Hear ye hear ye! May has just been declared as Ehlers-Danlos Syndrome Awareness Month in Illinois by our governor.

Some of us are diagnosed (I have Hypermobility Type, formerly known as Type 3), but there are many others who are not yet diagnosed.

This genetic and incurable condition affects all systems of all tissues in the body, and thus the symptoms are varied and unpredictable. We have many sensitivities and our tissues are fragile and we don't heal well. Many commonly used anesthetics are less effective for some of us and ineffective for others.

Doctors are currently not well trained to recognize this connective tissue disorder (or others) so we rarely get proper care and treatment, and insurance can be even more ignorant with their policies. We have wrongly been told by ignorant doctors that testing shows nothing is wrong, simply because these doctors don't know how to test or what to look for.

Please realize that we don't have the luxury of forgetting about this condition because we typically suffer multiple symptoms at any given time. Understandably, we may be moody,  frustrated, or depressed at any given time. We are trying to survive in this unfair world, basically taking care of ourselves and each other, since we frequently know more about EDS than many of our doctors. We read the studies, share experiences, and support each other as well as we can, just to make it on a daily basis.

We may look like healthy people on the outside, but our joints may easily subluxate or dislocate, causing painful injuries from the slightest movements, and sometimes from no movement at all. We get arthritis at an early age because of the additional wear and tear on our joints. We bruise easily and don't heal well. We suffer various digestive issues. We may have life-threatening allergic reactions due to mast cell instability. We have trouble regulating our blood pressure and body temperature and may feel faint or pass out from various triggers, and sometimes the triggers are unknown.

Please know that EDS is affecting me and quite possibly others you know and runs in families.

Please know that the stranger who is walking slowly ahead of you may be one of us, trying to get by without further injuring himself, even if he has no cane or brace. He is in pain. Do not hassle him if he has a handicap placard and is parked in a handicap spot. This disease is invisible.

Please know that when a coworker needs frequent time off it may be due to a flare up or injury that is causing myriad symptoms that prevent her from being able to live life for a while. Know that she is frequently unpaid for this time off after burning through all of her paid sick and vacation time. She is not enjoying these days off work; she is trying to let her body heal a bit until the pain levels are tolerable enough to work again. Know that she needs the income and insurance more than most, even though many of her specialists and treatments don't even accept insurance. She does not have a lot of options.

Know that when when a passenger next to you on the train or in an elevator is covering his face to protect himself from the fragrances in the air, it is because he is already dealing with plenty of symptoms, and that the fragrance causes instant migraine headaches, nausea, and lightheadedness and he needs to protect himself from these additional symptoms, especially if he is on his way to work and has to survive a full day, and is already at a stark disadvantage compared to many of his coworkers.

Please spread the word about this disease so doctors can catch up and be more helpful, or at least stop putting us in danger of further harm. You don't need to wear a zebra ribbon, but if you can share information and understanding with others, we can hope to get the medical attention and expertise we need to get by in this life.

For more information please visit The Ehlers-Danlos Society at https://www.ehlers-danlos.com/what-is-eds/ .

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.  

New Look for "The Table" Blog

I decided to give my blog a bit of an update.  I had some challenges with getting the right scheme, but I settled on this dazzling one.  I hope you like it. 

In case you're wondering why I chose the zebra pattern for the background, here is a clue from the Ehlers-Danlos Society.

Free Meditation Podcasts

A friend recently shared a link to a good resource for helping quiet the mind. It's a link to the Meditation Oasis podcasts. They are free and easy to use. They are just a few minutes long each, so they are not too difficult to fit into a busy day.  Give these a try.

https://www.meditationoasis.com/podcast/

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!

Ĉu Vi Parolas Esperanton?

I've been learning a new language for the past year or so now! It's called Esperanto and anyone can learn it for FREE now, by using DuoLingo.


The story of why DuoLingo offers a multitude of language lessons for free is very interesting, and is explained in this fascinating TED talk about captchas. Regardless of the goal of the overall project, millions of people are learning languages for free and they get to keep that knowledge forever and do with it what they please. Don and I are two of those people and we have decided to learn Esperanto.

Esperanto is a constructed language, created by a Polish Jew named L.L. Zamenhof. His vision was to create an easy to learn language that could unite the world by serving as the ultimate international language of the world. Until now, only a relatively few people had access to learning anything about this language, much less even heard of it. It's fun to learn and the community is very friendly as well.

