List of Gastrointestinal manifestations in Polymyositis

Gastrointestinal manifestations in myositis
Dysphagia is difficulty or discomfort in swallowing, as a symptom of disease. 
Odynophagia is pain on swallowing food and fluids that can be felt in the mouth, throat, or esophagus. 
Nasal regurgitation - during swallowing, the soft palate and the uvula move to close off the nasopharynx, preventing food from entering the nasal cavity. When this fails, it is called nasal regurgitation.
Reflux esophagitis is a condition where stomach contents come back up into the esophagus resulting in either symptoms or complications.
Abdominal bloating is a condition in which the belly (abdomen) feels full and tight. 
Constipation is a condition in which bowel movements occur less often than usual or consist of hard, dry stools that are painful or difficult to pass.


Falling over with myositis

myositis and falls
Weakness in my legs causes me to fall or trip, which can be both embarrassing and scary.
Falling does make me feel vulnerable.

So far I have only fallen over at home and only once at work, when no one saw.  I am not clumsy, I have muscle weakness caused by Polymyositis. I have fallen down the stairs and I have tripped up the stairs and I have tripped over my own feet. Apparently falls are the leading cause of home injury deaths with nearly 6,000 lives claimed per year in the USA as a result of falls in the home.  

I think I fall over in my home as I am not practicing my conscious walking when I am in the perceived safety of my own home.  

According to one UK study Falls are a common occurrence for people with IBM, independent of age and years since symptoms first presented, and are poorly addressed by appropriate physiotherapy management. National falls guidelines are not being followed, and referral rates to physiotherapy need to improve. I could find no similar information regarding Polymyositis and falls.

Physiotherapists say that we can improve our balance, strength and coordination through exercise. These are the things that contribute to falls. I really do feel that I have improved my balance from weekly balance exercises in the hydrotherapy pool.


May is Myositis Awareness Month

Myositis Awareness Month is in May

Myositis is a disease with different forms that include dermatomyositis, polymyositis, juvenile myositis and inclusion-body myositis.  Myositis is one of the rarest of the autoimmune diseases diagnosed in just 1 in 100,000 people a year. It is hoped that raising the awareness of the condition will shorten the time that it takes to get a diagnosis.

Myositis describes a number of idiopathic myopathies that inflame the muscles that move the body. Diagnosis is often delayed because the symptoms are also common in many other muscle diseases. Myositis Awareness month is now in May each year to raise awareness of myositis, it's symptoms and treatments.


Assessing my muscle disease

I am off to the specialist tomorrow.
That means today, and this week, I am assessing what I am up to as far as my health is concerned, specifically my myositis.
My muscle disorder causes weakness and pain and muscle wasting.

Myositis is an autoimmune disease caused by inflammation of the muscles.  I have been told I have Polymyositis which causes muscle weakness in the muscles closest to the trunk of your body including the upper arms and upper thighs.
Other symptoms include:
  • Fatigue after walking or standing
  • Tripping over
  • Difficulty getting to a standing position
  • Fatigue after walking upstairs
  • Trouble swallowing
So what will I be discussing with my specialist includes the new symptoms I have which include:
  • extra weakness noticed when trying to lift things
  • more frequent tripping (but not falling)
  • memory concerns
  • extra weakness in my chest
  • pain behind my right eye, right ear and on the base of the skull
  • increased finger and hand weakness with turning keys, using scissors, holding knives, chopping food and opening cans.
  • more tingling and numbness in lower arms 
I will be taking this list with me. I am not sure if all the things in my list are related to myositis but they need mentioning, in my opinion. Another thing I have found that I think is extremely useful 10-point functional rating scale for patients with inclusion body myositis (IBMFRS) which is posted here.


