My Story
I was diagnosed with Polymyositis when I was 14 years old.
When I was about 10 I noticed I was feeling nauseous especially in the mornings when I got out of bed. It was kind of a dizzy head and a funny stomach. It went away by lunchtime but came back in waves through the day. Mum took me to the GP but he said it was normal stuff for my age.
As the years went on the nausea got worse. I was really tired all the time and still feeling nauseous everyday. I thought it was normal. When I was about 12 I noticed I was feeling really ill after swimming and sometimes I’d have to lie down. I felt all hot and dizzy.
By Year 8 at school, when I was 13, I was playing Netball 3 times a week, doing a paper round twice a week, walking to and from school everyday, swimming, PE, and lots of other stuff. I was really tired but I thought it was normal because I was so busy. Most times when playing netball or doing PE I would pull muscles in my shoulders, neck, and legs. I also used to do swimming at an indoor pool. I remember being so tired while doing lengths I’d just about be asleep in the water and had no energy to go on. I eventually gave up coz I was so tired.
The cross country was very hard. I was a reasonably fit girl but I didn’t have much energy. I remember toppling over at the end and just about vomited. I went on as normal though.
By April 2003 when I’d just started high school I was still feeling very nauseous everyday. Most mornings it was so bad I’d have to lie down and get mum to make me breakfast. I wasn’t lazy either. I was just so tired and felt so ill I didn’t have the energy to make my own breakfast. I begged mum to take me to the doctor in the April holidays. I was certain I had diabetes because of my symptoms and my Nana also has it. I was feeling ill, was tired, peeing a lot etc. Mum took me to the doctor and she did blood tests. Diabetes was negative but my liver functions test was abnormal.
I had an ultrasound to check for liver disease and all that, but it all came back clear. I was sent to a Gastroenterologist (liver specialist). He did a physical exam and more blood tests, ticking random boxes on the form. One was CK (muscle enzymes). That was raised. The normal range is from 50- 195 and mine was about 800 or so.
I was sent to a Rheumatologist. He did a physical exam and more blood tests, monitoring my results over a few months. By October my CK was up around 3000, so I had Electromyography. They stuck long needles into my arms and thighs. I had to relax and tighten my muscle while they moved the needles round inside me. Ouch! Very painful! The test came back very abnormal.
The next step was a muscle biopsy. I went into hospital on Dec 22nd 03. I had a general anesthetic and they cut three pieces of muscle from my shoulder for analysis. I was left with a scar about the size of a matchstick on my shoulder.
Dec 24th 03, I was getting ready to go to the movies with a friend and got a phone call. I was excited about the movies because I’d been too tired to do anything all holidays and it was the first time I would’ve been out. It was the Specialist on the phone saying to come in because he had the biopsy results and a diagnosis.
My entire family went to the hospital but the Doctor only saw my parents and I. He diagnosed me with Polymyositis. I was like, “Ok, I’ve got this condition and I have to take some pills and I’ll be fine.” But that wasn’t the case at all.
Dec 25th 03, Christmas Day, I began on prednisone. It was a rather awful Christmas pressie. I couldn’t even swallow pills back then so it was quite a performance especially as prednisone has the worst taste ever. I began on 40mg. In the end I took it with condensed milk. I also had to drink this gross calcium drink because a side effect of prednisone is thinning of the bones.
On Boxing Day we went on holiday down South, on an 8 hour drive. I didn’t want to go but my parents made me. I felt really sick and wasn’t myself. The prednisone was making me all messed up. I felt sick. I had sore stomachs, headaches, was sore and achy everywhere and most of all very emotional. I was crying all the time and just wanted to go home. The next day we came all the way home even though we were supposed to spend a week down there.
The prednisone kicked in a week or 2 after and I had lots of energy for a while. I went on a cleaning frenzy, cleaning my room and every other room in the house. I crashed after 2 weeks or so. We went on holiday to Hanmer. I was still on 40 mg of prednisone and was very, very hungry. I was eating non-stop and putting on a lot of weight. My face was also puffy and round. I was very moody and had a lot of hissy fits over nothing. Crying and screaming.
I began back at school Feb 04, but I didn’t really make a big deal about my Polymyositis to my teachers so as the weeks went on I became more and more behind and was struggling. I began missing a lot of school, weeks at a time. Eventually we saw the school Counselor and Dean because I was so stressed. The Counselor let all my teachers know about my illness and we decided I would go to school part time and would only do 4 subjects.
