Stuck Between Worlds

The other night, I watched an interesting episode of "Torchwood".  There was a time-traveling character named Bilis who said he was trapped between time, or outside history, or something like that.  He can travel through time, but lamented that he didn't belong anywhere in it, and in that episode, he'd had enough of it. I can relate.

I sometimes feel this way about my place in the world,  as a relatively high-functioning fibromite.  I don't quite fit in with "normal" people, because of my invisible limitations, yet I am not always easily welcomed into circles of chronically ill, either.  (Or at least it doesn't always feel that way.)  I did not realize the latter until recently, but I noticed the way I am treated in these groups is different from how some of the others there are treated.  I have plenty of symptoms, yet I manage to work full time and do many of the things that normals do, even if I have to do them carefully or differently.  This somehow makes it difficult for me to fit in anywhere.  I don't feel I have the right to vent in these groups - not fully. Nor do I feel I can vent with so-called "normals" who don't have Fibromyalgia.  

And I understand that those who are bedridden, in severe and constant pain, and without income, definitely have more to vent about.  I get that.  But the fact remains, I don't easily find a place that meets my own needs.  I can give advice and share research information and offer sympathy, but I feel like my needs could never be a priority to them, not the way a more severely affected fibromite's needs may be. I feel a bit second-class there, even though I don't believe it is entirely intentional.  Does this emotion make sense?  

I still have these emotional needs, but I'm in some sort of no man's land, where I don't measure up or down to the standards of existing groups that I've found thus far. Don't get me wrong, but I worry that a group treating me this way could inadvertently be encouraging its members to stay sick.

Anyway, there was a response to one of my comments in a group that felt a little unnecessarily harsh toward me. It was not directly offensive, but a fibromite in a low mood would not have appreciated the response at that time.  And I have recently been in that low mood, so it was a little fresh on my mind yet.  I wanted to be the bigger person in all this, so I just let it be. I did not want to start an argument that neither of us wanted to have. There is always the possibility that symptoms are affecting moods among any of us at any given moment. So I try to remember to tread lightly, just in case.  

So what's a Benia to do? Who can be my true peers when I need them? Are others feeling isolated among people who should be their friends, or is this just me?  Is there an undercurrent in some of the interactions you have with other fibromites? Is there a place for people like me to feel at home?  Do you know of groups like this?

If you think I'm making too much of this, I can appreciate that, but I don't think I should have to be on my own because I am managing my chronic illness to some degree, so I can live.  We each need support, regardless of our own perceived level of suffering.

I think it's probably a good idea to let things simmer a bit before I comment or say something back that I might regret, in case I'm the one who has misinterpreted the comment.  I mean, we're all kind of emotionally broken at one time or another, thanks to our ridiculously unpredictable symptoms.  It's probably a miracle we can get together at all.  I know that I may be making too much of all this, but, regardless of the way I feel about these specific examples, I do know that there is a variety of fibromites at various stages with varying symptoms and life challenges getting together in groups, and we are not always able to be level-headed about things when the fibro beast has been beating us down all day (or week or month or year).  It's almost a powder keg for any of us to belong to these groups, given our fibro fog and mood issues.  When we need a friend the most, we are not always going to be thinking clearly.  It's a risk.  Buyer beware and all that.  Perhaps there should be a preamble or mission statement that covers this kind of stuff in the fibro groups.

Tell the FDA What You Need

A while back, I posted a comment to this article asking fibromites to share our experiences with Fibromyalgia with the FDA, in preparation for their upcoming four-hour discussion on December 10, 2013, in Maryland:  http://americannewsreport.com/nationalpainreport/fda-seeking-public-comments-fibromyalgia-8821990.html

After I commented I was contacted by the editor, Pat Anson, via email, asking me for more detail on my experience with Cyclobenzaprine, for another, related story.  That article was just published yesterday: http://americannewsreport.com/nationalpainreport/fibromyalgia-patients-take-drug-label-help-sleep-8822476.html

Please feel free to comment on either or both of these articles with your own experience with Fibromyalgia and treatments that may or may not have helped you.  The FDA is asking for our input and is ready to listen.  Even if you do not reside in the USA, your experiences are helpful in finding proper treatment.  

Be sure to mention what was most and least effective for you, including any details regarding any side effects, (like weight gain, dryness, mood changes, sleep issues, etc.) which are very important when attempting to treat a very symptom-heavy condition like Fibromyalgia.  Talk about the symptoms and side effects that are most bothersome and those that you find to be tolerable.  Include your thoughts on any supplements or herbal treatments you may have taken.  Share what you can.  This is your chance to be heard and inspire the focus for future Fibromyalgia treatments.

Just What Any of Us Needs: A New Symptom

For the past few weeks, I've noticed a new kind of pain.  It's headache pain, but the odd part about it is that it comes on suddenly, hurts a very small point on my head for about 1-3 minutes, then is gone just as suddenly as it arrived.  

The first time, I just assumed the weather changes might have triggered some migraine action.  Then, of course, because it was so sudden and intense, I worried the worst about strokes or tumors or whatever horrible thing might be responsible for sudden pain in the head.  I believe the first one was in my left temple.  I remember because I immediately started pressing into it with my finger to lessen the pain.  Then it went away.  Magic finger?  I was glad it was gone, anyway.  

Then another one occurred maybe a day later, but in a spot behind my left eyebrow, near the nose.  I wondered again about this new troubling symptom and the awful possibilities.  Then I stopped myself from going too far down the and was just grateful when it was gone.  

But then it kept happening.  I am not positive, but thus far, all of them have been landing on the left side of my head, though in about four different spots: the temple, the eyebrow/eye area, behind the ear, and near the nape.  These are all spots that have all been affected by migraine and other headaches I've had in the past.  They may be places where muscle spasms and trigger points have done their dirty work and caused pain.

Because I could not get the thought of disaster out of my mind, I did some research to see if I should worry.  What I discovered was that this quick headache thing has a name.  Two, actually.  The nickname is "ice pick headaches", but the clinical name is "primary stabbing headache". After Googling a description of what I was experiencing, and expecting to find ties to strokes or aneurysms, I found the names on this helpful page (note there are 3 pages to the article: http://www.healthcentral.com/migraine/types-of-headaches-35919-5.html

It was a relief to find that people have been having this fleeting head pain and although it's cause is poorly understood, it does not seem to be a serious threat to my health or my life.  Apparently, this is something that a lot of migraine sufferers also experience.  Check and check.

Armed with both the clinical name and the nickname of this symptom, I thought I'd try to learn more about it from others.  First, I posted about it in a Fibromyalgia group asking if others were dealing with this.  I also had a doctor appointment recently and brought it up to her.  What I found in both of these cases, is that this is not a well known symptom, even in the medical community.  Despite my explanations, people seemed to see or hear "headache" and go right into discussing migraine and other typical headache experiences and treatments.  

