My EDS; POTS Story
Hi, everyone! All my fellow
EDSers, friends, family and those interested in learning more about EDS,
welcome back. :) Thank you for your patience, as it has been some time getting
this blog up and running, as well as getting myself on a path where I am able
to put time and effort into it.
It has been a long couple of years, and a long
2009 so far. My health has been poor, and I am sure you are all in the same
boat, for the most part. It seems with EDS there is a constant battle of trying
to cope with so many things simultaneously, that I don't have a day where I am
ever at 100%. Most days, for me, I am dealing with many random issues, and they
all take a toll on me. From dislocations and subluxations, to IBS or
gastrointestinal issues, to migraines, achy joints, shooting and stabbing
pains, bursitis, TMJ, the chronic muscle spasms by my shoulder blades, the
irritating pain that accompanies every step I take, the sore fingers, the
constant fatigue, irritability, tachycardia, blood pressure dropping every time
I move, lack of energy period, blah blah blah....we all know the symptoms. And,
for me, they have consumed my life as of late. Especially the last couple of
years.
First, I think it will be beneficial to give you a bit of background on
me and my journey. My entire life I have dealt with the physical and emotional
symptoms of EDS. Whether it was dislocating my knees during dance practice,
staying home from school with chronic migraines, having low energy compared to
my peers, feeling my heart race every time I took a shower - I had all of these
strange symptoms and knew there was something 'wrong' with me from a very young
age. My family didn't think much of it, they just knew I was always sick with
something, and I was teased for being a hypochondriac. My doctors told me a
range of things could explain my symptoms, from growing pains, to stress, to
psychological problems. Mostly, I was told there was nothing wrong with me. I
knew that wasn't the case.
With every year came new symptoms or progressive
symptoms. Finally, in 2004, I decided enough was enough and I wasn't going to
take 'no' for an answer. I set out to find any doctor that would listen, and
after a long list and a lot of office visits, I ended up in Dr. Ashu Mehta's
office in Anne Arundel Co., Maryland. He is a rheumatologist, so down-to-earth
and calming, and was not only willing to look at my case with open eyes and
open ears, but after just 5 minutes in his office, he was clearing his desk and
breaking out books trying to get to the bottom of my problems and get me a
diagnosis. He recognized immediately that there was something wrong, and his
first instincts told him that I had either Marfan's Syndrome or Ehlers-Danlos
Syndrome. We broke out the medical books and he performed the beighton scale test
on me to determine if I was a candidate for a hypermobility syndrome.
(see
Beighton Score chart here: http://www.shoulderdoc.co.uk/article.asp?article=645)
I
scored an 8 out of 9 on the chart, and possessed most of the major and minor
criteria listed on the chart. This meant, for certain, that I was hypermobile.
From there, Dr. Mehta sent me to the genetics clinic at Johns Hopkins
University, one of the leading genetics clinics in the country, and one of the
only places that focuses on such connective tissue disorders. This was 2005,
and I was seen in the genetics department headed by Dr. Levy. During my time at
JHU, I was seen by a team of doctors, residents and specialists. I was stripped
down to my birthday suit and was poked, prodded, measured, scanned, EKG,
echocardiogram, and brought into a room where my diagnosis was confirmed:
Ehlers-Danlos Syndrome, Type 3/Hypermobility Type. All of the other types of
EDS, the diagnosis is a bit more specific in that they have narrowed the
testing down to a specific gene. They have not yet figured this out for type 3,
and therefore, they diagnose off of clinical evaluations, family history, et
al. With my diagnosis in hand, I set out to figure out the best course of
action. Physical therapy, drugs, doctors and more doctors....The diagnosis was
a long time coming, and finally gave me some answers, and also many more
questions. This was just the beginning of the journey to where I am today.
In
the next few years, I proceeded to follow my heart and attempt some very mild
tries at holistic healing/alternative therapy. I also listened to my head,
which landed me in specialists' offices many days out of each month. I tried to
mix the alternative therapies (which I was so 'green' to) and take the meds
that the doctors were shoving down my throat as well. I did several years of
physical therapy, which did not help all that much. I slowly got worse as the
months turned to years. I went from being in pain only some of the time, to
being in pain all of the time. I went from being a flight attendant, to not
even being able to work a desk job because of the pain, joint issues, etc.
