My Bullet Journal Tracker for Mast Cell Treatments and Reaction Symptoms

Mast Cell Activation Syndrome (MCAS) is commonly found in people with Ehlers-Danlos Syndrome (EDS).  Each person has their own tolerance limit for the histamine levels running amok in their body before a reaction occurs.  We like to refer to this as the "histamine bucket" that gets filled as various triggers contribute to histamine release.  Once one's "bucket" is full, that means levels are at a point where reactions occur.  Many different substances can contribute to the filling of this histamine bucket or to the slowing down the draining of this histamine bucket.

Mast cell disorders are complex conditions that even most doctors have trouble understanding.  However, I have found a wonderful doctor who suffers from this condition herself, so she is very empathetic and understands the many challenges of struggling with this complex condition and trying to manage the variety of symptoms.  I recently visited this doctor, armed with some nicely charted trackers in my Bullet Journal.  

NOTE: If you are unfamiliar with Bullet Journalling, it is basically a simple system you can use to keep track of your tasks, projects, thoughts, habits, or whatever you want, in a fully customizable format, starting with a blank journal.  For more info on the basic concept, please visit: Bullet Journal.  There are also loads of various Bullet Journal - or BuJo - groups on Facebook, plus loads of ideas on Pinterest as well.  Tracking medical information is just one kind of the myriad things that can be tracked or organized within a Bullet Journal.  You make it what you need it to be for yourself.  I have been using the system since last October and love it.

Anyway, my doctor was extremely impressed with the design of this tracker and asked where I found such an idea.  I had created this tracker after being inspired by the online BuJo community, so I decided I would pay it forward, helping patients and doctors alike by sharing my design publicly on my blog, so others can be inspired to create their own trackers to help them look for patterns in efficacy of the treatments they try.  This has been a very useful tool in answering the questions my doctor asked me during my recent follow-up appointment, and I think it's clear enough to read at a glance as well.  An added bonus is that daily tracking only takes seconds because I don't have to write much each day, once the table has been created.

Without further ado, below is my first month of tracked data, which was created after visiting my doctor on January 3rd of this year.  

Here is how to interpret this tracker.  

Basics:

This spread only covers the month of January 2019.  I have been creating monthly trackers as I go, to continue to track things, making any adjustments as I see fit, for whatever reason.  I chose to share the January one because it is the most comprehensive thus far and demonstrates the most variety of the elements that can be used.

I have listed the dates of the month across the top of each section, as columns.  You will notice that each date gets 2 cells: AM and PM. This is so I can track morning vs. afternoon vs. evening for each date. I als highlighted each PM row in yellow, to keep me from accidentally marking the wrong cell, especially as the cells I need get farther away from the labels.  

The vertical lines are simply to divide the weekends from the rest of the week.  My symptoms tend to be worse when working at, or commuting to or from the office, so I wanted to easily see when I was working in the office vs. not.  In addition, since I sometimes work from home or have a day off work during the usual work week, I noted "H" for "home" at the top for those dates, to indicate that I did not go into the office on those dates.  I also added dashes (-) above the days I left home but went elsewhere from the office, since I was not at work, but not at home for at least some of the day.  The reason I tracked where I was is that helps me gauge the exposure to my usual triggers.  These were added later, as afterthoughts, as I had not anticipated these tracking needs when I first created the tracker.  I think they sufficiently meet my needs, though.

I created two major sections in this tracker - Treatments and Symptoms - so I can track both aspects of my health for each day. That way I can see what I took and what symptoms I suffered each day, to see if there was any change in symptoms with changes in treatment dose or type. 

Notice I did not include any way to track triggers in this tracker.  By the time I created this, I had already learned that the most troubling triggers for me had been fragrances (perfumes, scented products, tobacco, etc.), in addition to my known allergens (apple, Vicodin, pollens, molds, animal danders, dust mites, dust), and some sensitivities (aspartame, sorbitol, xylitol), as well as physical triggers (changes in temperature, pressure, abrasions), and I had already learned what kinds of symptoms each of these triggers tends to cause for me.  I have a separate list of all of these bothersome triggers and the symptoms they each cause elsewhere in my BuJo.  

If you do not yet know what is triggering your symptoms, you may wish to find a way to track your suspected triggers with symptoms first, or even at the same time as your treatments, if you have room.  Do whatever works best for you!

Treatments:

The top section is for the treatments I used during this month.  I indicated the dosage of each tablet/capsule on the left, next to the treatment names.  I grouped the treatments by the relevant histamine receptor, and also divided each date into AM and PM so I can track morning vs. afternoon/evening doses separately. 

I indicated the number of tablets/capsules taken under each date.  From 1/4/19 to 1/12/19, I took 1-10mg tablet of Loratadine every day, in the AM; from 1/13/19 to 1/31/19, I took 2-10mg tablets of Loratadine each day, one in the AM and one in the PM.  