This is not something I am treating, other than applying pressure for a minute, because it comes and goes inside of five minutes.  The doctor had not heard of it either, and shared a personal story about her own troubling headaches that turned out to have an unexpected cause.  She suggested going to my primary doctor about it, but I'm not sure what help he would be if he hadn't heard of this either. I'll see how it goes.  It's only been a short time that this has been happening.  If it gets ridiculous, I'll check with the doctor.  I just hate going through all that to get a shrug and a guess.  I get enough of that with the Fibro.

Have you experienced these quick, minute-long "ice pick headaches"?  Have you been able to figure out a trigger or cause, or a way to prevent them?  Feel free to leave me a comment.

When Temps Drop, My Pain Rises

We had our first snowfall of the season yesterday.  To me, that's the official beginning of the winter... and the beginning of my yearly flare up.

For the longest time, I noticed that I had a problem regulating my temperatures.  As a child, I would frequently have to stop practicing piano because my fingers just got too painfully cold to continue.  When home computers came around, I noticed a similar issue with my mousing hand.  My mom used to tell me "cold hands, warm heart" whenever she found my hands so cold for no good reason.

These days, I notice I can't seem to escape cold temperatures, even in the summer.  There's always plenty of folks turning the A/C down because they are sweating in the office or wherever I seem to go - even at home.  I frequently bring an extra sweater or layer of clothing if I am going anywhere there is bound to be air conditioning.  Just this last summer, I remember having to have a building worker close the damper that was blowing cool air directly onto my hands at work - twice.  Most people didn't know what I was bitching about, because they prefer cooler temperatures.  For me, I had to fight to keep my hands warm while still getting my work done.  The stiffness would sneak up on me while concentrating on my job, and then the distracting pain would trigger a host of other unpleasant symptoms.  I seriously don't know how I'm able to keep a job with what I brave every day.

I don't think anyone can truly grasp just how difficult my personal challenges are.  I keep doing my best and I don't know how to feel about this, but people forget I have any kind of illness at all.  You'd think everyone would be able to understand at least pain.  Everyone has had pain of some kind at one time or another.  Some of my coworkers have painful conditions, too.  Yet they ask me to do things I can't do without making difficult decisions between my own health and my source of income.  Time and time again, I choose income over my health and deal with the consequences later.  I suppose this is part of my problem.  But, anyway, I have digressed.

As I write to you, I'm noticing how very cold my feet are.  It's not unusual for them to be cold.  If they are ever warm by bedtime, my husband jokingly asks me what I did with the real Benia.  Thankfully, he welcomes my icy feet and shares his heat with me, but I still can't seem to escape the pain.  Last night, long after the time I should have been asleep, I was just feeling this chill crawling over my skin.  Just over and over, these washes of shivering cold just kept me far from comfortable, and unable to rest.  I was balled up under 3 layers of bedding that seemed like flimsy doily as far as I'm concerned.  I would love to add 2 more thick quilts on top of me for bed.  I shivered and shivered last night, getting little sleep and dealing with new, stabbing pains in my back and head.  Eventually, I got up and braved the short walk to take some pain medication.  By morning, I was in no shape to get up and go to work.

I am about to take a warm shower to try and warm up for a bit, and I will use my heating pad to help keep me warm afterwards.  In the meantime, I want to share this short article that talks about why cold can be so painful.  It also lists several great tips for keeping warm.  I do some, but I will be trying others as well.  It's going to be a long winter for me.  Stay warm!

Top Fibro-Flare Triggers

I came across this list today and thought I should share it with you all. While reading it, it all makes sense. Of course these things can cause a flare-up! However, knowing how complex our symptoms, treatments, and lives are, it sure doesn't hurt to have a handy list like this to help you pin down causes and maybe help you plan to avoid some of these, if possible.

http://www.healthcentral.com/chronic-pain/c/5949/151398/fibromyalgia?ic=2602

Changes for Better Sleep with Fibromyalgia

Insomnia was one of the symptoms that helped my doctor diagnose Fibromyalgia.  For some reason, we fibromites cannot seem to reach the deepest stages of sleep, and frequently, it can be difficult to get much sleep at all.  I have spent several years, including a handful of really bad months straight, waking up around 2am or so and not falling asleep for several hours, or sometimes, not falling asleep at all the entire night.  Today, thankfully, I have finally got a good routine of sleep going again.  If I can't get the quality of sleep I need, I'm at least getting the quantity, which still makes a big difference for me and my sanity.  So, for those of you going mad from insomnia, I thought I'd share what seems to be helping me catch more Z's.

Several things have changed for me, including the meds I take, as well as several of my habits and personal goals.  I try to notice correlations between how I feel and what I do or what is happening when I have questions about new or persistent symptoms that pop-up.

Journaling
I can't say enough about journaling, blogging, or at least keeping track of things quickly in a calendar or other logging medium.  When you wonder how long a symptom has been around, check your entries and eliminate the need for guessing.  If you wonder if the weather is behind an infrequent symptom, check your entries for clues.  When it's time to visit the doctor, prepare with bullet points and questions after reviewing your entries since the last visit.  Write stuff down, even if you don't think it's relevant.  Sometimes that added detail can be important later on.

Medications & Supplements

Firstly, like many of you, I am side-effect sensitive to lots of medications.  I've tried Lyrica, Cymbalta, Savella, I'd been on SSRIs and SNRIs, muscle relaxants, and Rx opioids for pain, plus several supplements, per my various doctors over the years.  I'm now happy to be OFF the meds that raised my blood pressure and body temperature and caused me more grief than relief for many months leading up to early last year.  I now only take one medication regularly: cyclobenzaprine (Flexeril).  I take it at night to allow the drowsiness help me fall asleep while it works to help relax my muscles.  I love it when I can get more than one benefit from one thing.  The muscles aren't "fixed", but it definitely helps and also helps me feel sleepy at bedtime.  I'm very glad the same dose is still effective for me, too.  On top of everything else, it's not a new drug, so I can get the generic version and not worry about ridiculous insurance copays.  (Stressing over health costs does not help one get sleep.)

Caffeine

My coffee maker sits in the pantry unless we have guests over.  I like the taste of black coffee and used to drink cup after delicious (and free) cup in the office, enjoying the warmth and aromas all day long. My husband warned me that I would become addicted.  "Pish posh," I told him.  "Caffeine doesn't do anything to me."  However, he was vindicated when he pointed out that I was getting headaches around the same time and day each weekend.  Needless to say, these headaches unnecessarily contributed to my less than restful weekends.  Once I realized my body was addicted to the caffeine, I made a conscious effort to reduce my intake of regular coffee at the office until I found a good balance.  So I now have one cup, or occasionally two cups of black regular coffee on any given day, before lunch time, and then switch to decaf, tea, or water for the rest of the day.  No more weekly headaches and sleep is much more available to me now.  I also stay hydrated better, which keeps headaches away as well.  It does make a difference after all.

Food

Another habit that have changed is my eating habits.  Over a year ago, I started eating fresh salads full of veggies, fruits, and healthy proteins and fats (beans, avocado, fish, etc.) every work day at lunch time, from a Whole Foods Market near my work.  I love fresh produce and I love knowing it's good for my body and filled with healthy fiber, water, and various nutrients to give my body a fighting chance against whatever is out of order.  I started on the salads to help me lose some weight, but optimizing my health is most important to me.

