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.

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.

Where Does the Time Go with Fibromyalgia?

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

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

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

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

Yes, I blame the Fibrobeast.

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

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

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

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

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

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

Stress and Asking for Help

Work stress and physical Fibro stress.

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

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

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

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

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

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

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

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.

Fibro Fog & Language Problems

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

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

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

huh?

Feeling Pretty Good

Just wanted to post quickly that I've been sleeping much better lately, and have not been experiencing so much pain as my previous "usual" most days.  I've had twitches and headaches and the odd pains here and there (like what's with this TMJ soreness in the right side today and yesterday?), and still get fatigued somewhat easily, but with some pacing and caution, I seem to be doing okay at the moment.  It's hard to remember to notice the days when I'm not dealing with 17 strange pains or other symptoms, but I do believe that it's important to stop and appreciate the absence of symptoms, whichever ones they may be.

Today, I was reminded of the back pain I would typically experience during any given day when I had a sudden, sharp, muscle spasm today at work.  It made me realize that I'd been working more days, and have been feeling more "human" recently.  By that I mean that I can smile, I can walk at a reasonable pace most of the time, and I can talk to people about various topics without being constantly distracted by various pains and discomfort and my next move to try to relieve it.  As a caution, I took a half-tablet of a muscle relaxant and moved around a little.  It seems to have helped, but I feel it wanting to stage a coup.  My awareness of it lurking there will remind me to continue move around a little more than usual to prevent it from flaring up, hopefully.  I've learned so much from my years of dealing with these random symptoms!

This is reminding me, once again, of a task I've been putting off for a while now: update my WRAP.  My WRAP is my "Wellness Recovery Action Plan" and in it, I have details about how to proceed, when my fibro-fogged brain forgets, when I recognize a trigger for a flare-up, a mild flare-up, a major flare-up, and everything in between.  What has worked for me and what hasn't?  This is my reference for me and anyone in my household who may need help figuring out what to do when things happen to a chronic pain sufferer like myself.  It's good to have one just for yourself, too.  But definitely keep it in sight, or it will escape you in moments of need.  Take it from me.  I have forgotten, plenty of times, what I should do next during times of crisis.

Once I make the updates, I'll be sure to share with you all so you can create your own reference.  Having to update the information feels like a kind of a graduation of sorts.  I had limited experience with Fibromyalgia when I first wrote it, but now that I've kind of been around the block and figured out my body a little better, it's time to improve it with more current information.

Things are busy at work, as always, and life at home is plenty busy as well.  I do, however, feel like I am able to do more around the house lately.  My personal to-do list, however, is not getting much shorter for some reason.  I wonder if part of the reason I'm feeling better is that I'm forcing myself to do less after a long workday.  I may have to test that theory out and see if doing one or two things in the evening is safe for me to do.  My energy limits seem to be a moving target, so this will be an experiment.

I'm going to follow my own advice and do just one thing on my list tonight. Wish me luck!

The Chronic Lyme Disease Journey 101

As I mentioned in my last post, I'd just recently been doing a lot of research about Chronic Lyme Disease.  What started it all was a very detailed web page about Lyme that I'd stumbled into while recuperating from what I still am unsure hit me a couple of weekends ago.  I don't remember exactly how I found it, but knowing me, while I was suffering, I was probably searching on my smartphone for possible causes of my odd symptoms and clues about whether or not a doctor visit was warranted over it.

I have known about Chronic Lyme Disease and it's possible ties to Fibromyalgia and other mysterious illnesses only because a friend of mine told me of her successful battle with Lyme after first being diagnosed with Fibromyalgia.  As you savvy readers may already be aware, Fibromyalgia is not technically a "disease" - it is merely a syndrome, a collection of symptoms.  Fibromites like us have a large collection of systemic symptoms and the medical community has only gotten as far as giving the collection a name.  There is no known cause or cure for these symptoms, so our care pretty much consists of treatment of the symptoms that are most disruptive.  Treatments rarely improve things for most of us and, actually, many of us seem to worsen over time, despite our adherence to treatment regimens and habits.  Why?  "Nobody knows."  Or so they claim.

Increasingly, I'm becoming more and more aware of the complex world of Chronic Lyme Disease.  There is lots of information available out there from people who want to help spread awareness and knowledge, but there is also conflicting and misleading information, as well.  Sorting through it all can be confusing and disheartening, but knowing someone who has been through it, though, gives me a bit more confidence in finding the right information and making smarter decisions about it all.

First, I'll go over some of the very basics.  (I'm new to this, so please forgive me if it turns out I've misstated anything, but definitely correct me in the comments so I know.  Any supporting information via links would also be helpful.)

Lyme Disease is a bacterial infection that is carried by ticks and spreads to humans through tick-bites.  It seems the bacteria can cross from a mother to her baby during pregnancy as well.  If a person notices a tick bite, possibly that characteristic bulls-eye rash, and a rapid-onset illness, that person can likely be cured of the acute infection with a few weeks of antibiotics and be done with the entire thing.

What I'm learning about, and what is controversial in the medical community, is Chronic Lyme Disease.  This is when that same bacteria remains in a person's body for a long time, untreated and possibly unnoticed.  It may be dormant or latent, or may be affecting the person very slowly over years, so the person never associates any of his or her health effects with anything to do with Lyme or tick bites or even infection.  Tests for various illnesses usually come back negative, though the person continues to suffer new and worsening symptoms.  (Sound familiar, fibromites?)  Depending on where the infection decides to spread in the person's body, symptoms can vary.  Some organs may suffer more symptoms than others.  The skin, blood, bones, or brain can be affected, among all the other areas of the body.  Needless to say, infections that live in a person's body can do some nasty things to that person.

