Often my pain is not taken seriously and the lack of respect & understanding that I so desperately need becomes a cause for stress, anxiety and frustration, and results in more emotional pain. This lack of understanding can come from many people, including doctors not knowledgeable about the disease, who make judgements about me without knowing all the facts. The pain of CRPS is unlike no other, CRPS is a serious progressive disease with a variety of symptoms.
In 2007 my life changed dramatically in ways I never imagined, some of the most disturbing things are:
- There is
no safe place, when I go to bed it is not a warm safe place to relax, pain can
invade my body at any time. I am often sleep deprived and emotionally and physically exhausted.
- The burning pain is always present. The shooting pains do not happen all the time but they happen without warning 24/7 always when I am least
expecting them. Imagine being hooked up to a machine that could deliver severe
electric shocks without warning at any time, you would not want to stay hooked
up to this machine for long if at all but for me I am permanently ‘hooked up’.
- CRPS pain is neuropathic pain, something of which most people have no experience-see FAQ. It is not pain you can ignore, you cannot control it with a
couple of Panadeine and a rest. You cannot stop it with mindfulness.
- Sometimes medicine is at a loss to help us, not everything is fixable. I have had to learn and accept this the hard way. Doctors understand this fact but the majority of the population do not. The news is full of stories of medical advancements and amazing operations. "Surely something can be done about the pain in your foot" they think, I see it in people's faces, they are not convinced but they have not traveled the same road as I have.
- Many professionals treat all patients with pain using the same approach.
- One of the huge frustrations is that what works well for one person may do absolutely nothing for someone else and the pain of CRPS varies from person to person in terms of the symptoms, the severity of the symptoms and the level of debilitation. Some people do not experience the high scale shooting pains that prevent me weight bearing; these patients may well respond to physiotherapy and other treatments if they are diagnosed within the first 3 months, however others will not respond to the same treatment, in fact the treatment could well exacerbate their pain and make the condition worse. When you have CRPS you will try just about anything if you think it could help, so we often end up seeing medical professionals untrained in recognizing and treating CRPS. Some of them will think they know all about it when in fact they do not know enough at all. Ideally we need to consult doctors, physiotherapists, and other medical professionals who have an expertise in the area of CRPS and neuropathic pain who will listen to us and work along side with us; they will make us feel respected and understood, they will believe us. Finding professionals like this is not easy but it is one of the first steps to coping with this disease and even it the treatments they offer do not help the pain, at least they will try and therefore we feel supported.
- When meeting other people they are often empathetic and occasionally some will assume they know what my pain is like. They may at some time in their lives have experienced severe pain but this pain would have been successfully treated and in time become history, or they may have pain associated with other conditions but pain that is not significantly disabling, persistently severe and unmanageable. I am aware that some people probably believe that I think too much about my pain but I have no choice, my pain is with me 24/7, it is a full time job. It does not let me forget it, it is physically and emotionally all consuming with no end in sight; that is my reality.