There was even talk of injecting my knees with chicken cartilage, which to a
vegan like me, was not an option. I went off of the medicines, which weren't
working, and went on new ones. I wore the braces, I tried the creams, I changed
my diet a bit. Between the years of 2007 and 2009, at present, I have seen
physical therapists, pain specialists, rheumatologists, orthopedic surgeons,
general doctors, endocrinologists, cardiologists, psychiatrists, psychologists,
counselors, and then some. I have spent so much money on doctors and medicines,
and thankfully, for most of these two years I had decent medical insurance,
which helped immensely. But, through all of this, the doctors still have not
found a place where I am comfortable and my pain is under control, they haven't
found a way to help that is anything worth mentioning. The medicines just don't
help. My liver is probably terribly damaged from being 27 and having taken so
many painkillers all these years. I haven't found solace in my treatments as of
yet.
In addition to the EDS, in 2008 I was diagnosed with POTS (postural orthostatic
tachycardia syndrome). For years, I have had 'problems' with my heart. For what
seemed to be no apparent reason, at random times, my heart would beat wildly
fast, as though it were going to explode out of my chest. This would happen a
lot when I was showering, doing physical activity, etc., but over the last
couple of years it started happening even during my down time. I would be
watching TV, reading a book, doing some super light gardening, and all of a
sudden my heart would race like it was in a marathon. I am definitely not a
marathon runner. While this may sound inconsequential, there was a lot that was
happening because of it. First, I would become very dizzy. It would become hard
to breath. And, it would wear me out for hours. An episode would last for a
couple of minutes, but leave me tired and out of breath, feeling as though I
just ran 10 miles, for the rest of the day. It was getting so bad, that I would
pass out upon standing, my vision was blurry. As the years went on, this became
worse and worse, to the point it was affecting my ability to work, stand for
any length of time (concerts, amusement parks, even just the line at the
grocery store), my ability to drive, etc.
The POTS has become more of a
nuisance than the EDS itself. I have chronic pain from the EDS, but I can't
even stand up with the POTS. After pressing the doctors again to figure this
problem out, I was put on a heart monitor for a month, 24/7. They agreed that I
had severe tachycardia, but no arrhythmia. The cardiologists sent me to get a
tilt-table test at Eastern Virginia Medical School's heart hospital in Norfolk,
VA. They are the only heart-only hospital in the country, and are connected
with EVMS' other facilities, which have been a big help to me over the last
couple of years.
During the tilt table test, they did just that - put me on a
table, strapped me to it, hooked me up to monitors and raised the table to an
80 degree angle, basically putting me in the position that any person would be
in if they did something as simple as stand up. Then, they monitored me and
took vitals every 5 minutes. It was obvious right away that my vitals were not
where they were supposed to be. I became dizzy. My heart was tachycardic,
racing like crazy. My blood pressure was dropping. Everything was getting
blurry. I was feeling nauseous. And then, boom: BLACK. I passed out. They
dropped the table back down, injected me with something to bring me to
consciousness and told me the results: POSITIVE. Just from standing up, simply
going from a laying position to a standing position, my blood pressure dropped
to 50/30 and my heart rate went up to 173. Yikes!
In the end, I was told I
have POTS. It is a side condition that some people with EDS develop. It is
likely caused by the stretchiness of blood vessels, lacking the proper
connective tissue structure they should have, therefore they are unable to
squeeze and push blood throughout the body when I move. Normal people's blood
vessels are constantly compressing and decompressing in order to compensate
one's movements. Mine don't function properly. Ugh! With this diagnosis, after
several trials, my endocrinologist was able to find me some medicines that
helped a bit. They didn't make things perfect, but they brought me from a zero
out of ten, to perhaps a four out of ten on the manageability scale. In
addition to taking those, I have to be very careful to read my body's signals,
never stand for long periods (take my wheelchair to events where there is a lot
of walking or standing), wear compression stockings all of the time (my granny
stockings!), and take it easy.
