Thursday, February 28, 2013

Highs -n- Lows Living with the Disease

Thursday, February 28th

Continuing my search for information...
Although DM causes pain and weakness, it is not necessarily life threatening. However, adults who develop DM have an increased risk of developing cancer and should be screened for malignancies regularly...

Over time, the immune system cells attack healthy cells of small blood vessels in muscles and skin causing muscle fiber to shrink and sometimes cuts off blood supply to the muscle. DM tends to develop in muscles closest to the center of the body...

Often the first sign of DM is the development of a patchy, scaly, violet to dark red skin rash on the face, neck, shoulders, upper chest, knees, or back. Often the rash appears before any signs of illness or muscle weakness...

Muscle weakness, especially in the upper arms, hips, thighs, and neck, becomes apparent in activities such as climbing stairs or reaching up over the head. This weakness develops after the rash appears. Some people have difficulty swallowing and chewing when the muscles of the face and esophagus are affected. Individuals may also feel tried, weak, have a low-grade fever, weight loss, and joint stiffness...

Treatment
The goal of treatment is to improve muscle strength and allow the individual to participate in normal daily activities. Individuals are given steroid drugs (prednisone, corticosteroids) that suppress the immune system...

Over time, these drugs often produce undesirable side effects, so treatment is usually begun with a large dose, then tapered to the minimum dose needed for maintenance. People who do not respond well to steroid treatment may be treated with other immunosuppressive drugs or intravenous immunoglobulin...

Individuals with DM are advised to avoid exposure to the sun, as sunlight worsens the skin rash. Physical therapy is often helpful in keeping joints from stiffening and freezing. Moderate exercise is also recommended...

Alternative treatment
A healthy diet high is recommended for all individuals with supplemental protein for those with severe muscle damage...

Prognosis
The majority of people continue to have some symptoms and require long-term treatment, but their degree of daily activity varies greatly...

Serious complications from DM include involvement of the muscles of the heart and lungs, difficulty eating and swallowing, and a tendency to develop cancer...

Definition of DM in a variety of medical books...

dermatomyositis /der·ma·to·myo·si·tis/ (-mi″o-si´tis) a collagen disease marked by nonsuppurative inflammation of the skin, subcutaneous tissue, and muscles, with necrosis of muscle fibers.

der·ma·to·my·o·si·tis (dûrm-t-m-sts)
n.
A progressive inflammatory condition characterized by muscular weakness, a skin rash, and edema of the eyelids and periorbital tissue.

dermatomyositis
[dur′mətōmī′ōsī′tis]
Etymology: Gk, derma + mys, muscle, itis, inflammation
a disease of the connective tissues, characterized by pruritic or eczematous inflammation of the skin and tenderness and weakness of the muscles. Muscle tissue is destroyed, and loss is often so severe that the person may become unable to walk or to perform simple tasks. Swelling of the eyelids and face and loss of weight are common manifestations. The cause is unknown, but in 15% of cases the condition develops with an internal malignancy. Viral infection and antibacterial medication are also associated with an increased incidence of dermatomyositis. Treatment of this disease may include prescription of prednisone; immunosuppressants may be used in cases that are unresponsive to prednisone. In order to prevent muscle wasting and preserve muscle function, physical therapy is required. Most cases respond to therapy, although the disease is usually more severe and treatment resistant in patients with pulmonary or cardiac issues...

dermatomyositis [der″mah-to-mi″o-si´tis]
an acute, subacute, or chronic disease marked by nonsuppurative inflammation of the skin, subcutaneous tissue, and muscles, with necrosis of muscle fibers. It is in the group of illnesses known as collagen diseases. Among a variety of symptoms that point to the onset of the disease are fever, loss of weight, skin lesions, and aching muscles. As the disease progresses there may be loss of the use of the arms and legs. Complications such as hardening may occur, similar to the changes seen in scleroderma. Occasionally steroids prove helpful in relieving symptoms, but the most beneficial treatment is physical therapy to maintain maximal use of the muscles.

dermatomyositis (dur´mtōmī´-ōsī´tis),
n (polymyositis, dermatomucosomyositis) a form of collagen disease related to scleroderma and lupus erythematosus. The skin lesions are diffuse erythematous desquamations or rashlike lesions. The skin symptoms are related to a variety of patterns of myositis.

dermatomyositis
an acute, subacute or chronic disease of humans, marked by nonsuppurative inflammation of the skin, subcutaneous tissue and muscles, with necrosis of muscle fibers.
canine familial dermatomyositis
an inherited disease found mainly in Collies and Shetland sheepdogs. Starting at a young age, there is hair loss, alopecia, scaling, crusting and sometimes ulceration on the face, ear tips, pressure areas over the carpus and tarsus, and the tail. Myositis may be severe, causing a stiff gait, difficulty in chewing and atrophy, or be unrecognized except by biopsy.

dermatomyositis
A collagen vascular disease caused by complement-mediated microangiopathic muscle fiber destruction, leading to loss of capillaries, muscle ischemia and necrosis and perifascicular atrophy Clinical Patches of reddish or scaly rash on bridge of nose, sun-exposed areas of neck, chest, dorsal hands, periorbital edema Risk of cancer ↑ Management Azathioprine, cyclophosphamide, cyclosporine, MTX, and prednisone are generally unsuccessful; high-dose IV Ig may ↑ muscle strength and ↓ neuromuscular symptoms in refractory dermatomyositis. See Polymyositis, Scleroderma.

