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.  

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.

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. 

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.

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

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!

Weird Myofascial Knots, Flare-Up

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

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

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

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

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

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

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

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

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

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

Blood Pressure - Still High Despite Getting off Savella

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

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

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

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

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

Sharp Nerve Pains in Left Shoulder and Neck

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

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

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

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

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

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

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

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

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

The Mack Truck is Back

So I had two good weeks without many symptoms, feeling good and in control of things with diet and exercise happening and everything.  Then Monday, something started up and I'm flaring up for some reason.  Was I too greedy with doing things while feeling good that I triggered a flare by being too active and not resting?

Last night I was awake all night.  Not so much as a nap came over me - all flippin' night.  I tried relaxing in bed with ear plugs, without ear plugs, tried lying on my back, my sides, tried thinking of pleasant things.  Nothing.  Hours and hours of stressful thoughts about various things going on at work that have been bothering me lately kept creeping back into my mind and and I could not fall asleep.  The stress broke me.  I don't know what it is about the middle of the night, but I felt so hopeless and frustrated.  I moved to the couch and read blog posts in my Google Reader on my phone to try to take my mind off things, since I'd given up on sleep.  Forget work today.  There's just no way.  I am a wreck.  I took a much-needed sick day.

It seems my abdominal area is tender and painful lately, mostly near the left side.  Air bubbles or ulcers  - I don't know any more.  It doesn't seem to matter what I eat, unless the tiny bits of apple I found in yesterday's fruit started something, but I picked them out.  (I'm allergic to raw apple skins.)    I just feel crappy.  Then there's the back spasm in my right side that came back to life.   Even the hydrocodone I took at bed time wasn't helping that.  I wonder if the medication kept me up instead of making me drowsy.  Side effects don't always make sense in my body. 

I've been trying to stay on this side of the sane/crazy borderline, but last night I think I wandered over the line a bit.  My mental state seems back in good enough order, but my body is stuck in physical disarray at the moment, and notice that it affects my thinking a bit.

As always, when I stay home due to illness, I can't help but feel the invisible pressure of all those chores and tasks I have to do.  There is some compromise where I go and do a couple of easy things, but I have a hard time just resting, which is what I need to be doing.  For instance, I have been meaning to update my WRAP and wish I would do that, but I know I should not be at the computer too long with this spasm screaming at me.  I washed up our farm veggies (we have them delivered weekly from a local CSA, Wellhausen Farms) and made a healthy salad for lunch, but it took a very long time, and I was tempted to just grab something like cereal and leave it all undone.  Despite all the healthy ingredients in my salad today, my belly is also complaining again and uncomfortable.  I folded some laundry, too, because I knew it would nag at me if I didn't.  Despite my fatigue, I cannot rest easily at all.  This is one of the common frustrating symptoms of Fibromyalgia.

I hate that I can feel so great, then shitty, so quickly.  It makes me feel bipolar in some ways.  I was hoping I could coast through the summer feeling almost like a normal.  I guess I had forgotten my limitations again and overdone it with activities.  I will learn from this flare, just like with every flare, but I'm not enjoying this lesson.  Ugh.  Time for me to lie down.  I hope my next post is more fun than this one.

Getting Too Much of a Good Thing: Supplements

I think I've finally broken the spell of my latest IBS flare-up!  I was headed down one path, but switched gears when I thought of the second path - the one that just might be the answer.  Let me explain...

As you may know, despite a welcome increase in energy and function, my belly has been all about IBS for the past month.  I got tired of waiting for this flare to calm down, since it's been causing me problems every single day for all this time (even through my recent vacation in New Orleans) so I finally broke down and ordered an herbal remedy.  It's called Iberogast.

My niece recommended this product to me after our great GI doctor (she also recommended him to me and he's great) recommended it to her.  I thought I'd give it a shot and see if it changes anything.

When my husband saw how much alcohol is in it (31%), he joked that it would be cheaper for me to use Jägermeister instead.  I scoffed until I started wondering what kind of ingredients are in "Jäger" and did some research. 

