Living with PAIN

Living with PAIN is a new website dedicated to raising the awareness of CRPS (Complex Regional Pain Syndrome) and sleep deprivation.

As sufferers of CRPS (Complex Regional Pain Syndrome) we read all we can about our condition - especially when we get the first diagnosis. Most of the websites that are about at the minute focus mainly on the medical aspects - after I had read all I could about the medical side of things, what I really wanted to know was, how was it going to affect me and what impact was it going to have on my life and those around me. Sadly I struggled to find any websites that seemed to have that personal side covered - to this end I created the Living with PAIN website.

I chose the name as I wanted it to be a positive website. Yes, there will be things that you will read that will seem negative, but I want to try to show that you can ’live’ with CRPS and when I say living with pain, I mean live a full life, not just survive with pain, feel like you have a future.

One thing that I feel is important is that people close to you read some parts of this website - maybe they won’t want to know the in's and out's of the condition - but I do think that if they read the parts that talk about the impact that it will have on all your lives it will help both you and them be prepared for what may be in store for the future - and hopefully make things a little easier for you all.

Chronic Pain

A Simple Explanation

Chronic Pain means pain that doesn't go away. It can be severe, but the word chronic refers to long lasting rather than severe. 20% of the population live with chronic (and persistent) pain, and about half that number find that pain gets in the way of doing normal everyday activities.

Chronic PainMany people think that chronic pain means extreme pain. Well, this is not really what it means. Although chronic pain can be really extreme, it actually has to do with the duration of pain rather than the severity of pain. We all understand ACUTE pain, this is the pain we grow up with. We hurt ourselves, experience pain, then heal and the pain goes away. That's "normal". Chronic or persistent pain is pain that lasts for more than three months, or beyond normal healing time. It doesn't obey the same rules as acute pain. It is seen as somewhat of a mystery.

It can be a result of chronic illness, like arthritis or diabetes or it can be a result of traumatic injury that leaves lasting pain, such as after a motor vehicle accident, or sometimes it is called "medically unexplained" pain. This does not mean there is no physiological reason for the pain, it is just that it cannot be described or detected using current medical technologies like x-rays and CT scan.

The nervous system changes as pain continues. Researchers have shown that the nervous system can adapt to pain and make it worse. A phenomenon called Central Nervous System Sensitivity can actually worsen the experience of pain. Thoughts, feelings, and movements are important in that they can increase or decrease pain by exciting or inhibiting this process. This is because there are chemicals associated with thoughts, feelings and movements. Also making it worse is the progressive deterioration in fitness that occurs when normal activities are given up over time.

Because relieving persistent pain can be difficult, it can take time to get back to a fuller, more rewarding life. Managing persistent pain is about much more than just using medicine. By being actively involved in a multidisciplinary approach to managing your pain, you can help your recovery and improve the quality of your life and how you live it, even though your pain persists.

"As always, I thank each of you for your visits, and hope my website will continue to be a helpful tool to you. Most of all, I hope you find that you can enjoy a good life - even in the face of chronic pain. "

- Judi

Once pain persists your role in managing it becomes really important. Understanding that what you think, feel and do on a day-to-day basis will have an effect on your pain is a good way to start to take some control over your pain.

Many people find that talking to others is an important way for them to learn new skills and find the courage and inspiration to challenge their pain. For more information about joining a support group, go to our Links page.

Chronic pain can have a significant effect on personal relationships with both friends and family members. Caring for someone who lives with chronic pain can leave you feeling helpless and frightened sometimes. If you care for someone who lives with chronic pain, we may be able to support you too.

Complex Regional Pain Syndrome

Type 1 : Reflex Sympathetic Dystrophy (RSD)

Type 1 - also known as reflex sympathetic dystrophy (RSD), Sudeck's atrophy, reflex neurovascular dystrophy (RND) or algoneurodystrophy, does not have demonstrable nerve lesions.

Type 2 : Causalgia

Type 2 - also known as causalgia, has evidence of obvious nerve damage.

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