“Imagine the pain of someone holding a burning cigarette to your naked skin. Now imagine the pain without the cigarette … Imagine a sensation akin to an electric shock shooting through your shoulder blade. Imagine a deep, unremitting backache that leaves you permanently debilitated. Finally, imagine skin sensitivity so acute that even the draft from an open door is painful.” (1) Now add to this the worst pain of all – That of NOT Being Believed!! This is life with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS).
RSD/CRPS was first diagnosed and documented during the American Civil War, 1861-65. It was thought that RSD/CRPS could only occur after the person had suffered a gun-shot wound! RSD/CRPS is often called rare, but really it is a “hidden” condition. This is due to a number of reasons including many doctors may only see 1 or 2 cases, if any, in their entire professional lives. Those with RSD/CRPS are often house-bound or bed-bound. Add to this the fact that RSD/CRPS is often mis-diagnosed as other conditions such as Carpal Tunnel Syndrome, Fibromyalgia, Arthritis, and even mental disorders!
“One in five Australians experience chronic pain serious enough to disable them, costing the country approximately $35 billion a year. People who experience chronic pain (pain that continues for more than three months) often struggle to find effective treatment, and can experience disability and even depression.
About 5000 Australians are newly diagnosed with CRPS every year, and in any given year, about 22,000 Australians will suffer from CRPS.”(5)
RSD/CRPS is a condition which affects the Autonomic Nervous system, disrupting the messages from the brain to the site of an injury. While there are many theories as to what starts the process of RSD/CRPS, and why RSD/CRPS continues long after the injury has healed, at this time there is no definite answer. RSD/CRPS has been given many names over the years, including – Causalgia (a separate condition), Sudeck’s Atrophy or Dystrophy, Shoulder-Hand Syndrome, Algodystrophy, Algoneurodystrophy, Post-Traumatic Dystrophy, Pain Dysfunction, and many more. The most recent is the internationally agreed name of Complex Regional Pain Syndrome (CRPS), agreed by the treating doctors, not necessarily by those who suffer from this condition. At last count I had found over 80 different names!!
Some of the symptoms common to RSD/CRPS sufferers include:
Chronic pain after injury/surgery/trauma - pain that is out of proportion to the injury/surgery/trauma
Burning pain in the site of the RSD/CRPS
Cold/Hot sensation(s) in the RSD/CRPS site(s)
Discolouration of the RSD/CRPS site(s)
Limited range of movement
Extreme sensitivity to touch (even a slight breeze or soft clothing)
Other less common symptoms with RSD/CRPS, may include:
Rosacea (redness of skin - often on the face)
Brain Fog (brain becomes so muddled with pain, thoughts are jumbled)
Pain associated with other 'normal' bumps and scratches becomes extreme
Body hair may darken or become brittle or coarse (often only in RSD/CRPS affected limb)
Hair on the head may change texture and/or colour
Extreme tooth decay or tooth loss (this is more often associated with the side effects of the medications taken for pain management, but is still a very real issue for those with RSD/CRPS)
Lack of appetite
While not strictly a symptom of RSD/CRPS Depression is often associated with this condition. Some doctors may say that the pain is caused by the depression, when in actual fact it is the other way around. Trying to live in chronic pain will often result in depression.
To complicate matters RSD/CRPS is a very individual condition, no two sufferers will have exactly the same symptoms, and treatment should be designed carefully for the individual, by a team of medical professionals.
Also trigger factors will vary from person to person, but often include the weather patterns, (especially stormy weather), drafts, air-conditioning, change in temperature, water from a shower, stress, noise and movement such as in a car. For this reason diagnosis can be difficult, added to which is the problem that despite all the literature available there are still medical professionals who won’t accept that the condition exists.
“The diagnosis of RSD/CRPS may be confirmed by a thorough clinical evaluation that includes a complete history of symptoms and a comprehensive physical examination. Other specialized tests, (eg, skin temperature readings, x-rays, thermographic studies, and bone scans) may also suggest the diagnosis.” (3)
“RSD pain is ranked 45 on the McGill Pain Index, which means it is rated as the most painful chronic pain disease that exists. It is above cancer (non-terminal), and both medicated and non-medicated pregnancy.” (6)
SO WHAT CAUSES RSD/CRPS?
RSD/CRPS is usually caused by trauma/injury, and/or surgery, but in up to 30% of cases the cause is unknown. Some cases have been linked to diseases such as Heart Attack, Stroke, Diabetes, Carpal Tunnel Syndrome, TMJ and some forms of Cancer. The literature shows that the majority of RSD/CRPS is caused by “minor” trauma, such as a pricked finger, a paper cut, a simple fall or knock.
While it seems difficult to attribute a condition as severe as RSD/CRPS with minor trauma another problem can be that the time between the trauma and the onset of symptoms can vary from instantaneous, up to 12 month later. Most of us can’t remember how we got a bruise a couple of days ago, let alone 12 months ago!!
You can see from this very basic summary of RSD/CRPS that the condition is complex, difficult to diagnose and treat and it affects the sufferer and their family alike. With extreme RSD/CRPS it can totally disrupt lives so much that families breakdown and friendships are lost.
There are ways to help yourself, and it is important to remember that RSD/CRPS will be different from person to person, and just because you don’t have the same symptoms someone else does, it doesn’t mean you don’t have RSD/CRPS, and it doesn’t mean that you should feel guilty for ‘complaining’ about your RSD/CRPS, especially the pain! Pain is pain, and once it has reached a point where you get little or no relief from it, where it is a difficult situation, or where it affects the quality of your life,you have every reason to tell others about it.
Sadly, RSD/CRPS is often called the "Suicide Disease/Condition", because many who are not diagnosed or treated early enough find it too hard to live in chronic pain.
This site is for general information purposes only. I am not a Medical Professional. I have lived with RSD/CRPS since 1991, and so I have a good understanding of the issues of this condition. Information printed here is to be used as a guide only, and before trying any treatments you should consult with your GP and/or Specialist, with regard to your individual medical condition and/or other medical issues.
The information supplied by The Australian RSD/CRPS Support Group endeavors to be clear in its meaning and context.
The Australian RSD/CRPS Support Group accepts no responsibility for any misinterpretation of the information supplied.
The Australian RSD/CRPS Support Group accepts no responsibility for an individual’s choices after reading the following information, or other printed and/or written information supplied. Or after discussing issues via the telephone or internet.
The Australian RSD/CRPS Support Group
PO Box 9
POINT PASS SA 5374
Email – firstname.lastname@example.org
Phone – 08 85 811 007
Mobile – 0401 794 884 (send text only please not voicemail , with your number and I will call you back, as soon as possible)
Reflex Sympathetic Dystrophy - RSD