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

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

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

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

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

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

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

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

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

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

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

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

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

Okay, here goes...

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

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

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

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

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

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

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

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

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

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

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

Another Diagnosis

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

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

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

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

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

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

New Bump on Knuckle + Eye Twitching (Myokymia)

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

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

New bump on my top knuckle,
right index finger

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

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


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

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

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

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

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

Painful Foot Update: Peroneal Tendonitis

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

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

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

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

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

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

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

Painful Foot and Burning Hands

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

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

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

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

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

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

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

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

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

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

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

Snowy Weather

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

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

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

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

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.

Move Around and Feel Better

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

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

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

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

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

FMS and the Mirena IUD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Attitude is Everything

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

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

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

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

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

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

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

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.

Letter to My Future Self

Wow, summer is just flying by! Where does the time go? I can't believe July is almost over.

I have been doing relatively well with fibro, being active, and eating healthier. I still have issues, like trouble sleeping and pain symptoms, but overall, I feel much better lately and have been using my (unpaid) intermittent FMLA time less.

One idea I had been thinking about doing for a blog post is writing to my future self. Many of us write in out journals and blogs about how things are going at the present moment, but even if we don't do it regularly, we may, someday, look back and read an old entry, for whatever reason. Why not tuck in a little message to our future selves?

My message to me, whenever it may be that I read it, and however I am feeling then, follows...

Dear Benia,
I hope you are well. I am doing much better lately. I've been eating healthy lunch salads from Whole Foods most work days, and doing Vinyasa yoga each Wednesday for an hour.

My new fibro doctor is very nice and reduced my medications to just one for fibro, Cyclobenzaprine (aka Flexeril). I am doing well as it helps with muscle spasms as well as sleep. (I take it at bedtime.)

I am currently off all supplements until I need them and doing okay. My IBS symptoms are under control, thanks to my realizing I was getting too much of some fat-soluble vitamins from my diet, and did not need additional supplementation.

Work is busy and a bit stressful at the moment, for both of us, actually. We are hoping to make some positive changes there.

The master bathroom remodel is mostly finished, though we are still waiting for a couple of doors to come in and get installed. The project started in April! I'm just glad it's almost over.

The weather has been extremely hot and dry this year. The summer weather started at the last week of winter, in March. We've never seen anything like it! Many if our native plants are blooming early this year. They are surviving, though, and the wildlife is happy to enjoy it, too. 

We have also been having a lot of freak thunderstorms - almost exclusively. They roll in, pour rain for a bit with plenty of wind, lightning, and even hail. Then they move on and it's back to hot, calm, sunny weather.

It's been a strange year, but I'm trying to focus on the positives. I am going to update my WRAP soon, since I have learned a lot about myself since I created it.

Hope you are doing great. I love you, and don't ever forget that!

Benia

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

Test Results

I had the following tests done to rule out other conditions:

CBC WITH AUTOMATED DIFFERENTIAL
ANA COMMON ANTIBODY SCREEN WITH REFLEX
CRP
ALDOLASE
CPK-CREATINE KINASE
RBC SED RATE
RHEUMATOID FACTOR , IgM, IgG, IgA
URINALYSIS
CYCLIC CITRUL PEP AB
XR FOOT BIL 2V
XR HAND BIL 2V
XR SACROILIAC JNTS MIN 3V

Everything was in normal range except:
1. Urinalysis shows Ketones (40), but normal should be negative
2. Left foot x-ray reveals "Lucent line across the medial aspect of the left navicular bone could be an old fracture or more likely an unfused apophyseal center."  The doctor did a quick search and noted "Kohler disease" is what this is called.  She examined my foot and pressed on the area to look for pain, but I didn't feel anything unusual there.  I guess my bones refused to fuse when I was young.

Additionally, the x-ray of the sacroiliac joints did not find any abnormalities, thus I do not have Sacroiliitis, as my previous doctor clinically diagnosed (and sold me a belt for this condition).

NOTE: My left upper eyelid continues to twitch near the almost constantly throughout the day.  This is day 8 of the twitching in the same spot.  There is a slight chance of cyclobenzaprint causing twitches as a side effect, but I find it strange that this particular twitch has remained in the same spot and behaved the same way for so long. Usually, I get a twitch here and there and it goes away, maybe comes back in a different place.  This is just odd.

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?