I also started mixing up smoothies with fresh and frozen fruits and vegetables after I saw a Vitamix demonstration at that Whole Foods one day.  I tasted a green smoothie that was made before my eyes with nothing more than a huge wad of spinach, banana, and some pineapple chunks (and water).  It was like green candy!  I was inspired and started pricing the fancy blenders that night.  Yikes, they are expensive!  Then I realized my blender at home (Waring Pro) has plenty of horsepower in the motor to blend up smoothies at home at no additional cost!  

I started with some simple recipes I found online (including that spinach, banana and pineapple wonder) to get the proportions right, but after a few times, I eyeballed everything and made up new recipes.  Pinterest has plenty of interesting smoothie recipes to try.  It wasn't until my husband wanted to lose some weight that he got into making smoothies every weekday morning for breakfast, and a full pitcher is enough for 2 servings, so I get whatever he makes.  I really love them!  If you like fruit, but hate the veggies you know you should eat, definitely try blending them together for a tasty and nutritious, and easy to digest meal.  You can get creative and add all sorts of fun things, like nuts, seeds, honey, dark chocolate, nut butters, squashes... anything you can blend, basically.  Experiment and find your favorites.

Physical Activity
I made a pretty easy resolution this year to make sure I exercise at least a little bit every few days.  I have been doing yoga classes weekly, but when those went away, I took what I learned from class and did my own custom routines at home.  Yoga is one of several activities I do for exercise.  Others including walking, getting on the elliptical machine, stair-climbing, and various gentle stretches and exercises for my hips and back - areas I need to keep strong and stretched to keep some of my troublesome symptoms down.  The idea is to keep moving to try to prevent those awful muscle spasms, keep my blood circulating, and of course, to keep my weight healthy.  I noticed that keeping track of my activities helps motivate me to do more.  I provide a link to my activities in this exercise focused post.

Sleeping Positions

Before Fibromyalgia came along, I always used to prefer sleeping on my side, but I recently started to notice that, although I can fall asleep on my side, I almost always wake up on my back.  I used to hate sleeping on my back, but with everything in some level of pain, it makes sense that my hips, knees, and shoulders all feel better when I'm not putting pressure on them.  So now, when I'm ready to go to sleep, I frequently settle into position on my back with my head slightly turned to one side, especially in the middle of the night, or if I'm having a particularly painful spasm at bed time.

Everyone is different, of course, and there may be things I didn't remember to list or didn't realize make a difference with sleep.  If you have other tips for better sleep for fibromites, please feel free to comment.  Sweet dreams.

Peroneal Tendonitis in Right Foot

A couple weeks ago, I discovered some pain near my right heel, on the outside of the foot, near that ankle bone. I first noticed it at the beginning of a walk around the neighborhood, but I chalked it up to the usual suspects: Fibromyalgia or Chronic Myofascial Pain.

Since it wasn't excruciating, I decided to try to "walk it off" as they say. I figured muscle spasms frequently feel better after I move them and warm them up, so, with my best walking shoes, I continued on the walk for 20 minutes or so. I also wanted to get outside, get some fresh air, and move around.

When the pain persisted through that evening, I thought my plan had backfired, and perhaps the walk aggravated things. That was my first clue that this wasn't about a muscle.

When the work week began the following Monday, I realized I had something going on in this finicky foot of mine. By coincidence, a co-worker had just been through a foot injury herself, which caused pain and swelling. That made me wonder: did I injure something? Is it swelling or inflamed?

I checked the area for tenderness and found it to be slightly hotter and puffier than the other foot, but just barely. It didn't look too bad. I started taking anti-inflammatory medication (Aleve), trying to elevate the foot, and icing the area. I developed a slight limp during the course of the week, which manifested in additional pains in the compensating, surrounding foot muscles. I almost used my cane, but didn't. I hate how people react to the cane. There is no great story, no specific moment of injury. I wasn't even sure there was anything going on with this foot, or just pain, which, as all you fibromites know, happens all the time.

By that Wednesday, things were not improving, so I took steps to see a doctor. I made a call and stopped into an immediate care place, but several barriers arose. Since the Aleve and icing was helping the foot pain throughout the day, my pain was worst early each morning, then got better toward evening. I would get my hopes up each evening, only to be disappointed the next morning.

I believe I may have injured the peroneal tendon in my foot, possibly while increasing my stair-climbing from four to nine floors at a time, the week before this all started. I also remember having trouble with my warrior poses during a yoga session that weekend. I couldn't keep my balance on my feet. I found information online that indicates the peroneal tendonitis usually happens when you increase athletic activity.

At any rate, I'm happy to report that, today, the foot is much better. It's been back to normal for most of this week. After resting to prevent further injury, I am now slowly trying to get back to my stair-climbing (I did only four at a time this week) and other exercise. I even did some elliptical yesterday!

Stairs

Well, guess what I decided to do today.  This morning, during my usual 4 flights up the stairs in my office building, I thought perhaps I should try for that 5th flight and see how it goes.  Then I chickened out and just did the usual 4 and rode the elevator up the rest of the way to my floor.

That bugged me a little.  I started doing the 4 flights of stairs last February, when I was awarded a garage parking space that was near the stairwell for a full month.  I figured I'd make up the walk from the parking lot by going up some steps, even though I could only do about half the way up to my floor before my legs seized up.  It was a great habit that stuck with me even after my month of privileged parking was up.  It became stranger for me to NOT take the stairs than to just take them.  I have also read that it takes about a month to develop or quit a habit, so that makes sense that the habit stuck.  But I'd become frustrated in my limitations and not being able to progress as I expected to, over time.  Here it is, 7 months later, and I was still only going up 4 flights at a time.

Well, today, when lunchtime came, I took the stairs up to get back to work and just decided I would have to finally try to do 5 flights today.  I went slowly and took a break at 3 flights, then at 4.  Then I continued, finally, to the 5th.  Yay!  Then I took a break and just kept going.  Why not?  I rested a few seconds at each floor and kept going up until I made it to my floor on the 8th floor, which totals 9 flights (from the garage level).  I did it!  I am stronger than I gave myself credit!  Whoohoo!!!

That's all for now.  I'm doing things and watching how I'm able to handle things, pushing myself and taking breaks.  I was totally prepared to be wiped out after doing 5 flights today, and I was not too bad after 9.  I guess tomorrow might feel differently, but for now, I'm good with just enjoying the super feat I've accomplished.

I will definitely have to keep trying to do that 9 more regularly, starting tomorrow.

Where Does the Time Go with Fibromyalgia?

I have some things I want to shop for, like clothing and shoes. I also long to just browse at shops for ideas or for pleasure, like I used to. My to-do list has plenty of things on it and it keeps getting longer, it seems. These are tasks I seem never to be able to get to. I keep leaving it for another day, when I'm feeling up to it, but those days seldom seem to arrive. When I'm busy, I'm at work. When I need a break, I rest. My responsible pacing is at odds with my need for effective productivity.