Note that I did not try any of the other 3 treatment options in January, but I included them because I did not know what I would end up doing when I created the table.  Turns out I managed to do better on my second dosage level of the first treatment I tried, so I stuck with that.  Your results may vary, of course.

I grouped the treatments and symptoms by the relevant histamine receptor, as well, to help see if H1 blockers were helping with H1 symptoms, etc.  The dotted horizontal lines are to help me visually divide the groups of H1 from H2 and from other symptoms.  I got a brief overview from my doctor about which histamine receptors are responsible for which symptoms, and which treatments target blocking which histamine receptors.  Here is more basic info on the various histamine receptors and treatments that block them.  (I am not sure what histamine receptors, if any, are relevant for the last group of symptoms, but I still wanted to track them here.)

Notice that I listed all of my potential treatment options in the chart, but thus far have only tried the top one, Loratadine, an H1 blocker.  I was wisely advised by my doctor to make only one single change at a time, so I could be sure to effectively judge the effects of each, individual change made in my treatment.  She also advised me to let each change in dosage or treatment remain the same for at least a week or two before judging its effectiveness, as it can take a week or so to see the effects of those changes.  

Thus, I do not have data for the other three treatment options she gave me.  I may consider switching treatments or dosage in the future, depending on how my body does and which symptoms continue to be bothersome for me, and I also wanted to note the details so I can remember the details when I need them.  Your list of potential treatments for your trackers may be different from mine.  Discuss treatment options with your doctor so you know if these are right for you.  Everyone is different and requires customized care.

Symptoms:

For the symptoms section on the lower portion of this tracker, I also grouped symptoms by the relevant histamine receptor, and again, divided each date into AM and PM, with PM rows highlighted, so I can easily track morning vs. afternoon/evening separately.  

The numbers used in the Symptoms section correspond to the severity of the symptom experienced on that date.  I did not note a key, but the range is from 1 to 3, with 1 indicating a mild level, 2 indicating moderate level, and 3 being a severe level.  I figured a number would be an easy and space-saving way to note severities.  If you come up with something else that makes sense to you, feel free to use that method instead.

There was another relevant and telling symptom that I tracked elsewhere, but didn't realize it would be relevant when I created this tracker: mood.  After having suffered for months with moderate to severe daily symptoms at work, like headache, nausea, dizziness, flushing, and asthma, understandably, my mood suffered as well.  I was cranky a lot of the time!  It was only after my mood lifted due to significant relief from these symptoms after taking Loratadine, that I realized it was a relevant indicator of how I was doing overall.  You may want to add a row to indicate a mood for each date, perhaps as a single, additional row for each date.  

Speaking of mood, I also learned at my recent follow-up appointment, that too much of a good thing can be troubling as well, as taking too high a dose of antihistamines can result in too little histamine in your system, which can lead to depression symptoms.  It seems too much histamine can also result in depression.  This is why treating mast cell disorders is such a tricky business.  It's not wise to just dive in and take the highest dose of these treatments because overkill can lead to some serious side effects, so be aware of the balance.  Again, definitely work with your doctor to help you find what is the right treatment and dosage level for you and your particular needs.  And if you want to track depression symptoms, definitely do that.  Sometimes depression can sneak up on you, so it can help to be able to look back at your own data to determine if there is a pattern.

Advice:

I encourage everyone to take responsibility by observing symptoms in whatever format works best.  Here are some final tips for learning more about how your body is behaving and what it needs.

1. Be consistent and track everything at least daily, to ensure a high level of accuracy.  Reflecting back on your day just before heading to bed might be a good habit to try.  
2. Try one change in treatment or dosage at a time, and stick with it for at least a week, preferably two or three, to see if the change is effective for your needs.  
3. Feel free to also track triggers, side effects, moods, or any other relevant aspects of your health, if doing so will help you make informed decisions about your treatments. 
4. Look online to see what others might be doing to track their health details and share your great ideas with others as well.  Get ideas from many sources and come up with something that works for you.  The more knowledge and insight we can share with each other, I think the better our chances of getting these complex and mysterious conditions figured out and under control.

My tracker is just one way to track this kind of information, but it has been customized for my own needs and works well for me.  I hope this example inspires you to come up with your own tracking methods and find out more about what you need.  

I Finally Have Answers! If you Have Fibromyalgia and Are Hypermobile, Please Read!!

2018 has been extremely important in finally figuring out what is behind all of my health woes. I have been feeling markedly worse the past several months, with more injuries, more pain, and more questions as to what the hell is happening in my body. As my condition continued to slide, I became more adamant about figuring this out, once and for all. And this is one of those times when things have to get worse in order to get better, because I finally have answers and something that ties all of my apparently random symptoms into a single diagnosis that explains everything for me: Ehlers-Danlos Syndrome (EDS), Hypermobility Type (hEDS).