The controversy is perhaps a bit too complex for me to sum up here, but this bacterium is difficult to study and requires a researcher or doctor to dedicate quite a lot of time and effort to learning about it in order to understand it sufficiently to diagnose it in a person, and treat it effectively.  It can be hard to recognize and many undertrained doctors will miss it or flat out claim there is no infection present.  Another reason for this problem is that the testing that is currently available for detecting Lyme infection or the antibodies to it, are notoriously inaccurate.  False negatives and false positives are common, and most doctors don't realize this.  They might test, see a negative, and quash any further investigation into a Lyme infection possibility whether accurate or not.  This is obviously a problem.

The problem is bigger than most people realize, too.  The ticks that carry this disease used to be thought only to live in certain areas of the eastern United States, and perhaps a small area in Wisconsin.  As specialists continue to collect tick samples from various areas and check them for Lyme, it has become apparent that Lyme is spreading as these ticks are being opportunistic about surviving while other species that may have kept their populations in check are dying off.  It's reaching a lot of areas previously thought to not have any Lyme.  You can't always go by where people live, either.  These days, a lot of us travel frequently and all it takes is one, unlucky tick bite to become infected.  It could happen in one day-trip.  This is not just some rare disease anymore.  It's becoming a silent epidemic and ignorant doctors are inadvertently allowing it to continue to afflict their patients.

Personally, I have not been tested for Lyme Disease (yet).  I have brought it up to my most recent Neurologist, who served as my Fibromyalgia specialist.  The conversation went something like this.  

Me: I'm interested in ruling out other illnesses that seem similar to Fibromyalgia, like Lupus or Lyme.  Can we do some testing for those, for my peace of mind?
Doctor: We can test you for Lupus with an ANA.  I don't think you need to worry about Lyme.  That's only for people who live on the east coast.
Me: Are you sure?  I've traveled to North Carolina a few times, and I have been to Wisconsin woodlands numerous times.  I may have picked up a tick and not known it.
Doctor: Have you ever had the bulls-eye rash?
Me: I don't think so.
Doctor: Don't worry about it.  You don't have Lyme.

(The ANA came back negative, by the way.)

I also visited an infectious disease specialist all the way in downtown Chicago at a prestigious hospital, hoping for someone to take me seriously and just check me for anything my other doctors may have missed.  I basically got the same treatment when I brought up Lyme Disease (except he abandoned me when he got a phone call near the end of our appointment and just never returned).

Since these incidents about a year ago, I haven't thought about Lyme much at all.  In fact, I didn't really think much about it then.  I just wanted something better than a Fibromyalgia, dead-end diagnosis to work with, and since my friend turned out to have it, I thought I should get checked out, but I didn't think it was much of a possibility for me.  When I got dismissed by the doctors for bringing it up, I kind of abandoned the possibility and started to try to accept not knowing how or why I got ill and just deal with it as best as I can.

Then that web page I mentioned earlier in this post caught my attention and kind of hit me in the head with the details.  I was looking for details and was curious to learn about Lyme.  Although it's now old (2004), I am far behind and starting from scratch on learning about this all.  I read through it somewhat furiously, kind of like a hungry reader eats up the words of a juicy novel.  Why wasn't I aware of this?!  Why didn't anyone tell me?  I felt like I was actually understanding things about this disease that I'd until then, really only known a factoid or two about.  (It had to do with ticks and Lyme, CT, and was some weird disease that people over there got.  That was about all I knew before.)  What's worse, it started to feel relevant.  I didn't realize how common this infection had become and how common it had become for Fibro to actually turn out to be Lyme.  None of the Fibromyalgia resources that I trust and read carefully have mentioned Lyme at all, much less hypothesized that Lyme could be the cause we are all looking for.  None of them ever encouraged us to seek out a Lyme specialist and get checked out to at least rule out Lyme Disease.

I read this site from the perspective of, not someone who seriously thinks she may have Lyme, but rather from the perspective of someone who has a friend who went through it all and urged me to check it out for myself, just to be sure.  I was beginning to understand the technical stuff she'd tried to explain to me before.  (Fibro fog doesn't always allow for learning.)  After having read that page, Lyme now seemed a very remote possibility for me.  The more I learn from various sources, the more possible it seems that this might be something I've got.  I'm not convinced I have this infection, of course, but from what I've read, it seems I'm kind of a textbook case of Chronic Lyme Disease.

Today, I'm thinking I can no longer afford to assume that I'm not infected.  This is a serious illness and can kill under certain conditions.  I need to at least learn more about it and pursue an evaluation by a qualified LLMD (Lyme-Literate Medical Doctor).  There is no other option.  If I don't try to find out whether I'm infected or not, I'll never know.  I always tell people that if you are going to regret something, choose to risk regretting having DONE something, rather than having NOT DONE something.  At least you'll know if it was a bad idea, at worst.  If you never do it, you'll never even know if it was a bad idea or not.  So, I'm starting on my Lyme journey.

Since reading that first article, I've visited a few legitimate and helpful Lyme website and groups, asked for LLMD referrals from several sources, read more personal stories from members in all stages of their journeys, and watched a pretty good documentary about the topic, called "Under Our Skin", which happens to be available on Netflix if you have it, or Hulu online, if you'd like to watch it.  (It is less than 2 hours long.)  The trailer is also available on the film's website.  The film features many kinds of patients: newly diagnosed and starting treatment, severely ill, invisibly ill, mostly recovered, untreated, etc.  It also features several researchers and doctors, touched on the science of the spiral-shaped bacteria and the scientific difficulties of studying it (mostly in layman's terms) and the unfortunate controversy and crooked politics that have made treating this epidemic disease so expensive and difficult for most people who suffer with it.  While watching, I jotted down the names of anyone mentioned who might serve as a trusted resource of information or help to me or others looking for help with Lyme.  Many of these names are also listed at the website.  I would recommend watching this documentary as a good start in getting to understand the basics of Lyme disease and what it's like to get tested and treated for it.  The documentary itself has won many awards.  I was disappointed, however, in the lack of information regarding why testing is so difficult and inaccurate, though I'm reading more about iGeneX testing and how that is becoming a more trusted testing tool for Lyme.  I'm still learning about that.