I remember, once upon a time, when I could get up early, do a full day's work, exercise, do errands at lunch, and even do some shopping here and there, after work, or do some chores or enjoy some hobbies, make and eat dinner or go out with friends, relax, go to bed, get a good night's sleep and do it all over again the next day.  I could do it all and enjoy it!

These days, I drag myself out of bed much later, force myself to stretch a little, get to work later, grab lunch and eat at my desk, go home later in the evenings, collapse when I get home or make some sort of dinner, eat, look at Facebook for a few minutes, then head for bed and sleep as long as I can.  I definitely need more sleep now than I used to before FMS.  It also takes me longer to do everything, especially in the morning, because my body is so stiff and in pain.  I strive to keep up with the old me - the "normal" me, yet it seems I have a lot less time to get it all done.  Where does the time go?

My conclusion is that Fibromyalgia is sucking up the time and energy.

Yes, I blame the Fibrobeast.

It makes me move more slowly, think more slowly, and requires me to sleep more.

Plus, with pain and fatigue following me around with everything I do, I am not fully able to focus on what I do.  As a result, I have the additional burden of feeling crappy when I don't remember something or have to ask others to repeat what they said, or can't follow a story.  I try, I'm just at a distinct disadvantage here.  If you're a "normal", try to imagine focusing on a verbal explanation or story while a dog bites you in the leg.  Suddenly the story is not a priority, right?

I'm constantly trying to override the pain hierarchy while living my life.  It's not easy.  I'm actually surprised I can still hold down a job.  It's a pretty technical and abstract one, at that.  I definitely use a lot of energy keeping up with the workload and trying to ignore the physical hurdles every day.

Getting plenty of sleep is important for everyone, but especially for those with Fibromyalgia, because our brains don't let us reach all the deepest, rejuvenating stages of sleep.  The best we can do is hope for quantity and accept the poor quality of our sleep.  I have spent many a long night wide awake for several hours at a time while waiting for my brain to retire and let me sleep.  I've also had a few nights when sleep never came at all, and I was awake all night because I could not sleep, despite my exhaustion.

These days, I'm glad to report that I do sleep on most nights and sleep for most of the night.  The medicine I take also keeps me asleep longer, which is good, but takes more time from my day.  I guess I just wish I didn't feel like I'm always dragging myself through mud and pulling a huge boulder to get where I need to go and do what I need to do.

The lesson learned here is to lower my own expectations of what I can accomplish.  My daily "spoon" allotment has been lowered and I need to be more realistic about how many "spoons" it really takes for me to get through a day, and for each of my personal tasks to get done.  

How Many Spoons Does A Party Cost?

My husband and I hosted a party a little over a week ago. My husband did most of the work and I got loads of help from my in-laws as well, yet I am still paying the price of standing too long and handling the chores I had. My feet are apparently still very angry with me as I'm dealing with a mild, but long-lasting bout of Delayed Pressure Urticaria (DPU).

In the mornings, I feel pain on the bottoms of my feet even before I move to get out of bed. I dread those first steps in the mornings! I'm sleepy a lot more lately, too, and I'm still trying to stay active and stretch, and my muscles are still crabby both about the exercises I do (sore) as well as the ones I didn't do (stiff).

It seems wrong to flare for so long after a happy event, but such is the Fibro beast that is just never happy. Even resting for most of Sunday seems to have made no impact. Yesterday was trying as well, as I froze in an overly chilled office while trying to juggle several high-priority projects through nausea and dizziness that somehow seems related to the freezing air at my desk. It's 84 degrees out and I'm sitting indoors in a sweatshirt, hugging my warm coffee mug to try to warm up my painfully cold mousing hand. I may need to bring a blanket today.

Stress and Asking for Help

Work stress and physical Fibro stress.

Work is very stressful for me at the moment.  There is much to do and so many people counting on me and my team to do what seems impossible.  A coworker called me "Superman" when he felt the stress of it all.  Although it came up when he confessed that everyone relies on me to understand and explain everything we work on, only because I didn't have an answer this particular time, I am flattered by the sentiment.  I guess I already knew I was secretly super.

Anyway, back to work stress  There are just so many factors - multiple projects, tight deadlines, new problems to figure out, new people involved, an extended absence from a key colleague - that make this a very difficult  and stressful time for me at work, even if I didn't have the additional burden of my chronic health problems to top it all off.  As we all know, I'm sure, emotional stress leads to physical stress on our fragile, fibro bodies.  I had a lot of trouble sleeping last night and could not stop thinking about work.  I felt worn out and down in the dumps about my inability to keep up with the crazy workload.  I must have sounded more upset than usual, as several, concerned coworkers noticed today and offered a kind ear.  No time for venting, though.  I had to press on.

Something I did learn today, though, is that it's really okay to ask for help.

When I finally accepted help with my top priority work today, I felt a lot better.  I mean LOADS!  Until then, I had dreaded having to admit that I needed help on this project that I was entrusted to wrap up rather quickly.  I imagined the worst-case scenarios, over and over in my head.  When emotions occupy my mind, I know from past events, that my logic degrades sharply.  The fatigue from too little sleep and pains that arise from that, also fog up my brain, preventing me from thinking clearly.  Can you relate?  I heard myself answering questions incorrectly, then correcting myself incorrectly.  I ended up sounding like I was lying, but I just could not find answers to the questions being asked.  It's a mess.

During the collaborative process, however, I felt my stressful feelings were validated because it was obvious that others realized just how daunting my task really is.  And, of course, the joint effort was also very helpful in getting me going in the right direction. We made progress figuring some of the challenges out together and forging a more specific plan for me.  After that, I was much better able to focus on the task at hand, rather than being distracted by the downward spiral of worrying and physical symptom flare-up.

I know it's difficult for some of us Type-A personalities to admit we need help, much less actually ASK for help from others when we really need it.  However, it's probably worth the risk of asking if you feel stuck in that ugly spiral.  I was lucky that help was being foisted upon me, despite my unfounded resistance.

I will work on recognizing the signs before it's too late, and remind myself that it's okay to ask for help.  Even Superman can't always do it alone.  That's why he's got Super Friends to help him out. ;)

That Fibromyalgia Study

If you haven't read or heard about the recent study that seems to prove Fibromyalgia is a physical disease, take a look...

http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/ (complete with pictures)

http://www.intidyn.com/Newsroom/article-0008.html

http://chronicfatigue.about.com/b/2013/07/02/too-many-nerves-new-pathology-discovered-in-fibromyalgia.htm

http://www.ncbi.nlm.nih.gov/pubmed/23691965?dopt=Citation

A friend found and shared the news about this with me on June 23rd (via the first link above).  To my knowledge, he is not a fibromite.   I was actually pretty surprised that I hadn't come across it myself, first.  I'm connected to several, reliable sources of information about Fibromyalgia.  Perhaps they all waited cautiously, as I did, to check it out before sharing it, and possibly spreading false hope.  Many FMS patients have been on an emotional rollercoaster with these kinds of studies and the approved medications that usually go with them.  As you probably know, it's not fun to get your hopes up, try new meds, then crash with horrible side effects, lack of intended effects, and even depression at having fallen for another one of Big Pharma's nasty tricks.