EDS also tends to bring Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS) along with it, which also seem to be what I have been experiencing, according to the specialists I have seen thus far.  We are still working on confirming the MCAS, as it is tricky to test unless there is an actual reaction occurring at the time of testing.  POTS seems likely per the EDS geneticist and the MCAS specialist, but I need to wait until January of 2019 to be seen by the EDS knowledgeable specialist who can test me officially for that.  A tilt-table test is likely to happen then.

In addition, Osteoarthritis (OA) also tends to occur in EDS patients because of accelerated wear and tear on the joints.  I have already been diagnosed with OA by my rheumatologist, after showing her my Heberden's Nodes which have formed on two of my fingers already.

After reading all about this connective tissue disorder and how it affects people who have them, I realized I have a lot on the very long checklists.  So I sought out a local genetics doctor who is knowledgable  and booked an appointment.  EDS is not well understood by the medical community, as it is complex and there is no real treatment or known cure as of yet.  That means there's really no money in it, so not many doctors invest the time and energy to learn much about it and treat EDS patients.  (Sad, isn't it?)  Despite these challenges, I had to know if this could be the cause of my health problems, so I could at least understand what is going on in my body and try to prevent further injuring it.  I set out to find out who could rule out or diagnose this condition in me, locally.  A local Facebook Group in my area was very helpful in finding resources near me.

In order to be properly diagnosed by an EDS knowledgeable genetics doctor, one must:

1. Discuss family health history, 
2. Have this doctor examine you for certain physical traits and characteristic reactions, 
3. Perform a certain set of specific physical tests in front of the doctor, so he can assess the Beighton Score for hypermobility, and finally, 
4. It may also be recommended to have genetic testing done to rule out or identify certain types of EDS.

Once the several months of waiting for my appointment passed, I finally went to see a local EDS knowledgable genetics doctor and did all of the above.  Everything points to EDS, and the Beighton Score, along with the genetic testing, pointed specifically toward the Hypermobility Type of EDS.  Thankfully, this is not one of the more severe and life-threatening types, but it can still be debilitating.  Unfortunately, debilitating is where I seem to be headed now.  I'm not sure if it's just my age or what I've been going through, but something has caused my body to take things to the next level of awful this past year or so.

Recently, I've been rolling my ankle just walking on flat sidewalk (couple times!), I've had painful shoulder tendinitis that required over weeks of physical therapy to strengthen, I have been having new problems in my hip that make bearing weight excruciating after a period of sitting, and my knees, which have always had a tendency to buckle painfully, are acting up more these days.

I've also been reacting with flushing for no apparent reason and developed new sensitivities to Hydrocodone and Xylitol, in addition to the new food allergy to apples that I've developed in recent years, and the new lip balm reactions I have had as well.

Now that I know what's going on, I needed to understand it.  I have recently been having an awful flare up that's been affecting my neck and shoulder, back, and knees for the past week plus now.  It's been a pretty high level of pain much of the time, and is apparently not being well managed by the Cyclobenzaprine and Low Dose Naltrexone (LDN), which has been helpful in lowering my "new normal" pain levels and giving me more good days between flare ups.  These flare ups, however, are terrible lately.  I have been laid up for several days, including last Saturday, just trying to rest up and heat the affected area.  All it takes is a few days of level 8 pain to make you wonder how you can go on.  I have had to keep talking myself down to get through it.

In my current, painful state, I did some quick research on my newest, and most important diagnosis. I found this page, EDS-H & JHS: Understanding Ehlers-Danlos Syndrome Hypermobility-Type and Joint Hypermobility Syndrome to be very informative and an excellent resource for understanding how all the little diagnoses I have collected throughout my life are all tied to the connective tissue disorder, Ehlers-Danlos.

I'll try to sum up what I know now, but if you or your child or children are hypermobile, you may want to read the above web page as well to see if you relate to other details. 

Okay, here goes...

Collagen is the connective tissue "glue" that holds our bodies together. When this connective tissue is defective and weak, as it is for EDS patients like me, joints can overextend (hypermobility) and less unstable than normal people's joints. When joints hyperextend, dislocations and subluxations (not quite full dislocations) can occur. When joints sublux or dislocate, the surrounding, and already weak tissues (muscle, tendons, muscle fascia, etc.), become overstretched, and can tear and stiffen as they attempt to repair the damage. All of this spells pain, in many ways, at the very least, plus various other problems in the body. For this reason, EDS patients need to protect their loose joints with various braces and limited activities. This explains my several ankle rolls and foot tendonitis, shoulder tendonitis, and carpal tunnel pains. It also explains how that car accident in 2006 triggered a world of hurt in me that never got better, but rather snowballed to where I am now.

When movements and activities lead to these painful and destructive episodes, those movements and activities tend to be avoided - have never been athletic - leading to weakened (doughy) muscles. Weak muscles can further destabilize joints, continuing in a vicious circle of pain and destruction. This explains my chronic pain and flare ups.