Most recently, I read this national news article about someone whose spouse fell mysteriously ill and embarked on the Lyme journey.  A lot was learned on that journey first-hand, including the hot mess of political nonsense that continues to prevent many innocent victims from getting the care they deserve.  The article I read is actually an excerpt from a longer one, which you can read or listen to at the following link.  It's entitled "Chronic Lyme Disease: It's Time To Solve The Medical Mystery Inside An Enigma" By Laurie McClellan.


From what I've read, the most effective treatment for Chronic Lyme Disease, a bacterial infection that can affect any and every organ in the body, is a very long treatment of antibiotics.  If the bacteria are present, the antibiotics will find them and start to kill them off.  The die-off of bacteria end up having to be removed from the body by way of all the garbage-collecting organs, like liver and kidneys.  Many of you fibromites already know how taxing it can be on your livers to just take the prescription medications we all take to try to keep our symptoms reasonable.  Imagine your liver trying to clean up a very large amount of dead bacteria!  It can drain you in much the same way any flare-up can.  The term for this symptom flare-up that is caused by antibiotic treatment is the Herx reaction, short for "The Jarisch-Herxheimer Reaction".  You can learn more about it by searching the web, as many have described it in both scientific and personal terms.

Whether you have Fibromyalgia, Chronic Fatigue Syndrome, MS, Lupus, ALS, Parkinson's, undiagnosed systemic symptoms, or aren't ill at all, I encourage you all to read at least the abbreviated version of the aforementioned article, watch the documentary, and learn more about Chronic Lyme.  Join the groups online.  Some good ones I'm in through Facebook are Turn the Corner Foundation, which stems from their full website, and Lyme Disease Awareness.  Lyme Disease Association, Inc. and International Lyme And Associated Diseases Society are also good websites to check out and learn more.

"A journey of a thousand miles begins with a single step."

If you have Fibromyalgia, many Lyme patients in these groups will feel your frustration and assure you that Lyme is very likely the cause of your systemic symptoms, as it was discovered to be for them.  Although it's a definite possibility, know that these patients are not necessarily Lyme specialist doctors (LLMDs) or sure that all Fibromyalgia equals Lyme Disease.  But do consider the the fact that many of them were given a Fibromyalgia diagnosis and left to live with that as a final diagnosis, then tested and treated for Lyme and found relief.  Everyone is different and everyone needs to be considered individually.  Treatment has helped or even "cured" many already, but it can be expensive and taxing on the body.  I'm open to the possibility that Lyme is not the cause of my symptoms, but it could be for yours or for someone you know.  It takes time to learn enough about Chronic Lyme Disease and how to go about getting the best testing and treatment available, and consider the risks associated with embarking upon that arduous journey.  But I want to know.  I need to know.  I am going to select an LLMD, make arrangements to set up an appointment and travel to make it, bring my notes and questions, and find out what my options are.  If I don't seem likely to have Lyme, I leave knowing I've checked it out as best as I can and go back to living with Fibromyalgia.  If I do seem likely to have Lyme and the doctor offers treatment, I will try it knowing it will probably make me feel awful for a long time if it works.  I will take comfort in knowing that the suffering will end or ease up and I will have done what I could to minimize the damage.
 
Are any of you on the Chronic Lyme Disease journey, or have you completed it?  How have things gone for you?  What went well?  What didn't?  What have you learned?  Which websites or groups do you find most helpful?  I'd really like to read your comments and please leave any advice you may have for me, a beginner, as well as any of my curious readers.  Knowing is half the battle, eh? 

Exciting, New Flavors of Pain

First off, I'm happy to report that my bout of food poisoning has finally subsided.  :)

After being in constant and varying Fibromyalgia (FMS) & Chronic Myofascial (CMP) pain for almost 5 years now, I'm surprised to find that I'm still experiencing some new, unfamiliar pains.

Having declared (only recently) that I have finally graduated to the final stage of grief - acceptance of my chronic illnesses - I thought I'd figured out how my new, broken body works to some degree. Sure, it's still unpredictable, but understanding the unpredictability kind of helps it be more predictably unpredictable. Words fail me, but I hope you know what I mean. Come to think of it, since Fibro Fog is part of the new me, perhaps these pains aren't really new. Perhaps they are just pains I've had but don't recognize this time around. Perhaps I'd experienced these pains earlier, but I was too new at this chronic illness thing and didn't quite understand what it was. Heck, I'm not sure now, but I have a hunch it's got something to do with FMS or CMP.

At any rate, I'll try to describe how these weird pains feel...

Last night, I was sitting on the couch with Don, enjoying some evening TV. Suddenly, out of nowhere, my lower left pelvic region felt like shards of glass were trying to break through my abdomen to run around the house, screaming. It was abrupt and made me "ow!" out loud, confusing Don as to what he might have done this time. I reassured him that it was nothing he'd done and felt it again. It was odd. I was happy to find that it settled back in and left me alone for the rest of of the night.

Today, I started my day feeling like I'd been run over by a Mack truck, but I still don't know why. I slept, dreamt, and don't remember exerting myself too much lately. (Although who knows what my thresholds are these days?) Eventually, I crawled into the shower and spent far too long trying to make the peppermint Dr. Bronner's soap wake me up or something, I guess. I got ready and drove myself to work. Getting out of the car was challenging, after having stiffened up during the drive (about a half-hour). I walked toward the building feeling sore in every last muscle from my butt down. Interesting, but nothing too unusual. Soreness is a fact of life for me now, even when I don't know exactly what I did to earn it. A few hours later, though, after going about my business at the office, I noticed my neck and shoulders got extremely tight and sore. My back hurts a little oddly too. It's like some package of misfortune has descended upon my upper body. What the heck? I try not to take too many as-needed meds if I can help it, but this seemed to warrant a muscle relaxant.

