Sleep

Sleep is not something that comes easy, especially now as the disease spreads throughout other regions of my body. Due to hypersensitivity, I often cannot have even a sheet touching my leg, which rages between burning hot and freezing cold; constantly changing. Now that it has spread into my back and right arm & shoulder, I am finding it even harder to sleep. Thankfully, I sleep on facing down, so on my stomach, but this doesn't stop the pain.

Pain and heat radiate throughout my whole body, making it extremely uncomfortable and causing me to not sleep. I will often move from my bed to the recliner in the lounge or lounge chair on the back deck outside, trying to find a comfortable position even to nap.

I can be absolutely exhausted, not being able to keep my eyes open, when pain shoots down my leg from my back, spasming and burning throughout the leg and back. This is the most uncomfortable and unrelenting pain I cant even explain, it's just not good at all :(

Of course, severe lack of sleep then affects me. I cannot function properly and I struggle to deal with the pain more, due to my body not being able to rest. Although I take medication to aide sleeping - Chlonazepam, which is a Neurocontin Valuim like tablet, on top of my Gabapentin tablet, often it does not help with the sleep, just sends me into a super floppy dozey state of awakeness, where I cannot walk, I just fall over. Medications are the trickiest thing with trying to manage this disease!!! While I react to a lot of medications, trying to get it to a point of helping is hard. To get even 30% relief is good, but often its none. But I have nearly exhausted my list of options with medications, so far Gabapentin has the least amount of side effects, compared to others...so I'll continue to use it.

So even though I didn't sleep last night, sleeping from 8-11am during the morning, my body still hasn't had that proper rest!! So if I dont sleep tonight, look out hahaha :)

Kate xx

Stay strong!!!

Just a few quotes I love, they remind to keep strong, keep positive and keep fighting on...with a smile!! xx K

What is CRPS?

What is CRPS?

CRPS is Complex Regional Pain Syndrome, it can also been known as Reflex Sympathetic Dystrophy (RSD). It is a pain disorder in the central nervous system that causes extremely painful, long term, neuropathic pain within affected parts of the body. It rates at a high 42/50 on the McGill Pain Scale, that's higher than childbirth - and it's long term, chronic pain, everyday!!! It cause extreme swelling, colour changes in the skin of the affected areas, hypersenstivity, extreme burning and extreme cold effects to the affected areas, muscle spasms and it is known to spread as well. Due to Neuropathic pain starting within the central nervous system and affecting the brain, it can also affect your short term memory, fine motor skills and your ability to function normally. CRPS is known to cause similar symptoms like Chronic Fatigue, with the pain exhausting the body and causing whole body pain and exhaustion, just wanting to sleep and not able to function correctly - medication can also cause this. It is a non-curable disease, but it can be managed!

For more information, please have a read through the links below!

http://www.bodyinmind.org/what-is-complex-regional-pain-syndrome-in-plain-english/
http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm
http://www.rsds.org/2/what_is_rsd_crps/
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Complex_regional_pain_syndrome

There is so little knowledge and understanding of CRPS that is often misdiagnosed for many months between different medical professionals before it is diagnosed - this is what happened to me.

Well, so with a diagnosis, you can get treatment and heal it right? Well no, not always with CRPS!! Medication is often a first port of call in trying to get some relief, but they all bring nasty side effects. Often finding a correct medication and amount can take months. Then there are different treatments, some still in trial situation, some without guarantee of any success. While there is no clear cure for CRPS, there is hope for treatments as they develop with current research! Pain medication can only help reduce the effects to help manage, but let's face it: NO ONE wants to be on full time medication!!

Getting into a local chronic/persistent pain clinic can be essential getting the help needed. Including Physiotherapy, Occupational Therapy, Psychologist and Pain Specialists and others depending on the services.

Since I don't want to share others photos without permission, I'll share a few of my leg where it all started, just a few that are all okay to share, not too squeamish!! Swelling, discolouration and it means I am usually on my crutches fulltime, as well as on medications full time!!

Stay tuned for more, I'm determined to educated as many as possible!!!

Welcome!

Hello and welcome :)

I'm going to slowly enter the world of blogging, just so I can get to understand it all some more. I am blogging because I love to write, I love to help others and I desperately want to help spread awareness about Chronic Illnesses; in particular CRPS!

Why? Because no one seems to understand chronic illnesses and the way the affect you, the way you live and how there is so much still unknown in treatments and medications!! I want to silence the taboo's of: "its all in your head"; "you're just looking for attention; "you don't look sick"; "just tell yourself you're not sick" - and change people's perspectives about chronic illnesses. It's just not that simple!!!

I want to reach out to those who are affected by Chronic Illnesses, to share some laughs and funny stories, to share in times of tears and pain and to help sharing in the awareness of new hope. To share, educate and help others around us, including family and friends, as to the real side of the illnesses that try to take over our lives!

I suffer from a condition known as Complex Regional Pain Syndrome (CRPS) also known as Reflex Sympathetic Dystrophy (RSD) - and up until I was diagnosed, I had no idea what it was or what I was in for! No one can prepare for the pain or the changes in your life one must deal with, with something like CRPS. I will plan to blog my story one day, when I feel like, it's quite the lengthy story.

So I'll begin this blog and the journey of hopefully something bigger, better and greater - HOPE! I have this disease, but I also have the chance to help others, so this is my chance to start!!

Until the next post,

Kate x