I was still struggling though. I felt so incredibly out-of-it from the drugs. I would be sitting in class in a total daze and it took a lot to snap myself out of it. I was like, “Argh, where am I?” Then I realized where I was but it was kind of scary.
I decreased my prednisone Feb 04 from 40mg to 20mg. The decrease was way too fast so my body crashed. I had to go back up to 30mg. I was feeling really nauseous all the time and really sore in all my muscles especially my thighs and upper arms. I felt worse on the medication than before I went on it.
I went to Eastercamp in the April holidays which was a 5 day camp but I ended up having to come home the first night. I had carried my bags which was a mistake because I’d pulled lots of muscles in my neck and back. I have to be careful carrying things now because it really hurts especially upper arms. They feel really swollen and tight. I also couldn’t keep up with my friends. They were off walking round everywhere and I was struggling to keep up. It took me weeks to recover from that day.
I also was unable to walk up the stairs. My legs felt weak and very sore. I had to get a lift pass for at school because there are four levels. I got very frustrated and sometimes I’d get so angry I’d walk up the stairs but later regret it because it hurt so much.
The specialist wanted to get my prednisone dosage down because it’s dangerous to be on high does for long periods of time. My body wasn’t responding to the decreased prednisone the way it should have so the Doctor put me on Methotrexate in May 04. Methotrexate is an immunosuppressant drug sometimes used in cancer chemotherapy treatment and treating rheumatoid arthritis. Polymyositis is a type of rheumatoid disease so it’s used to treat it too. Methotrexate is a pretty awful drug with gross side effects.
I began on 1 tablet for 1 wk, 2 for 2 wks, 3 for 3 wks, 4 for 4 wks etc until I reached 7 per wk. 17.5mg. At each increase I got worse and worse and felt really nauseous. Apparently it’s the same type of nausea as morning sickness. I would feel so sick I would hardly be able to do anything all weekend because I’d take the drug Saturday mornings.
Methotrexate also made me really moody and I couldn’t help it. I would cry the entire Saturday because I felt so awful. My stomach used to get really upset too. I went off pies, scrambled eggs, Chinese and a lot of other foods. So I was feeling so ill and off my food from the methotrexate, but I was also feeling absolutely starving from the prednisone.
I also had to take supplements like folic acid and vitamin d when I was on the methotrexate. Methotrexate also makes your skin really sensitive to sunlight so you burn really easily and sometimes get a rash, so my skin’s really pale because I don’t really go in the sun anymore.
The drug made me extra tired on top of how tired I was from the actual illness. I’d basically sleep the entire weekend and still feel nauseous from the methotrexate 4 or 5 days after taking it. I also had awful migraine type headaches and my eyesight was fuzzy.
I had braces on my teeth at the time and the methotrexate made my gums very sensitive so I got a mouthful of ulcers. This was painful and lasted at least 6 or 7 months until I got my braces off.
I was also vomiting a lot, mainly on the weekends. I’d just wake up in the morning feeling really sick and start vomiting. Sometimes it happened after I’d gone to a friend’s party or something so we thought it could have something to do with food. I also felt sick after drinking fizzy drink and eating certain foods. We thought it could be lactose intolerance, celiac disease or something else. I went back to the Gastroenterologist in Feb 05 and had a Gastroscopy. It came back clear so we put the vomiting down to my body being too tired and telling me to stop and rest.
I was getting really bad colds all the time. It wasn’t the normal cold, being bad for a few days then getting better and going away. It was bad for weeks and wouldn’t get better and go away.
I was feeling really awful about myself in 04. Prednisone has a side effect of depression and I was feeling depressed on top of my body being totally messed up. I also felt alone at school. I didn’t have any of my good friends in my class and felt so crap I didn’t want to make new friends. I didn’t even want to see people. I became withdrawn, quiet and lost my confidence. Some of my ‘good’ friends became nasty and some just forgot about me. I was called lazy quite a few times and heard a few other mean comments. I know it’s because they didn’t understand. I looked normal so everyone treated me like I was normal because you can’t even tell I’m sick by my appearance. The only noticeable things are the ‘rounded’ face and the scar on my shoulder from my muscle biopsy.