There are 56 ingredients in Jägermeister (vs. the nine herbs in Iberogast) and many of them are a secret, but considering both Jäger and Iberogast are from both Germany, and have both been touted as effective digestive aids, I have to wonder if both might be equally effective.

Anyway, Iberogast comes in a small, glass bottle with a top that releases the fluid in drops, so you can count them for appropriate dosing.  Adult dosage is 20 drops into a drink with each meal, as needed.  I took this with five total meals during just a couple days, with no change in my symptoms, before I stopped using it.  I had intended on giving it at least a full week's trial before determining anything about its efficacy, but before the second day was through, I got an idea about what might really be causing my symptoms, so I switched gears to find out.

My hunch was that perhaps my body was trying to rid itself of excess vitamins and minerals.  Too many nutrients?!  It seemed crazy, but the more I learned about fat-soluble vitamins and digging into my Calorie Count food log history and nutrition analysis, the more plausible this seemed to me. 

I'd been taking a lot of supplements every day for a while now, some per my previous doctor's recommendation, some per my own conclusions about what I need:

• multi-vitamin (includes iron)
• vitamin C
• vitamin D3
• super B-complex
• magnesium malate (twice a day)
• calcium
• fish oil
• probiotic

Several weeks back, I started eating more nutritious lunches during the work week and eventually decided to get my lunch from the nearby Whole Foods Market every workday that I could.   I loved getting delicious, nutritious food every day and not having to worry about dinner or weekends as much.  It worked out great, I thought.

I checked the analysis tool in my Calorie Count food logs (good thing I had this handy) and saw that many of the nutrients tracked were well over 100% for the day for me, on average.  Vitamin C was ridiculously high (>1200% average per day).  Vitamin A was very high (>300%).  Calcium was high (~150%).  I was even getting more iron than I needed (~200%).  Who gets that much nutrition in a day?!  Well, me, I guess.  I don't even know how much vitamin D, vitamin B, or magnesium I was getting.  Those nutrients aren't even tracked in CC, but since I was adding these supplements to my nutrient-rich diet, I wouldn't be surprised if they were crazy high, too. 

So, reading up on vitamins and nutrients. I learned that some vitamins, like vitamin C and vitamin B are water-soluble, so getting more than enough is no big deal - the kidneys flush them out and you flush them down when you go pee.  (What a way to waste vitamin C!)  But other vitamins, like vitamin A and vitamin D, are not water-soluble, and the body can get too much of them.  I also know that magnesium is an ingredient in epsom salt and other laxatives.  So I wondered if all these supplements, or even just one of them, could be causing my body these daily diarrhea episodes.  To find out, I was going to skip just the magnesium, but I decided to stop taking ALL of my supplements, just to see if anything changes.

I stopped taking them last Thursday and haven't taken any since.  By Sunday, I noticed a change: no poopie all day!  I was hopeful that this meant the end of the diarrhea, or at least a break from it.  I still experienced a crampy few minutes this morning, after breakfast, but later today, I actually had a regular movement.  I was so glad I wanted to tell people at work about it and celebrate... but of course I didn't.

Nothing's for sure, of course, but these are positive signs that I'm on the right track with this vitamin thing.  For now, I'm glad I was able to put this together and elicit a positive change myself.  I will wait and see if I continue to get relief by avoiding vitamins I apparently don't need, thanks to my healthier diet.  I guess the takeaway here is that you actually can get the nutrients you need from food and you can get too much of some nutrients.  Pay attention to what you're eating and if you have a mysterious IBS flare while eating healthy foods, consider quitting the supplements to see if it helps.  If not, there's always plan B, whatever it may be for you.

Doctors Make Hall of Shame List

Wow, I just read this article, featuring a hall of shame for a bunch of fibromyalgia doctors with a definite conflict of interest between taking care of their patients and helping pharmaceutical companies make more money.  Not too surprisingly, one of my former doctors made the list.  (I am in Illinois, so I'll let you guess who it is.)

Although, to be fair, despite my husband referring to him as a quack, I must say that the drug he put me on was not one of the big three - he was the one who put me on Pristiq.  This was several years ago, before his suburban Chicago office that I was visiting was suddenly shut down.  At the time Savella wasn't even approved yet.