I'm still experiencing this high-level and sudden shoulder/neck stiffness and pain right now, and the legs are still sore when I walk. What happened? Was it something I did? More importantly, what's next??

I'm due for a vacation soon. Don has become wary of planning excursions with me lately, since he never knows if I'll be up to enjoying things with him, or if he'll end up having to try to enjoy something without me. I am convinced that if I am "on vacation" and not worrying about the usual stuff, my body will be more cooperative and let me have some fun without making me crash. I definitely won't be running marathons or anything crazy, but I think being pleasantly distracted helps keep stress levels down, which in turn, helps to keep my body processing working a little better than usual.

Cross your fingers for me!

Weird Weather and Possible Restless Legs Syndrome (RLS)

So, first a bit of good news... It gets hard to remember to notice the little victories sometimes. That cough I had that caused me some weird pain in my left side is finally done and gone. Also, I have backed off the Baby Steps quite a bit the last week or so (okay, that's kind of bad-ish news) but my tailbone is feeling much better, too. What's funny about these symptoms is that they are so very noticeable and bothersome when they occur, but when they finally leave, they just quietly sneak off and don't say good-bye. I noticed their absence much later than when it actually occurred. Good riddance, anyway!

Here's the latest bad news... It seems the weather has been making my symptoms flare up. We've been stuck in a weird low pressure system for the past few weeks, which has resulted in cold and mostly rainy weather. We've had hail and even a couple snowfalls in the past week! The snow arrived only about a week after we had 80+ degree weather here in Chicagoland. With the wacky weather I noticed more headaches, nausea, more overall pain and achiness, and a new kind of pain that seems to have settled in my legs and feet. I've been calling it bone pain. To make matters worse, I've also been dealing with added stress from work and stuff. Things at work are a bit on the crazy side, as we get closer to a major project deadline. I'm doing what I can to stay ahead of my own work, but I can tell my team is feeling stressed from problems and snags coming up this late and the probability of having to work longer hours to get everything done on time.

Now the neutral news... I had an appointment with my fibro doctor last Wednesday. Due to my fibro fog, I forgot to bring the notes I always bring with me, but I made do with a portable pad and pen and whatever notes I could remember to discuss. The appointment was for 5:40pm and I was on time; the doctor was not. I ended up waiting over an hour before I could have my appointment. (The explanation was a new patient and a thrown off schedule. I am switching back to morning appointments after this.) Anyway, while I was waiting as patiently as I could, I noticed I could not bear to sit still due to the "bone pain" in my legs. I moved them around and tried changing my posture periodically to read and distract myself, but it was no use. After about 45 minutes, I couldn't stand to sit (hehe) any longer and started pacing the waiting area. It's a small area and there were several other patients there, so I hesitated to start pacing and make them feel uncomfortable, but then I realized: it's a pain clinic! Certainly they would understand. Pacing helped my legs, even though it was a tight area and felt a little weird.

When it was finally my turn, the doctor and I discussed the weather affecting my symptoms, my change in medications, and, as usual, the doctor asked me about my sleep. He asked me if I feel refreshed in the mornings, or tired. I blurted out "tired" as if he should have known, before I realized how rude it must have sounded. Since I'd already apologized for having forgotten my notes and mentioned my retarded brain functioning, he was formulating a hypothesis and continued asking me questions. He asked specifically about whether I am moving my legs at night. I wasn't sure, but didn't think so. He asked if my husband complains that I keep him up with my movements at night. I know my restlessness has impaired his sleep quality, which is why I try to leave the room if I'm too awake to fall back asleep (like now). But he's also a very sound sleeper most of the time, so perhaps he's not noticing what I'm doing in my sleep because he's asleep himself. Then, I was surprised to hear the doctor tell me that he suggested I undergo a sleep study to see if I have Restless Legs Syndrome (RLS), adding that RLS is very treatable and could help me get better sleep, and in turn, bring back some of my thinking skills and chase away daytime fatigue.

A sleep study? Me? I've never thought of doing one. Would I be able to sleep at all with all the strange hookups and people watching? Then there was the RLS. I never thought I'd had this, though I knew it was common for fibromites to have. I do know someone who has been diagnosed and is being treated for RLS, but I always thought I'd know if I had it. Now that I've had a day or so to chew on this possibility, I am noticing the aches in my legs cause me to move my legs around quite a bit. As the doctor explained, RLS also entails shifting the legs around to try to find a comfortable position for them, but not succeeding. I thought back and realized that I have a hard time with my legs while watching TV in the evenings as well as at work at my desk. Then there was the incident right before the appointment, which I shared with him. I guess RLS is much more likely than I had realized.

As I type here, I am up due to my waking up and being unable to find a comfortable position to relax and fall asleep. I woke up shortly after 3am and noticed my legs were aching and I was stretching my ankles and trying to chase the pain off with movements. Then I decided I wasn't going to fall asleep any time soon and didn't want to keep disturbing Don's sleep, so I snuck off to do something more productive. I suppose it would be nice if I could at least effectively treat this pain/discomfort, even if that means adding yet another drug to my regimen. As a fibromite, it's rare to have confidence that any drug treatment is going to be effective, so hearing that RLS treatments are helping people is very promising. I won't pin my hopes and dreams on it (yet), but it's a ray of hope for some improvement. I'll take that.

Exercising, Making Friends, and Blog Stuff

Exercising:
I've been slacking on the "Baby Steps" lately, due to the pain in my left side, which I believe is a pulled muscle from coughing strenuously for a couple weeks straight. I did few or no sit-ups in the previous few weeks, and the rest of the workout was stagnating at level 10+4, with my doing some of the other exercises only sporadically.

A few days ago, I decided to see if sit-ups were tolerable with the remaining side pain and gave it a go. It hurts a bit, but I was able to do all 10, so I'm back on track, moved up to 10+5, and I'm doing all of my daily exercises again, starting last Monday. Whoo-hoo! It's hard work, but completing them does make me feel better, mentally.

