Connecting The Dots...

Although you know about a lot of my medical problems, I think it's important to go over the entire medical history of my struggle to find the right diagnoses. Many people are going through the same thing everyday. It's a terrible thing to go through. It takes forever...lots of pain and suffering before the right meds are prescribed. It's a hard life to live with a chronic pain illness anyway, but getting to the diagnosis is half the battle. 

 

I have Psoriatic Arthritis, Sjogren's, fibromyalgia, CFS, Hypermobility EDS, Osteonecrosis,
Osteopenia, Osteoarthritis, Pseudotumor Cerebri, Endometriosis, and so
much more. I was always a sickly child. I didn't walk until I was 16
mos. I couldn't flush the toilet or turn the door knob until I was 5
years old. I was a dancer starting at a very young age, 2, b/c my mom
thought it would help build up my muscles and strength. I always had
aches and pains since I was a young child, but doctors always thought it was because I danced. Also, the doctors said that my immune system was not fully developed, so I would pick up everything. So I had to be extra
careful around others. A few of my diseases are Auto-Immune diseases,
the others are not.

I was always sick. In second grade, I missed 32 days of school. I would
get strep throat every single time I returned to school. Then I ended up
w/ chicken pox that same school year so bad that it was in the corners
of my eyes, my ears, the bottoms of my feet, etc. My body was covered!

In High School, I had Mono from the Epstein Barr Virus, and was very
sick from it. I had no energy at all. I had heard about Mono before, but
never knew how drained you really felt. It took me 6 months to feel
human again.

Again in College, I had Mono again. It was even worse. I slept through
an entire semester. I was so sick. I didn't eat. I lost weight. It was
awful. I found out that I would continue to get Mono 7 times at least,
each time being worse and worse.

One year I had Mono an Shingles at the same time. I felt like a truck
hit me and put it in reverse to back up over me a second time. Then,
that same year, I got Shingles again. That is when my joints began to
really start hurting me again. I thought it was still from the Mono, but
it just wouldn't go away. I was told that I had Chronic Fatigue
Syndrome, but the doctor said that most medical people don't believe in
it, so I would have a hard time getting treated. I was also diagnosed
with hypertension in 1997. I had a hypertensive storm. It was severely
high--280/120. They told me that it was primary hypertension w/ no
underlying cause.

I got married in 2000, and my hubby knew all about my illnesses, but he
married me anyway. I began having pain in all my joints.The doctors said
there was nothing wrong w/ me, but no one x-rayed my knees or hips or
did any tests on my legs at all. Instead, they did a brain scan to
search for lesions to rule out MS. When that was negative, they no
longer searched for anything physical. They assumed it was
psychological. I was put on antidepressants for depression. I was told
depression could cause pain.

I had horrible reactions to the antidepressants.


We moved to KY in 2002. I didn't have any doctors yet, so I ran out of
meds. I went to see a psychiatrist who said that I wasn't depressed and
shouldn't be on antidepressants. Then I couldn't walk up our back steps.
The PCP sent me to an orthopaedic surgeon who did an x-ray. He found
nothing. But he told me that he had an idea what it was. He sent me for
an MRI. He told me then that my diagnosis was osteonecrosis or avascular
necrosis of both hips. Two months later it showed up on an x-ray. It
was stage 3. One month later, I had core decompression on both hips. The
right hip took; the left did not. I was in a wheelchair the following
year and remained there for 6 months. I had a total hip replacement of
the left hip in Dec. 2003. I was 29 years old. I went from the wheel
chair, to a walker, to a cane. I used the cane for quite a while until I
switched arms and used the cane for the other hip.

I didn't understand why all my joints and muscles hurt so much though if
I had AVN/ON in only my hips. I soon found out that I had AVN/ON in my
knees and shoulders as well, and the shoulders were as bad as the hips.
Then a rheumatologist said that I had to have some type of connective
tissue disease if I had all of these joints involved in AVN/ON. Already
AVN/ON is so rare to begin w/, but to have 6 joints w/ idiopathic
involvement almost never occurs.

I was diagnosed w/ sero-negative rheumatoid arthritis in 2003. Then it
was changed to sero-negative spondylarthropathy
involvement. Then I was also diagnosed w/ Sjogren's that same year when I
found out I had no tear production, and my cornea's had sores on them. I
also had blocked salivary glands b/c no saliva was being produced. I
was put on anti-inflammatories, oxycontin, artificial tears, restasis,
pilocarpine, and an anti-malaria medication (plaquenil) for arthritis.

