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CRPS: Complex Regional Pain Syndrome; 'Suicide Disease'

Updated on May 1, 2017
jimmyglaughlin profile image

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.

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 Types

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.

CRPS Symptoms

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
  • Swelling
  • Sweating
  • Strange nail and hair growth
  • Stiffness
  • 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.

The pain is not in your head. You are not crazy. Complex Regional Pain Syndrome is a real disease.

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.

This chart displays just how painful CRPS can be.
This chart displays just how painful CRPS can be.

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.

Keeping a positive attitude is not easy when dealing with CRPS. It is very important to have a great support group. Reach out to family, friends, doctors, online forums or a therapist. Get a strong team in your corner for the battle ahead.

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    • jimmyglaughlin profile image
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      Jim Laughlin 4 months ago from Connecticut

      Pamela, thank you. Spreading awareness is more difficult that I had anticipated.

    • profile image

      Pamela99 4 months ago

      This is an excellent article about this horrid disease.

    • jimmyglaughlin profile image
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      Jim Laughlin 4 months ago from Connecticut

      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.

    • profile image

      Nan 4 months ago

      Excellent blog pertaining to this horrific disease.

      Affected me so much by reading I shared it publicly.

      Hope it reaches many.

    • jimmyglaughlin profile image
      Author

      Jim Laughlin 4 months ago from Connecticut

      Thank you, it is truly appreciated. I will take every bit of well wishes that come my way.

    • FlourishAnyway profile image

      FlourishAnyway 4 months ago from USA

      I hadn't heard of this condition before, but I thank you for sharing your story. I wish you well in your journey.

    • profile image

      Danny Kemp 4 months ago

      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!

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      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.

    • profile image

      Tom Giacalone 5 months ago

      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

    • profile image

      Eric Browder 5 months ago

      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!

      Best, e

    • profile image

      RSDFighter 5 months ago

      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.

      Thank You

    • profile image

      Lola Ellison 5 months ago

      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.

    • profile image

      Charlie D 5 months ago

      I feel like this could have been me writing this. Thanks for sharing

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      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.

    • profile image

      Sophie 5 months ago

      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.

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      She would agree with you! Lol. She is a rockstar!

    • Jo OCallaghan profile image

      Jo OCallaghan 5 months ago

      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!!

      Your wife deserves a pat on the back/bunch of flowers

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      Emma, thank you. I hope the best for you. Remission is there somewhere, we need to keep moving forward.

    • Emma Broadhurst profile image

      Emma Broadhurst 5 months ago

      Thank you for your story. I got crps after having meningitis 12 yrs ago but I didn't feel the full effects of it till 6yrs ago. Since then it has progressed from my spine to the whole right side of my body. I can only describe it as hell on earth. If it wasn't for the support from my husband and having 3 beautiful daughters I don't think I would be here. People don't understand just how bad this disease truly is.

      I would love full remission to come my way but I class remission now as my pain being bearable. I have had acupuncture and it has triggered massive crps episodes so I have had to stop having this. Unfortunately since having crps I also now have Epilepsy, Bell's palsy, stomach issues also have degeneration of my spinal disc's, memory issues and spondylitis. So yes bit of a list but I try and be as positive as possible for the sake of my children. They keep me strong.

      Good luck in the future and I wish you remission of any kind.

      Thanks Emma

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      Anne, thank you. Christie and I send our love.

    • jimmyglaughlin profile image
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      Jim Laughlin 5 months ago from Connecticut

      AJ, thank you. It's funny, not funny haha, that you mention those other issues, because I have them also. This article could be soooooo much longer, I keep thinking of things to add. Having this disease, one has to stay on top of learning as much as they can, because, like you said, doctors don't have many answers. So little is known and yet this disease was diagnosed in the Civil War days. Thank you for your words of encouragement. Peace.

    • profile image

      Anne Tietyen 5 months ago

      Thank you for sharing this. I knew you were suffering pain, but nothing more. My heart hurts for what you are going through. I will be praying for you for relief and healing, and for all those close to you and helping you.

      Love to my niece.

    • profile image

      AJ Neil (Brisbane, Australia) 5 months ago

      Jimmy, thank you for sharing ..