Making Friends:
In other news, I met an online fibromite friend for the first time last weekend - VinaMist, author of her blog Just Breathe and contributing writer for the online arts journal Escape into Life. She's very nice. We had a great time talking over brunch (once we overcame my fibrofog mishap that prevented me from finding the place on my own).

We had tried to meet up once before, many months ago, but a family emergency kept that event from occurring. I'm glad we could finally get to know each other in person. It's very important to stay social with chronic illness, as it can be isolating. Befriending understanding people with similar health issues can be very rewarding for us fibromites.

Blog Stuff:
One final note: Blogger has announced a new feature for reading blogs in a cleaner format. I've included a link to this new format in my new "Other" page on the main blog. Other pages are still under construction for now, but keep an eye out for updated content on these new pages.

As always, I welcome your comments and feedback, and I'm always happy to make new fibromites friends. We are a FMily. :)

The Fibro ToolKit

Are you prepared for everything that could go wrong during a flare-up?  Do you have what you need as a Fibromyalgia patient?  Do you have a Fibro Toolkit to help you manage your physical and emotional health on a daily basis?

I was only diagnosed 3 years ago, but I've already collected quite a collection of tools and precautions - just in case.

Here's what I have, and what I think every Fibromyalgia sufferer should also have:






A Good Fibro Doctor

It's not always easy to find the right doctor, but if you don't like the one you've got, do what you can to keep looking for and trying new ones until you find one that you can work well with.  A good doctor is one who believes you, listens to you, and understands Fibromyalgia and the various ways to go about treating it.

Even better than one good doctor is a great team of doctors who effectively works together to communicate on the various health issues you need treated.  If you're not happy with your health care providers, move on.


A Library of Practical and Useful Books

Do some research and invest in or borrow at least one or two good resources to look back at from time to time.  Fibromyalgia encompasses a lot of various symptoms and has a lot of overlapping conditions associated with it.  It seems it's never the same condition twice!  As the fibrobeast evolves and confounds you, having a reliable text nearby may help with figuring it out and perhaps calming it or even explaining it to others.

The books I own are:

• Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl & Mary Ellen Copeland
• The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief by Clair Davies, Amber Davies, & David G. Simons

A Subscription to the Fibromyalgia Network News Journal

Like the books above, there is pertinent information that is great to consult for the myriad symptoms that plague us fibromites.  However, the Journal is published regularly and contains shorter articles that keep us updated on new research regarding causes and treatments.  The timeliness of this information is extremely useful and well worth the yearly membership fee.

If you can't afford membership, you can still look here for fewer, but still useful, articles - online and for free.


Useful Self-Massaging Tools

My Thera Cane and Knobble are handy for massaging certain spots, but if you're short on money, find yourself a tennis or other kind of ball or two and an old sock or stocking.  Put the ball or balls in the sock and tie the end.  Throw it over your shoulder and lean agains them on the wall or chair.  Or, they work on the soles of feet or other areas where pressure can easily be applied (without straining).

I also see a great massage therapist every two weeks for an hour-long massage (mainly on my back, neck, shoulders, and face) which helps release the myofascial trigger points I have.


Heat Wraps

Though some people like icing their pains, I find heat to be comforting on my painful areas.  I have worn out a couple of heating pads already and am currently on my third.  It is dedicated (mostly) to my spot on the couch.  At work, I keep "Bunny" in a closable leftover container for microwaving.  I made "Bunny" using a pair of soft socks, a bag of dry rice that cost less than a dollar, a piece of ribbon I just happened to have, and some hand-sewing.  I also have a fancier model that was given to me as a gift.  The shape of it lends itself more to a back or shoulder than the curvier part of the neck.  But "Bunny" is better for that, especially as hands-free.


Pill Organizers

I have two weekly pill organizers that are different colors.  One (white) is for my morning doses and the other (blue) is for my bedtime doses.  I have had to take some medications in the afternoons or middle of the day, but luckily those were temporary.  For those, I kept a supply in my purse and a daily reminder on my cell phone to let me know when to take my medication.  If you have one or more regular maintenance drugs that have to be taken at other times during the day, definitely invest in a third weekly pill organizer or some sort of other effective system to keep track of your meds. 

I fill both organizers at the same time, once a week, and make note of any prescriptions that need to get refilled soon.  Then I refill anything I need online ASAP so I don't forget and run out.  I also have a great system for making certain that I take my pills when I'm supposed to.  At bedtime, I take out both my morning and nighttime pill organizers and place them on the bathroom countertop.  I take the nighttime meds right away, then put the nighttime organizer away.  I leave the morning organizer on the counter until I wake up.  I figure the first and last things I do each day are to visit the bathroom, so I have made taking the meds part of that routine.


Effective, As-Needed Medications

In addition to the maintenance medications I take every morning and every night, I keep a small stash (in a traveling, purse-sized container) of various pain pills with me at all times, in case I need to rely on something to save me from disaster while I'm out.  I have: pain pills, muscle relaxants, headache pills, antacids and gas pills.  I have medication to help me focus for when I need to do well at work but the pain keeps distracting me.  I also keep an allergy medication and my rescue inhaler for asthma emergencies.  In addition, I have sugared ginger cubes in a baggie at work and at home, in case I feel nauseated.


Zostrix HP, Arthritis Pain Relief Cream
Zostrix is a cream that contains capsaicin.  I heard that capsaicin, which is derived from hot peppers, has a natural ability to lower Substance P - the chemical in our bodies that help our brains detect pain signals - with regular use.  Since studies have shown that Fibromites have too much Substance P, I figured I'd give this creme a try.  I don't use it often, as it heats up the area where applied, and my pains tend to wander too quickly to make use of the long-acting effects to be comfortable.  I usually opt for real heat, but use Zostrix when I know I'll be away from heat wraps and I'm having pain flares in more stubborn locations, like my upper back or my hip.


