This document is meant to serve as the introductory posting to my "Living with Fibro" blog. In order to understand my life today, you
first need to know the history of the challenges I face with not just Fibro, but also the many other associated illnesses I have, because each one
impacts on one another.
When I was 17 years old, I was diagnosed with endometriosis but I was too young to have it
corrected. I thought that was kind of curious: I was old enough to have the condition, but not old enough to have it corrected?
I had been suffering with excruciatingly painful periods from the time I was 12 years old and the number of
pain-free days between my periods was becoming non-existent. I was also dealing with migraines,
asthma and numerous allergies that from time to time were very difficult to control.
In 1973, I underwent extensive surgery to "clean me out" and remove the damaged tissue of the
endometriosis, a procedure which allowed me to get pregnant.
My beautiful daughter was born in 1975.
But the endometriosis persisted, and in 1978, I had a hysterectomy to remove my uterus
and put an end to the ravages of endometriosis. I woke in recovery choking and thought I was
finished. The nurses surrounding me assumed I was complaining about the pain on awakening and
they were trying very hard to reassure me that I was OK, I had just had surgery and everything would
be fine; I should just relax. I was panicking, trying to tell someone that I couldn't breathe -- but
because I couldn't breathe, I couldn't talk. Finally, the nurse at the foot of the bed recognized that I
was changing colours and she put out the alarm for immediate assistance. That nurse literally saved
my life! It turns out that, because of my asthma and the various steriod treatments that have been
used for my numerous allergies, I have lost the ability to breathe when given an anaesthetic.
Within a year of having the hysterectomy, I presented to my doctor with generalized pain and fatigue
that couldn't be explained. He told me that I had "fibrosis" and I would have to live with it. I was a
single parent of a very bright, active 4-year-old daughter who kept me on my toes and it was
becoming increasingly difficult to keep up with her.
Throughout the years, I suffered debilitating migraines that often lasted for days and they responded
to nothing. My daughter quickly learned that when Mommy had a headache, she didn't even know
her own name. When I finally discovered the benefits of Feverfew, I took it religously because it kept
the migraines under control and when a headache did break through, it wasn't as severe and it
responded to whatever prescription I was using at the time. Eventually we found that Maxalt RPD
worked best to stop my headaches in their tracks. Today, I use Topamax instead of Feverfew on a
daily basis to prevent migraines; and I keep Maxalt tablets handy just in case one breaks through.
In 1982 , I had bunions removed from both feet and to this day, if something falls and lands on my
left foot, it feels like the surgery was just done yesterday!
In 1988, I experienced a series of epileptic seizures and I was hospitalized for what was eventually
determined to be "ideopathic seizure disorder." I have never had a seizure since, but I continue to
take anti-seizure medication (Topamax).
Over the years, the pain and fatigue continued to get worse and by 1993 my right hip had started to
ache so badly that I often couldn't trust my leg to support me. It was diagnosed as bursitis and we tried
cortisone injections -- three times. The third one was supposed to be attempted with imaging but
when I arrived at the hospital, I discovered that "imaging" meant first injecting contrast dye. I am
allergic to contrast dyes so the doctor had to give it his best guess. He must have hit the right spot
because I saw stars! The relief lasted about four days. Since the cortisone did not work, my doctor
wondered if maybe my hip pain wasn't from bursitis but was just another manifestation of the
fibrosis.
During this period I met the man who would become my husband and in 1995, I moved from Ottawa
to a rural community 45 minutes west of there, living in a wonderfully remote setting which perfectly
suits my "loner" personality. My social circle increased significantly though, and my extended family
increased by three more adult children and three grandchildren.
We married in 1997 and in 1998 my husband was diagnosed with prostate cancer. He underwent
hormone therapy followed by 10 weeks of daily radiation sessions. While he went through all the
normal responses and was scared by the experience, I was terrified that I was going to be widowed
within two years of marrying -- I wasn't ready for that. I had just found him -- I couldn't lose him so soon!
I developed serious stomach problems so Pantolac was added to my drug regimen. Every time I try
to stop taking that pill, within two days my stomach is screaming at me. Today, my husband is a
cancer survivor; my stomach continues to suffer the effects of the experience.
In our attempts to diagnose the problem with my hip, I have endured a plethora of tests: X-rays; bone
scans; CT scans; MRI -- everything showed "normal;" there simply was nothing "wrong" with me.
I was referred to a variety of other physicians: orthopedic specialist; rheumatologist; specialist of
physical medicine; pain management specialist. By this time, the medical community was becoming
more aware of fibromyalgia as a diagnosis. It was determined that fibro, as the syndrome has come
to be known, is what I have been suffering with all these years. But nothing has explained the pain
in my right hip.
