I was diagnosed with Complex Regional Pain Syndrome almost 3 years ago. I am enjoying writing as it keeps my mind and body working.
What is CRPS?
Complex Regional Pain Syndrome (CRPS), formerly known as RSD, is a progressive incurable chronic pain condition that most often affects one limb (foot, leg, hand, or arm), usually after an injury. The disease can affect other parts of the body also and is known to spread without warning. CRPS is believed to be caused when the peripheral and central nervous system is damaged or malfunctioning. The central nervous system is composed of the brain and spinal cord and the peripheral nervous system involves signaling nerves from the brain and spinal cord to the entire body. CRPS sometimes occurs after an injury, and the pain is disproportionate to the injury. The pain can be so severe, that it is also known as a 'suicide disease'.
CRPS sufferers may also have psychological effects from the disease due to the effect it has on the limbic system, which supports emotion, behavior, motivation, olfaction and memory. This often leads to depression, mood swings, anxiety, social withdrawal, lowered confidence, paranoia, inability to concentrate, memory loss, insomnia, and feeling hopeless. Suicide rates among CRPS sufferers are high because of the excruciating never-ending pain, sleep deprivation, frustration, social isolation, and depression.
CRPS is divided into two types: CRPS-1 and CRPS-2. CRPS-1, which used to be called reflex sympathetic dystrophy syndrome, is when people have no confirmed nerve injury. CRPS-2, which used to be called causalgia, is when someone has confirmed nerve damage.
First and foremost, the key symptom for CRPS is the intense and prolonged pain. It is often described as being "burning" or "stabbing," and it can come and go intermittently. Often, along with the intense pain comes an increased sensitivity to any type of touch in the area of the pain. It makes any skin contact unbearable.
People with this condition often have these common symptoms:
- Skin temperature change
- Skin color change or blotchiness
- Skin texture change
- Muscle atrophy
- Bone density loss
- Strange nail and hair growth
- Muscle coordination problems
- Tremors or jerking movements of the affected limb
- Memory problems
- Emotional and psychological issues like depression and anxiety
There is no singular test for CRPS, but hopefully, your doctor recognizes your symptoms and starts pain medications also starts testing you right away to find out if it is CRPS. These tests include:
- Bone scan- This will show if there are any bone changes
- Sympathetic nervous system tests- This test will check for problems with your sympathetic nervous system.
- X-rays- Also checks for any bone changes
- Magnetic resonance imaging (MRI)- Test to see if there are any tissue changes-
- Quantitative sudomotor axon reflex test QSART)- This basically tests the amount of sweat coming from the affected limb
- Thermograhy- This test will show temperature changes
These tests and your symptoms will or will not point to a diagnosis of CRPS. If the tests point towards a diagnosis of CRPS and you already started to take proper pain medications and continued using the affected limb normally, it is possible to stop CRPS before it even starts.
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What does a diagnosis of CRPS mean to you?
Too many times the disease is misdiagnosed or not diagnosed quick enough and is often misunderstood by medical professionals. It is in your best interest to learn everything you can about the disease and be your own medical advocate. Research and study the disease, the more you know, the better off you will be.
The treatment plan will include but is not limited to physical therapy, Psychotherapy, and nerve blocks.
If you and your doctor are unable to stop the CRPS from progressing, do not get discouraged, stay positive and realize you can still beat it. This is the time to buckle down and keep fighting every single day, hour and minute.
You must be ready for what is going to happen to you both physically and emotionally, for this may the hardest thing you have ever encountered in your life.
Your medications, which might include Gabapentin, Lyrica, Celebrex and whatever else you and your doctor agree will help. The medications should help with the pain a bit, but please understand that you will have never felt anything like it in your life. The Mcgill Pain Index shows that CRPS is more painful than amputating a finger or toe with any anesthesia.
If you haven't already, you will encounter some or all of the symptoms listed above. The pictures to the right show what the Complex Regional Pain Syndrome can do to an affected leg and foot. As you can see there is discoloration, swelling, shininess, and blotching of the skin. There can also be abnormal nail and hair growth. The extremity gets very cold and clammy to the touch. The skin will be very sweaty at times also and skin sensitivity will be unimaginable.
Visiting your doctor and a physical therapist regularly for the body and also periodically visiting a therapist for the mind will be part of your daily life. Pain and side effects will something you will deal with every day also. Simple tasks like taking a shower, making your bed or cooking something to eat may seem next to impossible.
