (restricting or changing your food habits for a specific period of time) simply does not work. The only nutritional changes that have the potential to create significant health improvements are the ones that we make for a lifetime.

For more information on the immune system, the metabolism, and what it means for your energy levels,

Now that you’re armed with new and powerful healing information, what changes do you plan to make?

“Don’t start a diet that has an expiration date.
Focus on a lifestyle that will last forever.”

5 Things NOT To Say To Someone With Fibromyalgia

Living with fibromyalgia is extremely hard as millions of sufferers worldwide can attest. The fact that the physical and emotional pain isn’t visible to others can often make it even harder. Fibromyalgia is known as an “invisible illness” because its painful, and often debilitating, side effects are often not apparent to others.
Someone with fibromyalgia can look totally fine on the outside but be suffering from excruciating pain on the inside. Understanding this fact is important for those seeking to be supportive of a friend or family member of someone with fibromyalgia.

 

While it’s often difficult to find the words to provide support and hope for those suffering from fibromyalgia, here is a list of 5 things that you definitely don’t want to say to someone with fibromyalgia. Believe us, you are better saying nothing at all than one of these 5 things.

#1 “You Don’t Look Sick”

This comment demonstrates a complete lack of understanding of invisible illnesses. Not every serious illness comes with obvious, outwardly apparent symptoms such as being in a wheelchair. Fibromyalgia sufferers have often learned coping mechanisms and may use their limited energy each day to try and appear more normal to others. But the pain is still there. And even hinting to someone with fibromyalgia that they are faking it will likely put your relationship with them at risk.

#2 “It Must Be Nice To Not Have To Work”

Uh, no…it’s not. The vast majority of those suffering from fibromyalgia would do anything to regain their independence and the ability to work full-time. The insinuation that not being able to work was a choice or that they are just lazy is incredibly insulting.

#3 “I’ve Heard That Fibromyalgia Isn’t A Real Disease”

You heard wrong. The cause of fibromyalgia is still being studied and the amount of research lags behind other health conditions due to the historical lack of understanding. But that doesn’t make it any less real for nearly 6 million people with fibromyalgia in the United States alone. Fibromyalgia was officially recognized as a real disease by the U.S. healthcare industry late last year when it was granted its own diagnosis code and has been recognized for years by the FDA and Social Security Administration.

#4 “You Just Need To Get More Exercise And Be More Active”

If only it was that easy. The fact is that many fibromyalgia sufferers push the limits of their physical ability by getting up and taking a shower each day. Many do find some relief in yoga or other gentle exercises such as water aerobics. But often the kind of exertion that comes with exercise just isn’t a possibility.

#5 “It’s All In Your Head”

We saved the worst for last. Actually no, it’s not all in my head. The pain and fatigue is in my entire body and sometimes I feel like even my hair hurts! Yes it’s that bad and the fact that you can’t see my pain doesn’t mean that it’s not a physical condition. Stress, anxiety and depression can all make the symptoms of chronic pain worse but they typically do not cause the pain.
If you made it this far, you are likely either a fibromyalgia sufferer or someone who really wants to understand fibromyalgia to support someone they love. Gentle hugs to you if you are the former and thank you so much if you are the latter.

25 Things You Should Know About People With Fibromyalgia

To honor National Fibromyalgia Awareness Day on May 12, I’ve been thinking about what aspects of the condition I could bring awareness to. What don’t people already know? The reality of fibromyalgia is not only that people tend to not know much about it unless they have it, but there are many who don’t even believe the condition is real.

I’ll be taking my cue from the National Fibromyalgia & Chronic Pain Association’s theme, “Your Voice Matters.” I’m using this platform to voice a few opinions that are rarely spoken but need to be said.

“It’s fake. It’s invisible. It’s a B.S. excuse for being lazy.”

Imagine your body is on fire. Imagine every time you take a step, it feels like the ground beneath you is littered with Legos. Legos, people! Imagine if the mere act of walking from your car to your desk caused such exhaustion, you could sleep for a day. Sounds pretty terrible, right?

Now add in that there may be no way to “prove” what you are feeling is real. Imagine if every single test has come back negative (and you’ve taken hundreds of tests). Imagine that amid the fatigue, chronic pain and hypersensitivity, as you try to convince yourself to press on, you overhear people talking about how they are “over your fibro” and how much you complain about your pain. Imagine hearing that all of your suffering is something you made up in your head.

If you know someone with fibro and want to understand them better, here are 25 things people without fibromyalgia should know about people with fibromyalgia. Are you a fibro warrior? Share this post to spread awareness and understanding.