Weak connective tissue manifests many ways, such as Fibromyalgia, a syndrome that describes chronic pain, fatigue, sleep disorder, Irritable Bowel Syndrome (IBS), Migraines, Temporomandibular Joint Disorder (TMJD), allergies and various sensitivities, and lots of other odd little things that make my life extra challenging.

EDS is associated with 2 other conditions that are frequently comorbid: Mast Cell Activation Syndrom (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS).

Mast Cell Activation Syndrome (MCAS), has to do with histamine and allergies and sensitivities. Basically, any kind of physical reaction that can occur as a result of any kind trigger is fair game. For me, this explains my hay fever and allergies to tree pollen, weed pollen, grass pollen, dust, dust mites, feathers, animal danders, mold, fragrances, newspapers, apples, lip balms, nickel, scratches, pressure, Hydrocodone, sudden temperature changes, and who knows what else. My reactions include rhinitis (sniffling, sneezing, and nasal congestion), asthma (cat dander, mold, dust mites, fragrances), digestive cramping and dumping (apples, hydrocodone, and unidentified triggers), hives (Dermatographia from scratches, Delayed Pressure Urticaria from pressure), dermatitis (lip balms and nickel), and flushing red and burning skin (sudden temperature changes and unidentified triggers). A lot of "masties" may suffer anaphylaxis when exposed to some of their triggers. I have had a few episodes myself in the doctors office after a slightly too high incremental increase in my desensitization injections, and have had to do the Epi-pen and inhaler thing. It was quite a production!

The other comorbid condition is Postural Orthostatic Tachycardia Syndrome (POTS), a type of Dysautonomia, which has to do with blood pressure changes, heart rate changes, heart arrhythmias, and fainting or near fainting, that is triggered by one's change in posture. This is due to blood pooling at lower areas of the body rather than circulating more reliably throughout the body. It goes back to weak connective tissue causing weak blood vessels and heart tissue, which, in turn, results in poor circulation of blood in the body and brain. This explains my momentary blindness and dizziness when getting up quickly, my unexplained heart rhythm (tachycardia) episodes - the first one triggered by my bending down to pick something up at age 17 lasted hours and I had to go to ER - and an apparent heart rate change when I squat for a couple minutes then stand up straight, as a specialist tested. I also get migraines, which are caused by a decrease in pressure in blood vessels, which makes sense here.

Some types of EDS affect internal organs and can lead to weakened arteries and digestive tract organs, which can rupture. Vascular type is particularly dangerous, but there are 13 types of EDS and several of them carry serious health risks. Hypermobility type is what I have been diagnosed with, though many of the 13 types also present with hypermobile joints. Genetic testing helps rule out or diagnose the types which have identified genes. EDS is inherited and it is usually the same type that runs in families.

The gene for Hypermobility Type has not yet been identified, so testing is done to rule out the other types, which is how I was diagnosed, along with family history and a clinical Beighton Score test for hypermobility.

This turned out to be way longer than I expected it to be, but I hope it helps someone make sense of their symptoms or lead to a correct diagnosis and proper care. Please feel free to share with others. EDS is not as rare as it seems. Doctors and patients need to know more about it so people can get the care they need and patients can arm themselves with knowledge against unnecessary injury and pain.

If you or your kids are hypermobile, please learn more about EDS and pay attention to these seemingly unrelated conditions and symptoms. There is a tie in!

When symptoms don't seem to connect, think connective tissue!

Painful Foot Update: Peroneal Tendonitis

So, last Friday, I went to a new foot doctor about the pain and swelling around my outer right ankle bone.  The whole staff was very nice.  The doctor pressed on various areas of my bare foot and asked if it was painful.  He found the worst spot (toward the back heel side of the bony area) and suspected an inflamed tendon.

I had my foot x-rayed to rule out any bone or other problems - all clear there.  With my past history of having this same problem a few months back, and since it went away with just some icing and rest, he says we can assume this is peroneal tendonitis.  If it gets better in a few days with the ice, Aleve, rest, etc. that would support the diagnosis.  However, if it gets worse or does not subside, we can do more detailed testing like MRI to see if anything has torn.

An ankle brace was recommended to help support the foot and reduce further inflammation while walking around, so I went and got one after my appointment.

I was also told my arches were slightly flat, and that my foot posture turning downward on the inner sides of my feet was possibly contributing to my tendonitis.  The doctor recommended getting some good shoe inserts with sturdy arch support. So I got a pair of these as well.  Since I had some cheap inserts in my boots already, he looked at them and added some felt to the bottom of the arch area, to beef up the support a bit.  I thought that was nice.

I also got a great printout of strengthening exercises to do to help prevent further injury to my feet, and have been giving those a try each day.  I'm backing off the daily stairs climbing at work until I feel better, and the yoga and other activities are mostly on hiatus, too, to I can rest the bad foot.  I did do some yoga poses today, though.  I just made sure I didn't use my feet for support and took extra care to look for any signs of pain in that bad ankle.