Inclusion Body Myositis–Functional Rating Scale (IBM - FRS)

1. Swallowing

– 4 Normal

– 3 Early eating problems—occasional choking

– 2 Dietary consistency changes

– 1 Frequent choking

– 0 Needs tube feeding

2. Handwriting (with dominant hand prior to IBM onset)

– 4 Normal

– 3 Slow or sloppy; all words are legible

– 2 Not all words are legible

– 1 Able to grip pen but unable to write

– 0 unable to grip pen

3. Cutting food and handling utensils

– 4 Normal

– 3 Somewhat slow and clumsy, but no help needed

– 2 Can cut most foods, although clumsy and slow; some help needed

– 1 Food must be cut by someone, but can still feed slowly

– 0 Needs to be fed

4. Fine motor tasks (opening doors, using keys, picking up small objects)

– 4 Independent

– 3 Slow or clumsy in completing task

– 2 Independent but requires modified techniques or

assistive devices

– 1 Frequently requires assistance from caregiver

– 0 Unable

5. Dressing

– 4 Normal

– 3 Independent but with increased effort or decreased efficiency

– 2 Independent but requires assistive devices or modified techniques (Velcro snaps, shirts without buttons, etc)

– 1 Requires assistance from caregiver for some clothing items

– 0 total dependence

6. Hygiene (bathing and toileting)

– 4 Normal

– 3 Independent but with increased effort or decreased activity

– 2 Independent but requires use of assistive devices (shower chair, raised toilet seat, etc)

– 1 Requires occasional assistance from caregiver

– 0 Completely dependent

7. Turning in bed and adjusting covers

– 4 Normal

– 3 Somewhat slow and clumsy but no help needed

– 2 Can turn alone or adjust sheets, but with great difficulty

– 1 Can initiate, but not turn or adjust sheets alone

– 0 Unable or requires total assistance

8. Sit to stand

– 4 Independent (without use of arms)

– 3 Performs with substitute motions (leaning forward, rocking) but without use of arms

– 2 Requires use of arms

– 1 requires assistance from a device or person

– 0 Unable to stand

9. Walking

– 4 Normal

– 3 Slow or mild unsteadiness

– 2 Intermittent use of an assistive device (ankle–foot orthosis, cane, walker)

– 1 Dependent on assistive device

– 0 Wheelchair dependent

10. Climbing stairs

– 4 Normal

– 3 Slow with hesitation or increased effort; uses hand rail intermittently

– 2 Dependent on hand rail

– 1 Dependent on hand rail and additional support (cane or person)

– 0 Cannot climb stairs

This 10 point functional rating scale was developed by modifying
the ALS functional rating scale.  The highest score possible is 40, and the higher the score the better the person is functioning. Find out more about this rating scale.



Association between Polymyositis and adult coeliac disease

Personally I have known I could not tolerate wheat for over 18 years and have been on a gluten free diet before being diagnosed with Polymyositis. I am now on a strict gluten free diet and still have both gastrointestinal and muscle symptoms, though these symptoms are much reduced.

The following is an excerpt from a published medical article about Polymyositis (PM). I think it is quite easy to understand. Osteomalacia is softening of the bones.
Gastrointestinal investigation of 14 adult patients with polymyositis disclosed coeliac disease in five. The inflammatory myopathy in our patients is not the same as the myopathy often seen in coeliac disease with osteomalacia. One patient has been free from both gastrointestinal and muscular symptoms for 5 years on a gluten-free diet alone. The findings strongly suggest an association between polymyositis and adult coeliac disease.
This article by K. G. Henriksson, Claes Hallert, Klas Norrby and Anders Walan was published in Acta Neurologica Scandinavica  Volume 65, Issue 4, pages 301–319, April 1982

Berlin Conference

What about you? Do you find a connection between your polymyostis and glutensensitivity like me? I would love to hear about it in the comments here.


My symptoms are always changing.

I am sick of pain and new pain and new symptoms and changing symptoms and blood tests and medical tests and not knowing if something new is brewing or just the same old myositis which always seems to be changing.
I have extra and extreme tingling in my toes and milder but similar tingling in my lower legs. My liver blood tests are raised and I have nausea and stomach pain and loss of appetite and loss of taste and cannot eat fried foods or drink alcohol. When you know you are susceptible to autoimmune disorders you do tend to think that what you are experiencing is probably related.

Only time will tell...
I am having a nuclear medicine test on Tuesday called a HIDA scan which is a procedure used to diagnose problems in the liver, gallbladder and bile ducts.
A radioactive chemical will be injected into a vein in my arm to see if I have Gallbladder inflammation, a bile duct obstruction or an abnormalities in the bile ducts. Oh, what fun!

Has anyone else had this procedure? I would love you to let me know in comments below. Thanks.