 Another great day!

Wednesday, February 27, 2013

Highs -n- Lows Living with the Disease

Wednesday, February 27th

I have been reading my check out papers from my last appointment...it says I have diabetes...hopefully my glucose levels will return to normal again once steroids are eliminated from my treatment regiment...

I have prednisone induced Diabetes...I started at 40mg and am at 17.5mg for 4 weeks...when I decrease to 15 for 4wks and so on. I see my rheumatologist on May 22nd to see how I am adjusting to the decreased dose of prednisone...I would like to get off the prednisone so I'm hoping the other medicine will do its job....

Another great day!

Tuesday, February 26, 2013

Highs -n- Lows Living with the Disease

Tuesday, February 26th

I continue to research DM and Myositis...

Exercise and Physical Therapy Guidelines for People with Myositis...

Note: Because exercise increases my levels of CPK (creatine phosphokinase), your doctor should be aware of any exercise program you are doing so that lab results are not confounded by your physical activity.

For the same reason, it may be wise to avoid exercise the day before blood tests are done.

Why exercise?

While exercise will not "cure" myositis, it may help mediate certain aspects of the disease...Exercise can increase muscle strength, flexibility, and cardiovascular status, as well as improve your psychological well being...While it is questionable whether muscle can actually regenerate after it has been damaged by myositis, you can maintain and strengthen the muscle you have...You also may be able to prevent further loss of muscle tissue. Exercise also may enable you to decrease your medication levels...

A recent article in the British journal Rheumatology reported that there were no detrimental effects for 10 people with myositis who participated in an exercise study...They were given a home program involving 15 minutes of exercise done five times a week...The program consisted of warm-up, stretching, and strengthening exercises...A 15-minute walk was also recommended for program participants...

The results of this study were very positive:
Disease activity did not get worse
Average CPK level was the same before and after completing the study...
No significant changes occurred in muscle biopsy or MRI results...
Two people decreased their prednisone levels...People felt better about the status of their health...The people who were weakest in the beginning made the greatest gains...

When should I exercise?

Exercise only after getting your physician's approval. Then find an exercise program that you like, are comfortable with, and know how to do properly...To avoid accidents, exercise when you are mentally alert..
Exercise when you are well hydrated (drink water beforehand), well rested, and warmed up...

Know what stage of disease you are in. If you are in a flare, your muscles may be compromised. Since exercise and muscle contractions always produce "micro-damage" in your muscles, your muscles may not be able to heal as well in the midst of a flare...
Because exercise increases your levels of CPK (creatine phosphokinase), it can confound lab results. It may be wise to avoid exercise the day before blood tests are done. Also make sure your doctor is aware of your exercise program...

Do I need to see a physical therapist?

Because what is best for someone else with myositis may be inappropriate for you, an individualized program is ideal. Consider asking your doctor for referral to a physical therapist who can design the best program for you...

Physical therapists bring extensive knowledge of the musculoskeletal system to an exercise plan...They can teach you how to do an exercise correctly to avoid harm and maximize benefits...Physical therapists can provide alternative exercises to people with compromised muscles. Trainers in a gym may or may not understand the special needs of people with myositis... However, in order to have a physical therapist design an exercise program for you, you need to get a prescription or referral from your doctor...

What if the physical therapist has never heard of myositis?

Due to the rarity of myositis, it is possible that a physical therapist may not have heard of your condition...That does not mean that the therapist cannot treat you...Physical therapists who have a good knowledge base and practical experience should know what kind of program would most benefit a person with muscle inflammation...

Ask if the therapist has ever treated someone with a similar condition and gauge the response...If someone pretends to know exactly what will "cure" you, be skeptical. But be just as wary of a person who doesn't take myositis seriously, is unwilling to research your illness, and/or will not contact your physician for further information or clarification...

What kind of exercises should I do?

First and foremost, do exercises that you enjoy...Any exercise is good exercise as long as you pay attention to good body mechanics...If you dread your exercise program, you will not follow through on it...If possible, find a friend who will exercise with you... Friends are a good motivational tool and can give you support...

Start gradually...Don't jump into a full-fledged program - this is something you will work up to. Ideally, you should eventually include aerobic activity three to four times per week for 20 to 30 minutes, plus strengthening exercises two to three times per week...

Work on movements that:
Increase flexibility (such as stretching)
develop strength (working against resistance, such as bands or light weights), and enhance endurance (such as walking or running, which boost cardiovascular status.)

Always begin your workout with stretching exercises. Do not bounce when you stretch. Rather, hold stretches for 20-30 seconds...

