Fibromyalgia - What is it?

Based on articles I've read on various sites, such as Mayo Clinic's, Arthritis Foundation and ThirdAge.com, I thought I'd share a little more info on what fibromyalgia is all about. 


Fibromyalgia is a complex, chronic and debilitating health problem that causes widespread musculoskeletal pain and stiffness, in conjunction with specific areas of tenderness. Like arthritis, fibro is considered a rheumatic condition which impairs the joints and soft tissues of the body. Tender points on the neck, shoulders, back, hips,  arms and/or legs can hurt when even a small amount of pressure is applied. This pain and stiffness may come and go, and move around the body. People with this long-term syndrome are very tired and have ongoing sleep problems; i.e., me :-(. Medical experts believe that fibro patients are unable to reach the restorative stage of sleep that most healthy people experience. Because of this and other symptoms, those with fibromyalgia may also deal with anxiety and depression. Symptoms and related problems can vary in intensity, and will go up and down over time. Stress worsens the symptoms of fibromyalgia.

Fibromyalgia affects 2-4% of people, 80-90% of those are women. It's usually diagnosed based on the patient's symptoms, along with the number of tender points.  At this point, there is no cure for fibro, though medications and/or holistic treatments can relieve some of the symptoms.  Getting enough sleep and exercise is very important, but both can be difficult to accomplish because of the ongoing symptoms of fibromyalgia. It's a vicious cycle...you need to exercise daily to lessen the pain and stiffness, but the pain, stiffness and fatigue make it more of a struggle to get to the place of feeling able to exercise. Sleep is also needed to lessen the overall symptoms, but with fibromyalgia it's rare that you get the quality of rest that you need. I find that very frustrating. :-( I think this in itself is what can cause the anxiety and depression...at least it does for me. 

Fibromyalgia Symptoms:

• Tenderness to touch or pressure affecting joints and muscles

• Pain in multiple areas of body

• Stiffness

• Fatigue 

• Sleep problems (can't sleep and/or waking up unrefreshed)
• Problems with memory or thinking clearly

• Fogginess...head feeling like it's in a cloud
• Unable to focus

• Depression or anxiety

• Migraine or tension headaches

• Digestive problems

• Irritable or overactive bladder

• Pelvic pain

• Sex drive diminished

• Temporomandibular disorder—often called TMJ (face or jaw pain, jaw clicking and ringing in the ears

What Causes It?
The causes of fibromyalgia are unclear. They may be different in different people. Fibro can also run in families (my Mom was diagnosed with it a couple of years before she passed). There likely are certain genes that can make people more prone to getting fibromyalgia and the other health problems that can occur with it. Genes alone though, do not cause the onset of fibromyalgia.

There is most often some triggering factor that sets off fibromyalgia. It may be spine problems, arthritis, injury, or other type of physical stress, like another chronic illness. Emotional stress can also trigger fibro. The result is a change in the way the body "talks" with the spinal cord and brain. Levels of brain chemicals and proteins may change. For the person with fibromyalgia, it is as though the "volume control" is turned up too high in the brain's pain processing center. 

Me and Fibromyalgia
I've not had any real physical trauma, but I've had chronic illness throughout my life, along with a few traumatic events. And when first diagnosed with fibromyalgia, I was working in a very stressful environment. I think chronic illness, emotional trauma and my genes set me up to get fibro; and then with the depth of the stress I felt at that job, I fell off the edge of a somewhat healthy life and into the foggy, tiring and painful world of fibromyalgia.

As with all things in life though, I've had to accept the challenge of living with fibromyalgia.There's been many days when I thought it was beating me...when I felt more tired emotionally from it. Most days though, I win. I won't allow it it kick me down long-term, giving into the pain and fatigue. I'll continue to push myself past the symptoms and live as full a life as possible. :-)

Ugh! Pain Reigns!