1. Give gentle hugs please, my skin hurts.

2. I can sleep all day and still feel like I just ran a marathon.

3. When I’m tired, let me sleep.

4. If I cancel my plans with you, don’t be mad. I already feel bad.

5. If I went out last night, I need a day to recover. It’s OK, it was worth it.

6. When I’m in a flare, leave me alone in a dark room (but check in). It makes me feel good.

7. Every morning is a tough morning.

8. Your friend with fibro who has “no pain” doesn’t make me feel any better.

9. “You should exercise.” My work day is my exercise.

10. Certain foods make me flare up; for example, peppers of any kind, sugar and caffeine.

11. Yes, diet matters but in flare mode, all bets are off.

12. Because of fibro, I get to spend more time with my husband.

13. Bright lights, loud noise and too many smells overload my senses and make me nauseous.

14. My day, week and month are carefully planned to accommodate my fibro.

15. Yes, my face is swollen. No, I didn’t gain five pounds overnight (I’m flared!).

16. I have three different sizes of clothes in my closet to accommodate flare vs. non-flare days.

17. I play hide-and-go-seek with the elements: too cold, too rainy, too hot, too much sun.

18. To you, car rides may be joy rides. To me, they’re a painful roller coaster ride.

19. Going to the doctor makes me mad. It’s a reminder of my condition.

20. Some days it’s OK to let my fibro win. It reminds me that this is a marathon, not a sprint.

21. I can get moody. You would, too, if you were in pain all the time. Please be patient with me.

22. I can tell your mood as soon you walk in the room because my fibro/spidey-senses are tingling.

23. There are no no-pain days, but my low-pain days are my happy days.

24. Because of fibro, the mandated down time gives me the opportunity to write this blog, and I’m grateful.

25. Because of fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.

Why Fibromyalgia Pain Loves Shoulder Blades

I ran across a post on Health Rising that described findings indicating some possible causes of the intense shoulder blade pain many with fibromyalgia experience.   Research was being conducted on a possible sister disorder; Trapezius Myalgia (TM), which pointed to the autonomic nervous system dysfunction as being the prime suspect.

Shoulder StretchShoulder, neck and head pain are common in both fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS); in fact, the pain in FM often first shows up in the shoulder, neck and head areas. Dr. Lapp has found that ‘pain, spasms and shortening of the muscles’ in these areas often leads to poor posture, rounded shoulder and shallow breathing in chronic fatigue syndrome and tension headaches may occur in as many 80% of ME/CFS patients. Myofascial trigger points which trigger local and referred pain are most common in the back, shoulder and neck areas of people with fibromyalgia.

The theory was that a dysregulated autonomic nervous system would, in a stressful situation, trigger painful muscle activity in fibromyalgia (no exercise or trauma required..). There’s no reason it should; a mental stress test after all shouldn’t involve that muscle at all – but there is all this upper body pain in both FM and chronic fatigue syndrome to account for. Just looking at that muscle with its ability to tighten the screws everywhere from the spine to the shoulder to the neck set me, with my history of pain in that area, a little a quiver. Interestingly this muscle, of all the muscles of the body, is one of the most responsive to stress in FM. Results Electromyograph readings indicated the FM patients had significantly more trapezius muscle activity during mental stress tests, breath holding and even during eating (two SNS activators) and instructed rest’ than health controls. Pain levels that rose during the mental stress exercises in the shoulder/neck area but not in the lower back indicated the upper body was particularly susceptible to stress induced pain.

10 Exercises to Help Prevent Lower Back Pain

Lower back pain is an issue that plagues many people; 80% of the population suffers from it at some point in their lives. It can be caused by many things like a muscle strain, herniated disc and poor posture. There are also many conditions associated with lower pack pain like sciatica, spinal degeneration, osteoporosis, fibromyalgia, spondylitis and more.

Whether your pain is mild or severe, this infographic illustrates 10 exercises that can help to prevent lower back pain. There’s a variety of resistance, abdominal and stretching exercises that will hopefully help you feel much better.

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10 Exercises to Help Prevent Lower Back Pain Infographic

It’s recommended that you do these exercises two times a week. Don’t be afraid to see a doctor if your pain does not improve with rest or if you experience any of the other symptoms mentioned in the infographic. It also notes that you should consult a physician before beginning these workouts, just to be safe.

44 Memes That Nail What It’s Like to Have Fibromyalgia

1.fibromyalgia meme: fibromyalgia won't kill us. it just follows us around attacking us like wild dogs

Amanda Wagner

2.

fibromyalgia meme: i'm sick and tired of being sick and tired!Lynda Brumbeloe Jones

3.fibromyalgia meme: invisible illnesses. learn about them. this is how i look. this is how i feel.

Robbye Olive

4.fibromyalgia meme: pain lets you know you are still alive. man, i feel so, so, so alive right now.

Crystal Rollosson

5.fibromyalgia meme: normal person's pain scale. spoonie's/chronically ill person's pain scale.