Also, his big thing at the time was the theory that FMS was really just a yeast overgrowth condition gone systemic.  He convinced me to go yeast-free for 3 months.  He actually prescribes this avoidance diet for 6 months, but we had to stop at 3 because I'd lost so much weight on it.  However, I felt worse on it and we concluded that it was not my problem.  He claimed I was the first patient who didn't improve on this diet.  Sorry.  Really, I did my best to make sure I didn't cheat so I would know if I had any control over my symptoms.

I also didn't like how how simplified FMS to just two basic symptoms: pain and fatigue.  I got a hold of a video of his about the whole yeast overgrowth theory for Fibromyalgia patients and kept repeating that "pain and fatigue is Fibromyalgia."  As a patient, it got irritating pretty quickly.  What an oversimplification!

As the article mentions, some of these doctors used to be about the patients, but since then have gotten mixed up with suspiciously pro-drug company studies and such.  Even my last doctor seemed okay until he pushed me to switch from Pristiq to Savella.  Ever since then, I felt I was on my own.  He didn't call me back while having horrendous withdrawals during the initial switch, and he didn't call back when Savella was causing my blood pressure to skyrocket and my head to ache all the time.  They must have gotten to him, too.  I left him after weaning off Savella by myself.  BY MYSELF!  I had a doctor who had nothing to do with me while I was in crisis.  No thanks and good-bye.

My current doctor is very nice and she reduced my prescriptions by substituting two kinds for one, old one, which is available in generic form, which translates to cheaper for me.  She listens to me and my needs.  She respects my desire to be on fewer meds, due to side effects causing more problems than my Fibro, it seems.  She's good.  I worry though.  Does everyone have a price?  Am I going to go in there one day and see a different side of her?  I sure hope not, but I'm on the lookout for those subtle cues.

At any rate, since then, I've learned lots from Fibromyalgia Network, including the fact that all their funding comes from membership fees - none is from any advertisers.  They publish lots of interesting articles and study findings in their quarterly journals and, although some of them credit doctors from this unfortunate list, most of them seem to make good sense.  There is lots of advice about how to cope and do stretches and exercises that are beneficial for us.  A lot of the scientific stuff is broken down with graphics that help us understand how chemicals can get out of balance or how drugs affect our bodies.

Be your own advocate, fellow fibromites.  Look out for those who seem to be helpful, then push products on you.  There's no shortage of sleazebags out there willing to prey on desperate people in pain.  If someone is selling you something, be skeptical.  Do your homework and learn as much as you can from many, objective sources.

Great Overview Video of FMS

Today I came across a great video.  It's a doctor giving a presentation about Fibromyalgia.  He describes what it is, what it isn't, how it's diagnosed, how it's treated, what patients experience, how Fibromyalgia pain has been studied and measured to be different than in other people.  There are detailed descriptions of many topics and lots of tips on treatment (especially non-drug treatments) and I even learned a few things.  At the very least, my foggy brain was reminded of things I'd forgotten I knew.

As I watched, I found this video to be a useful educational tool for both Fibromyalgia patients and their loved ones alike.  Direct people who are confused about FMS to this video, especially to certain areas relevant to the questions that perhaps you cannot find the right words to explain.  It's an hour and a half long, so if they really want to know, they'll watch.  That said, you may need to take breaks and watch it in manageable chunks.  I also suggest keeping a pad and pen nearby, for any notes you may want to jot down for yourself. There is also a question-and-answer segment at the end as well with questions from the audience. 

I've been diagnosed for over four years now, and have been experiencing chronic pain for over five years.  Having read and learned so much since then about Fibromyalgia, I must say that watching this overview was a great review that kind of puts all the pieces together nicely. 

I realize, though, that not all aspects of the condition are mentioned in this presentation.  For instance, pacing and stress are briefly mentioned, but not given as much time as they might deserve, if relating the portion of time in the video vs. importance in a fibromite's world.  He also doesn't go into great detail about every last symptom that might be grouped into the syndrome, though he picks several of the big ones.  This is a pretty detailed overview of the condition with what we know about it now.   Hopefully we will learn more in the coming years about the cause and better ways to treat or (dare to dream) cure it.

