Tuesday, August 28, 2012

Reflex Sympathetic Dystrophy

RSDReflex Sympathetic Dystrophy (RSD) is a debilitating disorder involving the human skin, nerves, blood vessels, and bones. The sympathetic nervous system reacts to a stimulus for example, an injury. Blood flow may be affected in reaction to a burn, cut, or severe temperature changes. To prevent you from further using an injured limb, the limb swells. Sometimes inexplicably an abnormal or prolonged sympathetic reflex begins in a limb as reaction to a trauma.

The sympathetic nerves become overactive and can cause a variety of symptoms that may cause debilitating consequences. There can be many symptoms, but the most common one is burning pain. Some of the other symptoms include swelling, temperature change, skin color change, diminished motor function, and severe sweating. These symptoms usually happen in a limb but can occur in other body parts eg. face. Symptoms may vary with each individual who has CRPS type one (RSD). Read about other experience or share your own in our RSD Forum.
Reflex Sympathetic DystrophyRSD is the common name used for Complex Regional Pain Syndrome (CRPS). The name of Reflex Sympathetic Dystrophy (RSD) was changed to Complex Regional Pain Syndrome (CRPS) in 1993 by the International Association for the Study of Pain. The are 2 forms of CRPS. The only difference between type 1 and type 2 is type two is easier to diagnose. CRPS type one is formerly known as RSD and CRPS type two was causalgia. Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy are used synonymously today. RSD should not be confused with rhabdomyosarcoma (rhabdo) which is another debilitating disease.

RSD Causes

- Trauma (often minor)
- Soft-tissue injuries
- fractures heart disease (caused by inadequate blood supply)
- Spinal cord disorders
- Cerebral lesions
- Infections
- Surgery
- Repetitive motion disorder (RMD)
- carpal tunnel syndrome

In many cases, a definite cause of CRPS Type 1(RSD) has never been found. It is not known why these factors cause CRPS but there are many hypotheses that are the subject of research around the world even today.

CRPS type two (causalgia) is defined by burning pain, allodynia, and onset usually occurs after nerve injury but it may be delayed. The most common nerves involved are the median, sciatic, ulnar, and tibial. The burning pain is constant and exacerbated by:

- light
- touch
- stress
- temperature
- movement of the limb
- emotional disturbance

Abnormalities in skin temperature and blood flow may occur as well as sudomotor dysfunction. Dystrophic changes may occur in the skin, hair or nails.

Symptoms  OF RSD

The main difference between CRPS type 1 (RSD) and CRPS type 2(Causalgia) is that Type 2 is caused by a proven nerve injury. Recent research (see Medical Updates) shows CRPS Type 1 is nerve injury and NOT a somatic disorder. The symptoms of both diseases are identical.

There are four cardinal signs that indicate CRPS Type 1 and 2:

PAIN is constant and characterized by burning. The non-relenting pain is enhanced with every movement.

SWELLING is sometimes localized, but often unrelenting, and progressive. Swelling intensifies the pain and promotes stiffness which can be the beginning of atrophy and deformity.

When tissue is injured or inflamed, excess fluid enters the tissues from damaged blood vessels within these injured tissues.  If the veins cannot remove all of this fluid, the part swells (edema).  However this swelling is usually only temporary, because the tissues heal and the blood vessels no longer leak excessively.
Swelling is one of the symptoms of RSD.  Early in the course of the disease, this inflammatory process causes edema.  The swelling in RSD may exist far longer than it would take normal tissue to heal because RSD:

- prevents healing
- causes constant inflammation
- may cause dilation of the arteries which will cause more fluid to leak, and may cause the veins to contract, which also prevent the normal removal of non-protein fluid from tissues.
- It is pretty easy to see that the edema of RSD may last for long periods of time.

STIFFNESS, like swelling, is progressive resulting in less motion of the joints, which again, results in increased swelling and pain This in turn, can produce further deformity and joint changes.

DISCOLORATION indicates circulatory changes that diminish the nutrition of the tissues of the skin, ligaments, bones and tendons. The result is thin, shiny skin, pencil-like fingers and changes in ligaments. This further contributes to stiffness and pain. CRPS in the upper extremities had been classified in the following five ways, based on the location and intensity of symptoms.

RSD & CRPS Frustration

RSD/CRPS is frequently dismissed by health professionals for many reasons including:
They don’t understand the diagnosis and/or they are not familiar with the disorder.
They understand the diagnosis but lack experience in how to treat it properly.
Many think that the client is pretending to be ill.
RSD/CRPS is thought to be hopeless and there is no cure. (There is hope!)
RSD/CRPS is purely psychological and that it is not a medical condition, i.e. “It’s all in your head”. (This is a myth.)