Bronchitis is better, though not totally gone. Much better than it was though. Woo hoo!! Bad news though is the fibro pain is back. What's up with that??? Can't a girl get a break? I'd like a day when I'm not tired, not dealing with asthma or other respiratory problems; when I have no sinus issues; no pain of any kind, and my body overall is in good health. I want to feel joy, but it's difficult to feel happiness to that depth when you don't ever feel good. I don't forget though, and am thankful, that I don't have cancer, aids or other life-threatening or debilitating ailments. But does that mean I should feel guilty for wanting to have a few days of good health?  I do feel guilty though. Though I'm just trying to be open with my thoughts now, I feel at risk of being looked at as an ungrateful whiner. Maybe the problem is, I see myself that way. I grew up thinking I shouldn't complain, and still struggle within myself when I share negative thoughts. It makes me think I'm weak emotionally because I'm not quiet about my physical issues. It's hard to break free from that mindset, even when sharing how I feel in this blog.

To go on though...I had less than stellar sleep until around 1am last night. I tossed and turned a lot. By 3am, I couldn't sleep at all. No matter which way I turned, one or more areas of my body felt pain. I started out sleeping in my bed, then moved to the recliner, the sofa, and ultimately back to the recliner. I gave up on sleep totally around 4:30 this morning. With all that said, the fibro pain was not as bad as it's been at other times, so I can be thankful for that. I am still very tired though...not so thankful for that. :-)

Monkey Mind

Lately I've struggled with knowing what to write...seems like my mind is blank, though I know it's not.  I have a lot of thoughts but they are disjointed, like they're bouncing all over the place. I can't seem to pull words together in a way which allows me to share my thoughts in an understandable way. I have monkey mind.

Wikipedia describes monkey mind as a Buddhist term meaning, "unsettled; restless; capricious; whimsical; fanciful; inconstant; confused; indecisive; uncontrollable". I don't know about being capricious, whimsical or fanciful, but unsettled, restless, inconstant, confused and indecisive fit on most days. Uncontrollable works too when you're talking about my eating habits. :-)

It's very frustrating to have a lot of thoughts, but not complete thoughts. Sometimes my mind is on one subject, then it jumps to another, and then another. I go from one rabbit trail to the next and most times don't find my way back. This happens a lot when talking to others, but I've learned to laugh about it. No point getting upset...that'd just be one more thing for my brain to bounce around all day.

This is the 3rd blog I've started in the last couple of days...the other two I never finished. Even now, when trying to write about this, my mind is flitting around like a butterfly on steroids. It seems to take forever to put a complete paragraph together in a way that is readable. I can't focus.

I read that people with fibromyalgia have minds that never shut down. It's called "monkey chatter." I know my brain is like that. I think that's partly why I don't sleep much; and then when I do sleep, it's a lighter sleep. When I wake up from sleeping, my mind is already racing...almost like it never stopped.

Mindfulness a form of deep relaxation that involves focusing on being "in the moment." It's said that if you relax in this way it will help you stop the mental chatter. This can be done by listening to music and/or focusing completely on your surroundings, while enjoying where you are and how you feel internally at that very moment. This requires a mental discipline that I struggle to find. 

Though it isn't easy for me, I need to at least try to practice mindfulness. It would hopefully help my monkey mind with it's endless chatter and also allow me to focus on, and appreciate better, this life God has given me. I don't think I can truly be grateful for all I have in the Lord when my nonsensical thoughts are jumping all over the place.

Time to end this monkey mind and apply mindfulness. We'll see how I do. Pray for me. :-) 

Black Friday

I didn't plan on going to the after Thanksgivings sales, but then I woke up 3:00am, thinking "what am I going to do now?". Then it hit me, I can shop! Woo Hoo! There is one day a year that is made for insomniacs!!!!

I figured I'd better make some plans...think about who to Christmas shop for, and then check out the sale ads before I left. As I sat here looking through the Kohl's ads, I thought about the name, 'Black Friday', and it hit me why it was called that. It's pitch black outside!!! Isn't it amazing how well you can think in the middle of the night, or what can pop into your head out of nowhere??! I'd never thought about that before. Geez...and I've been hard on my brain! I've got a super brain! OK, maybe not super, but at least it's got some thoughts! Sometimes, it doesn't seem like it. :-)

You may think it's no big deal to come to some little realization like why 'Black Friday' is called 'Black Friday'; but in my world anytime it feels like my brain is clicking, it's a big thing.  Fibromyalgia affects your memory and focus, and the constant fatigue from not enough sleep makes it worse. I struggle with what's called 'fibro fog'. Because of that, it's easy to get excited over what might seem small or silly to some. When I feel like my brain works on all, or at least more, cylinders it makes me happy...especially when it's at 3:00 or 4:00 in the morning! It's the start of a good day!