I take this news with some hope and definitely with grain of salt.  It's an interesting find and could be a very exciting discovery, and I have shared the news with others I know who have Fibromyalgia, but it's so easy to get carried away, hoping for a cure (again).  However, I look forward to a repeat study with more subjects, and hopefully more insight.  Only time will tell if there is anything for us patients to gain from this.

Keep studying, scientists!  We are relying on you.

Livin' La Vida Enferma

The life of a fibromite is riddled with setbacks.  And they always seem to be surprises, too.  You'd think I would expect the flare-ups and sick days, like today, but no.  I still have some crazy hope and idea that I'm able to overcome this lifelong condition.  Alas, I do realize that I am doomed to always live "the sick life".

Overall, I would still say I'm doing lots better than I was a few years back, especially in the early days, before and just after the official Chronic Myofascial Pain and Fibromyalgia diagnoses.  Back then, I did not know very much about these conditions, nor what affects them.  Today, six years after the incident that triggered it all, I have learned a lot about the conditions, the symptoms,  the treatments, and how my body behaves, including the flare-up triggers, and the things that seem to help me.  I now have a basis for maintaining some sort of basic, pseudo-normal lifestyle, complete with a full-time office job, marriage, vacations, hobbies, chores, and problems.  Although it's still very easy for me to forget how fragile that balance is.

Blame the fibrofog (which has really been oddly worse lately, or I'm more aware of it these days) or blame the hope I give myself when I see how much progress I've made with living with chronic health problems over the years.  I am frequently finding myself scratching my head over what caused the last flare-up.  Today is one of those times.

So, I've been doing my exercises, as you saw in the last post.  I've been eating lots of veggies, fruits, nuts, and good, healthy food.  I've been having my back massaged every couple of weeks to keep the tender points in check.  I've even taken a vacation recently to relieve stress.   Yet, here I am, with headache in my nose/face, aching in my bones, some more digestive issues, and fatigue.  Looking back, I remember complaining about a new pain that has crept up in my chest (I think Costochondritis), and the digestive stuff for a few weeks now, but I assumed that if I kept doing what I've been doing to stay healthy, that they would just pass quickly.  I guess the lesson learned today is that I cannot assume that in the future.  They are red flags that I need to remember to take seriously.

Knowing myself, I know I'll have to repeat this lesson.  It's extremely difficult for me to decide to stay home from work with so much going on there, just to try to stave off a flare, when I notice a slight worsening of my usual symptoms.  Yet, here I am, knowing that it's the right thing to do and paying the price (again) for deciding to push through the pain.  I think what I fear is never really knowing if a flare would have occurred if I ignored the signs.

For example, I noticed more IBS problems than usual have been occurring for the past few days.  Let's say I make the conscious decision to take a day off work to rest and treat the symptoms.  I feel better by that afternoon.  Then I feel guilty for staying home and not going to work.  But this is where that logic fails. Had I not taken the day off, I would find myself at work, trying to subtly attend to my IBS symptoms between meetings and obligations, stressing, rushing, and making things worse, which would eventually trigger a flare-up of more Fibromyalgia symptoms.  I would not be maintaining my pleasant demeanor at the office, causing more stress from the damage to my work relationships (true story, by the way).  The next day, my body shuts down on me and I am forced to stay home because I cannot function.  Thus, today's predicament.

Damn this lunacy!  I know better and need to remember better.  I need to realize that admitting that I'm noticing a flare-up is not some kind of blow to my ego.  I am doing my best and sometimes it's not enough for the fibrobeast.  I just need to let go of that and do what I know is best: rest.

I've read so many articles and blog posts about this problem.  I will think about this more and hopefully plant a seed in my brain about being more aware about the delicate balance between being a high-functioning fibromite, and the Mack truck version of me.  I'll try to come up with something that will remind me of the right thing to do at the right time.

How are you handling your Fibro flares?  Are you reading this and nodding empathetically, or have you got a method that helps prevent disaster for you?  I'd love to read your comments on this topic.

Move Around and Feel Better

I came across this article today.  It talks about what a huge difference it makes in the body to be sitting for hours on end vs. breaking up the sitting with standing and walking around every 20 minutes or so.  What I read there is right in line with what doctors everywhere have been nagging their patients to do: MOVE!

Yes, I know it hurts.  We are a sensitive bunch and we tire easily.  Believe me, I know! I also know that it's not as easy to do as it is to say, especially in the throes of a pain flare up; however, we must make a daily goal to use our muscles and circulate our blood, regardless of how good or poor our health is.  Fibro or not, movement is necessary!  I don't run any marathons and don't expect to, but I do try to make sure I do some sort of exercise each day, even if I'm hurting a lot.  (Stretching and yoga poses count!)

Below is my exercise log, if you'd like to see what I've been doing as an example.  Go ahead and flip through back to the beginning of the year and before, when I started logging my exercise.  See how far I've come.

I'm not perfect, but I do try, and it's important to try.  Keeping track keeps me motivated and helps me remember how far I've come.  (Note: On days where I ended up being too active to do exercise on purpose, I entered the exhausting activities in parentheses.)  Most days, I start with stretches my doctor gave me to do to help with hip pain/bursitis.  There are five different ones and I usually just pick one per day to quickly do before getting ready for work.  I've just recently decided to try to do two per day, if I can.  We'll see how that goes.  On work days, I also take the stairs half-way up to my floor (it's all I can do before my legs give out) in the morning and after lunch.  Every three days I try to do something more, like walking, yoga, or elliptical machine for at least 5 minutes.  As time goes by, I hope to make that minimum a little higher.  Again, baby steps...

Join the movement!  Don't shoot for the moon today, but do try to get some movement into your day and start as cautiously as you need to.

The Fragile Balance of Activity

I'm finding myself ever entangled in the grasp of life's endless supply of tasks.  Why is there so much to do?  Is there, really?  Am I creating work where I don't need to?  Perhaps I'm giving in to my overly ambitious, Type-A personality and setting my goals too high.  That could mean I'm feeling better and more like a normal (Type-A) person than a sick person.  Yeah, that's it.  I'll take that as a good thing.  Yay me!

Anyway,  I just wanted to pop in here and let you know I'm still stretching, still exercising, still eating my yummy salads, still drinking water and homemade fruit smoothies, and still doing mostly better, overall.  However, I have recently had my body remind me that I'm still a fibromite, no matter how well I've been assimilating into society.  It can be easy to forget I'm not normal while maintaining at whatever level of pain management I can achieve.  

For example, I did just an hour or so of weeding and planting in my native garden last Saturday morning.  As soon as I finished and came back inside to clean up and rest, I realized all the pains I'd been ignoring to get the work done.  As a result, my body has been holding onto a grudge against me for 4 days now, as revenge for that hour of work.  I'm only today feeling some relief in my feet and lower back, but it's still not down to my usual level yet.  My hamstrings are still very tight.  Just leaning forward makes the soreness behind my knees escalate.  But I'll be okay.  I just have to get through this and remember the lesson for next time I'm tempted to ignore my good sense and overdo.