I had always worked really hard at school. At primary and intermediate and was always the best at assignments and almost always got A+, 100%. I once cried because I got a B+. I always gave 110% in everything. In Year 10 I was struggling. I had gone from 100% to like 70%. I felt so lazy and slack. I had lost all motivation and had no concentration.
By about July 04 my part time schooling was going ok, but even though I was only going for about 3 hours a day I was still only making it there 2 or 3 days a wk. I made it to the end of the year, very stressed and exhausted.
I had also had about 2 panic attacks that year. Both were on Wednesday mornings, 1 wk apart. I’d just get up in the morning and start to get my breakfast but suddenly the muscles in my chest would tighten and I wouldn’t be able to breathe properly. The first time it happened I panicked and thought I was going to die. I had to be careful not to push myself too much after that.
I went to Physio once but couldn’t go anymore because my CK level was too high and exercise would damage my muscles even more.
I have to take calcium supplements because one of the side effects of prednisone is thinning of the bones. I take 2 Osteo pills a day and every 3 months I take a drug called Etidrate for 2 wks. It makes me pretty moody though and I get really sore stomachs from it.
By January 05 I was down to 7 mg of prednisone. Decreasing prednisone is awful. You get really tired and don’t have much energy. You also have to decrease really slowly so you’re body can get used to the change. I went from 40mg- 20mg but that was too quick for my body to take so I had to go back up to 30mg. Then 25, 20, 17.5, 15, 12.5, 10, 9, 8, 7 mg. I would have to decrease every month or every few months so it took at least a year to get down to 7mg but I was feeling pretty average.
My CK level was about 850 in Feb 05 at 7mg of prednisone and 17.5mg of methotrexate. My CK level was still high in May 05. I’d been to a ball and had pushed myself way too much. I was in a lot of pain while I was dancing but I kept going anyway because I knew if I stopped I wouldn’t be able to start again. Afterwards I was so tired I couldn’t get out of bed for days and I was vomiting the next week. Because my muscles are weak when I vomited, I pulled all the muscles in my stomach, back, neck and shoulders. It was the worst pain I’ve been in. It took me at least 45 mins to be able to breathe properly but then I vomited again. I was so exhausted I sleep from 11am til 4:30am the next day! My chest hurt for at least 5 days afterwards. I was off school for 2-3 wks afterwards then it was holidays.
I went back to the specialist and he took me off the methotrexate because he didn’t realize how sick I was feeling even though I’d been on it for over a year.
I had my school semi-formal coming up at the end of July but my parents didn’t think I should go because of what happened after the ball. I finally convinced them to let me go but they kept lecturing me to pace myself and to sit some dances out. I was like, “Whatever! I’m not going to just sit there and watch everyone else having fun!” I hadn’t been feeling good the weeks before I went- really sore everywhere, sore throats, tired as and I felt like my body was crashing but I was pushing myself as much as I could so I could go to the formal. I had to take extra prednisone to give me a “boost”. I took 15 mg for 5 days.
On the day I felt absolutely awful but I took a few panadol and went anyway. I didn’t tell anyone I wasn’t feeling well because I knew I wouldn’t be allowed to go. By about 10pm the panadol had run out. I was in a lot of pain and just wanted to sleep.
I finally got home and could hardly move. I had majorly over done it. I got into bed and felt really sick- like I was going to throw up and my legs really hurt. I had panadol and anti nausea pills but they didn’t help at all. I cried for like half the night and eventually got to sleep at 2 or 3 in the morning.
The next day I was tearful and felt really tired. I pushed myself to go to school the next day when I probably shouldn’t have gone. I left at lunchtime to go and have a small surgery on my foot. Big mistake! I was on crutches and they put strain on all my muscles because I’m not supposed to do any exercise. For about a week I couldn’t even lift my arms because they hurt so bad. They felt really bruised inside and my entire body felt achy and tired.
I was sent back to the Dr and he put my prednisone up to 10mg. I wasn’t very happy because of the side effects but it had to be done. My CK level was now up at 8360. Ouch! That was to do with my surgery and the extra work my muscles were doing on the crutches.
The increase in prednisone wasn’t enough and mum was worried coz I had no energy whatsoever. I was so tired I would go to sleep at night and when I’d wake up in the morning it wasn’t like I’d slept at all and sometimes I’d wake up even worse than when I went to bed. I had made it to school about 10 days the whole term, and on the days I did go I’d just sit there half asleep on my desk. I didn’t even have the energy to pick up my pen. I lost all concentration. My friends noticed and kept asking if I was ok and I’d just say yeah and try to do some work.