Enough chit chat...it's time to guzzle the rest of my coffee and head to Kohls!

Hope you have a great Black Friday (even if it's no longer black out when you wake up :-)!
Peggy

Sleep

I wonder what it's like to sleep well night after night. It's close to 2am and I still can't sleep. I've dealt with insomnia most of my life for one reason or another. As a child, it was due to severe asthma. Tonight my sleeplessness is due to the fibromyalgia and pain in both knees.  Recently it was discovered that I have osteoarthritis. The good news is that the orthopedic doctor gave me a steroid shot in both knees, so they should feel better in a couple days. Now if I could get rid of the fibro pain....

I think insomnia causes or worsens issues in my life. When I don't sleep the fibro pain is acerbated, and then that causes me not to sleep. Ultimately causing my chronic fatigue. It's a vicious cycle that I can't seem to find a way out of. Exercise helps the fibro, but it can also cause more pain. I have to be careful to exercise every day, but not to exercise too much; and with being so tired all the time, I struggle to stay motivated to do anything. The lack of sleep and pain also cause depression, making the grief over losing both my parents a few years back linger.

Not sleeping well has also affected my memory. Though we all struggle with memory issues as we age, my memory problems became more of a concern, so much that my doctor ordered a brain scan done. I'm happy to say though, that she was pleasantly surprised to see that I do have a brain. :-) All was well with it too, so the doctor believes again that my worsening memory issues are due to my poor sleep habits and the chronic pain. That's a good thing...I guess. 

It seems almost daily lately I hear or read some news report that not sleeping enough can end your life earlier. How depressing is that??!!! Makes me so depressed I just want to sleep. But I can't!!!!

So anyway, what is is like to have a deep sleep every night? Are you in complete darkness, not remembering anything when you awaken? Do you have good dreams? I don't dream much...maybe because I don't sleep much and it's not usually a deep sleep when I do. Do mysterious beings clean your house while you're asleep. Maybe I never had any fairies or elves clean mine during the night because I never slept long enough for them to steal into my kitchen and wash my dishes without me knowing it. I wish I could tell them somehow that it's OK to do it while I'm awake! :-)

Anyway, it's good that the Lord got me back to this blog so that I had something to do while I was awake. I just finished reading my 70th book in the 2012 year...my goal was 50. I need another midnight hobby. Any ideas? 

I'll stop for now. It's 3am now and in just 2 more hours I will allow myself to make coffee. Woo hoo!!! I make myself wait till 5am just in case I can fall asleep before then. One of my sleep or sleeplessness rules. I may be falling apart everywhere else, but I do maintain my standards! :-)

I hope you had a great sleep. I'm going to lie back down and see if I can get some of that sleep I hear so much about.  

Pleasant Dreams!

Peggy

Smile

Yesterday wasn't the greatest day. I had to be at the airport by 4am and say goodbye to a good friend. Because of the early flight, the night before I didn't take the meds that would help me sleep. I was afraid I'd be in a haze and not wake up in time. Because I didn't get much sleep though, the fibro fog set in anyway. It had enveloped my brain as I rode to the airport, making it difficult to focus. The pain throughout my body was worse too.

To make matters worse, it was the first day of United and Continental Airlines merging. Their new computer system had glitches, so it took longer to check in. I felt relief when making it to security and it was my turn for a body scan. You know my head is messed up when I find joy in that! :-) My inward smile faded when I was told they'd need to pat me down; though as any good Christian would, I smiled and said, OK. Whoo hoo, more fun! I did request a private room though. I wasn't inclined to show by belly to everyone going through the security line. A girl needs some privacy! Before the pat down, security asked if I had any pain. YES...EVERYWHERE! I have Fibromyalgia! Of course I didn't say it in that tone outwardly. I'm not sure why the question though, they pat you down all over anyway. Thankfully though, the patting didn't aggrivate the pain, and no bombs or chemical residue were found on me. I was released to go to my gate...only to wait an extra 40 minutes before the plane flew out because of the ongoing computer problems.