For more on POTS, see my in-depth post on it by
clicking here.
With
the EDS and POTS taking up the physical side of things, the bipolar disorder
and PTSD take up the emotional/mental side of things. I was misdiagnosed in
2007 with having severe depression, but was properly diagnosed later in 2007
with bipolar disorder, mixed episode type. Also, from years of physical,
emotional and sexual abuse, I have PTSD (post traumatic stress disorder), and I
have only actually been attempting to deal with it for the last two years. I
have been on a whirlwind of medicines for the bipolar disorder, as well as to
help with the PTSD. I am open about this on my blog for two reasons: I want
more people to be aware of mental illnesses and help get rid of the stigmas
that come with them, and I want to share my story in case it helps anyone else
deal with any of these horrible illnesses. I don't mind talking about them if
they can help someone else in any way.
With all of this said, I am here, in
mid-2009, at a turning point in my life. I lost my health insurance in the
beginning of 2009. This was significant - not only did I lose the ability to
see the doctors I need to, but I also lost the ability to pay for my
prescriptions. I have been fighting a disability case since the beginning of
2008. I was denied twice, and now am in appeals with an attorney, hoping to get
the judge to agree that with the combination of EDS, POTS, BPD, and PTSD, it is
quite impossible for me to be able to work enough to make ends meet. The POTS
alone should be reason enough, and my doctors have all documented and agree
with this - though, the federal government and the state of Virginia have yet
to agree. I will hopefully get in front on a judge in the fall of 2009. Until
then, I am unable to work full time, and if I were to attempt to, I would
disqualify my disability case. So, for now, I have no full-time income, no
health insurance, and no ability to treat my illnesses conventionally.
Along
with finding out all of the health problems I have over the last few years, I
have also been on a great journey to find 'me.' I have become comfortable with
myself, at 27, and accepted who I am. A bit left of center, a bit colorful, and
a lot of kind-heart and passion. I want to meld who I am inside, with the way I
look at my body and mind, the way I focus on my health care, etc. This seems to
be the perfect opportunity to do so. I am in a place where I have no choice but
to make some changes and really focus on making myself a better, more healthy
life. I have had some ‘revelations,’ if you will, the last few weeks. I am
taking control of my body and mind – all that they are and all that they
aren’t. The doctors have yet to find ways that really help, and the meds are
too expensive. The total cost, without health insurance, for the four major
medicines I was on, not including vitamins, etc., is now over $2,000 a month.
And most of them aren't at the right levels or working enough to make a
difference. The only one that was helping, for POTS, is $900 a month by itself.
I have to deal simultaneously with the EDS, POTS and bipolar disorder. I am now
taking back my body, getting control of it in a way I haven’t ever done. I have
spent hours and hours researching alternative treatments, eastern medicines,
supplements, diet changes…this list goes on….and, I decided I am going to take
the plunge and just dive right on in.
I am writing about all of this to help
those of you who are looking for a more natural way to treat your EDS. I will
be writing about all of the things I try, and what results I am getting out of
them. Perhaps, you too, will one day take a more holistic approach to your
health, or maybe even just find a certain alternative medicine that helps ease
the joint aches or the IBS. So, please join me on my journey to a better body,
mind and spirit. If you have any questions, please just email me.
I will make
a great attempt at keeping up with this, and making sure to note each new thing
I try. For now, I am slowly going off of the medicines I am on, and dealing
with the withdrawals from them. I will be doing this for another week or so,
and then I am going to do a fast. I will write about all of this as it is going
on - and you can follow if you are interested! After my fast, I will start my
new 'medicines'...lots of herbs, supplements, diet changes, etc. I will write
about all of these as well, and go into detail about the info I find and the
results I see, good and bad. (And, the disclaimer: I am not a doctor, and do
not recommend you do anything I do unless you are under the supervised care of
your physician. This goes for this post, and any other posts on my site.)
To
each of you with EDS, may you have a pain-free weekend, or as pain-free as
possible. Love and peace to everyone on this beautiful planet. And, thank you
for being patient while I situated myself the last couple of months. Now that I
am on my new journey, I hope you will join me.