I hope you enjoy this video and learn something from it.  Share as needed.  I also hope that friends and family members of Fibromyalgia patients, and perhaps others in the medical community or general population, will watch at least some portion of this video and try to understand this confounding syndrome which, even Dr. Gross admits, doesn't really belong in any particular medical category because it affects everything.

Fibromyalgia: It's Real It's Manageable What You Can Do

Eye Twitch; Flexeril and Symptom Update

Since yesterday morning, my left, upper eyelid has been twitching intermittently throughout the day.  It's nothing I haven't experienced before, and it's pretty mild, but it's still happening right now, and it makes me self-conscious when I'm talking to people, though it's not a big deal if they see it.  Everyone's had this one time or another.  I just wonder how long this stint is going to last.

According to several web pages about this, I need to rest and relax more.  (Unwindsday, here I come!)  I have been getting much better sleep since getting off Savella, though I've had some odd back-of-the-neck pains that wake me during the night.  It's a stiffness kind of pain that restricts my movement and I have a hard time getting comfortable.  I don't know what that's about.  It's a bit scary at the time.  Everything seems more scary in the middle of the night for some reason.  Maybe my brain is not ready to think properly then.

I am going to visit my new rheumatologist this Thursday to find out all my lab test results (12 tests) and see if we can learn anything from them about why I'm experiencing Fibromyalgia.  I'm also going to let her know how I'm doing on the new drug she prescribed, Cycolbenzaprine (generic for Flexeril).

With the new medicine, things started out a bit weird - the first night I used it, I woke up about an hour after bedtime, wide awake, and was just this side of believing that I might realistically die that night.  I have no idea why.  Perhaps my heart was racing or something, but I felt somewhat out of control, different.  I lay there awake, pondering the impacts of death.  It was very weird and it's stupid to think about now, after the fact, but I did really believe it.  Finally, after some time, I convinced myself that perhaps this flavor of crazy was brought to me by my change in meds, and that the side effect may be something mental.  I fell asleep and was fine in the morning.  I lived to laugh about it.

Mostly I think the new drug is fine, it just made me feel a little anxious or something like that the first few days.  I've been having headaches, too, almost daily for several days now, but I'm not certain it's the drug.  It could be due to hormonal, since it's period time for me.

I've been experiencing some nerve pains recently, which tend to occur somewhat less frequently, and yesterday I felt a little puffy in the face, which is not a usual thing for me.  That could be allergies affecting me, though, since my throat is a little hoarse today and I started sneezing and sniffling a bit yesterday.  My allergies are LOTS better this year, though, compared to others, thanks to my years of desensitization injections.  Finally getting the payoff for all that!

IBS is behaving nicely lately and I am able to feel kind of human overall these days.  (That's the real test for how I'm doing.)  It's been a couple weeks now and I am okay, for the most part.  Various symptoms come and go, as usual, but at least I'm no longer taking sleeping meds AND a muscle relaxant - just the one drug now.

The warm weather is helping me to move around more.  I'm taking more walks and getting more exercise, but I'm still having a hard time in between bouts of energy, when I feel worn out and confused.  Hopefully the ups and downs will start evening out soon.  I am having trouble getting the pacing right and am still overdoing when I am able to.  :P  I need to update my WRAP, too, since so much has changed since I last updated it.  I'll post a link to that once it's been revised.

Starting Fresh

I just saw my new Fibromyalgia doctor today.  She is a Rheumatologist, recommended by my niece, who also has Fibromyalgia.  It was overall a pretty good experience.

Despite the distance I have to travel to see her, I think she is going to be a good choice for me.  She was very attentive, spent plenty of time asking me detailed questions about my symptoms and finding out which ones bother me most.  She asked about my diagnosis, and it turned out she knew the doctor who diagnosed me, as well as my current general practice doctor. 