Abi Older

6.fibromyalgia meme: i don't always have the spoons to get anything done, but when i do i get everything done.

Cheryl Ledwidge

7.fibromyalgia meme: ever had that feeling where you just want to jump right out of bed? me neither.

Pam Jewell

8.fibromyalgia meme: and the award for acting normal when you have a crap load of pain goes to me!

Kalani J. Brickhouse

9.
fibromyalgia meme: brain fog day to do list

Andrea Mohr Delaney

10.fibromyalgia meme: fibromyalgia. also known as 50 shades of fatigue.

Holly Hoffmeister Toulouse

11.god gives us only what we can handle. apparently god thinks i'm a bad ass.

Vivi Haugaard Betzer

12.fibromyalgia meme: i was trying to get outta bed but i got tired.

Connie Quatkemeyer

13.fibromyalgia meme: the worst feeling in the world is to be in so much pain and to have nobody know that you are even hurting.

Tiffany Carr

14.fibromyalgia meme: warning! i have fibromyalgia but if i hear one more person say 'but you don't look sick' i will not be responsible for my actions.

 

Donna Ingram Doyle

15.fibromyalgia meme: don't hug me too tightly! my fibromyalgia is flaring up, my meds are wearing off and i'm feeling a tad psychotic.

Kalani J. Brickhouse

16.fibromyalgia meme: fibromyalgia's a real pain my butt... head, neck, shoulders, arms, hands, ribs, hips, back, legs, feet... and sometimes my hair hurts!

Connie Quatkemeyer

17.fibromyalgia meme: i'm not lazy, i am on energy saving mode.

Elizabeth Cortes

18.fibromyalgia meme: the faces of fibromyalgia

Jackie M. Williams

19.fibromyalgia meme: tell me one more time my pain can't be that bad

Sherry Wilson Edwards

20.fibromyalgia meme: i said i was awake, not functional

Leslie Jones

21.fibromyalgia meme: pain that makes you want to walk away from your body.

Amy Coyne

22.fibromyalgia meme: i lost my mind in the fibromyalgia fog bank off the coast of WTF happened to me island

KD Niles

23.fibromyalgia meme: my mind says 'get up' my body says 'bite me'

Leslie Jones

24.fibromyalgia meme: unless you have to rest in the shower, you have no idea what fatigue is

Chrystie Kilbourn-Terry

25.fibromyalgia meme: and here is a picture of the social life of someone with chronic pain. just fascinating, isn't it?

Kalani J. Brickhouse

26.fibromyalgia meme: yeah i'm gonna get stuff done today. fibromyalgia: nope.

Kalani J. Brickhouse

27.fibromyalgia meme: fybromyalgia definition

Anne Watercott Kotzenmacher

28.fibromyalgia meme: oh what's that you say? i don't look sick? well.. you don't look stupid but...

Michelle Nath

29.fibromyalgia meme: what my doctor thinks, what drug companies think i'm made of, how society sees me, how my boss sees me, wheat my friends think i've become, how i feel.

Robbye Olive

30.fibromyalgia meme: i battle fibro, what's your superpower?

Ellen Fraser-Wilson

31.fibromyalgia meme: keep calm and pretend your fibromyalgia magically disappeared... ha! didn't work did it?

Lynda Brumbeloe Jones

32.fibromyalgia meme: like having a hangover... only without the party.

Amy Coyne

33.fibromyalgia meme: fibro problems: feeling like you need to strip y our t-shirt off because it's putting too much pressure on your skin.

Angie Harper Hall

34.
fibromyalgia meme: fibro tip: know your limits. recognize when your strength is fading and take a break before you hit the wall.

Lynda Brumbeloe Jones

35.fibromyalgia meme: warning! i'm a pain when i'm in pain.

Lynda Brumbeloe Jones

36.fibromyalgia meme: want to imagine what fibromyalgia is like? enjoy your symptoms.

Tammy Lynn Gowler

37.fibromyalgia meme: unless you have chronic pain, i suggest you shut your mouth before thinking of commenting on my coping mechanisms.

Sandra R Branson Orsi

38.fibromyalgia meme: F U, fibro... F U.

Lynda Brumbeloe Jones

39.fibromyalgia meme: when i'm feeling down and someone says 'suck it up' i get the urge to break their legs and say 'walk it off'

Michelle Nath

40.

fibromyalgia meme: i'm pretty tough. but some days my body just says NOPE.Lynda Brumbeloe Jones

41.fibromyalgia meme: i've decided to take exercising more seriously. today i moved to the left. tomorrow, i go right.

Sue Klobertanz

42.fibromyalgia meme: this is bullshit.Reagan Wig Ely

43.fibromyalgia meme: please try to hide your surprise at my disease history and my age - I know i'm special, thanks for confirmation.

Kelly Miklethun-Shimp

44.