Someone Close Who Can Help You

I am lucky to have a husband who has learned what is most difficult for me and has taken on the burden of doing the more strenuous chores for me, and helping me when I ask.  He learns about the aspects of having Fibromyalgia along with me, as new experiences and information come about.  Without him, I don't know what I'd do.  Every fibromite needs someone they can ask for help and understanding, even if it has to be outside the home.


Fun, Easy Things to Do During Flare-Ups

One of the hardest things Fibromyalgia patients struggle to do is pace themselves by taking frequent rest breaks.  When we do, it's nice to have things we enjoy doing to keep our mind off our worries.  For instance, I like journaling, and I can do that from bed or my "nest" on the easy chair.  There are a couple of books I enjoy reading, too.  Then I've got a sketchbook for drawing (though I haven't done much yet), a Sudoku book (comes in handy in the bathroom), and there are lots of great places to read or be silly online if I'm up to being at the computer.

Pets or stuffed animals can also be fun to rest the mind and relief stress.  Remember to make sure you have things you can easily do in the middle of the night, for those sleepless hours that inevitably come our way.


WRAP: Wellness Recovery Action Plan

The idea for the WRAP came from one of the two books I listed above (the first one).  Bascially, you write out all the things that you should remember to do when you feel a flare-up starting, but probably have too much fibrofog to think straight.  Here's mine.


That's about all I can think of.  What's in your toolkit?  Share your tips!

Making Molehills out of Mountains

I've been dealing with many symptoms lately - some old, some new - and have been a bit run down.  I'm noticing little tasks and chores are piling up on me while I postpone them to rest or try to get comfortable for a while.  I have notes about various things I jotted down while away from the place where I need to do them, reminders about stuff I need to do when not in the middle of doing something else, etc.   The result is a mountain of undone stuff that stares at me every time I sit down at my desk full of papers.

This is about the time I remembered to jot down one more note for myself: "Do just one thing."  Rather than bemoaning the fact that I am so behind on my pile of chores, I am going to rejuvenate myself by picking one task and getting it done and off the heap.  If getting that one thing done creates a productive inertia and I am up to doing more, even better.  But the pressure is off for the session after the first task is done.  

Last night, after I put up the note to remind me to take my own, good advice, I filed a few documents that have piled up in my inbox at home.  It only took me about five minutes to do, but it felt great to finally get that task done.  Once that was done, I checked one of my to-do lists for something quick I could squeeze in before dinner and got that done, too.  Whoohoo!  How could I have forgotten one of my best ideas so easily?  Let's just blame Fibro Fog for that. ;)

When you're in pain, procrastinating a task or two is okay - to a point, but if it becomes a habit, your self-esteem can feed into a vicious cycle of feeling depressed and having more pain.  Conquer that depression by doing one, easy thing that's been nagging at you for a few days (or weeks).  You'll be surprised at how much better you will feel by having even one thing finally be done and off the list.

Thera Cane

Hey, d'ya miss me?  Hee!  I've been busy with life and not blogging much the past couple weeks.  I guess that's a good thing, no?  Anyway, I am feeling guilty about leaving you all with that fat whale picture on my last post, so I'm going to give you something new to chew one: Myofascial pain and trigger points.  

If you're not familiar with these terms, you can read up about them here.  There is also plenty of great info available at various reputable websites and books.  I had been diagnosed with Chronic Myofascial Pain before I even knew what Fibromyalgia was, so after the FM diagnosis, I got a great book (photo and link at left) about both of these conditions within the same person.

About a month ago, I saw my Fibromyalgia doctor for a follow-up appointment.  While I was discussing certain new pains, we talked about my Myofascial pain, trigger points, referred pains, and how to go about treating it all.  He is a good listener and we discuss every last bullet point and question that I bring with me during each appointment.  

By the way, my dear Fibrofriends, I have a special notebook just for these appointments, and I if you don't, you should definitely invest in a dedicated one.  You can write your questions down as you think of them, bring them all with you, then jot down the doctor's responses and instructions on the next page.  This system saves a lot of sanity for us fibrofogged people!

Okay, getting back to the point, I showed him some of the diagrams in my book that showed certain trigger points and their referral patterns, and added that I suspected these could be the source of my recent pains and discomfort.  He didn't claim to be any sort of expert (neurology is his specialty), but he agreed that it was a definite possibility worth exploring further.

The book also references heavily the works of Travell and Simons as the source of all the diagrammed information on trigger points and pain referral patterns.  The sampling of diagrams in the book I had were extremely useful in untangling the mysteries of some of my daily pains, and I was interested in learning more.  I had known of another book that focused solely on the self treatment of myofascial trigger points, but never took the plunge to buy it.  I asked my doctor about it, to see if he thought it was worth getting.  He was very enthusiastic about it and pulled an old first edition of the book I'd mentioned right off his bookshelf.  So, afterwards, I went straight to a bookstore to leaf through this book and, eventually, I decided to go ahead and buy it.

The book I bought is The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief, Second Edition by Clair Davies (pictured at left).  This book is GREAT!  I have decided to sit down and carefully read it from beginning to end, but I have already skipped around to various relevant chapters many times to help treat my own pains, as well as a few of my husband's. 

In addition to the book, I also bought a couple of tools that are mentioned throughout the book to help already sore hands and arms from getting worse due to self-massage.  There are some spots on one's body that are just not comfortable to reach, much less apply pressure, and doing so with bare hands would likely do more damage than good.  I got the Knobble and a Thera Cane.  

The Knobble, which is a hard plastic little doodad that fits in a hand and has no corners or seams in it.  It looks a little like the nipple on a baby bottle, actually.  It went with me to my last two massage appointments and my therapist used it very effectively to put pressure on the knots in my shoulders.  She was thrilled to try it out and will be getting one of her own so she can use it on other clients.