You may also be interested in
the following posts:
My Symptoms
•
My (yes, all me!) symptoms
from EDS, POTS, bipolar disorder and PTSD:
•
Chronic pain (as with most people who have
EDS-HM) in the following: neck, spine, back, shoulders, elbows, wrist, hands,
fingers, hips, pelvis, legs, knees, ankles, feet, etc.
•
Bursitis (currently in both hips) and
tendonitis (elbows)
•
Dislocation of joints (my worst are my
knees and shoulders)
•
Subluxation of joints (slipping, almost
dislocating, but not completely)
•
Semi-thin skin that tears easily
•
Extremely long healing times
•
Easy bruising
•
Slight scoliosis in lower back and a
'forward-neck' (neck curves opposite of how it should)
•
Sensitivity to latex (hives or rash, not
breathing issues)
•
Allergy to adhesives
•
Tape will rip my skin, so NO tape for
blood draws, surgeries, etc.
•
Insomnia
•
Restless-Leg Syndrome (diagnosed thru sleep
study)
•
Decreased sexual drive (though I went
through a period craving sex as a way to connect and receive "love,"
which I have since come to learn was due to sexual abuse)
•
Irritability
•
Memory Loss
•
Anxiety
•
Chronic fatigue
•
Bruxism (grinding of teeth, especially at
night), TMJ Disorder
•
Joint dislocation during sleep
•
Nerve compression in hands (similar to
carpal tunnel pain)
•
Knee: recurrent patellar dislocation
(knee-cap dislocating) and patellofemoral joint syndrome (PFJ) (dull ache
behind knee cap, pain in surrounding soft tissue)
•
Weak ankles, dislocate sometimes,
pop/click always, pain after standing/walking, etc.
•
'Knock-kneed' - foot and ankle aligned
wrong, alignment of muscles and bones in legs try to compensate, creating
imbalance and more pain, thigh bones rotate in creating more problems (ortho
said if this gets any worse it will require surgery to realign the bones in my
legs)
•
Clumsy
•
Slight aortic dilatation (needs to be
monitored by echocardiogram yearly for possibility of aortic aneurism - so far,
just ever so slight and of no worry to cardiologists)
•
Tachycardia (crazy heart palpitations)
•
Orthostatic hypotension (blood pressure
lowers when changing positions, moving)
•
Dizziness
•
Passing out (black out - sometimes I am on
the verge, sometimes I actually pass out)
•
Severe headaches
•
Migraines (with nausea, vomiting, blurred
vision, spotty vision, pain)
•
Eyes - 27 with a cataract in right eye!
(which will eventually need to be surgically removed), astigmatism in left eye,
need glasses for reading, computers, night-driving, dimly lit rooms, movie
theaters, etc.
•
Gum disease
•
Mild asthma, especially with allergies
•
Chronic IBS and other gastrointenstinal
problems
•
Chronic UTIs, leading to some bladder
infections and kidney infection
•
Scarring on skin is weird - my scars
become strange and thin and spread out. Also, everything scars - even paper
cuts! - but, most scars spread out and aren't super noticeable, very odd
•
Mild musculoidal pseudo-tumors on elbows
•
Bone loss - until you are after menopause,
they just refer to it as low bone density. My levels from my DEXA are all that
of osteopenia (pre-osteoperosis) and one level is right on the border of full
osteoperosis.
•
Mild arthritis in knees and shoulder,
shown on xray (I would bet in my fingers, too!)
•
I have been told I have fibromyalgia as
well (my grandmother has it) - though, so many symptoms seem to overlap. I have
been treated for this sort of simultaneously.
•
Definitely have issues with the sleep
-> mood -> energy cycle (I will talk about this in another post)
•
I have also been diagnosed with Chronic
Fatigue Syndrome
•
Mania (extreme enthusiasm, energy,
passion, easily distracted, irritable, mean)
•
Depression (no motivation, sleep too much,
withdrawn, sadness, despair)
•
Suicidal thoughts and attempts
•
Nightmares
•
Night-sweats