We are now nearing the completion of the DuoLingo "tree" of lessons and can have beginner conversations using the language. We practice a little every day online and with each other and it's going very well.

In my enthusiasm for my new culture, I've created a few Zazzle product designs to help celebrate Esperanto and offer a unique way to discover other Esperantists or start conversations and gain interest in this great language, which is growing in popularity by the day. Please take a look and feel free to share and buy my designs so I can make a few pennies here and there. I hope to create more designs in the future.

Take a look at the DuoLingo site and sign up to learn Esperanto or any other language. There are many, many options available, and developers are working on more options all the time, so keep checking back if the one you want isn't available just yet.

Ĝis la revido, amikoj!

Abandoned Fibro Blogs

I just unsubscribed from over a dozen blogs written by fibromyalgia sufferers about their lives with fibromyalgia. All of them have not published a post in over a thousand days. Nothing. Where did they all go?

Several years back, around the time of the great Facebook revolution, I did a brief stint on Twitter. While there, I found a group of fellow fibromites and some of them had blogs. We subscribed to each other's blogs and created our own, (myself included,) exchanging stories and insights about our many challenges. We wrote frequently back then, as there was a lot we had to say.

Maybe it's all been said now. I feel like I'm caught up on all the nuances of this fibro life, yet I still look for news and different perspectives here and there. Once in a great while, I share my own.

This has become clear recently while reviewing my Facebook Memories from years past. I used to post about my pains and health challenges, and sometimes my health victories. Now, I feel I don't want to bore or annoy my Facebook friends with the tedium of my particular collection of health problems. They may not understand what it's like to live like this, but maybe they don't need to.

I have learned that most everyone has their own set of problems. Would I want to read about them all? Wouldn't I start to see certain people as their most frequent complaints? This is not how I want people to see me. I am a person with interests and convictions. I look for opportunities to be more interesting. I am trying to live life.

Hopefully the lost fibro bloggers are all out living their lives and trying not to wallow in their pain. Although I know blogging is a good outlet for dealing with the struggles of living with an invisible illness, I know it can have the unfortunate consequence of limiting one's ability to move beyond that focus.

Today, my advice is to try to forget the bad and focus on the good, the positive. What can you do? What can you enjoy. Be a whole person.

A Long, Long Year, and a Poem

It's been a long, and difficult spring and summer for my husband and me. He has Crohn's, as many of you know, and it has turned his life upside down, starting with an intestinal obstruction with micro-perforation that occurred in mid-March, and resulted in an emergency ileostomy that was supposed to be reversed after 3 months. Since then, it's been one complication after another. He is still dealing with the problems we never knew about until all this happened.

However, as he nears his reconnection surgery date, we have been trying to get his weight and strength back up, and one of the things we have been doing is walking every day. Those walks inspired this poem. I hope you enjoy it.

The Same Old Path by Benia Zouras

Monarch Butterflies and a Bunny

Summer's last gasp brought monarch butterflies to our yard only a few days back. Here, I attempted to get some footage of several of them feeding on our New England Asters, and got an unexpected bonus bunny as well.

The winds of Autumn are blowing hard outside now, but at least this video captures some relaxing quiet time. Enjoy.

Another Diagnosis

I saw my rheumatologist today. She confirmed that my finger bump is very likely the beginning of arthritis, and, unfortunately, there is no treatment to prevent or slow down the development.

I also went to visit my parents after the appointment, since they live near my doctor's office. My dad has arthritis, further supporting the likelihood that I will suffer the same fate. I looked at his hands. His finger joints have prominent double bumps on them, and he has trouble bending them. It's at least a slow condition to develop. 

I am hoping that if I continue to use and exercise my index finger - instead of adapting by using other fingers - that I can retain joint flexibility longer and maybe prevent the bony growth from obstructing mobility a bit longer. This is all speculation on my part. The doctor talked about a topical treatment to reduce inflammation. I still have plenty of Zostrix with capsaicin that I can use if it gets "angry".

I completely forgot to mention the eye twitch (Myokymia) today, but it's almost becoming a normal part of life now, it's been so many months now.

