Hey my Lovelies,
November is CRPS Awareness Month & the first Monday of November is dedicated to raising awareness for CPRS by wearing Orange … So I gladly wear my orange scarf for CRPS… but mainly because it’s cold, Brrr ❄
I’m just here, attempting to get this article typed as my entire body bursts into flames. Flames? Yes, flames…
Continue reading to find out about the most painful medical condition known to man!
What is CRPS?
1 in 3,800 people develop Complex Regional Pain Syndrome (CRPS) in the U.K. every year and charities such as Burning Nights CRPS are dedicated to raising awareness for sufferers of this soul draining illness.
CRPS is an abbreviation for – Complex Regional Pain Syndrome which is a little-understood neurological system disorder that causes its victim to suffer constant, very severe pain… every second of every day.
Complex regional pain syndrome is when the nervous system never stops sending pain signals to the brain. Those with a functioning nervous system have pain when their body experiences discomfort and signals are sent from the brain, down the spinal cord and out to the source of pain. However, with CRPS patients the signals may get caught up and never stop sending pain signals, leaving the nervous system hyperactive due to an abnormal reflex developed in the spinal cord. Ultimately CRPS is malfunctioning of the nervous system.
CRPS is the most painful medical condition known to man as it reaches a 45/50 on the McGill Pain Scale. CRPS is nicknamed “the suicide disease” because it is so painful and it is hard to find Doctors who understand this condition.
Type 1 & Type 2
Complex Regional Pain Syndrome (CRPS) is a chronic, progressive illness. The main symptoms are severe pain, swelling, and changes in the skin.
Hold up a sec., you’ll never guess… There are TWO types of CRPS (I know right, as if it wasn’t confusing enough *aggressive eyeroll*)
Type 1 – Also known as reflex sympathetic dystrophy syndrome (RSD)
- Some people have CRPS Type 1 – which USED to be Reflex Sympathetic Dystrophy (RSD), which develops without nerve damage. The nerve isn’t directly damaged – only soft tissue damage or tendon or blunt force trauma. (RSD) CRPS Type 1 most often follows trauma to the extremities, some conditions that can trigger RSD are sprains, fractures, surgery, damage to blood vessels or nerves and certain brain injuries.included; stubbing a toe, spraining an ankle and incidents alike. This is the most common type with about 90 percent of people with complex regional pain syndrome have type 1.
Providing treatment early to complex regional pain syndrome (CRPS) patients is vital to delaying the damage and relieving the pain caused by CRPS. While there is no cure for CRPS (which used to be called reflex sympathetic dystrophy—RSD), there are a number of treatments.
Type 2 – Complex Regional Pain Syndrome (CRPS) – former name Causalgia
- Others have CRPS Type-2 – Which used to be called Causalgia. The original name. But it was inclusive of direct nerve damage from bullet wounds from the period during which it was named during the civil war. Causalgia means fire + pain and is a severely painful and chronic condition which develops as a result of an injury to a peripheral nerve. Nothing is proven and guaranteed to help the excruciating pain or the spreading. The pain does not respond to many medications, even things such as morphine. There are some treatments available, but many are not covered by insurance and have several serious side effects. Many doctors are not even aware and educated on what CRPS/RSD actually is.
The constant burning, swelling, ice cold, hypersensitive, ongoing pain is just too much. Amputation is an option for few, although even with that there is a risk the CRPS will spread elsewhere throughout the body.
My Type 2 Burden – Burn Baby BURN 🔥
I am one of the 1 in 3,800 that has been diagnosed with this degenerative neurological disease – Type 2 CRPS.
On 27th August 2013, when I was 19 years of age I was diagnosed with this neurological disorder and I was also diagnosed with Fibromyalgia on the same date… Typical right, you try to find out answers for one thing and end up getting a double diagnosis, HA!
When I was 18 I did physiotherapy, I remember going into my Dr’s surgery on days when I had Sixth Form (College) to do physio stretches/excercises and all it it did was absolutely hurt me even more with every session… Just thinking about it is hurting me. The doctors thought I had Rheumatoid Arthritis because my Rheumatoid markers kept showing up high in my blood test results.