Here's an interesting observation related to overdoing: when I push myself and do about half an hour or so of moderate activity, my body isn't just tired and achy afterwards; I get really sleepy, regardless of the time of day.  I like to take 20- or 30-minute walks around the neighborhood in nicer weather, but afterwards - boom!  I'm sleepy and dead tired.  Much of Saturday after gardening was spent recuperating on the couch, a la sick day, watching television for distraction from the pain.

I'm hoping you are finding a balance between too much and too little activity.  It's been 6 years now and I'm still trying to figure out mine.  But hey, those who continue to learn things into adulthood remain forever young, right?  Keep learning.

Weird Myofascial Knots, Flare-Up

Last week and even the week before, I had some very strange knots that appeared in my upper, right shoulder blade/back area.  They seemed to have spread havoc to many other areas, including my head, neck, back, and hips.  There were a few days of forced rest starting last week Sunday.  I am not sure what triggered this.  I seemed to have been doing great for many months now, mostly, until the Mirena installation in February.  Then I had a painful mammogram done in March that probably didn't help matters.  It seems a bit far-fetched that these two, painful but quick procedures could have ruined such a great run, but with Fibro, you can never tell what might lead to a flare-up.  Perhaps the weather and some other factors may have combined into a perfect storm or something.  I do still strive to eat more produce and choose healthy foods more often than indulgences.

Anyway, I've been using my TheraCane massager a lot, which seems to help ease the knots and referring pains a bit.  I also did some yoga at home to see if it would help, since it usually helped a lot when I went to yoga class with pains.  I had to take a couple of days off unpaid to rest last week, but I'm sure not driving and having to think about work was the right thing to do.  I'm due for my biweekly massage tomorrow.  Last time, there we so many awful lumps and knots along the right side of my back, I couldn't believe it, but it did explain all the pain and problems I'd been experiencing lately.

Oddly, I think the fibro fog is still affecting me, since I managed to make two mistakes that added a lot of unnecessary driving/car riding time both yesterday and the day before.  Nothing major, but stupid mistakes nonetheless.  Long car trips are a little tough on me because of the immobility, but I think the stress of the mistake was also contributing a bit to my pains.

I'm still doing my best to keep up the hip stretches, stair climbing, and other activity to help keep my muscles warm, loose, and healthy.  I'm a little frustrated though, that despite my climbing 4 floors of steps every work day, at least once a day, but usually twice a day, since early February is still all I can do at one time.  I expected to be able to progress and do 5 floors after a few weeks, but I still get very fatigued at the third floor, then push myself to do the fourth and final floor, sometimes stopping or going very slowly, just to make it.  I literally feel like I have used up all the energy available in my legs by the time I'm at the fourth floor up.

Another weird thing I notice while climbing stairs is that my mind frequently gets confused and I frequently almost miss a step but luckily hesitate to prevent falls.  Does this happen to other fibromites? I'm hanging onto the rails and going slowly, but every once in a while, it's like a skip or a glitch in my brain and I'm unsure what my foot will do and if I'll land the next step properly.  This is while I'm looking at the stairs because I cannot risk not looking.  I also don't go down on the stairs because my knees buckle too frequently.  I am on the disabled list at work to skip fire drills.  With an entire building of people rushing me, I would surely fall if I tried descending 8 floors of stairs.  On top of that, I can't risk a flare up from the stupid drill.  If my life was in danger, I'm sure I could manage to go down the steps because it would be worth a flare-up to survive, but for drills, I'm not risking a flare.

In other news, I've begun to revise my WRAP and the more I worked on it, the more I've been completely rethinking the structure of it.  When I'm done, I hope to have a simpler, easier to read format, but there is just so much information and detail that I keep getting stuck and making the revisions more sweeping, which is delaying the progress.  I've set a goal to get this done by the end of the year, but I've also set a lot of other goals for this year, so I don't want to arrive in December with a mad, impossible scramble to get things done.  That would be creating stress, and I'm not about that at all.  I do realize I've taken on a lot of goals, but I think it can be done.  If not, I'll have learned something about my abilities and scale things back for next year's goals.

The weather is finally looking more like Spring this weekend.  I hope you're all doing reasonably well and looking forward to some warmer weather.

One last note, if you donated to my friend's dental fund, THANK YOU!  You are wonderful for donating!  Also, if you shared a link to the campaign with your friends or readers, THANK YOU!  You are great to help someone in need.

If you haven't done either of these things, please consider doing one or both.  Do something nice for someone less fortunate.  Doing something nice for someone is therapeutic and can make you feel good.  I do what I can to help you all by sharing details about my life.  This is a great way for you all to pay it forward and feel good about helping my friend Dee (aka "Line") get her teeth fixed so she can eat.  Many chronic conditions, medications, stress, and poverty have caused her teeth to get loose or damaged and she is unable to eat much solid food, which is further hurting her overall health.  She's been through hell and it's not even over if she can get these teeth fixed.

Even a small contribution or even just sharing the link is really very helpful for her cause.  A donation of just one dollar is very much appreciated, and you can remain anonymous if you like.  You can also skip the fund and donate via PayPal if you have an account.  Here is a link to her GoFundMe campaign with all the details.  She's also updated with a few videos that explain her situation a bit.  I would be very grateful if you can show just a little love and do something for my dear friend, Dee.  Although she is very giving, she hates to ask for help, but this is really her last hope.  Please give it some thought and see if you can help her in any way.  Earn some good karma for yourself.  THANK YOU!

Please Help My Dear Friend Get Teeth

I have a friend who is very ill with several, chronic, lifelong conditions. Her name is Dee, but she goes by "Line" on Facebook. She has Fibromyalgia, Crohn's, Arthritis, and lives with pain of many kinds on a daily basis. She has had to get her colon removed since I've known her, and with the infection and problems that occurred during all that, she has really been through hell. When I am in pain of any kind, I think of her as inspiration to go on. Her family has been dealing with their own health problems as well.

On top of all of these health problems, she's losing her teeth and cannot afford to get them fixed. Her insurance plan covers very little of the huge expense of the cost to fix her mouth so she can eat solid food again.

I can personally vouch for her. She is a very kind and beautiful person, and she absolutely hates to ask for help. Nobody likes to ask, but she is always giving of whatever she can to support others emotionally and has not asked for anything until now.

This is her last chance to fix her teeth so she can at least eat and get some nutrition into her body. If you have any way to contribute, even a small amount, please know that it is for a very good cause and will be used to restore her mouth to be able to eat solid food. It's a long way to the goal, but any small bit helps.

Also, please share this link freely as you can, to help spread the word.
http://www.gofundme.com/theinvisibleamongus

Thank you!