I am also going to try to wean off the one prescription medication that I take for FMS/CMP: Cyclobenzaprine. She suggested halving the dose for a few months and watching out for worsening pain or sleep, then halving again and watching out again, before finally stopping it. I'm going to see if I can do it, since the dry eyes and dry mouth are starting to really bug me lately, and it may also be aggravating my atrial tachycardia (heart palpitations). I notice the episodes tend to occur right when I wake up.

I'm proud to report that my doctor said she wishes all of her patients were like me. I'm glad I'm managing this all somehow.

New Bump on Knuckle + Eye Twitching (Myokymia)

The top knuckle of my right index finger has been a little tender and started "clicking" a year or so ago.  I noticed it while using the mouse on my work computer.  Most of my joints "crack" with pressure, including my knuckles, but this joint "snaps" or "clicks" in a tiny, new way, unlike the other knuckles.  It tends to do this when the top knuckle simply bends, or if is wiggled sideways just the slightest bit.

Yesterday, I looked at my hands and I noticed there is now an ugly, prominent bump on the one knuckle.  See it (circled)?  What the heck is this?

New bump on my top knuckle,
right index finger

I also took a photo of each hand, for comparison.  None of my other knuckles have this bump or pain or clicking.

How do you like my snowy, glittery manicure? :)


When I first went to see my current rheumatologist a couple years ago, she had me get x-rays of my hands and feet, as a baseline to rule out other conditions and prescribe appropriate treatment.  That's also when my possible Kohler's Disease was discovered, though nothing was ever determined about why it occurred or if it signifies anything.  I do remember mentioning the new clicking and pain to her a few appointments ago, but I don't recall any conclusions about it.  With the new bump now, there may be more of a clue about something.

I'm concerned about arthritis, especially since I know my dad is having problems with his hands due to arthritis, and I noticed that a lot of my fibro friends also have comorbid arthritic conditions.

Anyway, I will see my rheumatologist soon, and will be sure to bring this up with her again to see what she recommends.  I'm really hoping I can treat it without adding any new medications to my current list of meds.  Side effects are no fun, especially when I've already got plenty of weird symptoms.

Speaking of side effects, I have been having more eye twitching in my left eye (Myokymia). I'd forgotten I had an episode like this back when I blogged about the x-ray results.  This time, though, my lower lid toward the inner corner of my left eye is the part that keeps twitching.  It's been over a month now, for this bout.  I thought they finally ended a few days ago, but they are creeping back into my daily life again today, even as I type now.

When they started, the twitches would occur several times a minute, which, let me tell you, is pretty distracting.  After about a couple weeks, the twitches slowed down to several times a day, and after a month, I thought they ended.  Now they are starting back up again.  Not sure if this is a side effect of anything, but I will also mention this to my doctor, in case she recognizes anything about it.

Rest in Peace, Bunny

Today, Bunny, my rice sock, was scorched in a senseless act by the rogue microwave at work today. I still needed her warmth, but the smell of burnt popcorn quickly permeated my department, with disgusted co-workers bluntly shunning us. They don't understand what she means to me. I took my poor Bunny home with me.

The heating pad at home took over for a while, but Bunny will be missed. She has warmed my spasming muscles on many occasions, allowing this chronic pain sufferer to bravely press on and continue to "make the bacon" despite the stabbing pain. Time and time again, she has been there for me when others didn't have a clue I was overwhelmed and in a world of hurt. She gave me courage, hope, and most of all, gentle and encouraging warmth.

Rest in peace, my dear Bunny. I will always remember you and how you came through for me in countless times of need. 

Trigger Points Gone Berserk

For over a fortnight now, I've been dealing with some ridiculous knots in the muscles near my shoulders, neck, and upper back. Since it started, I've had two really great sessions of trigger point massage therapy on the troubled areas. I have also used my TheraCane, a tennis ball, my rice sock, my heading pad, hot baths and showers, stretches, pain medicine, and now, finally, rest, as I write to you from my bed today.

It started on my left side, mostly in the side of my neck, down to the mid-back. It has been restricting movement in my neck and just causing this constant, awful pain.

It has gradually spread into more of an upper back problem on both left and right sides. Today, it is settling into the right side of the upper back and top of the right shoulder.