GALLBLADDER: Gray's Anatomy 20th ed. A pear-shaped organ located under the liver that stores and concentrates bile secreted by the liver. From the gallbladder the bile is delivered through the bile ducts into the intestine thereby aiding the digestion of fat-containing foods.


Living with myositis: What you can do to help yourself Part 1

Living with chronic illness strategies

Living with myositis, or any chronic illness,  requires certain adjustments. It is important to make healthy choices for ourself - no one else will, no one else can. It is up to us to keep our symptoms under control and take control of our own health with the advice of professional health providers.
Managing myositis starts with proper treatment, including medication and therapy. But there is more we can do to help ourselves each day. These daily decisions may influence the course of our illness: whether our symptoms get worse; whether we stay on an even keel or experience a flare.

Things we need:

  • Education. Learning about our illness. This allows us to make informed decisions about all aspects of  our life and treatment.
  • Personal Responsibility. Taking action including the basics of taking medication as prescribed and keeping appointments with doctors and the sometimes more difficult tasks such as asking for help from others when we  need it.
  • Perspective. Having a wider perspective on the disease is important: painful times won't last forever and it may be difficult to believe things will get better again unless we have this wider perspective. Also realising there are people worse off than ourselves really puts our disease in perspective.
  • Self-Advocacy. This means being an effective advocate for yourself so you can get the services and treatment you need.
  • Support. Support from others is essential to feeling less lonely and enhancing the quality of your life. Having someone to talk to who understands is important and this could be through a forum such as Daily Strength.
  • Hope. Believing that you can cope is essential. With good symptom management, and pacing and understanding your limitations, it is possible to experience long periods of feeling okay, even good. 


Stress an Illness

stress and illness presentation
Below is a link to an article about stress and how it affects our health. Some important points I got from this presentation were that:
  • your body does not care if it is a big stress or a little stress
  • the adrenals and cortisol play a large part in stress
  • that we need to address the stress, even for a minute as it comes upon us
  • there are many ways we can help ourselves including humour, mindful breathing, music, exercise and meditation.
Please view the article by clicking the link:
Stress, Immunity and Your Health

National Myositis Convention Orlando Florida
by Sheralee Beebe
Holistic Health Practitioner


Learning to express your needs when you have chronic illness

I am trying to learn to recognize my own needs and the benefits of voicing them to others. This is both with my family and in the wider community.
Is there really anything wrong with asking for the shopping bags to be carried out to the car?
I am also trying to learn about the best ways to ask for help. The following talk is from people with Myositis and their challenges of expressing their needs as well as some helpful tips on self-advocacy.
Self-Advocacy When Coping with Myositis


About chronic disease: muscle weakness

 muscle weakness symptoms in myositis
Mother Combing Child's Hair painted 1879 by Mary Cassatt
I can longer brush my own hair with ease. It is a major effort which causes pain. I need someone to brush my knotted hair.

I can no longer cut the veges with ease. It is difficult and dangerous. I need someone to cut my health giving foods.

I can no longer hang the washing on the line with ease...

You get the idea? I could go on but I think you get the idea. I don't really want to whine on and complain. I know there are many people out there with worse problems than mine. It's just that I had a realization: How can I be a mother to my children if what I really need is a mother. How can I be a mother when I need a mother?

Myositis Outcomes from NINDS

The DM Disease Activity Collaborative Study Group, and later the International Myositis Outcome Assessment Collaborative Study Group recommended development of outcome measures in all forms of IIM  - Idiopathic Inflammatory Myopathies -  in adults and children, and coordination and facilitation of clinical trials in adult and juvenile myositis. 

The main reason stopping this group from undertaking large multi-center trials in myositis is the lack of validated disease activity and damage indices. 
 For this reason, the first in a series of two workshops were held to address the following: 
1. Use of the core set of outcome measures recently identified to develop a myositis disease activity index, a preliminary definition of improvement, and damage index, and 
2. to develop consensus on issues related to the general conduct of clinical trials, extend of improvement and damage, development of inclusion and exclusion criteria and appropriate therapy, and recommendations in regard to the trial duration, dropout criteria, safety assessment, and post-trial evaluations. NINDS 2001

Since this was written things have progressed more on this soon. (Sorry, my research is slow)

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