FMS and the Mirena IUD

WARNING: This post is about birth control.  There is a lot of detail here that you may or may not be interested in reading.  I wanted to post the details of my experience, in case they help other women out there who are also interested in the Mirena IUD, especially those with fibromyalgia.   No companies sponsor my posts or pay me for anything I say, so you can trust my opinions to be true and objective.  I know some bloggers earn a living from their ads and sponsors, which is fine, but I do not.  I kinda hate that, so I only link to or endorse whatever I like and trust to be good.  You're welcome.

When my blood pressure was not dropping to normal after many months off of Savella, my gynecologist ordered me off Seasonique because the estrogen in it could be contributing to the high blood pressure.  So, I quit taking last October and thought about alternative birth control methods.  At the doctor's suggestion, I did some research and eventually decided to go with the Mirena IUD.  It contains hormones, but not estrogen.  I found out my insurance plan covered the cost, save for a $25 co-pay, which is lots less expensive than the pills which are not covered at all under my insurance plan, for some reason.

There are few key things to know about Mirena, if you are interested.

1. It's an IUD with hormones, but it does not contain estrogen.
2. The IUD is inserted by a doctor in the office, as a quick, outpatient procedure.
3. Getting an IUD inserted is easier for the patient during her period (days 1-7), but can be placed at other times, if necessary.
4. Many women on Mirena have fewer, lighter, or shorter periods, and for many women, periods stop altogether.  (I've got my fingers crossed for the last one!)
5. Getting an IUD placed is easier for women who have given vaginal birth to 1 or more children (or any other cervix-dilating procedure such as D&C, abortion, etc.).
6. Once placed, Mirena is effective for 5 years of birth control, and it is highly effective (almost 100%).
7. Most women have no side effects, but some women do have some side effects.
8. Maintenance after placement consists of a follow-up visit with ultrasound to confirm proper placement after the first month, then checking the strings monthly, and getting regular doctor check-ups yearly.

This is what I learned online and from the product literature.  I also visited groups and forums where women described their various experiences with Mirena.  While writing this post, I even found an entire blog about one woman's experience with Mirena. Here's another blog with lots of terrible stories from various Mirena users.

It seemed that many women loved it and some even had a second one inserted after 5 years on the first one.  But others hated it because they got a lot of side effects, like weight gain, mood disorders, etc.  They were very, very angry and wanted nobody else to experience what they had.  Although, while reading some of the detailed negative posts, I suspected at least some of the unlucky women had other issues that may have contributed to their symptoms or perhaps they should have mentioned to their doctors before deciding to go on Mirena.  (Think about it.  If a mom of 2 young kids is getting Mirena because she is terribly afraid of getting pregnant again, and she's mentioning her husband being unhelpful in her rant, she's stressed already, with or without Mirena.)  I think they had untreated or undiagnosed conditions that did not manifest until they went on Mirena, because many of them did not seem to have been on any hormonal treatment before Mirena.

I liked the benefits and low cost of Mirena, but knew that there was a possibility that I might have some horrific side effects myself, since I seem to be sensitive to many medications, and because I have this damned Fibromyalgia.  However, since I'd been on one hormonal birth control treatment or another for at least 10 years now, I was willing to find out, rather than wonder about it for the rest of my life.  If it doesn't work out, I could always have it removed and switch to a non-estrogen pill or other method.

So, my first challenge was to wait for a period.  As I mentioned, I have not been off birth control pills for a very long time, but I do remember not having regular ones.  They tended to be occur at anywhere from 5 to 7 to even 9 weeks between periods, and they were always kind of miserable, which is why reducing and predicting them with Seasonique worked so well for me all these years.  So, in October, after the initial period that came with stopping Seasonique, I switched to the estrogen-free Jolivette "mini-pill", not realizing until a month later, that there were no "dummy" pills for the period in these packs.  They are meant to be taken continuously with periods that may or may not happen, and if they do, with no real predictability.  For me, nothing happened.  (Doctor, why didn't you mention this when you prescribed it?)

By Thanksgiving, I had already decided on and ordered Mirena and it was shipped to my doctor's office, waiting for my period to arrive so I could schedule the insertion.  I realized after no period came that I would be waiting a long time if I stayed on Jolivette, so I quit that and switched to condoms.  It was a little inconvenient but I wanted to get going on the Mirena project already.

So then it was nothing all month until late evening on Christmas Eve, the floodgates opened and the period was on.  However, timing was absolutely terrible for getting Mirena.  The next day was a holiday, and the rest of the week, I had travel plans.  I had to wait another month or so for the next opportunity.  Everything I'd read was about getting the thing inserted during the period, especially for someone like me with no babies or anything dilating my cervix.  So, I waited.

You know how a watched pot never boils?  When you actually wait for your period, it's an agonizingly long wait.  All of January came and went without much more than a spot or two.  On February 5th, I had a bit more spotting than usual and called the doctor's office, indicating that I'm not sure what's going on, or if this is it or not, but wanted to make an appointment while something was happening.  Luckily, a mere few minutes after making a Thursday appointment for Mirena insertion, the floodgates opened again and confirmed the period had arrived. 

The nurse told me it would be a quick, 10-minute procedure to get the IUD installed, and that I'd be fine to go to work afterwards.  Nothing to it.  Easy-peazy.  I scheduled a half-day with the morning off work.  I remember being told to take a pain medication (I took Aleve) before the appointment.  Then she mentioned it would be done by a different doctor from the one I see.  I figured my doctor wasn't available, so, no big deal.  I was all set for Thursday morning and excited to finally have this ordeal taken care of and behind me.  I was eager to find out if this solution would work for me.

When my appointment finally arrived, I met the new doctor (new to me), he assured me that he'd been installing IUDs for 30 years now, and that he would take good care of me.  He was friendly and courteous, and the nurse was also very nice and helpful.  I still missed my own doctor (because she knows me and I know her), but I figured this should not be too big a deal.  Maybe she's not so experienced with these things.  I'm probably better off, I reasoned.

So, the doctor explained all the details, showed me the product, and we got started.  He warned me when things would feel uncomfortable or crampy, just like my regular doctor.  He said he had to first measure the uterus, which would feel crampy, then the insertion was to feel crampy again.  Then a snip of the strings and I'd be all done.  It sounded a lot like the yearly check-ups with my regular gynecologist.  I was not at all ready for the level of pain that I experienced.

The crampy feeling from this was a thousand times more intense than I'm used to feeling during yearly exams.  Why did nobody online warn me of this terribly painful experience?  Maybe it wasn't this bad for most people?  Maybe I didn't read all the right posts.  I do have Fibromyalgia, which can amplify even non-painful pressure as awful pains.

I was embarrassed to be unable to prevent my yelling "ow" during the procedure.  I noticed also that my face felt really hot all of a sudden.  Then I felt weird and a wave of cold sweat came on.  I described it to my doctor, in case he needed to know.  He knew what it was and didn't seem too surprised, but he and the nurse both seemed concerned, despite my joking a bit to let them know that I'm not a big baby.  I knew there'd be discomfort, and I assumed it was just a temporary problem that I'd get over, which helped me keep my spirits up.  They gave me some juice to sip to feel a little better and were very nice to me.