Psychological effects of CRPS are also part of the patient's daily life. Memory loss, depression, anxiety, trouble finishing sentences or finding the right words, lethargy, and concentration are some of the issues they deal with. Social situations become strenuous and engaging with people is unbearable at times. Fits of crying for no apparent reason intensifies can intensify a need for isolationism. Daily chores and basic life functions are huge obstacles that seem overwhelming most of the time.
One of the biggest complaints heard from CRPS sufferers is that no one understands. This feeling can deepen the depression and if not dealt with can cause serious problems or dire circumstances.
This is why it is so important to treat body and mind. It is suggested to have more than just a Physiatrist or a doctor on your team. A Psychiatrist or Psychologist are better equipped to treat the mind and having one that is experienced with CRPS is vital to your treatment.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Robert Derksen on July 01, 2018:
Lost my right ring finger tip from pip knuckle onward and had hand severly crushed causing CRPS. Been Dealing with this for a year a half just about and have tried all the medications and treatments they can throw at me. No luck with any of them. Always glad to see people write about this disease as so many people are uneducated to how bad life witht his disease can be. 33 years old and every day is a struggle. But finding groups to talk with and having a awesome wife who has not only stayed beside me in this but supported me has made it somewhat dealable. Just wanted to say thanks again for writing this as it hit home with me. Stay strong everyone!
Doris James MizBejabbers from Beautiful South on April 18, 2018:
I was diagnosed with CRPS about 5 years ago, but after reading your article, I'm not sure that it is what my condition is. I was in a city bus rollover in 2006. I lay paralyzed, was transported to the ER and then admitted to the hospital. When morning came, the paralysis was gone, but I spent two weeks recuperating and having PT. The accident left me with a spine injury. I went through a normal healing process, but suffered chronic fatigue. About 5 years later that I noticed pain in both my arms, a cramping burning pain, and I would massage and squeeze my muscles to try to make it go away.
My doctor has CRPS, or RSD as he called it, from a vehicular accident he was in, and made his diagnosis on my symptoms being similar to his. He first tried me on gabapentin because the insurance co. required a step plan. It had no effect whatsover, so he prescribed Lyrica. Instant success from the first capsule! After several years the side effects got so bad I knew I had to try something else. I couldn't take Cymbalta; it made me suicidal. Then the lidocaine patch, which I had not been able to afford, became OTC at a very affordable price. It enabled me to ditch Lyrica. That was a year ago, and I still use about 1 or 2 patches a week if I feel the pain returning.
My pain level only once or twice increased to the level you describe. It would have been at the same level as fibromyalgia, according to your graph. I've often wonder if I was misdiagnosed and have fibro instead. I also wonder if there is a difference between CRPS and fibro. Anyway, I consider myself lucky that my pain responds to the lidocaine patches at less than $10 per box of 5. Prescriptions ran $300 for a box of 30, and insurance wouldn't pay for them. I purchased only one box just for necessary travel when I was working.
I thank you for spreading awareness of this condition, and I hope you are doing well. I really wanted to watch RSDfighter's video, but the link is broken.
Jim Laughlin (author) from Connecticut on April 08, 2017:
Pamela, thank you. Spreading awareness is more difficult that I had anticipated.
Pamela99 on April 08, 2017:
This is an excellent article about this horrid disease.
Jim Laughlin (author) from Connecticut on April 07, 2017:
Thank you! I am doing my best to spread awareness. I try to write a little each day on my blog, but some days I just don't have it me. I will keep positive and keep it going.
Nan on April 07, 2017:
Excellent blog pertaining to this horrific disease.
Affected me so much by reading I shared it publicly.
Hope it reaches many.
Jim Laughlin (author) from Connecticut on March 30, 2017:
Thank you, it is truly appreciated. I will take every bit of well wishes that come my way.
FlourishAnyway from USA on March 29, 2017:
I hadn't heard of this condition before, but I thank you for sharing your story. I wish you well in your journey.
Danny Kemp on March 26, 2017:
Thanks for your article! I live alone, as that's the way it is! Sometime I miss having someone that cares about you! I lost my Mother, and we were very close and now I have a Dysfunctional Family, who deal with their own problems, and I have no contact with them, which is great if you knew my family!