      I'm a YOUNG 59 year old male, also diagnosed with CRPS after spinal surgery in 2009 ..

      You have pretty much summed up my experience with the disease, though I could add to your list extreme hearing sensitivity, overwhelming body weakness, loss of self-confidence .. I could go on ..

      It's a lot rarer for men to be diagnosed with CRPS, so for all the lovely fellow sufferers I've met through researching the disease over the years, you are one of the few men I've come in contact with. So, it's great to 'meet' you brother, and hear of your experience as you too are "living the CRPS dream".

      One of the most healing and hope-instilling things is knowing that you're not 'Robinson Crusoe", living this struggle alone.

      The longer I've lived with CRPS, through all the masses of heavy-duty medications, the Ketamine Infusions, the well-meaning 'advice' from health professionals (who in reality, more often than not, know less about the condition than we do), the constant research and searching for little grains of hope that we can nurture & grow, and on top of that, all the ongoing relentless pain & discomfort, I'm still learning to find ways that I can minimize the effect of CRPS on my life and still try be a strong, confident, productive, useful, creative, and loving, considerate human being.

      That may sound like I think I have all the answers .. I don't ! .. But I'm like a disabled Don Quixote, tilting at every windmill I come across, and determined to be ME .. Not allowing CRPS to determine and rule my future, but remaining positive, and guiding my every thought and action to maximize in all areas of my life, the four things that are most important to me .. Love, Peace, Joy & Hope ..

      I wish for you those very same things, and am more than happy to talk and share anything / anytime mate ...

      Your Aussie Brother in CRPS ..

      AJ (email : riversong@optusnet.com.au)

    • jimmyglaughlin profile image
      Author

      Jim Laughlin 5 months ago from Connecticut

      I am sorry to hear it has gotten worse for you. I wish you well. A good support system is very important to have. It's not easy for them either. I also find that a good sense of humor helps too, because sometimes a good laugh goes a long way.

    • profile image

      Sweetpeacricket 5 months ago

      Jimmy, I have been dealing with RSD/CRPS since 2005. In the last 9 months I've gone from able to work and only 1 medication to unable to work and about 10 different meds and vitamins. It has gone from just my right leg from hip to toes, to now include my right hand/wrist. I have learned more about this disease in the last year than I had in the first 3 years of diagnosis. I'm so glad that people have become more aware of RSD/CRPS. If I didn't have my wonderful husband and my mom, I would be in a really horrible place. This disease is very hard on the individual, not able to work, home life, doctor appointments, therapy, etc... I really feel for others that do not have a support system. I wish everyone low pain days.

    • jimmyglaughlin profile image
      Author

      Jim Laughlin 5 months ago from Connecticut

      Thank you for the kind comments, it really means a lot to me. I plan on posting updates as I go. Writing this today was more cathartic than I thought it would be, so I will try my best. Again, thank you!

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      Paula 5 months ago from Beautiful Upstate New York

      Jim....My heart is aching for you...this reads like an horrendous nightmare. I seem to recall hearing just a bit about this disease. You have done a superb job of explaining in detail. In fact, I applaud your efforts under your current condition. Honestly, you have described your daily struggle so realistically, I swear I'm feeling sympathy pains.

      Thank heaven you have a loving, compassionate wife and wonderful Drs. Your attitude appears to be amazing considering what you deal with on a daily basis.

      Medical Science progresses in leaps & bounds, Jim and we never know when methods, medicines and therapies emerge that can help significantly for any number of health issues.

      I will pray for your improvement. Please keep us updated as you are able. My best wishes to you and yours. Peace, Paula

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      Robyn D Bera 5 months ago from California

      Thanks for your honesty about living with CRPS and your willingness to help others. Despite all the pain and difficulties you face, your message is still one of hope. I encourage you to keep writing, eat a healthy diet, and face each day with optimism. Thanks for sharing and educating.

    • Jodah profile image

      John Hansen 5 months ago from Queensland Australia

      Thank you for sharing about CPRS, Jimmy. It must be a terribly debilitating condition to live with and I hope yours at least goes into remission soon. Writing about these conditions does help others.