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!

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. 

That Last Straw

Have you ever just had a terrible day when one thing after the next just went wrong?  Maybe it was more than a day.  I've been dealing with some bad news and stressful things happening and they culminated into a moment that, unfortunately, resulted in a mini nervous breakdown, because of that last straw that broke Benia's back. 

Singly, my stressful things weren't that unbearable.  They're no fun, but I can handle them alone.  It's when they all decide to happen together and overlap into an overwhelming mess of crap that I have trouble. 

For example, work-related stress over deadlines, earnings, etc. are also typical of most employed people.  My surprisingly high blood pressure is one more diagnosis for me to deal with.  Major household appliances expiring and requiring immediate action for replacement happen.  Then a loved one's health problems creeping in with a flare-up of unknown severity.  My car's check engine light decided to get in on the action.  Then a health insurance change with serious financial implications was suddenly forced upon us with little time to plan and research.  My asthma was feeling the stress and making sure I noticed it, no matter how much I fought it. 

Then I got a phone message from my parents - people who love me and miss me but have no idea how much strength I muster on any given day, just to get by and pretend I'm normal.  There is also a language barrier, as they are immigrants and I am American-born.  Our conversations are limited to what we can successfully express in the others' comfortable language.  I called back and just mention my having a bad day and before I know it, I'm getting lectured on how I can't possibly have anything to stress over because I have no kids.  THAT was the last straw. 

I could not handle one more thing and yet there it was.  I broke.  It was extremely unfortunate that I broke down while on that call, because without being able to explain that life just took a shit on me recently, I ended up not making any sense at all and ended up seeming secretive.  Who wants to list all their problems to people who immediately judge and compare them to their own standards?  I am not secretive or dishonest.  I just did not have a good way to convey my bad day and explain my emotional fragility.

THEN, THAT phone call added yet another unnecessary straw to my load.  Since then, I've been accused of keeping secrets and lying to cover up some problem that would be catastrophic.  My own parents had two days to speculate the very worst since my breakdown.  Today they made an excuse to come see me so they could find out more.  UGH, I did this so wrong!  They came and we talked.  Their accusations were not helping me.  I did my best to explain that I just had a bad string of luck but that I'm okay.  Nobody is getting a divorce or fighting or dying or whatever other awful things they imagined.  I also told them that I know that they are trying to help and that I appreciate it, but I just cannot take it right now.  They mean well, but the advice I get from them is just SO unhelpful!  If they only realized how much they are just making things worse with their loving help.  Knowing that they cannot understand and that they meant well is all that kept me from losing my mind all over again. 

I need a break, I tried to explain.  I think they got it, but they are far too generous with their advice about every last thing they think I need help with.  They cannot help me.  They make assumptions that I cannot seem to debunk for them.  There are details about my life that I am unwilling to have to share just to get them to stop helping.  Eat this.  Take that supplement.  It works for them.  OMG, just stop.  Thank you, Mom and Dad, seriously, for caring, but I just don't need this advice.

This is how I'm doing.  I will have better days, but not for a while, I think. :P

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.

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.

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.

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!

The Late Call Back as Weaning Continues

Just got a call from my fibro doctor's office - one of the staff told me this:  The doctor "tried to call Friday" so he's having her call and tell me this.  (This is bullshit.  I only have a cell phone and there is no record of ANYONE calling my number Friday, much less any message.  If he tried, he failed to dial my number.)

The doctor recommends taking two half-tablets every day (halving the full dose a little differently than I'm doing by taking one full tablet a day for two weeks) then if side effects continue, he will switch me to Cymbalta.  At this point I lost control and calmly told the girl this was not helpful at all, that this isn't the first time the doctor has let me down when I needed him, and that I cannot trust him and need to see a new doctor.

He should already have in his records that I tried Cymbalta and couldn't tolerate the severe nausea.  I'm not going on it again.  I'm determined to get off SNRIs for a bit so I can judge if they are making any positive impact at all or not.  Why bother with side effects if the main effects aren't even being relieved?  Screw it.

My only problem now is I need to scramble to find a different doctor or else I'll run out of other prescriptions I need.  I'm having a hard time finding someone close enough and good enough to start over with.  Those of you with fibro out there know how hard it is to find a new doctor.  It's like a new job.  Ugh.

The good news is that, since reducing to a half dose of Savella every day, my headaches have been better (not gone, but lots, lots better), my nose hasn't been bleeding as much, and I've been getting some sleep.  I'm still on the first two weeks of weaning, though, and when that's up and I reduce the dose again, we'll see if anything else changes - good or bad.  Stay tuned.

I'm Weaning Off Savella

With two calls into my fibro doctor and still no response, I've made the decision to wean off Savella.  I've also decided to fire my fibro doctor and find a different one to take care of me.  If you remember how my start with Savella went, you'll see why I'm not expecting much from him this time around.  I'm through with his nonsense.

After doing some drug interaction research after Monday's appointment, I learned that the Sinex nasal decongestant spray I've recently been taking doesn't play well with Savella.  According to drugs.com, there is a "moderately clinically significantly" interaction between these two drugs.  Here's the exact interaction wording:

Be careful with SNRIs and other drugs that can affect blood pressure and heart function!

As you can see above, there is a serious risk of blood pressure problems and pulse and warrants getting off Savella and SNRIs altogether, which is my current plan.  Again, I have learned all of this without any help from my fibro doctor.  My fibro doctor was the one who told me to try Sinex for the nasal congestion I mentioned during my last appointment.  What's more, he didn't tell me that it should not be used for more than just a few days - this I learned from my primary care doctor on Monday.  I'd been taking it for a couple of weeks.  This is the last straw.  I can't trust him.

