You have recently been diagnosed with CRPS (Complex Regional Pain Syndrome), formerly known as RSDS (Reflex Sympathetic Dystrophy Syndrome). No matter how old you are, you are probably a little scared, confused, angry, or you may be relieved that you have a diagnosis and not going insane. There will be many emotions that you will go through as you learn to adjust to your life with CRPS, and not only you, also the people who love you, will also be trying to deal with whats happening to their loved one. Sometimes (well I know I do) I forget that it is affecting not only me, but also my husband and children are all having to make adjustments.
Hopefully this website can help you to answer some of the questions you are asking yourself. Most people have never heard of CRPS/RSD until they are diagnosed, or someone close has been diagnosed, we need to spread the word, to not only the general public but also to many professionals. November is CRPS/RSD awareness month, I would love it, if we could get the word out there to raise awareness especially in November as we aim to make November "International CRPS/RSD month" rather than the few countries that only acknowledge it now.
So what exactly is this thing called CRPS?
Complex regional pain syndrome (CRPS), also called Reflex Sympathetic Dystrophy syndrome (RSD), is a chronic pain condition in which high levels of nerve impulses are sent to an affected site. Experts believe that CRPS occurs as a result of dysfunction in the central or peripheral nervous systems. Good progress can be made in treating CRPS if treatment is begun early, ideally within 3 months of the first symptoms. If treatment is delayed, however, the disorder can quickly spread to the entire limb and changes in bone, nerve and muscle may become irreversible.
Clinical features of CRPS have been found to be neurogenic inflammation, nociceptive sensitisation, vasomotor dysfunction, and maladaptive neuroplasticity. The symptoms of CRPS usually initially manifest near the site of an injury, which is usually minor. The most common symptoms overall are burning sensations, stabbing pain, grinding pain, severe tingles and electrical sensations. Moving or touching the limb is often intolerable. The patient may also experience muscle spasms, local swelling, abnormally increased sweating, changes in skin temperature (usually hot but sometimes cold) and color (bright red or a reddish violet), softening and thinning of bones, joint tenderness or stiffness, and/or restricted or painful movement. Falls, pre syncope and syncope are infrequently reported. The symptoms of CRPS vary in severity and duration.
Where to from here?
You may be feeling overwhelmed by all of this, though life may have changed for you and your family, life still does go on :).
The first thing to ask for if not told is physiotherapy, keeping movement going is of upmost importance also keeping the sensitivity to a minimum can make a huge difference, simple things like moving a feather on the part with CRPS, or if it is a foot or hand, putting it in a container of uncooked rice and moving it around and many more things which can be found on the Moving Forward page found 'here'.
You are not alone, join a Facebook group if you want more support!
But remember you are not alone, you might be surprised how many people actually have CRPS, there are support groups online for you to let of some steam if needed, or to talk about your achievements.
I know of 2 private Facebook Support Groups in New Zealand, you can find them under NZ links on the Important Links page. - and also if you have a minute I would love it if you left a comment in the guestbook to the right thanks.
I also have a Facebook page, which can be found "here" or click on the link at the top of this page, this is a public page where I will be posting about anything CRPS, also feel free to post as well, but do remember the page is public.
I am hoping to set up support groups in area's if you would like to join one, email me email@example.com and I will try and set you up with other people in your area.
I am not an expert in CRPS/RSD, so if there is any information that is incorrect or you have links you would like me to add, then please email me at firstname.lastname@example.org.