The Thera Cane is a hard plastic small cane with rounded ends and several additional, strategically placed knobs that can be used in myriad ways to comfortably reach and massage all the muscles in one's body.  It comes with its own little booklet of various positions and techniques for common trouble areas.  The Thera Cane was actually suggested to me by that very same massage therapist several months ago, after she had tried it herself, but I wasn't quite ready for it then.  Now that I have it and understand more about the way trigger points behave and what kinds of pressure helps to relieve the pain they cause, I feel armed and ready for the world (at the moment).

I ordered a second book and Thera Cane because I was so enamored with the power they represent to me.  I am thinking of giving them away to someone I know who may need some non-drug pain relief.  

Now a warning: It was in the book and probably in the booklet, but of course I had to go and find out the hard way about this one.  When you get these tools and start using them, don't go overboard and use them too much on the very first day.  I figured all that myofascial release massage I've been getting done the past couple years must have warmed me up for using these things on myself.  Ha!

I had a knot in my left shoulder/neck area that was bugging me and the first chance I had, I grabbed that Thera Cane and applied the pressure on that trigger point spot.  It felt good to press on it without having my hands hurt from the work.  The leverage of the cane's shape definitely made it easier to work that muscle.  It also made it easy for me to overdo it, I think.  The next day, I was immobilized due to intense pain in that very same area, spreading to a larger area involving my back, neck, and left arm.  I was useless that day.  Luckily, it was a Sunday and I had nothing important planned.

The good new, though, is that the following day I was much better, with only residual pain.  I was able to go to the office and work a full day with only moderate pain, getting milder.  The pain was much more vague, no longer concentrated in that knot.  It seems I had dissipated it.  Eventually, I forgot all about the pain that I treated.  My cane is ready at my bedside, but I already haven't been using it much.  I use it when I need to.

It was a great investment and I'm happy to share my story with you all.  It is my hope that you can experience some relief using the knowledge that I have shared here.  As always, I'd love to hear from you about this.  Please feel free to comment.    

Note: Nobody is paying me to endorse any of these products.  I believe in people sharing their experiences for free.  Honest opinions are the only ones that count.

Dyslexia & Dyscalculia

I've been accidentally flipping numbers around at work like mad lately.  I'm finding myself spreading "sorry"s all over the place because I keep referring to the incorrect reference numbers in messages. 

What's up with this? I've never been plagued with dyslexia as a kid.  In fact, math was probably my best subject through high school.  (I aced every year, including the AP Calculus I took in Senior year.)  I can only wonder if this is yet another way my concussioned and fibrofoggy brain has decided to vex me.  With the supposed ADHD affecting my concentration, should I consider this number flipping an extension of that problem?

During my self-analysis, I found this interesting term and article: Dyscalculia. Particularly, I notice "Dyscalculia can also occur as the result of some types of brain injury."  Under the symptoms listing I also notice difficulty with judging time, which I have also noticed in myself lately (or for all I know, maybe it's been going on for years now).  I also noted in my journal recently that I had repeatedly noted the right side, instead of the left side, had been bothering me lately.  Repeatedly.  Who gets left and right confused as an adult?  I guess it could happen to anyone. 

I could be reading too much into this.  I'm one of those kind of people who tries to be vigilant, but sometimes ends up being neurotic.  That's all a matter of opinion, though, right?  Can you relate?  What's your feelings on this?

Beercation 2009 - Photos!

The Fibro Frog strikes again!

I'm so sorry, dear readers.  I recently realized that I'd neglected to share the link to all the photos Don and I took on our Beercation (beer + vacation = beercation) during the very end of 2009.  I see that I posted a little something about it, but the photos were not uploaded at the time.

Well, without further ado, here are all the photos, with my captions added. 

Beercation 2009 Photos

I hope you enjoy them.  As always, feel free to comment, either on the photo pages themselves (via Picasa Web by Google) or here, at The Table.

It's Time for Some Changes

I went to see my neurologist this morning.  Basically, since the end of December, when I last saw him, I had one great month (remember when I was giving away my "spoons"?), and now a kind of shitty month (now it's more like: "hey, brother, can you spare a spoon"?).  

In my little fibro-world, when things are mildly acceptable, I am elated about it.  I get to smile and laugh and joke and even enjoy some things.  But there is some sort of threshold in my pain tolerance - and I guess everyone has one - when I keep trying to just buck up and "make it, Champ!" but end up sort of a quivering mess.  

I know it may seems silly to most "normals" out there that a backache or some jaw pain or some insomnia can cause me to have a major meltdown, but throw a few of these symptoms together, multiply the intensity several times, and leave them to worsen over a period of not hours, not days, but weeks and even months on end of constant, chronic, unrelenting symptoms, suddenly retaining sanity becomes a real challenge.  Throw into the mix the fact calling in sick for several weeks straight is simply not an option, especially with medical benefits for both myself and my husband riding on my performance and full-time status.  Let's just say it's a character builder (and I've got character oozing out of my ears).

Anyway, after a somewhat less snarky explanation of the above, my doctor offered me some options, which I agreed to try.  

Since my Tramadol doesn't seem to be helping me with pain any more, and since there is a danger of serotonin syndrome if I increase the dose and continue taking Pristiq, I'm now going to try Darvocet for pain.  Darvocet, I was promised, would perform much better on all kinds of pain, but it may cause side effects, especially in sensitive me.  After the description, I told him that it sounds just like the "magic wand" I need!

Since the Ambien I've been taking (only 5mg per night) always seems to want me to sleep for 12 hours (no exaggeration), and also since I've had problems properly waking up after those 12 hours (I have these weird, lucid dreams in the mornings), the doctor is having me try Sonata.  He tells me that Sonata will allow me to wake up more nicely in the morning, while still helping me to get to sleep in the evenings and in the middle of the night when I toss and turn from pain. 