Knowing all this now, it is not much of a surprise to me that I am feeling some relief after having stopped taking Sinex since Monday's appointment, and having skipped my first dose of Savella last night.  My head feels much better today and I actually slept for a change!

Thanks to others who have had to wean off SNRIs and shared the experience online, I have developed a month-long plan to wean off Savella.

The full regular dose of Savella is one 50mg tablet, twice a day, resulting in a 100mg per day dosage.  Starting last night, I will eliminate my bedtime tablet each day for two weeks, resulting in a 50mg per day dosage.  Then I will eliminate one morning dose every two days for another two weeks, resulting in a 25mg per two-day dosage.  It's not perfect, but I'm hesitant about cutting the pills in half right now, as I have not been able to confirm that it's a safe thing to do.  One person reported a worsening of heart problems after taking a cut Savella pill and warned against it.  I will continue to look into this as necessary and watch for those odd withdrawal symptoms.  If withdrawal (or "discontinuation") symptoms become problematic, I will try increasing dosage a bit to reach a happy medium as my body adjusts.  (If you can point me to something about this on the web, please leave me a comment about it!)

With this plan worked out and symptoms seeming to calm down a bit now, I feel a bit more in control of my body's chaotic messages.  This is, of course, not to mention all the "usual" fibro symptoms and pains that I can't escape.  My hope is that, with fewer side effects complicating things, my fibro might be easier to manage.

Things are still stressful, though, because there is a lot going on at work as well as at home.  Lots of projects are coming fast and furious at work because the market is changing and it requires action.  As a member of my company's IT team, I get to be affected by all of these sudden and very urgent changes, even when they turn out to be reversed later due to new information.  It's already happened and it will happen again.  I just need to deal with that.  It's going to be a long year.

A family member's health, though, is also suddenly very poor, but we aren't exactly sure of the diagnosis yet.  He has his own chronic health problems, so the implications of his new symptoms are serious and worrisome.  I am doing my best to stay strong and take care of his needs while my health seems to stabilize, though I also don't know how my body will handle being off SNRIs long-term.

My schedule and fibro doesn't allow me to do much of what needs to be done at home, much less handle all these additional challenges.  I don't have much choice, though, but to try to keep calm and carry on, so that is what I must do.

I'm Blaming Savella

I just got back from an appointment with my primary doctor to address my recent five-day headache and neck pains, sinus congestion, and nosebleeds, as well as crappy sleep that's been going on since Christmas/New Year's.

So yesterday, on day four of this episode, I noticed the head and neck pains have been choosing either left or right, and remain limited to that side at several points on my head: temple, just behind my ear, at the base of my skull, and on my face near my eye or nose.  At any given time, the pain will pick one or more of these locations on one side of my head, and it's been worse at night and in the mornings, with neck pain being very prominent while lying down in bed.  I reflected on this all during the evening, while also noticing that my pain was becoming almost unbearable.

In addition, my nasal congestion issues have been continuing since December 26th, when I thought I'd caught a mild cold, but managed to keep it from spreading to my husband, which seems impossible.  Since then, I've had multiple sleepless nights and many nights of very interrupted and restless sleep.  I've been a zombie version of myself at times and crankiest when morning brings nothing but severe pain and fatigue.

Finally, the nosebleeds have gone from a touch of blood here and there in the tissue to full-blown bloody sprays and red-marker bloody tissue events, including the one from last week that happened at work.

At my last appointment with my fibromyalgia specialist, I brought most of this up, but I hadn't had the headache pattern down then, so it wasn't discussed.  I also mentioned the ridiculously high heart rate I've been having, thanks to Savella, which I started last July.  This is a well-known side effect of this drug, and although he measured my pulse in the office at 104 (normal is about 60), he didn't seem worried about it.  I half-joked that I was using up years of my life to speed up my heart rate.  He laughed.  I decided not to worry, especially since my blood pressure that day, although somewhat higher that normal (I have never had high blood pressure), was still in the normal range.  He reassured me that it would be okay and this was just an annoyance.

Today I learned otherwise.  My blood pressure was taken at my primary doctor's office on both arms.  The first one was about 130 over something.  The other arm was even higher.  Then the doctor came in to talk to me and took it again, himself.  It was 150 over 90.  WHAT?!  Typical normal blood pressure readings for me have been around 100 or 110 over something.  Here are some guidelines about what's normal.

Here's what I know about nosebleeds with headache from searching online yesterday: it can be caused by high blood pressure, among other things.  I didn't, for a second, think that was actually the one causing my symptoms.  Little did I realize, that my body's equilibrium had quickly gotten off track.  As the title of this post indicates, I'm blaming Savella.

I didn't think Savella would be a problem once I'd switched to it (and gotten past all the crap withdrawals of the switch).  Then I started having weird facial flushing.  I figured those would stop, but they haven't.  Then the heart rate increased.  Then the sleep just stopped.  Now my blood pressure is skyrocketing.  I'm even having more tremors from this maniacal stuff.  Fuck Savella!  My head is exploding pain and blood and I can't sleep.  I don't even know if it's helping any of my fibro symptoms anymore.  I want off this crazy drug.

I called my fibro doctor and left a message with the someone there, asking my doctor to switch me to something else immediately.  If I have to, I'll wean off this SNRI and just be off antidepressants, though I know they do help balance out some of the unbalanced things with fibro.  However, I will not take balancing of one thing and unbalancing of others.  That's crap.

Stay tuned for more as things develop.

Oh, forgot to mention that the doctor prescribed Amoxicillin for the nasal congestion, just in case it's infected.  He didn't see anything that indicated infection, but it's worth a shot, since it's been over a month of this stuffy weirdness.  We'll see how that goes.  I have to take a pill every 8 hours for 10 days.