Eventually after years of tests, being told that I had ‘growing pains’, x-rays, MRI scans and examinations I was diagnosed with Complex Regional Pain Syndrome.
In 2015 I was admitted into hospital because I was experiencing sharp shooting pains up and down my leg and achy bruised feeling. I was used to feeling pain, but the pain I was experiencing was much worse than my Fibromyalgia so I reluctantly went to A&E. I was scared that the pain I was experiencing could be a Deep Vein Thrombosis due to family history. Fortunately I wasn’t diagnosed with DVT but whilst I was in hospital my CRPS wasn’t being taken care of or attended to correctly. I was put on saline solution and pain medication through drip and by the time I was discharged and out of hospital I could barely walk, talk properly and my hands were completely cramped and burning like no other sensation I had ever felt before. This was the year that my CRPS started to spread to other areas of my body and start to take relentless control over my body. Now the damage is irreversable and progressive.
Although I’ve been diagnosed with this neurological disorder for over five years now and suffered chronic pain since I was a child, I’ve never really spoken about it to highlight the type of disorder it is and how it really affects me and others who unfortunately have the same diagnosis. So, for 2018 CRPS Awareness I decided to write this article about this disorder that myself and a handful of other people suffer from.
Having multiple pain disorders, I can vouch to the FACT that CRPS is the Biggest & Baddest bully out of them all – I can push through my Fibromyalgia but CRPS is another level of torture and over the years I have most definitely noticed the difference.
Although it’s all pain, there’s Levels *deepest sigh*
What I experience with CRPS:
Burning sensation all over my body, literally feels like being on flames constantly from head to toe. My whole system shuts down, extremely heavy eyelids, body hypersensitive. I completely shut down there’s nothing I can do to alleviate the symptoms, my eyes automatically close. Every single part of my body is affected with burning sensations that literally feels like being set on flames. Bruised sensation everywhere, excrusicating to stand on feet and use hands as it feels like i’m constantly putting pressure on cuts and bruises.
I exprience out of this world painful, constant burning, cutting, tingling, stabbing, and throbbing sensation every day. On top of the pain there’s also temperature and color changes of the skin, migraines, fatigue, nausea (literally sick and nauseous from the heights of chronic pain), sensitivity to touch, involuntary muscle movements, lack of mobility, inability to walk, depression, stiffness, insomnia, anxiety, etc.
Some factors that cause my CRPS symptoms to worsen:
- Weather changes
- Menstrual cycle
- Other chronic illness flare ups
- Physical exhertion
- Chemical smells/products
- Injuries – clumsy, accident prone
- Age – every year I get worse and my mobility is challenged more and more as the years continue as my CRPS is progressive
- Nothing – No joke, existing is a trigger
- … last but most of all, LIFE
I’m legit scared of winter. Every year without fail I get sick during winter, specifically the time period is from September-April, February being the worst month for me as it’s the coldest.
Even though I know it’s coming and the pain is going to heighten without a doubt I’m still gobsmacked when the pain reaches crazy heights and i’m forced to face the fire .
I’ve spoken to my Doctor about my pain conditions and I’m basically being ignored or pushed to the side. When I was initially diagnosed I wasn’t given any advice etc. on how to manage or cope with this illness.
I asked my present Dr about starting Pregabelin (a pain medicine which was suggested to me by my previous Dr) and he told me, “Your case is too ‘complex’ & there’s not really a simple answer”… LOL ‘Complex’ REALLY? Tell me about it…Doctor.
I’ve tried different medications and none of them work, i’m immune to pain medications and have always been that way.
The hardest part is that there is no cure and CRPS is innevitably progressive. I’m so used to being in pain that my bareable pain level is most likely off the charts for someone with a ‘normal’ functioning body, which means when my pain is off the scale and I ask for help you know I’m really bad. Eventually it affects the brain and all organs in the body making it unbearable to live. I can feel this happening.
Trying to keep your head above waters whilst living with CRPS is absolutely draining. If not for all of the weakness, I could probably push through my pain disorder but the fatigue and weakness makes it awfully difficult to simply live.
There’s no known cure for complex regional pain syndrome (CRPS), but a combination of physical treatments, medication and psychological support can help manage the symptoms.