Anyway, since my previous doctors didn't do any comprehensive testing to rule out anything that might explain the FMS, she worked up a list of comprehensive tests to do to check for several conditions.  After examining me and giving me the dreaded tender point test and checking out my hands and feet for signs, she decided to add some x-rays to the test list as well.  Get that?  X-rays, not CT scans or MRIs.  The least expensive but effective option for initial investigation.  (Can you tell I've been medically abused?)

I was able to get all of those tests done today, while I was in the neighborhood, since the testing facility is near the doctor's office and they already had the electronic order on file.  (Finally, paperless transactions!)  The place I'm used to going for testing requires the doctor's paper order in my hands when I go for testing.  Forget them!

I got blood drawn at the lab, peed in a cup, and then got my x-rays all done.  All that and I didn't even have to process any insurance crap or even show my ID to anyone, unlike the place I usually go for testing.  Bonus: the lab girl looked at my arms and said they both look "good" for drawing blood.  Huh?  I had to stop her right there and tell her that it's practically a joke that my arms get double-poked for blood or IVs.  She had no problem.  One poke and it was nice and easy.  She was humble, too, saying that being dehydrated can make it hard to draw blood.  I'll keep that in mind, but with all the times I've had it done and it went horribly wrong, I think she deserves some credit.

Getting back to the doctor's office, the staff there seems like an efficient bunch, too.  For starters, when I got there, they had lots of papers for me to sign, but not fill out.  (When your hands shake and hurt when writing, you learn to appreciate things like this.)  Everything was pre-completed with my information and I just had to double-check it all and sign.  Everything was correct, too.  They are even taking care of transferring my file information from my previous doctor to this one, with a single form I completed and signed.  Any previously done labs or notes will be available to my new doctor soon.

Oh yeah, my new doctor is having me try a different muscle relaxant to try to replace both the mediocre, chalky, bitter one I am on now AND my sleep medication.  She wants me to try taking this med at night to do double-duty as a muscle relaxant for my muscle spasms and to help me sleep, since it can cause drowsiness.  Once again, I'm pleasantly surprised to have a doctor try to reduce my prescription medications, rather than pushing whatever is new.  What's more this drug has been around for a long time, is reliable, and is available in generic, so it costs me less than a newer, name brand drug would.  On top of that, I'm replacing another prescription, so I'll get further savings there if this all works out.  If not, I can always go back to using the sleep meds or trying a different plan.  Bonus: the doctor asked me for my favorite drugstore and sent the order electronically to them.  I picked it up on my way home.

I will be seeing her again in a couple weeks, after trying the new prescription and all the lab results are in.  We will discuss whatever is uncovered by the testing and start fresh.  If nothing new is uncovered, we continue to treat my Fibromyalgia as best as we can.

I am Off Savella!

This is just a quick update to let you all know that I managed to successfully wean off Savella on my own, during four weeks of graduated dose reductions.  I have been Savella-free for several days now and all seems to have gone okay. 

I have been feeling much better off it than on.  I've been sleeping a LOT better lately, the nasal bleeding has stopped completely, I am not getting as many headaches, and my heart beat seems a bit more reasonable and less distracting.  I'm not sure the pulse is much lower, but it will probably get better with time.  I don't get the distracting thumping as much, either. 

As for my blood pressure, I'm going to get that re-checked this Friday at my follow-up visit to my general doctor.  Hopefully it's back to normal by now, since the symptoms of high blood pressure seem to have gone away.  I'll report the numbers as soon as I get them.

I am going to see my new Fibro doctor this Tuesday, since my last one has used up all of my patience and trust.  She will be managing my fibro symptoms on a regular basis and prescribing the maintenance medications as needed as well.  (Although I'm off Savella, I still need to take other medications.)

As for picking a Lyme specialist, I haven't decided anything on that just yet.  I'm still researching my options.

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? 

Terrible Weekend

I finally made it into work today after spending the last three and a half days in bed.  I am tempted to think I jinxed myself with my last post, turning my frown upside-down on Friday.  Something happened to me right after lunch Friday and it was just a very bad weekend-plus-a-day for me.

