Myositis Malaise

• Malaise (/məˈleɪz/ mal-AZE) is a feeling of general discomfort or uneasiness, of being "out of sorts", often the first indication of an infection or other disease. 
• Fatigue occurs with malaise in many common diseases. 
• Malaise can be accompanied by a feeling of not having enough energy to accomplish usual activities. 
• A vague feeling of bodily discomfort, as at the beginning of an illness.

So this is what it has come too. I wake up in the morning and head down stairs for my first cup of tea and can't even pick up the cup without pain. It's like lifting a 10 kg weight! (I use to lift weights for fun!)

Photo By: Cpl. Courtney C. White                                                                                                      

This simple act of waking and getting a cuppa has different conotations for people with chronic pain and muscle disease:

1. Waking

 - realizing your body is in pain

 - trying to get out of the bed (trying may be the operative word, especially when you find it difficult to roll over or sit up)

2. Walking

- stiffness but just try and get moving

- down the stairs is an extra challenge and extra pain (think yourself lucky you can still manage pain)

3. I could go on but typing is tiring my fingers, arms, shoulder and back...

There are more things in heaven and earth

There are more things in heaven and earth, Horatio,
Than are dreamt of in your philosophy
Said by Hamlet  Hamlet Act 1, scene 5, 159–167

I'm not sure if I am losing part of my brain function or

Gobbeldy GOOK

I had never come across this before - when I tried to copy and paste something from an article it turned out like this:  "gobpyfdfcwk}f hppyohgd cffjfj zo hjjyfww zdf bvlzkmhgzoykhlfzkolon{ om gdyockg jkwfhwf hcj zdf gobplft, pyogfww"oykfczfj,kczfnyhzk}f, zdfyhpfvzkg hppyohgdfw zdf{ yfxvkyf#"   !!!

Was this what was happening in my body? All the messages were getting confused and going haywire and turning into gobbeldey gook? What the article actually said was:

The pain and fatigue of myositis

By January 5th the pain and fatigue returned and I can see no reason for it.
I'm also not sure if the main pain, in my wrists and ankles, which has me dreaming that my hands have been chopped off, is myositis or Rheumatoid Arthitis.
I guess it is just a part of the inflammation that is me.
I think the pain comes from living in constant pain that is not removed by a mix of pain killers.

I don't understand Myositis

Is it an inflammatory myopathy?
Is it a muscular dystrophy?
Is it an autoimmune condition?
I don't know and I don't know why one day the pain in the shoulders is SOOOO bad and 3 days later it is the wrists or the thighs. The frustrating thing is accepting that treatment is limited to pain management and expensive physical interventions.  The pain is so bad it makes you want to...

Pain

And a woman spoke, saying, "Tell us of Pain."
And he said:
Your pain is the breaking of the shell that encloses your understanding.
Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.
And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;
And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.
And you would watch with serenity through the winters of your grief.
Much of your pain is self-chosen.
It is the bitter potion by which the physician within you heals your sick self.
Therefore trust the physician, and drink his remedy in silence and tranquillity:
For his hand, though heavy and hard, is guided by the tender hand of the Unseen,
And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears.

Pain from The Prophet

by Khalil Gibran (1883 - 1931)

Khalil Gibran, photograph by Fred Holland Day c. 1898

Feeling physically strange

Sometimes I feel like a fish out of water: I have a body but it is not working right. Actually being in water is about the only place I do feel like all my muscles relax - especially if it is warm water. Then I feel so good I have to remind myself not to overdo it as I start jumping around and exercising and swimming and the next day my muscles are too fatigued. Soon I will start hydrotherapy exercises at the hospital pool. I am looking forward to that.

What does Myositis mean for me?

I have polymyositis,which means inflammation in many muscles, if I remember correctly.

What it means to me in my everyday life is listed here:

• I can no longer sit in a chair for longer than 1/2 an hour without having to get up and stretch
• difficulty with walking up and down stairs
• difficulty with getting out of chairs
• pain in my muscles - especially those in my upper arms and upper legs
• very difficult to squat
• very difficult to get up off the floor
• constant pain in muscles
• arthritic pain in most joints, except knees
• living on pain killers
• enlarged muscles in my thighs and upper arms that make me look overweight
• difficulty swallowing dry food
• difficulty talking for more than about 10 minutes
• pain from muscle use e.g. more than 1/2 an hour on computer gives pain in arm, neck and shoulders
• when reading, text becomes blurry
• chopping veges and other food prep is difficult and painful
• standing for extended periods causes extra pain
• many doctors visits to get prescriptions
• specialist's visits
• blood tests every month

Of cause every person is different and these are just some of my daily challenges.

maybe the immunosuppressants are working

The feeling like I have ben punched in both my upper arms is gone. This was a constant pain. I have been taking the Imuran since February and it is a 6 month trial. This is 3 months, so far, and I am hoping less pain is in store. Being able to blog for longer than 15 minutes would be good. Signing off with cramping pain in upper right arm.

Talking to the pain person

My GP suggested a questionaire to help me access a pain psychologist. He said it would be someone to talk to about my myositis, someone who understands pain and how to cope. This is a very specialised field now as there are so many people living in chronic pain.
It is good that there is someone to talk to as even though I come from a large family no one wants to talk about it except probably my mother and I don't like to burden her with all of this. If she asks, and she does, I tell her a little but not too much.

