My name is Pat and I have Polymyositis. This is an autoimmune disease
which causes inflammation, weakness and pain and loss of muscle in
"ALL" the muscles of your body. I am a 50 year old woman who lives in
New York City, New York. I first began with fatique in 1995 and
just didn't feel right. I went to a regular MD and he took
blood tests and couldn't find anything wrong, the same went
for an infectious disease specialist. Then my muscles were weak
and started hurting, just going up and down stairs became painful.
I tried many Rheumatologists...they did notice that my CPK levels
( an enzyme that is released when muscle damage is occuring )
was up and fluctuating but they didn't feel it was anything
to worry about.
After I kept complaining and couldn't get to work anymore ( about 1996 )
they decided to give me an EMG ( an electronic test of the muscles of
my arms and legs). It was Negative which meant that nothing was wrong.
I was starting to believe it was all in my head but I couldn't stop
the excessive fatigue, sleeping all the time and the pain in my arms
and legs. I struggled along with Tylenol and went back to work.
It was very difficult but still had no diagnoses. I could not stay at home.
In 1997 I got married to I thought was a wonderful man who knew my medical
problems but loved me anyway. It was great just having someone believe you
and be there for you.
In the beginning of 1998 I had another EMG and it came out Negative again and
I was so overwrought that I didn't know what to do. I again saw two other MD'S.
One referred me to the Head Rheumatologists at MT. Sinai hospital and since he
saw the negative EMG as well as the CPK levels he was a quandry. I am now disabled
and just couldn't get up in the morning to get to work and my Dr. kept reporting to
my job that I was being treated for a muscle problem ( One which had no name ).
That kept me out of work for a while but no help was given to me. The pain
was getting severely worse and they finally gave me anti-inflammatories and
a muscle relaxer which did little help. I returned to work in the latter part
of 1998 with a restriction of working only 1/2 days. But...it didn't help me.
As soon as I got home I would fall asleep until the next morning and dragged
myself back in...it was Horrendous. I had no social life.
In December 1998 I found a new Rheumatologist here in Queens, NYC where I live
and she referred me to a Neuromuscular Doctor in Manhatten,NYC. All the while my
husband Bob was with me at every Dr. Appointment and he had to take time off work
without pay to do this. He was very supportive, I couldn't have gotten a better
husband. The Dr. suspected I had Polymyositis and he took me right to the hospital
for a EMG that he did himself and it was positive for nerve and muscle damage
then a biopsy was scheduled. I was elated! Somebody heard me and was doing
something about it, Thank God, I prayed, I wasn't crazy and lazy, I did have
something that was not right with my body and others believed me.
At the end of December 1998 I was told I had Polymyositis which
I had never heard of before. I thought that I had MS,MD,Lupus or Lyme
disease but I had never heard of Polymyositis
I was given Imuran to take for the CPK levels to drop and to help stop the
Autoimmune Process from eating up my muscles. I ask for Pain medication
but he told me to take Tylenol or Advil ( little help ). I struggled the next
couple of months and no real change. I was told I was going to take IVIG Treatments,
about 4-5 hours of an IV solution which would work faster on the immune system and
give me some relief. The first treatment was to be done in a hospital and Bob was
there all day waiting with me. It went okay...I had no problem but this was to take
place 5 days in a row but the rest of them could be done at home. By the 5th day I
was rushed to the hospital due to my arm swelling and a rash all over my body. I was
allergic to Ivig. I was asked to try it again a few months later and I did and it was
okay for 2 months in a row but had no effect.
Bob and I had scheduled a cruise a year before to get a rest. I couldn't go like I was
feeling so I pleaded with the Doctor for Prednisone so I would be able to at least walk
around and stay awake for the cruise and he gave me 60 MG. We had a good time, never felt
better since all this started. It was a miracle drug. We returned home and saw the Doctor
and he began to wean me off and I was upset. I wanted to be on it forever but it could cause
Liver and Kidney problems as well as a range of other side effects. One which I was already
experiencing was "Moon Face" where my face swelled up like a balloon and I was to gain 65
pounds. I lost 30 pounds after I was completely off it but 35 stayed and are with me today.
Slowly I returned to the fatigued in pain frustrated person I was before and I was depressed.
I would moan in bed due to pain and awake Bob. I couldn't clean or cook or shop for food and
all the responsibilities were on his shoulders plus his job. Bob felt his partner slipping away.
I remember one night he asked me if it would be okay if he went to the movies to see the "Titanic".
I felt bad that I couldn't go with him but of course I said it would be okay. Later that night I
told him if this ever got to be too much for him that I would understand him leaving.
Finally the Dr. put me on Vicodin, I was crying I was in so much pain. The Vicodin worked and
once again..."RELIEF". I never thought that I would get addicted. On December 31,1999 Bob left.
By 2001 I was addicted to Vicodin. I was treated for the withdrawal and actually felt better for
for 7 months ( remission ) during my bout with this disease. I tried Alternative medicine and Antibiotic
treatment, all to no avail. Today I only take Imuran (an autoimmune suppressant) and I am also back on
Vicodin but I watch it carefully. My CPK is 1800 but the Polymyositis has reached my eyes and lungs.
I have no choice but to go on and hope for a cure this year ( 2003 ). I am considering Antibiotic
treatment once again. For more information on Antibiotic treatment please click on the button below.
"May God shine light on all who suffers from diseases with no cure"
This is a photo of me "before" I started taking Prednisone.
This photo was taken "after" I started taking Prednisone.
If you would like to send me an email after you read my story , please click on the kitty below!
This story was written on January,10th 2003.
Please click on the button below to learn more about Polymyositis.