Many people who work within the health care system dread accepting a client with RSD because effective treatment requires an ongoing, almost daily assessment of the condition to develop the proper regimen. It is far too time consuming for most clinics to adequately care for RSD clients.

Due to the nature of RSD, the condition can quickly change for better or worse for reasons that are not fully understood. Therefore it is necessary to schedule evenly spaced treatment sessions in order to benefit the client.

The health care provider must address the plan of care very carefully once the diagnosis is made and must thoroughly customize therapy for each client. All individual characteristics (psychological, social, physiological) must be taken into account during therapy.

Communication between the family members, health professionals, and the client must be clear, ongoing and become well established. It is common for the client to have failed in a previous program if a positive, creative, caring relationship was not established. If either the client or the therapist senses a communication problem, it is far better to acknowledge that another clinician may be of greater benefit to the client’s progress.

RSD DIAGNOSIS

Diagnosis is determined through X-rays, three phase bone scan, skin tests, joint fluid analysis, and thermo graphic studies. Sometimes the phentolamine test is used. Thermography is more sensitive than any other diagnostic tool when diagnosing RSD according to Dr. H. Hooshmand. He states that diagnosing RSD without thermography is like diagnosing a heart attack without an EKG. It should be noted that the CT scan, EMG, and MRI studies may be normal during the first stage of RSD. Along with the tests, signs and symptoms of RSD are taken into account. All the pieces of the puzzle must fit to render a proper diagnosis.
NOTE: In some parts of Canada, thermography is available but other areas do not have this diagnostic tool. We are trying to get better diagnostic tools which will mean earlier diagnosis of RSD and faster, more efficient treatment.

WHAT CAN BE DONE?

The primary task is to eliminate or treat all possible causes. If there is no known cause, or if with the removal of the cause, the symptoms do not satisfactorily disappear, then there are only the symptoms of RSD/CRPS to be treated.  Before undertaking any skin treatment, whether it is a mole removal, birthmark removal, or expected case of RSD, it is important that you consult a trained medical professional.

SUCCESSFUL TREATMENT OF RSD/CRPS is dependent on:
Early diagnosis. If diagnosed early, the prognosis is very good.
Begin treatment of the underlying cause, if there is one. If not, then focus on the treatment of the CRPS process.

Effective sympathetic blocks by blocking nerve impulses with anaesthetic agents used in severe pain. Blocks may provide permanent or temporary relief. Sustained physical therapy to maintain flexibility, strength, and range of motion are recommended. No use of the limb can result in atrophy and eventually not being able to use the limb.

Progressive management techniques, if necessary for example, biofeedback to control pain and blood flow, pain management techniques, counseling, etc.

MAKING CIRCUMSTANCES FAVORABLE
It is the task of the practitioner to give advice concerning the limits of the client’s endurance. The outcome of the treatment is not only in the hands of the doctor or physiotherapist but also in the hands of the client himself. Listening and following advice regarding the stress applied, in relation to the current stress tolerance, (of the affected extremity) becomes a problem that reoccurs in treatment. The client and the doctor can work together towards the common goal.

Too much or too little exercise of the arm or leg is not good. It often requires an adjustment of lifestyle and sensible handling of the burden of the affected arm or leg. Rehabilitation is appropriate and must be ongoing. One must make the circumstances for recovery as favorable as possible.

Due to the mysteries surrounding CRPS, problems can arise concerning the client’s disabilities, social functioning, employment, relationships, and the environment. These problems also need to be addressed.

RSD REHABILITATION

As part of the treatment, if recovery fails to materialize, and if the client is limited by circumstances in everyday life i.e. getting around, then special steps may be necessary. A referral to a rehabilitation specialist is always sensible in this case.

We know that a minority of CRPS clients will be left with disabilities and that treatment may be insufficient for them. Client and doctor must keep an eye on the treatment, its progress and make changes if necessary. If recovery is complete, people can, in principle, function fully again. Even with incomplete recovery, work is often possible but one must take into account chronic pain, and the decreased ability to bear weight.

THE SECOND OPINION
For the client, there is always the possibility of asking for a second opinion. This should be done in consultation with the doctor, but permission is not necessary. A second opinion certainly does not mean that the doctor who gives it will then begin treating his client. However, a second opinion is reasonable in cases of RSD/CRPS.