I don't know exactly what triggered this particular flare, but I can look back and see plenty of possible contributing factors, including the ongoing foot tendonitis thing, stress, and weather extremes, to start.  But I also kept going to work and doing things, acting like a normal or something. Why do I keep doing that? I think I have been busted, living on borrowed spoons.  I worked through it until yesterday around noon, when I decided I couldn't keep pressing on. It's a shitty time for me to be off work, but as I tell my fibro friends, I cannot take care of anyone else until I take care of myself first. So I am resting until something changes for the better.

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.  

Reflections on the Table

As the new year begins again, I reflect on last year's resolutions. I managed to get a couple of them done. (Hooray!) However, I piled on too much for myself, which is typical of me, and have a bunch of incomplete goals.  I'm not going to beat myself up about it, because I learned that it's okay.  I did make progress on all of the other ones, which is the whole point of setting goals.  This year, I'm giving higher priority to the old resolutions, with modifications, and see if I can do as well and manage to cross something off in a dozen months, even if I won't be able to cross all of them off.  Progress is progress and I will take it.

Well, winter is definitely on, here in the midwest.  It has been snowing and snowing! Plus we had that crazy "polar vortex" deep freeze a couple weeks back that kept me and many others home from work for a couple days. Knowing how the cold always exacerbates my symptoms, my dear husband has been dutifully shoveling the driveway and sidewalks all winter, without my help.  Thanks, Don!  I very much appreciate it!  

Despite my trying to stay warm, I have had a bit of a setback this week with a flare up that started a couple days ago. My back is apparently very angry that I exercised and kept working all week, so yesterday, it spasmed, painfully, all afternoon and all evening and through the night.  I woke up this morning unable to get up from bed for quite a long time, as the pain in my back raged on.  I knew I'd have to get up eventually, though, so I made my way to my heating pad, which helped.

It's incredibly frustrating to keep trying to be healthy and productive while the Chronic Myofascial Pain and Fibromyalgia keep conspiring to knock me down and punish me for it.  Like many other fibromites, I feel the better days that come along between flare ups can be both a blessing and a curse. The blessing is feeling less pain and feeling less miserable, but the curse is that we all seem to do too much on these good days, because it's our best chance at getting things done.  Then we crash hard because we overdid it.  But, I need to remember that I will have better days and I will have worse days, and it may not make any sense when they occur.  I do what I can to help minimize the worse days and plan for special occasions, but fibro doesn't care. I am still learning to accept that.

Moving on...

I find I'm feeling a little less willing to share my life's details here lately.  It's great to get things off my chest or share things I've learned, but sometimes I guess I just feel more private about things.  Hopefully that's okay with you.  I can't put my finger on it exactly, but it's just how I'm feeling. I have been playing with the idea of perhaps closing up the shop here and ending the blog altogether.  That seems a bit wrong of me, though, especially since I have been such a big proponent of blogging and journaling for anyone with chronic health issues.  

It's good to put things into words, you know?  And whether that occurs online, in a private email to a friend, or in a journal, or even just phrased in the mind, I have found answers to confounding questions, time after time, the very moment I finish phrasing the question.  Has this happened to you?  

For instance, I'll be racking my brain all day about, say, the name of an actor I saw in a commercial or something. After hours and hours of hoping for the answer to come to me, I finally ask someone else and BAM! As soon as I hear myself ask the question out loud, the correct answer pops right into my head. It happens at home and it happens at work.  At work, I have had the answer come to me after phrasing an email just right.  Many times, the email never has to be sent, because I figure it out once I just phrase the question right. I do hate to ask for help, which is why I'm glad I figured out this magical answer-finding tip. 

Anyway, getting back to my possibly quitting the blogging... I wonder who reads my words and if they help anyone. It's okay if this is all just a cathartic public journal for me, too, but I guess if I'd be missed, I might try harder to keep things going. I won't commit to anything today, but it's on my mind.  I have subscribed to many blogs over the years and have noticed that some just... stop. There is no good-bye, no warning, no indication that the author intended to quit or if the choice was made for him/her.  I wonder if those authors are okay.  Most of them just get busy, I know, and that's fine.  The blogging is an enhancement to the rest of their lives, which should take a higher priority.  I guess because I'm aware of how it feels to be a reader of a blog that just dies, I wanted to address the topic while I was still writing, in case I do decide to quit.

Like I said, I 'm still here and I will still attempt to post tidbits of knowledge and experience as they come to me, but if I'm not around for a while, just know I'm exercising my right to change things in my life to make it better for myself.  Stay warm!!

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.