Jim Laughlin (author) from Connecticut on March 09, 2017:
THANK YOU to everyone for your comments! I never thought writing this article would reach so many people with CRPS. I felt so alone with my diagnosis before this. Seriously, from the bottom of my heart, thank you all!
I started writing my own blog also, I have added the web address to my profile, please feel free to check it out.
Tom Giacalone on March 09, 2017:
My fiancé has it lived with her for over 4 years we recently broke up my fault won't get into specifics. But I feel so bad because I was there for her through RSD and now I can't be there for her and it's killing me
Eric Browder on March 09, 2017:
Hey, thanks for sharing my story! Kidding of course, although I could have written this myself it's so similar to my situation.
April 10 will mark the 3rd anniversary of my adventure. A 5/8" rope, a panicky boat operator, and my left ankle being in the wrong place at the wrong time landed me in the hospital for 17 days. Like yourself, a few months later left me with a CRPS diagnosis.
Every day is a challenge!
RSDFighter on March 08, 2017:
Fact There are 1.5 to 6 million People with Complex Regional Pan Syndrome living in the United States, that is .5 to 2% of The US Population, The World Population is 7 Billion .5 to 2% is between 35 and 140 Million sufferers. According to one US Study in the long term 25% of these people will commit suicide because they can no longer live with the excruciating pain and either they have no hope of a cure or they haven’t even been correctly diagnosed.
CRPS is not a rare condition it is a Humanitarian Crises
Will you help Raise awareness of CRPS?
2017 is 525600 minutes long; in a split second from a twisted ankle or an injection you could become one of us so please spare 6 mins to watch the whole of this video. I remade it 9 times and the band practiced for hours to make it the best we could. https://www.youtube.com/watch?v=-eoQPgYI3l4
If you are a sufferer and want to help your fellow sufferers, If you have a family member or friend who has CRPS and you want to help them and the 10, of millions of sufferers across the world, If you have never heard of Complex Regional Pain Syndrome before to day but now realise the you, a family member or friends could end up like the people in this video and you would want to be diagnosed on the first visit to your doctor rather than the 10 – 20 years many many sufferers have had to wait before being correctly diagnosed.
If you can spare another 520 mins throughout the year and want to help raise awareness of this life shattering condition then, Join the CRPS Global Awareness Campaign https://www.facebook.com/groups/CRPSGlobalCampaign... and send this message to anyone and everyone you can asking them to do the same.
Lola Ellison on March 06, 2017:
My CRPS came from Carpal Tunnel Surgery in July 2015. I have lost the use of my right hand from this, plus I still have Carpal Tunnel Syndrome. I'm glad you have a good support group. I have the best husband in the world. I will include you in my prayers.
Charlie D on March 06, 2017:
I feel like this could have been me writing this. Thanks for sharing
Jim Laughlin (author) from Connecticut on March 06, 2017:
Sophie, sorry to hear you are having such a rough time, I hope it gets better for you!!
This message is for everyone- Over the past 2 years I here all the time, 'try this' and 'try that' so I will not try to come across that way, it is very frustrating to hear. But, one medication that had probably the biggest positive for me was LDN (Low Dose Naltrexone). If anyone has not talked to their doctor about this, please do. By no means a miracle drug, but it did offer me some relief when added to my other plethora of drugs.
Sophie on March 06, 2017:
As I read this I'm currently having muscle spasms in both legs strong enough to shake the bed. I have been living with this horrendous disease for 3 years now.Between the nerve blocks and physical therapy I'm going crazy. The medications I've tried have done the opposite of what they were supposed to do so I'm no longer on any. My doctors are hesitant on any pain meds. I feel like I'm going insane sometimes. It's honestly the support I've found online and in my boyfriend that has kept me going.
I hope we all are one day able to fine remission. I wouldn't wish this disease on anyone.
Jim Laughlin (author) from Connecticut on March 06, 2017:
She would agree with you! Lol. She is a rockstar!
Jo OCallaghan on March 05, 2017:
Reading your story is like looking in the mirror for many reasons - I was one of the unfortunate ones who's CRPS came from nowhere (just woke up one day like it) the pain and the burning is there. If anyone comes near me I feel sick because I'm worried they are going to touch my foot. My skin looks like a snakes skin that is about to be shed.. I wish it would all come off and I could start again!!