In 2001, I began physiotherapy sessions to deal with the increasing pain in my hip because my
mobility was becoming seriously compromised. A cane was introduced to assist me, so now I had
to juggle my purse and my brief case, while holding the cane when moving gingerly back and forth
between my office - car - home. God help me if I needed an umbrella!
Also in 2001, my gorgeous grandson was born!
On a "good" day, the effort of showering and then washing and drying my hair uses all the energy
I have for that day. But while I was working, I still faced a 45-minute drive to Ottawa, followed by
a full day of meeting the demands of a very busy job. After which I had to drive 45 minutes to return
home, where, in my case, my job often continued because of the technologies available to us
(telephone, fax, computer, Blackberry). I recall many days when the drive to work and/or the drive
home from work was spent crying in pain, wondering how much longer I could go on. The MP I
worked for was very understanding about the limitations I faced and the difficulties I endured, so we
arranged things so that if he was not in Ottawa, I worked from home. That at least eliminated the
daily commute, which was a wonderful solution for us. But it meant that my job never really ended,
ever.
In about 2004, when my left hip also started giving me trouble, I complained that I couldn't sleep on
either side because it hurt so much. I recall my doctor joking that I might have to learn to levitate!
So now I was dealing with this mysterious pain in both hips which prevented me from sleeping for
any length of time. The overall pain of the fibro causes me to waken fully in order to turn from one
side to the other. I can't turn over easily the way most people do; I have to engage all my muscles to
achieve a roll-over, and it is very painful.
Throughout this period, we kept adding tools to my pain management arsenal, hoping each would
be the magic bullet I so badly needed:
we renovated our bathroom to allow the installation of a jet massage bathtub so that I could enjoy
water massage treatments whenever I needed them (often, at 3:00am!)
we installed a stair lift to move me from one floor to another because I could no longer get up and
down the stairs without excruciating pain
we installed an additional bathroom on the lower level of our home to reduce the need for trips
upstairs
I replaced my Chrysler Sebring with a Chrysler Pacifica because it was too difficult to get in and
out of a regular car; I've equipped the driver's seat with a massage cushion and a backroll to help make it
somewhat more comfortable for driving .
I use a TENs (Transcutaneous Electrical Nerve Stimulation) unit with incredible frequency, almost
to the point of never taking it off!
I use an ETPS (Electro Therapeutic Point Stimulation) pen to self-administer acupuncture before
I go to bed
I wear a trochanteric belt over my hips for relief on my bursa
I have weekly physiotherapy sessions, during which I receive what I call "full body acupuncture" --
from neck to ankle. I don't know how many needles are used but it's lots! During these sessions, there
are icepacks on my groin, and heat on my back. Talk about confusing the senses!
I have bi-weekly massage therapy sessions to work out the knots that invade my body
My husband performs traction morning and evening to release the pressure in my hips
Every chair in my home that I sit on is equipped with either an Obusforme seat pad or a back roll.
I use a variety of drugs which we are constantly adjusting, trying to give me relief. My current
"cocktail" is Codeine Contin each morning and evening, which requires that I use various and sundry
methods to fulfill what is called the "bowel protocol" to counter the effects of the codeine.
I retired in 2006, due to medical disability, because I could no longer meet the demands of managing
a very busy MP's office and trying to sustain a life of my own. Most days, I was waking up feeling like
I'd been hit by 10 mack trucks, but I still had to make it to work and carry on with my duties and then
make it home and continue with my responsibilities there. I just couldn't do it any longer! I was
getting very little sleep, often taking my massage baths at 3:00am trying to get relief from the pain.
And my ability to cope was on a major downslide -- naturally, as my pain level went up, my coping
ability went down so my stress level was through the roof.
We thought that once we removed the job from the equation, things would improve, and they did
somewhat. At least I was no longer juggling the demands of a busy job as part of my day.
But the pain didn't lessen. What did improve was, I no longer HAD to get up and shower
and get ready to go to Ottawa on any given day, unless I had an appointment. I have actually come
to resent those days that I do have to go into Ottawa because the commute takes so much out of me.
Of course, it hasn't helped that the various drugs I'm using all cause their own side-effects, one
of which is weight gain. When I was young, I was so thin my father used to tease me that I must
have had to run around in the shower to get wet, or that I could probably run between rain drops to
avoid getting wet. Believe me, those jokes could no longer be applied to me! And extra weight adds
stress on already painful hip and knee joints. But have you ever tried to find an exercise program
that doesn't engage the hips?