The doctor felt bad about the pain and apologized for making me hurt.  I knew he didn't mean to.  He explained that I had a vasovagal response, which "some women" get during this kind of procedure.  I had never heard of this term before, but they explained and it seemed reasonable.  I'd look it up once I was out of there, I decided.  The nurse and the doctor were both very repeatedly clear about letting me know that I could lie there as long as I needed to before getting dressed, since the room would not be needed for many hours.  I asked the nurse why everyone was so concerned about me and asked if they thought I would faint or something.  She said yes.  I was also very pale, apparently, so I guess all the blood wanted to leave my head, which could lead to a fainting spell.  I told her I'd never fainted, so maybe that helped me this time.

I sipped on my juice and tried to relax for a bit, alone in the room, but I didn't feel comfortable lying on the table half-naked for so long.  So I slowly got up and got dressed, but felt very crampy, so I still needed to sit for a while.  Then I was in a hurry to leave because I suddenly felt the need to use the bathroom, so I checked out and spent some time in the rest room.  I was supposed to get to work for the afternoon, but as I slowly made my way to my car, I realized it wasn't worth it to work in this much distracting pain.  I headed home instead and notified my boss that I couldn't come in after all.  I did not want to move at all for the rest of the day and the next.  (I had to call in sick again the next day, Friday.)  I parked on the couch with a heating pad on my belly, just enduring the constant cramping and trying to think about the future, when the pain would be gone.  By Saturday, I finally felt better.

Since then, I have not had much of a problem with Mirena.  Cramping has been minimal and intermittent after that, but mostly non-existent.  Spotting is minimal.  The strings seem to be okay and not interfering with anything.  I checked for them and was relieved to find that they are thin, short, and tucked away into a corner near the cervix, where they do not cause any discomfort for me or my husband.  I have developed some strange outbreak of acne around the back of my neck and scalp, but it started back when I had quite Seasinique and was not yet on Mirena.  I am hoping that will clear up after the hormonal stuff settles in for the long haul.  I worried more about it when I didn't make the connection to the hormones.


My one-month check-up with ultrasound is scheduled for 3/11/13, and I suspect everything will go fine.  So far, the worst of it was the day of insertion and the day after.  I'm glad for that and hoping the good news will continue.

On a side note, I've been dealing with a lot of long-forgotten Fibromyalgia symptoms lately, which seemed strange, since I'd been doing so well since taking better care of my body with a healthier diet and more exercise.  I didn't put this together until just recently, but I suspect the painful insertion, vasovagal response or/and the lack of activity for those crampy two days may have triggered a fibro flare.  In the past few weeks, I was having severe pains and couldn't figure out why they were lingering for days after doing so much better with my Fibromyalgia symptoms.

All in all, I think Mirena is working well for me, after paying the higher "Fibro cost" of all the insertion pain and fibro flare up symptoms.  I'm hoping that in 5 years, I'll be ready to face the challenge a little better by expecting to cramp up for a couple days and deal with a fibro flare for a few weeks afterwards.  It's nice not to have to worry about condoms or pills, though, to be honest, I didn't really mind taking pills so much.  What I did mind was the outrageous cost of the pills.  Since my insurance is pretty much covering the entire cost of Mirena, I'm happy to have this option.

Fibro Fog & Language Problems

I recently found this article that discusses fibro fog, specifically language problems.  I found it to be relevant because I am challenged at work by people who prefer face-to-face interactions or phone calls to my emails and texts.

Part of my job involves meaningful discussions with just about anyone else in my company.  Even if they could understand why I rely heavily on written communications, I don't think it's necessary for me to explain it to them all.  But when I hear myself talk in meetings sometimes, I have become painfully aware of how halting and imprecise I sound when I cannot find the appropriate words.  Even worse, it's distracting to me to have others tell me they cannot follow what I am saying.  Then I might lose my train of thought.
 As a compromise, when I need to discuss things with others, I find that starting to draft an email helps me figure out what I want to say, but then I make the phone call instead of emailing.  It doesn't help when unforeseen topics arise, but it's something.  Luckily I'm not easily embarrassed, so I keep pushing myself to be better despite the discomfort. It's a tough world out there sometimes, so I guess it's a good thing that I don't back down from challenges too easily.

Do you have these problems with words?  If so, what do you do to cope?

huh?

Attitude is Everything

I recently visited wonderful rheumatologist, to follow up on my last visit.  Good news! My blood pressure is no longer ridiculously high.  The last time I had it measured was mid-October by my gynecologist, who ordered me off Seasonique because of estrogen contributing to the high blood pressure.  Back then, it was as high as 150/97 (the last and highest of 3 readings in that one visit).  Today, it's down to 125/87 (the second and lower of 2 readings today).  According to the wikipedia page on Blood Pressure, I moved from stage 1 Hypertension to Prehypertension.  I'm just one category away from normal.  Isn't that what we fibromites all strive for?  Normal?  I'm getting there.

My doctor was also very proud of my improvements in overall pain levels and lifestyle changes to be healthier.  I've been eating healthier foods and making sure I get some exercise in at least every couple of days.  I'm keeping up Yoga on Wednesdays and my Whole Foods salad lunch habit.  I've also added elliptical workouts (usually 15 or 30 minutes) and climbing stairs in the building where I work.  (4 floors, up is all I can do right now, but I'm pretty impressed anyway.)

Since my symptoms are mostly under control, she is keeping me on my nightly Cyclobenzaprine (Flexeril) for muscle relaxing and sleep, and leaving the rest up to me to control by living my life as well as I can.  Being on few medications is just the way I like it!

Although, I have been noticing some more heart rhythm issues lately, especially upon waking, and I did not realize until looking up the link just now that this medication warns about that.  I've had atrial tachycardia since I was a teenager, and episodes are usually short, but can last hours, and they can be slight or kind of scary feeling.  I wish I'd known before my last appointment, so I could ask the doctor about it.  I'll have to note that and give her a call to see what she says about it.  Every doctor I've seen about it pretty much shrugs and says some people just have this and they aren't sure why.  One cardiologist offered to fix it with a new heart surgery that would cut the electrical route that triggers the arrhythmia.  I don't feel it's enough of a concern to risk surgery, so I am just kind of dealing with it.

Because I still mentioned that my right hip gets stiff if I sit too long, she also asked me to do several hip stretches every day.  She gave me a printout with instructions for five different ones to do.  I have been adding them to my morning routine already.

Oddly, though, after bragging about how great I've been doing, I had a weird kink in my back, headaches, knee pain, and some minor digestion issues, plus tinnitus and a weird hour-long episode of partial deafness in my right ear.  Did I jinx myself?  At any rate, I think I may just be paying attention to many of the things that were called out during the appointment, and feeling just about average for me lately, if that makes any sense.  I do still deal with FMS and the unpredictable symptoms.  But, I'm not going to worry about it and just assume it's nothing unusual.  I'm on my way to feeling more normal and feeling more in control of my health these days.  YAY!  Attitude is everything!

Wanna jump for joy with me?  Well, if you're not up to it, you can just do a mental happy dance, if you like.