Sunday, August 12, 2012

Reflex Sympathetic Dystrophy – How Barby Survives RSD Symptoms

Learn how this survivor copes with the symptoms of Reflex Sympathetic Dystrophy (RSD) – she was diagnosed 10 years ago. Her tips for living with chronic illness can change your life!
You may be surprised to learn how many people are diagnosed with Reflex Sympathetic Dystrophy every year…

“More people have Reflex Sympathetic Dystrophy than Multiple Sclerosis, HIV, and breast cancer combined,” she says. “There is upward of 78,000 new cases of Reflex Sympathetic Dystrophy diagnosed each year in the US alone. RSD can affect anyone, regardless of age, race, gender, or financial status. Paula Abdul – a famous singer – has Reflex Sympathetic Dystrophy and struggles with the same physical battles that we as chronic care patients deal with every day.”

Does it help to know you’re not alone in your struggle to live with Reflex Sympathetic Dystrophy? Here, 39 year old Barby Ingle from San Tan Valley, Arizona, describes what it’s like to be a 10 year veteran of Reflex Sympathetic Dystrophy.

She is the author of RSD In Me! A Patient And Caretaker Guide To Reflex Sympathetic Dystrophy And Other Chronic Pain Conditions - as well as another book on Reflex Sympathetic Dystrophy called ReMission Possible!

How Barby Developed Reflex Sympathetic Dystrophy (RSD)

I developed symptoms of Reflex Sympathetic Dystrophy after an auto accident in 2002, and wasn’t properly diagnosed until 2005. I am currently in remission. Any time my body perceives a trauma, I can come out of remission. Therefore, I am unable to do a lot of physical activity. I have to be careful and stay away from activities that can injure me.

As I search for a cure for Reflex Sympathetic Dystrophy, I have become my own best advocate. After seeing over 100 healthcare professionals, having major surgeries I didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, and so much more – I did not give up or give in! I was tested to my limits and realized they are past the boundaries I placed on myself. If I can do it, anyone can.

I learned to take a proactive approach to my medical care, an empowering step that helped in my health journey.

What is Reflex Sympathetic Dystrophy?

Reflex Sympathetic Dystrophy is a progressive Autoimmune Neurological condition that affects multiple systems in the body, and needs to be treated early so that disability does not take over.
I know how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you’re saying about your symptoms of Reflex Sympathetic Dystrophy.

What Barby Wishes She Knew When She Was Diagnosed With RSD

I wish I would have known that the healthcare system is not always what we are led to believe. People look up to their doctors and put total faith in them. I have learned though my own health experiences and through volunteering with the Power of Pain Foundation that I am responsible for me, just as you are for you.
It is important to remember that doctors study a particular practice of medicine. Just because they are a Neurologist doesn’t mean they can treat Diabetic Neuropathy, Multiple Sclerosis, Lyme, and Reflex Sympathetic Dystrophy. Each doctor gets a small variety of a medical field and then finds a part of a specialty that they love and work on with great ease, research and education.
Therefore, it is important to find a doctor that specializes in your specific condition. Become the Chief of Staff of your own medical team!

Tips for Living With Reflex Sympathetic Dystrophy

Prepare yourself for changes will keep your life with Reflex Sympathetic Dystrophy on a positive track. Use your community resources such as food banks, church supports, and non-profit support to get the help you need. Help is there; you just have to be willing to take it and put in as much as you can to keep your life on track.
Be prepared to face the pain that the symptoms of Reflex Sympathetic Dystrophy can bring, and have a plan. In order to remain as independent as possible and to minimize the disruption of daily life, consider changes to you daily routine and surroundings. If you have Reflex Sympathetic Dystrophy, you want to stay independent.
Unfortunately, pain still poses a problem for patients who are under-diagnosed, over-diagnosed or misdiagnosed with Reflex Sympathetic Dystrophy or other chronic illnesses. Controlling the pain you are in is essential to quality of life. Knowing the characteristics of pain and why it is happening will give you an advantage in coping with it.
Taking control of your life and being responsible for yourself will help you cope with the symptoms and treatments of Reflex Sympathetic Dystrophy.
If your RSD symptoms include fatigue or exhaustion, read Too Tired to Work? How to Survive Chronic Fatigue.

Tips for Family and Friends

Take care of yourself first! You cannot care for someone with Reflex Sympathetic Dystrophy if you’re not keeping yourself together. And, try not to feel guilty when you need a break to do something for yourself. No one can be there for someone else around the clock.
You might also consider joining a support group for people affected by Reflex Sympathetic Dystrophy.