All I felt like doing was sleeping. I was totally exhausted all the time and it wouldn’t go away. I had school exams in the last wk of term. I couldn’t do any study for them because I was so tired. I did the Math’s one on the Monday and I was supposed to do the Science one on the Tuesday but I was up all night throwing up. The Math’s exam was awful. I was so tired I couldn’t concentrate and got very confused.
Mum rang the Dr and my prednisone was put up to 20mg. I really didn’t want it to go up because of the puffy face and being so hungry all the time but I finally gave in. I wouldn’t be able to sleep at night because I was so hungry even if I’d just eaten. I’d sometimes wake up at 4 or 5am because I was so starving. So being tired with the illness and not being able to sleep at night, I was a mess!
We went on holiday to Australia. I didn’t even want to go I was feeling so awful. I had a great time though. I had to go in a wheelchair though so that was pretty annoying. I had to get used to people’s stares but it was good because no one knew me over there. I got extremely frustrated in the wheelchair. Sometimes, like at malls and theme parks, I just wanted to be able to get up and go off on my own like a normal teenager, but I’d always have to have someone to push me. I felt like a baby! I got really upset and annoyed.
My prednisone increase kicked in after the 2nd wk there so I felt a lot better. I even had a day or two without any muscle pain so that was a break on its own. I went swimming once in the sea but I kind of regretted it because it hurt so much. Especially my legs, my glands in my neck and my ears hurt really bad. It took a few days to recover.
When we got back to Christchurch I felt really happy and had lots of energy because I’d had a break from the stress and could pace myself. I went back to school and was sleeping everyday after school. I began feeling worse and worse because of school. I couldn’t pace myself and my body couldn’t take it. I was behind in most of my subjects and had major exams coming up. I was really stressed about the exams and even more stressed because I couldn’t study as much as I wanted because I was so tired and rundown. I ended up catching up in half a year’s worth of science in 3 days! I was running on stress. I did the English and Science exams. I woke up sick the weekend after. I thought it was my normal throw up thing but it turned out to be a stomach bug, so that knocked me around. I missed one exam but got through the rest- just!
The Christmas holidays were great at the beginning. I could pace myself and sleep and rest as much as I felt like. I was feeling good. But ‘good’ for me is probably crap for the average person. I feel sore everyday, am tired, have a permanent sore throat, sore ears and glands and feel nauseous but I felt like getting out and doing normal things like shopping. My legs hurt pretty bad when I walk around the mall so I have to make sure I have a few days after to recover.
I decreased from 20mg of prednisone to 17.5mg on Dec 10th. I didn’t feel much of a difference except I was a bit more tired and absolutely starving. I decreased to 15mg on Jan 10th. I was really tired and my body crashed on me. I was vomiting for 2 nights. I hardly had any energy and all I felt like doing was lying around watching TV. I was also really achy and sore, especially my upper arms. It hurt when I tried to do anything like type, write, paint and play the piano. It was an uncomfortable sort of pain. I was also really tired, so tired I didn’t have the energy to get out of bed and couldn’t be bothered doing much.
I saw a Homeopath at the end of January. She gave me some random flower essence drops and a few pills. Didn't really notice a difference so I was sent back to my Rhematologist who said the same things as he usually does and didnt really do anything about how awful I was feeling. I was so incredibly tired and extremely sore so I am now back on immunosuppressent drugs. :'-(
About Myositis
What is myositis?
Myositis is the term for illnesses that involve chronic muscle inflammation (“myo” means muscle and “itis” means inflammation). “Myositis” refers to several different illnesses, including polymyositis, dermatomyosits, and inclusion body myositis. All forms of myositis involve chronic, or persistent, muscle inflammation. This muscle inflammation almost always results in weakness, and less often in heat, swelling, and pain of the muscles. Myositis can affect many parts of the body. Sometimes the joints, heart, lungs, intestines, and skin can become inflamed. Myositis is a rare disease and rarely affects people under the age of 18.
Cure
At present, there is no cure for myositis. A person with myositis will need to manage the condition and to adjust to the changes it brings. This may involve continuing to take medicine and seeing a doctor regularly. It may also require changing some activities, especially during periods of increased pain and weakness. For most people with myositis, however, treatment of myositis is satisfactory, and they can lead productive lives.