It started with explosive diarrhea.  (Hey, shit happens.  It's my forum and I'm going to be frank here, so I hope you can handle it.  That's about as TMI as I'm going to get for this one, though.)  I spent a lot of time in the bathroom Friday afternoon dealing with that.  I finished up my work day and drove myself home, exhausted.  Once I got home, I was relieved and planted myself directly into bed with all the covers over me in my clothes. I was cold and I couldn't seem to warm up, though I don't think I had a fever because I never felt hot or unbearably chilled, just cold.  I probably warmed up some, though, because my chest hived out in a rash. 

Cholinergic urticaria rash on my chest, from my own body heat

For a minute I thought I was allergic to something I ate - maybe soy, maybe sushi - but after I thought about it, I realized that I get heat rashes like this.  I have cholinergic urticaria. My stomach felt beaten up so I didn't eat dinner.

Saturday morning, I tried breakfast, thinking I might need some nutrition, but I developed crampy, abdominal pain soon after eating, so I avoided eating much Saturday and just continued to rest and drink water while staying social with online activities via my smartphone.  I had a small, simple dinner of peanut butter and banana on bread, which was small and not too hard on my belly.

Sunday, I woke up with a headache.  It was the icky kind that I had a few weeks back, when my blood pressure was through the roof and my nose was leaking blood because it apparently had nowhere else to go but out a hole in my head.  I wasn't sure what to think.  My belly was a bit better, but my head wanted to pull me into the center of the Earth and flatten me.  I'm almost finished weaning off Savella, so I didn't know if it was a withdrawal symptom, a side effect from still being on it, or unrelated to it and maybe all about Friday's possibly tainted lunch.

I was useless and laid in bed.  I couldn't even imagine reading or looking at my phone for fun activities.  I was miserable.  I tried to relax and sleep.  I managed to nap, but only after those all-too-familiar starts to fully awakened consciousness, even before ever falling asleep.  This was happening in the pre-sleep stage.  I don't know what that is.  There was no noise, no dream, no reason for these moments that I could understand.  I guess something in my body really flips out when I try to sleep when it doesn't want me to.  When I got to sleep, I dreamt something irritating that made me feel a little cranky and remember awakening suddenly - for nothing.  Again, there was no startling moment in the dream or any noises to wake me.  It was all some internal burst of WAKE THE HELL UP NOW that I cannot comprehend.

Anyway, by Sunday night, I was able to enjoy a great home-cooked dinner made by my husband and didn't feel sick to my stomach afterwards.  At least I had that victory.  I also thought my headache was on its way out, but it seems to feel temporarily better WHILE eating, but then comes back again after I'm finished eating.  What is that?

At any rate, I hoped Monday morning I'd be all set without a headache and ready to work.  No dice.  Woke up feeling awful!  I gave up hope of going to work when I realized I couldn't fathom moving from the bed.  I wanted my headache to fade away, but it was very slow to do so and stuck around through the night.

This morning, the headache was small enough for me to move around a lot better, so I went to work.  I wasn't quite myself, though, but I notice that being around people helps me forget a bit and allows me to become distracted by work or personal chit chat or stories.  I also noticed that my voice decided to leave me.  If the past is any indication, my vocal cords atrophied from disuse over the past three days and now I sound like some kind of elderly smoker.  I will try not to let it bother me and just keep using it, so it can strengthen.  In the past, I mentioned how awful my voice had gotten but people always say they don't notice, so I guess I shouldn't worry.  Could be worse, I guess.

So, I'm on the mend from whatever the heck happened Friday, wasted a weekend resting and not having any quality time with my husband, but at least didn't have to take more than one day off work to deal with it. I'm also progressing toward my last dose of Savella, which will be on the morning of March 9th, if all goes well.  In addition, I've been learning lots about Lyme Disease and a possible connection to Fibromyalgia, and will be posting more about that soon.  There is lots to learn, but it is worth looking into.  If Lyme is causing my Fibro, I can at least try the treatment that has cured many already.  Stay tuned for more on that.

Thanks for sticking with me through this detailed post!