Some books I have found useful:

Managing pain before it manages you. M.A.Caudill, The Gilford Press.

The Pain Survival Guide: How to Reclaim Your Life. D.C. Turk  & W. Frits, American Psychological Association.

No rhyme or reason

That is how I feel about the pain I get - no rhyme, no reason. One day in my upper back, next day hips and shoulders and then the right side of my skull! Go figure. I also thought that work was aggrevating me but after 2 weeks off I am still getting the severe pain in my legs as if it is in my bones. Oh well, go and do some more stretches and take another pain killer.

"It would be a great thing to understand Pain in all its meanings."
Peter Mere Latham ( 1789 – 1875) an English physician.

Today, another day

The pain in my shoulders is so severe today the breakthrough pain killers do not work. It is hard to type on the computer, who am I kidding, it is hard to sit in an upright position!

I cannot believe it is already April - the year is flying by.
Tonight I have forgotten to take my pain meds and my Imuran - immunosuppressant - but this is a good thing because I have not been in a lot of pain today. The pain is usually the reminder if I forget.

A bit of bad luck or the ripple effect

Yesterday I took my wallet out of my bag to pay for something over the internet.

I was asked to take my son to the train station and forgot my wallet.

There was no petrol in the car so I went to the petrol station.

I could not get petrol as I had no wallet.

I drove home to get it but ran out of petrol.

My phone I had misplaced the day before and even when I rang it could not be found.

As I had no phone I had to walk home which was about 1 and a half kilometres.

Today I can hardly walk at all!

Memory is a good thing

Almost every part of me is aching - jaw, wrist, shoulders, upper back, ankles, hips - and it has been like this for a long time but when I look back it is not the pain I recall. I have very fond memories of holidays and events, occassions when all the family were together. I remember all the happy times and the sad times and not one of these memories involves pain.

I am with James Barrie the author of Peter Pan when he said " God gave us memory so that we might have roses in December". Not that this is my December.

James Matthew Barrie (1860 – 1937 )

Bronze statue of Peter Pan in London's Kensington Gardens created in 1912

Peter Pan and Wendy cover published in 1915



exhausted again

I feel so bad and so weak I can hardly type.

I overdid it on the weekend at my grandson's christening.

3 days later and I feel so bad - aching almost all over, headaches and very weak - hard to sit upright without support and hard to stay on computer. 

Live and learn.

I thought I had learnt this lesson!

Knowing what it is helps

On January 1st, 2010 I listed my most concerning symptoms to tell my specialists,  as still no diagnosis after many years.  It is a long list of 18 symptoms. It is interesting to look back as after over a year of trying prednisone, acupuncture and most recently Azathioprine , a drug that suppresses the immune system, all these symptoms still persist.

This may seem depressing but there has been a major shift in me just knowing that I have a correct diagnosis this time, from a muscle biopsy. I can most days not concern myself with the symptoms, just take my pain killers and get on with my day. 

My pain specialist says she has seen a great change in me just knowing and not searching for answers anymore and also understanding this is for the long haul...so I think we call this acceptance.

I am a work in progress - I am not my disease.

Only sad, not lonely

Thank goodness for the internet and the distraction and connection that it give us. It allows me the cathartic pleasure of getting things off my chest when no one else will listen. For me this does seem to help alot.

"Today I woke up and it all just hit me - like a freight train - I hadn't seen coming.  I can't go to the shops, I can't walk around and look for clothes for my grandson's christening...walking really hurts and I probably need to change my job! ( I work part time only 7 hours a week!)

I know there are lots of people worse off than me and normally I am a person of blissful bravado but once again the old Loss, Letting Go and then Get On With It Again has reared up. I don't think it has an ugly head but it is probably necessary to let me down slowly, bit by bit, over the continual limiting restrictions, that many chronic diseases must bring and the course my PM is taking, despite what I try.
Good luck to you all with the fight and thank goodness for the internet or we would be lonely as well as sad.
P.S. I am not sad every day."

This is what, or very similar to what, I posted on Daily Strength Forums. Thank you to all those there on the myositis forums for their continual and ongoing support.

Some days

Somedays I forget to take my regular pain meds. I don't realise until I 'm wondering to myself why I'm in so much pain today? So I guess they work and they keep the scourge of pain at bay.
I don't think I would be a nice person without my pain meds. It has been hard to come to terms with living in chronic pain and understanding that I need to take these tablets all the time. I have never been one for taking lots of painkillers or antibiotics or anything like that and usually prefered more natural ways.
The only thing that is constant is change.

Just about today

Today I spent a lot of time on the computer - too much I fear, as I will feel it tomorrow. I feel it now the burning pain in my thighs and the dull ache in my shoulders. This is par for the course with myositis and I am trying to sit only for half an hour at a time and then get up and do something different as the pain specialist suggested.

(Being a specialist in pain, wouldn't that be depressing! I know they are helping and I think it is wonderful that we have them but seeing people in chronic pain all day could be a downer.)

Also I did some housework, ironed a shirt, cleaned the kitchen benches after breakfast, cooked the lunch, and folded some washing, but the pile just seems to get bigger.

My son was home today so he helped me, for about an hour, doing chores that are too awkward like getting things that had fallen off the line and hanging the washing out.

Have to go and take my pain killers now. Good Day to you.