As much as possible, do "closed chain" exercises. Closed chain means that you have both feet on the ground, like a closed system between yourself and the ground. Open chain means that you are sitting on a chair or do not have your feet on the ground. Closed chain exercises are believed to be very functional...

Range of motion exercises can be a focus of an exercise routine...
The easiest level is passive range of motion. Someone else moves parts of your body for you. For example, someone may move your arm around for you; you don't work the muscles at all. Passive range of motion exercises keep motion around the joint when a person is not able to do such exercises for themselves...

The next level is active assistive range of motion]. In this case, you move your arm as much as you can, and someone finishes the movement for you...

The final level is active range of motion exercises. You move that part of your body by yourself...

In cardiovascular activity, your goal is to raise your heart rate above its "resting" or "baseline" level for 15 to 20 minutes at a time...

How can I modify an exercise program if I have difficulty?

There are many ways to modify your exercise program.

Change the length of time you exercise.
Change your posture. You can either use gravity and body weight as resistance by standing up or you can avoid gravity by sitting or lying down or exercising in a pool. For example, raising your arm to shoulder height is different while standing on the ground than while standing in a pool.
Increase or decrease the number of repetitions (the number of time you repeat an exercise) or the number of sets (a group of repetitions).

Use resistance, like elastic bands or weights, and change the amount of resistance.

Increase or decrease the amount of time you rest between sets or repetitions.

Increase or decrease the number of times per week that you exercise.
Add or delete exercises in your program

How do I know if I am doing these exercises correctly?

Listen to your body. It will probably tell you if you are doing too much or if you are doing an exercise incorrectly. Move at your own pace. If something hurts, stop. Use pain as a warning sign to make you reevaluate what movement it was that you were doing that caused pain, and why the pain happened. Too many repetitions? Too much weight?
Forget the old "No pain, no gain" motto of exercise. While muscle fatigue and soreness are expected in any exercise program, whether for healthy or inflamed muscles, something may be wrong if there is pain. Stop and think about it.

Why is there always so much emphasis on rest?

Rest is very important. It allows your muscles to recover. You are doing micro-damage to your muscles every time they contract, and you need to let this heal. You also need to vary the pace and the types of exercises you do.
Start exercising gradually and plan your week around your exercise. That way, your "bigger workouts" will be followed by well-deserved periods of rest.

Most important, be careful, be safe, have fun, and keep a positive attitude!
 
Another great day!

Monday, February 25, 2013

Highs -n- Lows Living with the Disease

Monday, February 25th

Today I overdid it....I needed to lay down and rest for awhile...need to remember to listen to my body...so many changes taking place...

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When in AZ this year we stopped to get something to eat before going to the gem show...while there, a young homeless man walked up to us and asked us for a couple of dollars to get something to eat...so many times we automatically judge or make fun of people before getting to know them...we judge rashly, assuming the worst in people...

Judgment carries with it an attitude of condemnation...after all, no one knows what is in a heart, but Him. Let's pray for people rather than render judgments....

Another great day!

Sunday, February 24, 2013

Highs -n- Lows Living with the Disease

Sunday, February 24th

I was listening to a Christian CD today and It reminded me of a situation in my life around 29 years ago...I was a kindergarten teacher in AZ...at that time I was going through a difficult situation...

I was finishing up at work and went across the road to a small coffee shop to wait for my ride and out of nowhere came an older woman...she said to me..."Greater is He that is in me than he that is in the world"...after she told me it...she then disappeared...I wasn't sure where she went but from that time forward whenever I had trials or difficult situations in my life...I would say this to myself...reminding me of God's Spirit in me to help me through anything I may have to go through...

For those who take the time to call out to God...will discover a deeper beauty...in the midst of any situation...God is Greater than anything we are going through...

Father God, I confess a restless spirit...teach me to sit contentedly in the warm embrace of your grace...Amen!

I will not live in fear...I will step out and do what God is asking me to do...I may not know what my future holds but I trust God with it...

Another great day!

Saturday, February 23, 2013

Highs -n- Lows Living with the Disease

Saturday, February 23rd

I had this moment in time...when I didn't know who I was anymore...I was someone else...I could no longer do the things I use to...

I then began to realize I am who I'm supposed to be...I found again, who I was in Christ...God has a plan for me, He adopted me as His own and specificly picked me out...

I have a soul and live in this body...
my body is only temporary and my soul will live on...

I am learning to work with my situation and know it's part of a bigger plan...I will stop mourning what I can't do or don't have and be thankful for the many things I can...I'm pressing on...
I will love myself just the way I am, in a balanced way...

Another great day!

Friday, February 22, 2013

Highs -n- Lows Living with the Disease

Friday, February 22nd

What was I thinking???  Paul, Kris and I went to Rochester yesterday afternoon shopping and while we were there I decided I'd go to Cost Cutters and get my hair colored with a few foils and cut...it needed something...my scalp was already red, irritated and my scalp dry...it's worse...when will I learn...things are different now...

Another great day!