We moved to RI in 2006, when I was finally diagnosed with fibromyalgia
after having excruciating muscle pain for all those years w/ no relief.
He started me on an antidepressant, hoping for no crazy side-effect like
before, and also a muscle relaxer. It was a good start.

RI was a great place for me to live for a short 9 months. I was finally
diagnosed with psoriatic arthritis when I broke out w/ psoriasis from
head to toe, and I also had a sausage digit indicative of psoriatic
arthritis. I found out later that I had psoriasis when I was a child, so
that would have helped w/ an earlier diagnosis. I also had my
medication changed from plaquenil to methotrexate (a chemotherapy
medication). My fibromyalgia medication remained the same for the time
being.

We moved to GA in 2007. My rheumy there decided that he didn't care what
my medical records said. He took me off all my medications to see for
himself if my joints would swell. I couldn't even believe this was a
real Atlanta doctor. He was even voted Atlanta's Best Docs. In the
meantime, I tried to get into another local rheumy that I heard was a
great doctor. While I waited those 5 months however, I could hardly
move. I also was waiting to get into a pain doctor for the AVN/ON and
fibromyalgia treatment, which also took several months. I had pain where
I didn't even know you could have pain. I had sensations in my body
that I never felt before. I literally prayed to God that I would just
die!

One week before my appt w/ my new rheumy, my elbow swelled up to the
size of a softball. I went to the ER just so someone had record of it
for my new rheumy. They wanted to know at the hospital if I wanted
something for the pain or any treatment, and all I wanted was an x-ray
or mri and written record of proof that my elbow was indeed swollen from
fluid on the joint, that I indeed had synovitis.

I had already gotten in to see my pain doctor by then and was given
oxycontin as well as a medication that works on the central nervous
system for pain for the fibromyalgia called Zonegran. {I actually had
been on it before in 2002, when my optic nerve was swollen. I had
pseudotumor cerebri. No one knew why, but I had severe headaches w/
nausea and other visual disturbances daily. I had also lost some of my
sight. While on Zonegran, it decreased the pressure behind my eye,
causing the pain to go away and my vision returned to normal. I was
taken off the medication after being on it back then until 2003 because I
was told w/ pseudotumor cerebri, after 6 months of treatment, if it
goes away, it won't come back. Well, I noticed that I wasn't really
watching TV anymore, but just listening, then when driving, I could no
longer see the street signs, and then I couldn't tell which way the cars
were facing on one-way streets to know which ones to turn down. Then I
could see nothing, and the headaches returned. The pseudotumor cerebri
came back w/ a vengence. No one understood why, but I was put on a
different medication than Zonegran in 2004. It was called Topamax. It is
used a lot w/ migraines, but it also relieves the pressure. I was just
on an extremely high dose, and I lost a whole lot of weight w/ it.} So
when I went to see the pain doctor and he put me on Zonegran for the
fibromyalgia, I already knew how I would do on it b/c I had been on it
before.

Then I went back to that pain clinic and my pain doctor had left the
practice rather suddenly so I was placed w/ another doctor in the group
who wasn't w/ my insurance. Of course they didn't check on that. I ended
up paying a ton of money out of pocket for an out of network provider.
Then he said I probably needed to up my oxycontin after so many years of
being on the same dose of 10 mg long acting twice a day. He said that
your body gets used to it. I agreed although I wasn't quite sure I
agreed to his decision. He wrote a script for oxycodone 15mg twice
daily. The problem was that this script was not a generic for the long
acting; it was a short-acting medication. The doctor didn't even know
what the heck he was prescribing me. I called the pharmacist b/c I
thought it was odd that it wasn't Oxycontin, and that it didn't say XR
or SR or something like that after it. The pharmacist said it was indeed
short-acting. So I contacted the nurse w/ my concern. He really thought
it was a new dose for Oxycontin long-acting. He apologized and gave me
my original script again. He said he could write me a new script for 20
mg twice a day for the long acting to up the dose. I said "no." firmly
b/c I didn't think I wanted to go up in dose anyway. That same doctor
also said he was going to give me and injection in my shoulder. I waited
w/ my arm out of my sleeve, and he never returned to the patient room.
The nurse came in w/ my fee slip and my script and told me to come back
in a month. He just totally forgot. So I asked to please give me a
competent doctor that was at least in my network. Finally they gave me
the head doctor for the group as my new doctor. One day all patients on
narcotics were ordered to take a urine test to make sure they are
actually taking the drugs prescribed for them. No problem. I voided in a
cup, set it on the counter, and left.