So, here I am, several days later with my foot feeling a lot better, but not quite back to normal yet.  I am still wearing the ankle brace but I have put the cane away and have just been stepping slowly and carefully at work and at home.

I'm a bit cranky otherwise, though, because other symptoms have been acting up.  I fear that the Aleve I was told to take (always with meals, mind you) for the inflammation was irritating my stomach, so I stopped taking it.  I had some gastritis a while back and don't know if that is still with me, or if it's just more IBS or something else.  I have been dealing with some sharp, stabbing pains in my ribs and back the past couple of days, and my eyes feel like I've been awake too long, though I did manage to sleep.  Then yesterday, out of nowhere, tinnitus in my left ear just started raging with this loud, muffling ringing for hours.  On top of all of these symptoms, like the cherry on top, is all the mental garbage that tags along: my difficulty with focus and memory, plus the stress of dealing with all this crap while trying to live and manage and keep my job.  I declare a flare.  And I am just trying to remember that there is hope at the other end of this particular nightmare.  I just don't know when exactly that will be.

Painful Foot and Burning Hands

I feel a bit like a dog with a hurt hind leg these days.  You know how they will lift the painful foot up and only hop lightly with it, if necessary?  It's this darn pain in my right foot/ankle area again.

As much as I hate using the cane that I keep in my car, (and getting the old "what happened?" or the exaggerated sad and concerned face from well-meaning coworkers,) I broke down and started using it a couple days ago.  I took about 6 steps away from my car in the parking lot at work last Tuesday when I realized I should be using that cane.  Stubborn me, though, I didn't turn back to get it.  I soldiered on through the morning and grabbed it at lunchtime.

Tomorrow morning, I will see a podiatrist to see what the problem is.  I'm hoping to at least find out what I might have done to aggravate this condition, so I can at least stop doing that.  Thus far, I have noticed that the pain subsides with rest, and gets worse with stairs, (both up and down,) or walking for more than about a minute.  Today I noticed further that it's when I place the heel down that is painful, and I've caught myself kind of toe-stepping slowly on my right foot, and relying on the cane for support.

The cane also slows me down so I can step more carefully.  It also helps tell others that I won't be able to scurry up to catch that opened door, or run across a walk before that car comes.  The cane is growing on me, but I still hate having one hand occupied while I'm moving.  It's also a bit of a bother in the bathroom.  I have a new appreciation for anyone who needs to use walking aids full time.

Anyway, I hope to know more about this foot tomorrow.

On a side note, I've been noticing an odd new symptom has popped up in the past few weeks.  Every now and then, my hands turn really red and hot and start burning painfully.  The burning makes me look at them.  It looks ridiculous.  One time, just my thumbs and index fingers were red-hot, but the pinkies were cold.  My husband was around so I showed him.  It is bizarre.  I also notice coldness in my toes, inside my shoes/slippers when my fingers and hands get cool.

I'm one of those people who is usually cold, especially my hands and feet and especially around bedtime.  I get those "icicle feet".  Luckly, Don is usually too warm so he lets me warm up my tootsies on his warm feet and we find some kind of equilibrium.  As a child, I remember getting hands so cold I had to stop practicing piano.  My mom knows.  She would always say "cold hands, warm heart" to make me feel better.

My first thought about the temperature weirdness is Raynaud's, which is common among fibromites. Cold really does hurt my hands.  For example, peeling a cold cucumber requires breaks where I put down the cold cucumber and blow on my hands to warm them up again.  Again, ridiculous.  When I come in from a walk in cold weather, my thighs are numb and as I begin to warm back up inside, they twitch all over.  Does this happen to you?  The thing is, I've never recalled any real white or blue discoloration of my fingers, as with the classic Raynaud's.  I know it's not the same for every patient, but I just notice that.  I just get the red, hot hands.  I don't know if my feet get that way, though, other than when the pressure hives are raging on the bottoms of my feet.

Today I came across a rare condition with the burning red extremities.  I hate to speculate, but I cannot help but wonder about it.  It's called Erythromlalgia and here is the page with the interesting photos: http://www.erythromelalgia.org/WhatisEM.aspx

I will definitely need to note these new symptoms for my next rheumatologist appointment.  I just saw her last month, but if things get ridiculous, I may try to see her sooner than my next appointment in August.

Do you know anything about this?  Got any tips or links that might help me?

Snowy Weather

This winter has been extreme in several ways, and in much of the U.S.  Between the frigid temperatures caused by the "polar vortex" and the frequent snowfalls, it's been challenging for us fibromites just trying to survive the season.