In 2007, my physiotherapist was convinced that warm water exercise was one of the answers. There
are no heated pools in my immediate area so again I would have to endure a drive to Ottawa to
partake of the benefit. So, off I went to an Ottawa pool that was heated year-round. They even
offered exercise classes specifically geared to fibro-patients. Problem was, the pool was only waist-deep
and the constant impact exercises simply made my hips worse. I found another pool which was
heated, and it had a "deep" end as well as a class for fibro patients. Again, the impact exercises were
making my hips worse so the instructor put me in the deep end, with floaties, and I would do the
exercises without touching the bottom of the pool. This was wonderful, although it made some of
the exercises a little more difficult to do. The class was fun though -- the instructor even introduced
a "Bonnie Break" into the schedule; I simply could not keep up. Unfortunately, that pool's water
temperature turned out to be not very reliable. When they "topped up" the pool, the overall pool
temperature took a day or so to redistribute and the water would be quite cool. And during the
summer months, they lowered the temperature because their clientele wanted the water to be more
refreshing. After spending time in the pool, I would suffer for days because of the effect the cooler
water had on my muscles. So much for warm water exercise in the Ottawa area!
In June 2008, my doctor suggested we try Lyrica, a new drug that was showing promise with fibro
patients. Because of my history of drug reactions, we started with a very low dose, much lower than
was indicated by its pharmacology:
25mg 2x/day for 1 week
50mg 2x/day for 1 week
75mg 2x/day for 3 weeks
125mg 2x/day = total dose 250mg/day
There were profound results -- so much so that I was able to help my daughter with my grandson's
birthday party in June (a mere two weeks after starting on a very low dose of the drug). I was able
to move as I had not been able to in many years. I was a new person! Everyone who knew me was
amazed. My doctor told me that my daughter, who is also his patient, had been in to see him and
asked what he had done to her mom.
I was now able to play with my grandson without having to tell him that everything he did hurt me.
I could now hold hands with my husband without having to say, "not so tight;" and I could let him
hug me without crying, "ouch, not so hard." There didn't seem to be any mack trucks hitting me
during the night. Life was good!
By December of 2008, I was experiencing fatigue and muscle pain again; the mack trucks were
coming back. So my doctor agreed to increase the Lyrica, but only by 25mg 2x/day -- that put me
at 150mg 2x/day (total dose = 300mg/day). At that dosage, the general muscle pain disappeared but
the fatigue continued.
By March, 2009, the mack trucks were making frequent appearances again, so my doctor agreed to
increase the Lyrica by another 50mg 2x/day. I was now taking 200mg 2x/day (total dose =
400mg/day). My doctor assured me that because of the excellent results we had seen with Lyrica
early on, we simply had to find the correct dosage for me. At 400mg, the generalized pain and fatigue
seemed to lessen, but I started experiencing excruciating leg cramps. The cramping would sometimes
throw me out of bed; it was worse than any of the charley horses I had experienced with my
pregnancy. During the day, I couldn't walk for the severe pain in both legs. The day my right foot
curled up in agony while I was driving home, I knew I had to do something about it. I made the
decision to reduce the Lyrica back down to 300mg/day to see if the cramping disappeared. Within
two days it was evident that Lyrica was the cause of the cramping.
I was also referred to a new rheumatologist in March of 2009. He agreed that the problem with my
hips has nothing to do with fibromyalgia; it is definitely bursitis -- in both hips. He also feels that
x-rays will indicate the presence of osteoarthritis. He convinced me to let him try cortisone injections
in each hip. Again, I saw stars when he injected the right hip. I also had wonderful relief -- for ten
magical days. But when the pain came back, it came back with a vengeance! And I hit a major funk!
Would I ever find anything to relieve this pain? I was (and am) so very tired of the pain that
apparently has no cause. The X-ray that he ordered reported, "Both hips are normal. No evidence of
osteoarthritis." So, here we go again -- "nothing is wrong!" I am scheduled to see him again in late
May for follow-up.
As of April 9th I have increased the Lyrica back up to 400mg/day to see if the leg cramping returns.
If it does, I will go back down to 300mg/day and stay there until I discuss the issue with my doctor
to determine if Lyrica is the drug for me. Since the mack trucks seem to make occasional visits at
300mg, should we be looking to another option? My pharmacist tells me a drug called Neurontyn
is something I might be able to try.
I plan my weeks very carefully because I cannot make the trip into Ottawa on two consecutive days.
When necessary, I will book one appointment late on the afternoon of one day and a second
appointment early on the morning of the next. That way, I can stay overnight at my daughter's place
and visit with my grandson -- which is always a bonus!
So finally, here is my blog,
Living with Fibro ,
where I hope to log the daily trials of my life. I am, by nature, an intensely private person,
so I won't share EVERYTHING. But I will share what my day-to-day living experiences are like as I juggle the
demands of a still-busy life with the challenges presented by the pain of living with fibromyalgia.