The symptoms of myositis include:
- The shoulder and hips are usually affected first
- Muscular weakness
- Muscular wastage
- Fatigue
- Breathlessness
- Swallowing difficulties
- Tremors, particularly of the hands
- Wide-footed stance and walking style
- Clumsiness (haha who would've thought!)
- Nausea
Screening and diagnosis
Diagnosis of polymyositis isn’t always easy and can be a lengthy process. In addition to a thorough physical exam, including assessment of your muscle strength, your doctor will likely use some or all of the following information and tests to assist in the diagnosis:
Electromyography. A thin needle electrode is inserted through your skin into the muscle to be tested. Electrical activity is measured as you relax and as you gently tighten the muscle. Changes in the pattern of electrical activity can confirm a muscle disease. The distribution of the disease can be determined by testing difficult muscles.
Blood analysis. A blood test can let your doctor know if you have elevated levels of muscle enzymes such as creatine kinase (CK) and aldolase. Increased CK and aldolase levels can indicate muscle damage. A blood test can also determine whether auto antibodies are present in your blood.
Muscle biopsy. A small piece of muscle tissue is remover for laboratory analysis. A muscle biopsy may reveal abnormalities in your muscles such as inflammation, damage or infection.
Medication
Corticosteroids
The most effective drugs in treating myositis are corticosteroids. These drugs are related to hormones produced naturally in the body. These medications suppress your immune system, limiting the production of antibodies and reducing muscle inflammation.
Corticosteroids, especially prednisone are usually the first choice in treating inflammatory myopathies such as polymyositis. Your doctor may begin with a very high dose, and then decrease it as your symptoms improve. This may be done by giving prednisone as pills. It may take several weeks or months for you to notice improvement even though you may be getting better without realizing it. Significant results are usually evident within three to six months, but therapy is often needed for years. Prolonged use of corticosteroids can have serious side effects including osteoporosis, weight gain, diabetes, increased risk of some infections, mood swings, cataracts, high blood pressure, a redistribution of body fat and muscle weakness. As a result, your doctor may also recommend supplements such as calcium.
Corticosteroids are powerful and can have serious side effects. Some of these side effects include:
· Weight gain
· Rounding of the face
· Easy bruising
· Thinning of the bones
· Depression
· High blood pressure
· Cataracts
· Diabetes
· Increased risk of infection
If you take corticosteroids, you should be monitored carefully by your doctor and should report on ant new medical problems to the doctor. Throughout the treatment of myositis your doctor will repeat blood tests for muscle enzymes to watch for signs of progress. Often the CK muscle enzyme will begin returning to normal before you notice any improvement.
Immunosuppressants
You may not respond to prednisone therapy alone. If your body doesn’t respond adequately to corticosteroids, your doctor may recommend other immunosuppressive drugs such as methotrexate and azathioprine. Your doctor may prescribe these alone or in combination with corticosteroids. When in combination, these additional immunosuppressants can be used to lessen the does and potential side effects of the corticosteroid. Your doctor may then prescribe both prednisone and a drug that suppresses the immune system. Immunosuppressants slow down the immune system, reducing its ability to attack infections and attack healthy tissue in persons with autoimmune disease.
Immunosuppressant drugs are powerful agents and can result inside effects. If you are taking these medications, see your doctor regularly so that he or she can check for any side effects and decrease the dosage of medicine if necessary. If any of these side effects occur contact your doctor:
· Upset stomach
· Loss of appetite
· Mouth sores
· Hair loss
· Skin rash
· Fever
· Chills
· Diarrhea
· Missed menstrual periods
After your strength improves, your doctor probably will begin slowly reducing the dose of prednisone to a lower level that may remain the same for a long period of time. If your myositis is under good control, your doctor may eventually be able to take you off prednisone completely, at least for a time.
In the early stages of treating myositis, your muscle fibres are fragile and could be damaged further by such exercises. Physical examination and laboratory tests will help your doctor determine the appropriate time to start an exercise program.
But even when strenuous exercise is not recommended, it is important to prevent loss of flexibility of your arms, legs, and other parts of your body by doing range of motion stretching of the joints and muscles.
Getting adequate rest is another important aspect of managing myositis. During times of increased muscle weakness, you need to take frequent rests during the day and to limit your activity to a tolerable level.
(Medicine.net.com & The Myositis Association)