I'm having a variety of symptom flare ups despite my cozy fleece leggings (I got several from Walgreens for five bucks each - so worth it!) and my husband forbidding me from shoveling the snow.  Muscle spasms have been frequent.  IBS was raging fiercely for a couple weeks but has finally subsided (thank goodness).  And the odd foot problem I had last Fall is back today.  Somehow, it snuck back while I was lying in bed or sitting down today.  I just don't see how I could have triggered if I wasn't doing anything.  I never managed to see a doctor about this last time, so I might be doing that if this becomes a daily pain again.

Anyway, I recorded a short, relaxing, snowfall video a couple weeks ago and thought I'd share with you all, so you can relax and enjoy.  

I'm hoping we are in the home stretch of winter, finally, so hopefully looking at this will not stress any of you out.  

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.

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.

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.

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!

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. 

My Life at Forty

Ahh, life.  What is life?  It's consciousness, the ability to use energy and do things.  It's about choices as well as things that just kinda happen.  Some of my experiences are the results of my choices or the choices of others.  Some things also just happen.  Sometimes it's fun and happy; other times, not so much.

I turned 40 earlier this month.  I never used to care about age or understand why some people lie about their age.  "It's just a number," I would say to people.  30 was no big deal.  I felt fine with being a thirty-year-old.  It was just another birthday, though I do remember having a small party to celebrate it.  I suppose it was an excuse to to have a celebration and enjoy some pizza and cake with people.  Oh, and drinks.  Many, many drinks.  It was a good time.  I eased into adulthood, perhaps happy to leave the immature twenties behind.

In the weeks leading up to my 40th birthday, however, I kind of felt something new.  I kind of kept reflecting upon my age, my health, my death.  Will I live another 40 years?  Is this really the middle of my life?  The past forty years seem to have been short - will the next forty also feel short, or even shorter? 

I'm still not much for lying about age or denying it to myself.  I am facing these thoughts, mostly out loud to my husband, who turned 40 last year.  It's weird how I never anticipated this birthday being much more than some random milestone assigned by society.  I'm starting to get what those "Over the Hill" birthday party favors and gag gifts are about.  It's a way for everyone to acknowledge these feelings, but tempered with some humor.  I suppose celebrating birthdays with people both older and younger than yourself is really the right way to do it.  The older folks have gone through it already themselves, and survived!  That's encouraging.  The younger folks remind me of my younger days, not expecting to know what reaching older ages is like, both physically and mentally. 

Now that I've been "wearing" 40 for a few weeks, it seems to be less scary.  I still have to face the facts that I am now in a new age group.  Mammograms, colonoscopies, and bifocals are surely lining up for me in the near future.  I've had a few mammograms already - and yeah, OUCH - they are not fun.  But assuming the results keep coming back negative for any abnormalities, I'm okay with that. 

I came close to getting a colonoscopy back when my IBS was flaring up over several months, but as luck would have it, my awesome GI gave me a new medication that actually worked and we canceled the exam.  I am also aware of the process, as my husband has had several colonoscopies, due to his Crohn's disease.  It's not fun, lasts longer than a mammogram, and is pretty inconvenient, too.  Still, I can get through that.  I also have had an endoscopy done, if that counts for anything.

As for bifocals, I'm already nearsighted since high school, and usually opt for contact lenses to correct my distance vision.  Since that car accident in 2006, though, my vision has changed in several ways, and continues to change rather frequently.  I already notice my very near vision has become blurry, making reading fine print challenging.  Again, though, perhaps a prescription change is not so terrible.  I've been managing corrective lenses thus far.  I can probably handle that.  I guess.

So, these are not so scary.  Aging gracefully may still be an option for me.  Many folks make it to 80 and 90 in relatively good health.  With lifelong conditions like Fibromyalgia, Chronic Myofascial Pain, and Asthma, I understand I have additional challenges, but I also understand that being as fit as I can be is the key to empowering me with the best health I can achieve.  I know that eating healthy and staying active goes a long way toward preserving good health, so I will strive to do those things.

Some other recent events have also caused me to reflect on my age and mortality. 

Near the end of the workday on my 40th birthday, my husband suffered a severe kidney stone attack.  The stone was 6.5mm across and was stuck very near the left kidney.  I'll spare you the details, but life was miserable for him for several weeks thanks to this surprise.  We had to cancel my birthday party, and he felt bad about that, but I wanted him to feel better and stay close to home in case of any complications.  He's passed some of it and is feeling much better now, finally.

I also recently learned that my mother-in-law had suffered a stroke.  This was not her first, but it seems more serious that the one she had before I met her.  Although she was told that one side of her body will not recover this time, I am hoping that she can beat the odds and regain some function and sensation that was lost.  Thank goodness it was not her dominant side and she can still do some things.  I'm also glad that she can talk and remember us all. 

As we approach the year 2013, I have listed a few new resolutions (which I never used to do until 2012) that take into consideration my age, my health, my family, and my wants and needs.  I wish to be more responsible with my own health, as an investment of my old age as well as to help relieve others of the need to worry about me.  This includes considering making decisions and arrangements for what will happen to my remains when I die.  I feel it's the responsible thing to do. 