I was late into San Francisco, but thankfully I had a long layover so didn't need to rush. I had plenty of time to get a simple (not so good) breakfast of eggs, sausage and toast for a mere $13. You really do need to be rich to travel! After sitting, walking, standing, walking and sitting again so as to avoid any additional fibro pain, it was time to line up to the gate to fly out...only to find the United computer problem still unresolved. The new system didn't accept boarding passes printed before the merge...anyone who'd checked in early had to check in again. I didn't let that get to me, though there was quite a bit of grumbling in the crowd. After another 45 minute delay, I was seated on the plane. In less than 2 minutes I discovered I was sitting next to grumpy pants; and within another 5 minutes, my airline attendant showed her foul mood as well. It was a  long 4 1/2 hour flight before I finally arrived in Chicago; but thankfully, we arrived safely and I'd not been snippy with anyone. Fighting through the emotions and dealing with fatigue and pain all day had taken a toll on me though.

This trip reminded me that there are so many instances in life which can affect us negatively if we allow it. Whether we are aware of it or not, our brain and heart are constantly making choices on how to deal with situations and people. We can make our day worse or better by how we respond to them. I believe that each time we make a decision to smile in the face of adversity...or at least, not outwardly scream...we are choosing a better way. It's our choice to be happy...or not. I didn't necessarily spill out with joy during my day of traveling, but I didn't bite anyone's head off either. That makes me happy. :-)

What stands out the most on my trip home was a young girl's smile. As I walked down the airplane aisle, I felt this tug on my sleeve and turned to see this small girl looking up at me. Her eyes seemed to twinkle as she showed me her sweet smile, and that one moment made me forget about the pain and fatigue, and had more impact than all the negatives put together. I believe when we allow the good feelings, however few, to outweigh the bad, God smiles too. Makes me think I should smile a little more too, so that maybe I might make it a better day for someone else...just like that little girl did for me.

Writing

Blogging is new to me so I'm not sure what I'm doing, but I'm going to try and share my thoughts.

My best bud, Karen, who helped me setup this page is planning to tell friends that my blog is out there for viewing. I'm not sure who would want to read what I have to write, but by Karen being my personal advertising campaign, it forces me to actually blog something. I guess I've been rattling on too much about how I want to write again, so she's trying to help me accomplish that goal...maybe even make me accountable to my so-called desires; though what's wrong with whining about something you want to do without ever really applying yourself to doing it??? I mean I have a number of excuses I can come up with for not putting my fingers on a keyboard or picking up a pen. Fibromyalgia is a big one. I deal with pain a lot, I'm always tired, and my head waffles in and out of this dense fog that affects my focus and memory, among other things. It's appropriately named fibro fog. When those excuses aren't enough, I can come up with more, like being busy. There's all kinds of things that fill up my day...eating, checking my email, washing dishes, letting the dogs out, retrieving the postal mail, and looking out the window to see if weather. com has predicted the correct weather for my area. The list is really endless!

OK...as you probably already know, most of those excuses are just excuses and not great reasons for putting off the writing that is in my heart to do. The real truth is, I have trouble sharing myself with others or even putting my thoughts onto a page that may not even be read. I'm an introvert at heart and grew up with trust issues, and then when my Mom died a few years ago, I dug myself into a deeper hole...it's how I survived. This last year, I've been trying to force myself out of my safety zone but it's still a scary place for me; and more often than not, I want to run back into my hole and hide. It's even scarier to put my inner self onto a written page. Writing this blog is a way to step outside myself; or as my husband, Marty, described it today, I'm stepping into a snowy pit of lions and facing my fear...the fear of being hurt, the fear of failure, the fear of facing the difficult losses in my life that seem too hard to bear, the fear of me not being enough in some way...the fear of fear.

So bear with me as I write, or don't write. It's a process that God, my husband, my family, and good friends like Karen are helping me through.

Fibro

I was laughing with my husband, Marty, last night about my memory issues, telling him he didn't know the hell I lived in...the hell of how my brain functions--or lack thereof. I told him that I should write a book about it. He said the reason there's no books out about that subject now is because others with fibromyalgia have the same problem as I do...they think about what they're going to do, and then before they can grab a pen or get to the computer, they forget their plan and have moved on to their next mindless thought. He knows me so well! :-)