Finally, and this one was the most difficult decision for me, because of my severe concentration problems at work and my tendency to be easily distracted, my doctor offered me a prescription for Ritalin.  My job as Senior Business Analyst in IT requires a lot of abstract thought, sometimes with multiple steps having to be played out in my head before taking action.  I've always been a diligent worker and am proud of my career progress.  However, at times I feel like a completely different person, trying to do Benia's job.  All it takes is one, quiet side conversation, whether it's about work or personal stuff I don't even care about, I cannot help but hear a word or two, then POOF! - situational amnesia sets in.  I can't remember what I was doing or what I was about to do, or why I picked up a pen or what I wanted to type or anything.  I stare and stare at my workspace, hoping something will come back to me.  Sometimes, it does, but other times, I have to let it go and do something else until I find my way back to it.  

That is so unproductive, and since I tend to have a lot of tasks assigned to me (as the expert or specialist, or person assigned to a project, etc.) I become this bottleneck for projects.  When my whole department has to delay a software release because I'm two days behind, I feel the stress.  I'm not a slacker and I can't tell what my coworkers think of me.  Not all of them know or understand about my health problems.  Well, at any rate, because this is such a big deal to me, I decided I should try the Ritalin, once and for all, and see if it's good, bad, or doesn't do anything for me, just so I know, once and for all.  The Ritalin is not replacing anything I'm already taking, so, unfortunately, this is adding to my mix of drug treatments.  However, if it helps, it will make a world of difference for me.

Each new drug will be tried one week after the previous one, so I can judge its effectiveness without having to guess too much which drug is doing what to me.

Wish me luck.  If you're a fibromite (or someone who has had a concussion, like I have), and you've tried any or all of these medications, let me know your experiences.  Every patient is unique, but I'm interested in knowing what they did or did not do for you.

Out of Order

I've noticed that, lately, I've been catching myself messing up some of my very important routine tasks.

This morning, I woke up seeing the contents of my open closet very clearly.  After the initial "wow, I can see pretty well" moment, I realized I'd slept with my contact lenses still in.  I don't do that.  I always take them out every night, with very rare, but always intentional, exceptions.  They are monthly disposables, but I still take them out and soak them each night, as I have dry eyes (as many of us fibromites do) and frequently feel irritation in my eyes.  The nightly refreshing helps a little bit.  This time, however, I got into bed without having realized that I'd completely skipped this step in my nightly routine.  I also noticed I was wearing my t-shirt.  I usually sleep naked.  Again, I do this with rare, but always intentional, exceptions.  This time, it was just completely overlooked that I'd left my shirt on for bed.

My nightly routine is a very complex sequence of events.  I have devised this sequence to help me ensure that each step is completed.  Over the past months and years, I've been using the same sequence, and it's been working fine... until lately.

Here's what I do each night before bed:

1. Check for / remove jewelry (one ring, earrings) and contents of any pockets (usually a tissue or two, sometimes my cell phone).  I put these away in their places immediately.
2. Use the toilet and wash and dry hands thoroughly.
3. Remove contact lenses for nightly soak in solution.
4. Fill my jelly jar with water for my medications.
5. Use a Pond's cleansing cloth to remove any makeup from my face.
   
6. Remove all night time medications from my basket and set on the right side of the counter (at the near edge of the counter).
7. Remove the morning medications from my basket and set them near the clock on the right side of the counter (at the far wall).
   
8. Use one inhaled medication (Serevent, for asthma maintenance).  Set near the morning meds, for a morning dose.
9. Use the other inhaled medication (QVar, also for asthma maintenance).  Put away in the basket for the following night.
10. Open the appropriate day of the week in my blue, nighttime medicine organizer while making sure I am on the correct day, and put all five meds into my hand.  Take each pill, one by one, with the water from my jelly jar glass.
11. Put the blue, nighttime medicine organizer back into the basket for the next night.
12. Move the jelly jar glass to the morning meds area on the counter for the morning.
13. Apply a gob or two of GenTeal eye gel into each lower eyelid.  Place the gel tube back into the basket for the next night.
14. Floss, if necessary.  (I don't always floss, but every few days is good.)
    
15. Take a swig of mouthwash, swish a bit, spit. (I like Tom's of Maine Peppermint.)
16. Squeeze out some toothpaste onto my toothbrush (Tom's of Maine Peppermint) and brush my teeth thoroughly.
17. Apply a dab of petroleum jelly onto my lips for the night and leave the bathroom.
18. On the way to the bed, the clothes come off and I climb into bed.  

After all that, I sometimes get distracted with other minor tasks I want to jot down before sleeping, or some computer task I want to do quickly, or I climb into bed and pick up my journal and review my day's experiences and symptoms.

Somehow, despite my fibrofog working constantly to thwart me and make me appear idiotic to any witnesses, I have successfully managed to keep to this routine and get it all done, mostly without thinking much about it.  Lately, however, I am troubled to realized that things are not running so smoothly on the Benia nighttime routine train.  Sometimes I do things out of order and miss steps, and of course it does not become apparent to me until it's too late.  

Is this it?  Am I losing my mind now?  Should I say goodbye to the last semblance of control that I thought I had over my body?  I don't like this feeling.  There is still some kind of me left inside this brain of mine, no matter how funny I sound when I try to speak or do stuff.  I noticed some interesting movements in the kitchen this morning, during breakfast preparations as well.  Heading to the fridge and not knowing what I wanted from there.  Walking away, wondering if I really meant to go to the cabinet next to the fridge for crackers?  No, it was mustard - it WAS the fridge.  I had to say it outloud so I wouldn't forget it by the time I'd opened the fridge door!  Plus I wanted my witness to remind me in case my thought escapes again at the worst moment.

I'm not ready to be stamped as senile or some sort of idiot.  Thank goodness I can still type some sort of sense down.  The luxury of time is not given during live action verbal communications, but here in my safe haven, I can type and retype and correct and change and think as long as I need to before delivering the final version of my perfected message.  My new dream for income is to involve my writing skills and allow myself the time to spend to make sure it is how I want it.  I don't yet have a plan, but it's bouncing around in my head as an idea.  Besides, if I ever get too slow-thinking for my dayjob, it's good to have a fallback career idea to try.