When life manages to give me warnings, I strive to make the most of it, whether it's through me or others, and learn something from it.  I won't live my life sheltered, but I will not live recklessly if I can help it.

Take care and do pay attention to your own body and look for the warning signs that could help keep you healthy and young at heart.  I hope the next year brings you closer to your personal goals and opens your eyes to wonderful opportunities! 

Blood Pressure - Still High Despite Getting off Savella

As you may or may not recall, the earlier part of my year has been tarnished with an unnecessary spike in blood pressure that could have been prevented by my former Fibromyalgia doctor.  Here's the post describing the worst of it.  Once I realized the cause of the blood pressure spike - two medications that should not have been taken together - I promptly got off both drugs, expecting my blood pressure to return to normal soonafter.

Unfortunately, months after getting off the drugs, my blood pressure still remains elevated, as I discovered during a check-up yesterday morning.  All my life, my blood pressure levels have been normal until January and February of 2012.  Now it seems something from that episode was changed in my body that cannot so easily be reversed.  After all, I've made several additional changes in my life to be healthier, starting in March or so when I adopted the habit of eating a healthy Whole Foods salad on workdays, and continuing through June when I started attending weekly yoga classes.  This blood pressure thing makes no sense to me. 

The doctor I saw yesterday was my gynecologist, and when she saw the elevated blood pressure reading taken by the nurse, she measured it herself, and got a slightly higher reading than the first one.  She wanted to make sure, so she also measured it again at the end of my exam.  I was calm and relaxed and she witnessed it.  The third reading was the highest, just as when I went to my primary doctor for the blood pressure spike earlier this year.  I hypothesized that taking blood pressure seems to raise it, but nobody confirmed that for me.  My final reading yesterday was something like 146/97, I believe.  She decided she ordered me to stop taking my current birth control pills (Seasonique/Amethia) immediately, since they contain estrogen, and apparently estrogen can contribute to high blood pressure.  This is news to me.  I was also somewhat surprised at the order, since I'd been taking these pills for many, many years now, when my blood pressure was fine.  Perhaps there's a cumulative effect or something else I'm not understanding. 

At any rate, she switched me to a progesterone-only pill while I mull over all of my options and my needs.  What I liked about my previous pills was the ability to minimize periods and their awful symptoms (for me), and being able to predict and schedule around periods.  With the progesterone-only pills (Micronor/Jovilette), I'm back to having less predictable periods and more of them.  I'm also considering Mirena, which my doctor suggested.  There are still some unknowns about whether it's the right choice for me, but I'm still researching that. 

Hopefully, getting off the estrogen will reduce my blood pressure.  I strive to be healthier, but seeing my blood pressure remain elevated through these healthier habit months is a bit frustrating.  I will read up on all the factors that can contribute to high blood pressure and see if I can change any other things for the better.  I do know there is a hereditary component, and my parents deal with hypertension. Plus I'll be 40 years old in a couple months, and age is also a factor.  This old body's not getting any younger, but I only get the one, so I'll do my best to take good care of it.

Success! ...and Stress

To follow up on my last post, I have been pretty good about not "cracking" my right wrist for the past month.  I caught myself on a few occasions, but I think the month has mostly allowed me to break the habit. I still need to pay attention to maintain and not slip back into old habits because it seems to have made a difference in the lightning nerve pains I'd been having in my right forearm.  I cannot recall having any episodes in my right forearm during the past month.

This little experiment is by no means conclusive with regard to a cause and effect.  I realize one month is not a large enough sample time to conclude the not cracking (much) prevents nerve pain, since the episodes can be very infrequent for any number of reasons.  However, it's enough incentive for me to keep trying to not crack and keep watching for other correlations.  Besides, who wouldn't prefer to having some sort of control over these wacky symptoms to just taking whatever luck provides?

That said, I know that my neck, back, shoulders, ankles, and knees all still crack, even if I try not to.  I'll still be as good as I can be about avoiding it if I can.  (Sometimes it hurts if I don't crack my back or neck.)

In other news, my work life has become unbelievably stressful in the past month.  I know it's serious because I'm having asthma attacks at work in addition to all the unpleasantness.  I'm on the brink of breaking down mentally from the pressures put upon me.  I almost had a nervous breakdown during my lunchtime yoga session today!  I would have thought yoga would help, but failing at all the demanding poses just added to my frustrations.  I kept it together by realizing I couldn't easily justify a breakdown to my classmates.  "It's just yoga!" I imagined they'd say.  And they're right.  Yoga, of all things, should not contribute to my stress, and it most certainly should not be allowed to be the straw that broke Benia's back!  After pondering the ridiculousness of it all, I managed to get through it and deal.  I knew I'd be better as soon as I'd gotten through it all and feel the accomplishment.  I did notice a lot of muscle tension and cramping today, though.  Probably due to the work stresses.