If the condition is not diagnosed quickly, changes to the bone and muscle may get worse and may not be reversible. In some people, symptoms go away on their own. In other people, even with treatment the pain continues and the condition causes crippling, irreversible changes.
This is one of the reasons why I’m raising awareness. If you suspect having this disorder or someone who might do then treating it as soon as you get a diagnosis lessens the chance of progression and you could have a better chance of remision.
CRPS Community – WARRIOR OF THE WEEK 🥇🧡
CRPS is such a debilitating illness that HOPE seems so far out of reach, but HOPE is really all we have.
I wanted to take the time to recognise all sufferers of CRPS especially during this awareness week, and shine light on the Warriors that I’ve had the honour of connecting with on twitter.
I would like to introduce my first ever CRPS Warrior of the Week 🥇🧡
November kicks off Color the World Orange Month, otherwise known as complex regional pain syndrome/ reflex sympathetic dystrophy CRPS/RSD Awareness Month.
One of the main reasons for starting my blog and creating my Twitter and other social media was to feel less alone. This time last year I really wasn’t aware of how much people were affected by chronic pain and it actually breaks my heart to see so many people suffering. Being a part of the chronic illness community makes me feel a little less invisible due to my physical and mental battles and in the months that I’ve been able to connect with warriors and advocates has inspired and encouraged me to carry on fighting and speaking up about my daily struggles and also victories.
A few things you can do to raise awareness for CRPS This month:
- Write about “Complex Regional Pain Syndrome.”
Many don’t know what CRPS or RSD stands for, much less what it means. We often take for granted that our friends and family know that it’s an incurable, degenerative neurological disease, but most people can’t differentiate one chronic pain condition from another. “NERVEmber” is the perfect opportunity to educate those in your life on your condition.
- Make your awareness posts public
- Make it personal
- Share awareness posts from other advocates/warriors
- Take part in a funraiser
- Use hashtags and tags
For example, adding #colortheworldorange to your posts can help others in the CRPS/RSD community find you.
- Participate in awareness events
Monday, November 5th, 2018 is Color the World Orange Day, when we ask our friends, family, and communities to wear orange and share their photos to social media.
There are so many events and ways to get involved this month across social media and the blogging community.
- Connect with other warriors
Try to take advantage of the entire month of November. Connect with other Chronic Pain & CRPS Warrior on social media, find out about their journey and what helps them to get through their day. Make sure self-care is your main priority so you can participate wihout sacrificing your well-being throughout CRPS/RSD awareness month.
- Be an ambassador
If you have the ability to get online and share posters, or tweet status updates, think of yourself as a representative for those who cannot. You are advocating for people who don’t have a voice, for those whose fights have come to an end, and for all of the individuals who might be diagnosed with CRPS/RSD in the future.
- Just Breathe and Be Bold
Honestly, just opening your eyes and breathing is such a struggle. If all you can do is inhale and exhale for the day then I’m so very proud of you!
You’re a courageous warrior and have overcome many battles that people don’t see and aren’t even aware of.
It can be difficult to be vulnerable and discuss your pain, especially when we are used to comforting others so they can feel assured that we are OK (even when we aren’t).
Everyone’s voice matters. Every single story matters. Your story is unique, and can help change lives.
Fight on, warriors. Keep shining.
I hope you have a fantastic NERVEmber!
You are not complaining when you share your reality. You are not a burden just because you are burdened by pain. Your friends share their lives; there is no shame in sharing this important aspect of yours also.
If someone you love is suffering in pain… suffering at the hands of an unknowledgeable or uncompassionate doctor… don’t give up. It is worth every effort you can make to take on the search for capable care for them. It can become nearly impossible for that person to reach out, to search for the care they deserve.
To my fellow CRPS warriors: the most important thing to keep in mind while fighting this disease is that even though it’s a disability, we most definitely have our abilities too.
In order for the stars to shine their light so bright, the darkness must be present first.
Always remember. You’re a Star.
Ok, well that wraps up my first ever article about CRPS. Now please may I be excused as I call the Fire Brigade… for my Temple!
CRPS Article Links
RESOURCES FROM REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION
Twitter – Follow @LauraSpoonie
Pinterest – Follow @LauraSpoonie
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