A month later, I came back. The doctor came in and said that my test
came back positive for cocaine and negative for oxycontin. I was
shocked. Obviously, either one of the nursing staff switched it on
purpose or accidentally or it happened at the lab, but the doctor didn't
believe my story b/c he had the results from the lab. I told him I was
going to get a lawyer and everything b/c they didn't even test it
correctly. Drug testing needs to be sealed in front of the patient, etc.
That was not done. I have no idea what they sent as my urine. It was
finally straightened out when I came in a week later and tested again w/
no sign of cocaine and normal levels of oxycontin. It was obvious that
the other urine wasn't mine. They have changed the way they test for
drugs now, etc. The problem is that the first test is already part of my
record. He had to type a letter and put it in my chart stating his
belief that it wasn't my urine. It was a horrible ordeal.

My new rheumy meanwhile started me back on all my anti-inflammatories,
methotrexate, and remicade (an IV infusion for arthritis), as well as
flexeril and skelaxin (muscle relaxers for fibromyalgia). He also gave
me pilocarpine for saliva, the supplements that would be depleted by
methotrexate, and pain patches (non-narcotic). He tested my vitamin b-12
and D levels. They were next to nothing, so he put me on extremely high
doses of those. He did a bone density test as well, which still showed
osteopenia--not quite osteoporosis. He wanted to put me on calcium, but
my bones do not absorb calcium supplements. {Back in 2004, a metabolic
bone doctor tested me out for all kinds of things. He said that I had a
lot of calcium deposits outside of the bone, I also had kidney stones
that were calcium oxalate. He told me that I should cut calcium out of
my diet. Because I had such a low vitamin D, he told me to take vitamin D
supplements instead.} Obviously, the amount of vitamin D that I had
been taking was not enough. Then, when I increased my dose to 2000 IU
per day, my calcium in my blood decreased. It had been incredibly high.
Also, I no longer have the calcium deposits and haven't had any kidney
stones either.

So what I didn't mention was that I also had severe problems w/ plantar
fasciitis, achilles tendonitis, tenosynovitis in my wrists, tendonitis
in my elbows, bursitis in my shoulders, problems w/ my ACL's, my SI
joint, and my neck, and was told that my pelvis looked like it was
crushed in an auto accident.

I've been skin tested 4 times for allergies, and all my allergists have
said the same thing. They have never seen reactions like mine. I am
allergic to everything and w/ a huge reaction. I carry 2 epi-pens and
albuterol. I also have asthma. I have a severe shellfish allergy and
latex allergy--they both cause anaphylaxis. I have many food allergies. I
react to changes in temperatures w/ hives. The sun gives me hives. I
have to have tinted windows on my car. I have so many sensitivities. I
also have endometriosis. I had 2 laparoscopies. I was in menopause for 6
years. I don't even know if I'm having periods or not again, for real. I
was put on the Nuva Ring in 2002, and that is when I began having a
cycle again. Now I keep the ring in to just have 4 periods a year, but I
only bleed for 1 day. So again, I'm not certain that if I stopped the
ring I would still have a period. I had a fertility doctor test my
levels in 2002, and she said I was at the level of a pre-pubescent 5
year old. I'm not even sure what that means. I had periods for years up
to age 21. Then they stopped.

My right shoulder collapsed the day before Halloween this past Oct. I
had to wait until March 29th to finally have it replaced. I have been
working very hard to rehab it. I'm doing very well w/ it, but I'm also
currently in PT for my back and neck, PT/OT for my hands and wrists b/c
of hypermobility EDS, and also using a TENS unit and aqua therapy.

The reason I wanted to share this w/ you is that we all have such
incredible medical histories. Many times we are told that nothing is
connected, and that we have all these different diagnoses. How can one
person who never drank or smoke or did drugs have so many things wrong
w/ them? I was premature. I was born 2 months early, weighing 4 lbs 11
oz. They found nothing wrong w/ me at birth. I believe that I always had
something wrong w/ my immune system that affected immune response to
allergens, and has attacked itself in many ways causing many auto-immune
diseases. I think that they will figure out that a lot more of my
diseases will end up being auto-immune or auto-immune related. So what
about your story? Do you you think there is a connection? Can you
connect the dots?