I know it's not right to let it affect me like this, but somehow I've gotten myself stuck in a terrible situation where I'm juggling several high-priority projects all at once and the rest of my team is doing the same.  Personally, I think my boss has lost his marbles about what is physically possible, but how does one go about addressing this with the person who controls one's income and other important things?  On paper, yeah - you go to your stressful person and say, hey, please lay off on the stressful stuff please.  In reality, there's a lot of apprehension about doing that, worry about doing it wrong, worry about consequences that affect not only myself but others.  Ugh...  I will have better days.  I just have to believe in that.

I'm doing what I can with what I've got for now.  Hopefully I'll live to post another day...

Sharp Nerve Pains in Left Shoulder and Neck

Lately, I've been working on improving my diet and doing regular exercise.  I've been pretty good about attending yoga and getting out for walks, and have also been good about eating fresh, healthy salads for lunch, and getting nutrients into my diet.  Last Friday, I tried a couple of veggie juice drinks instead of salad, to see if I would notice any difference.  Since watching Fat, Sick & Nearly Dead a few days ago, I gained more hopes that eating nutritious foods could be key to healing the body, or at least give it a fighting chance against the destructive forces challenging it.  There's a lot of crap in our processed foods, and avoiding it should help me.

Anyway, I tried a "Columbia Gorge: Just Greens" drink first. It was green juice made just from organic vegetables and nothing else.  Two pounds of veggies went into the bottle, so I figured it would have lots of nutrients.  It wasn't as tasty as I'd hoped.  Part of it had to do with celery being the first ingredient.  I'm not a fan of celery.  The drink was 50 calories per serving, with 2 servings in the bottle. 

I also tried this "Naked: Green Machine" one, which was the same size bottle as the other one, also contained lots of veggies, but also plenty of fruit.  I figured this one would taste better, so I saved it for relieving my taste buds after the other drink.  I also worried I'd get hungry, so I had both as a single meal.  The flavor of the Naked juice was great. It tastes like it's just fruit juice.  More fruit means more calories and natural sugars though, so I won't be having these regularly.  I believe this one was 140 calories per serving, with 2 servings in the bottle.  However, it's good to know that the option is there if I need some healthy stuff on the go.

There's also a troubling symptom affecting more often lately.  I am noticing a new location of searing, lightning-like, nerve pain on top of my left shoulder, going from my neck out toward the shoulder.  This is the third location of this type of pain that I've had to deal with.  The back of my right thigh is the first and oldest trouble-spot, and the pain jolts I still get in that area (affecting the sciatic nerve) has made me jump and shriek from sheer surprise and the sudden, severe pain level achieved.  When it hits, it usually keeps firing, rather quickly, for several minutes.

When I was first injured in that rear-end collision in 2006, there was about a week or so of the nerve firing almost constantly, and it even affected the left leg in the same area.  It was maddening to try to get through the day feeling like someone was chasing me with a hot brand, poking constantly into the backs of my legs.  I even decided that if it didn't subside, or if it was found to be untreatable and would affect me for life, I would probably have to think about killing myself.  It's not the kind of pain you can ignore.  I was being forced to constantly pay attention to the pain.  There are some dull pains you can ignore or get used to, so you can move on with your life, but this one is not like that at all.  It's a pain that startles you into acknowledgment over and over again, with only the rare second of relief in between jolts. This sicatic pain jolt thing affected me even before the car accident, but only very rarely.  I used to get these jolts maybe one day in a year and then forget all about it. 

Anyway, since the accident, the left sciatic nerve has been much more active, though I have had months without much of a flare-up there.  However, I'd begun to feel a similar jolt of pain in my right forearm.  It would just fire, unexpectedly, at random moments, on the underside of my forearm, right into my wrist.  And it's only been the right arm thus far.  This is the second location.  Here, the attacks would occur only occasionally - much less frequently than the leg thing, anyway.

But now, I've got this kind of pain occurring in my left shoulder-neck area, and it's been firing at least a few times every hour today.  It was doing it pretty frequently yesterday, too.  I also recall having to deal with it during the work week for the past week or two.

I'm confused about what this pain pattern means.  Naturally, I'm worried about some sort of nerve problem or damage, or impingement, and the fact that it seems to be spreading is no comfort at all.  I suppose my frequently spastic muscles could be squeezing these nerves, but with Chronic Myofascial Pain, I've been having problems with a lot or all of my muscles, not just certain ones.  I have considered the possibility that posture and habits could be causing these areas to be susceptible to either muscle spasms, which may be squeezing my nerves.  What I don't have is a treatment or prevention plan, other than to keep moving and stretching as much as I can.  I'm sticking to doing yoga at least weekly, and being sure to move around, even on bad days when I may not feel up to it.

If you recognize these nerve pain symptoms, or have any helpful information for me, please share in the comments.  Thank you.