CRPS/RSD and Suicide

Over the years we have heard that suicides for CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy) patients is the highest of all suicide rates.

This may not be as necessarily true as it seemed. This also does not entirely mean it’s false.

The following is an excerpt by the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) –

Suicide and Complex Regional Pain Syndrome (CRPS)
On June 23, 2012, Jill Harkany-Friedman, PhD, spoke to the RSDSA Board of Directors and invited guests on the topic of CRPS and Suicide Prevention. Dr. Harkany-Friedman is the Senior Director of Research and Prevention for the American Foundation for Suicide Prevention (AFSP). RSDSA asked Dr. Harkany-Friedman to speak because of recent suicides in the CRPS community. She assured us that although most individuals have fleeting thoughts of ending one’s life, suicide is relatively rare (12 out of 100,000). Furthermore, 90% of those who die by suicide have a diagnosable mental disorder, i.e. depression, anxiety, alcohol or substance abuse, and a potentially treatable mental disorder. We are posting her PowerPoint® presentation for your information.

I respectfully give all credit to the RSDSA for the above information.

While I respect the educated view of Dr. Harkany-Friedman the thought presents itself that she seems to be stating that nearly all those CRPS related suicides indeed had and underlying mental disorder therefore was the reason they took their own lives. I am not certain though. The estimates were on an over all amount of suicide percentages rather than CRPS specific.

I do apologize in advance for any misunderstandings.

I have rarely ever used offensive language in my posts, but in order for the general masses to understand what I mean in a blunt manner, I will come right out and say it, “Chronic severe pain is a mind and head fuck”. It becomes mental. We all know, at least most of us do, in order for us to feel pain, our brain has to feel it first.

That’s why coping strategies, meditation, relaxation, bio feedback, breathing exercises, guided imagery, aroma therapy and so many other techniques are necessary tools for the management of pain.

I have a hard time believing each of the CRPS suicides also had a mental disorder. Of course we’re mental. That doesn’t mean we have a mental disease, also.

It’s not all in our heads it’s in our bodies!

This also bring up another thought and that is if those suicides were CRPS misdiagnosis’. I hate to bring this up but there are some people who desire to be sick, who seek attention, who thrive on pity, who watch and listen to others for their symptoms so they can take what they learn to their own doctors and claim the same illness. Those people would have mental disorders.

In these cases I would hope the doctor’s were watching the objective findings rather than only listening to the subjective.

A little example,

30 people on a plane

Someone starts coughing and gagging suddenly, itching themselves all over. Making a scene for all to notice.

The person gets out of his seat and stumbles into another passengers and coughs all over him.

That person begins to worry he is catching something. He starts to itch himself.

Suddenly others are doing the same.

Next thing you know every one is hacking, coughing, itching and going nuts.

They all think they’ve contracted some illness, epidemic..

The problem is no one has it’s all in their heads. They only believe it to be true.

The first person never had anything at all. It was just a test.

This only goes to show the power of suggestion.

For some reason I tend to think that if deaths were related to CRPS/RSD we wouldn’t know that it was. Somehow some way it would be found and reported that that there was a psychiatric condition present or un diagnosed and that was the reason behind the suicide. Since nearly all CRPS/RSD patients have been diagnosed with depression secondary their illness, I have a feeling the depression would be used as the cause and not the horrible pain itself.

Suicidal ideations would be almost natural for anyone going through a painful hardship. The mind tries to free itself from ongoing pain and turmoil. It may plan and think of ways out, do things it wouldn’t normally do when more at ease, may even harm, cause bodily injury and so much more.

Self harming, cutting and causing bodily injury isn’t always a sign of suicide or suicidal ideations, sometimes it’s just a diversion to the original pain one is constantly feeling.

I think most CRPS/RSD’rs who have suicidal thoughts don’t really want to die at all, on the contrary they want to live.

They just need help managing their pain and most of them aren’t getting it.

~Twinkle Wood-VanFleet

39 thoughts on “CRPS/RSD and Suicide

    • You are most welcome Midnight.

      You definitely are not alone. I often have those ideations myself. Most don’t understand. I truly hope you are able to find someone who can help you get through those contemplation’s. It makes me sad to know we think of ways out.

      Sending a hug, faith and some hope your way…

      ~Twinkle V.

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    • I am crying as I write this. I have had this painful demon (CRPS) since last summer when I fell and broke my left wrist. Never had such pain in my life. I’ve been going to PT and OT since September. I am miserable. I don’t think anyone knows or understands the pain I am in. I am normally a pretty happy person. I hate life now. I hope you are okay. Just keep your chin up. I should talk!

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    • i have had rsd for 14 yrs and think about it often it nice to see that there are others that understand what we as chronic pain patients go through. thank-you

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    • I just read this article and it was great. My husband is suicidal and has had RSD for almost 15 years. He cannot take the burning and he has seen so many dr’s and has been on so many meds over the years. He is just plain sick and tired of it all. I am trying my best to help him cope. He is at a behavioral center again so he can be monitored. I work full time and he stays home all day by himself. I just fear one day, he won’t be alive when I come home. Believe me, I have been asking for help for a long time. It is a bitch, plain and simple. Hard on the person with the disease, but just as hard on the caregiver (me). It turns your lives inside and out. I wish you the best.

      Liked by 1 person

      • Thank you Laura. I very much agree. It really is just as hard on the caregiver’s (spouse, partner, the precious children, those in the home especially) This becomes a family disease. You seem to be doing all you can to make it better for him, thank you. That’s all you can do. Please remember that you have to take care of you too. I do worry for you, as well. My heart is with you both. ~Twinkle

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  1. Pingback: Can You See Me Now | Inspirational Stories

  2. Reblogged this on Inspirational Stories and commented:
    CRPS is also known as the “Suicide Disease”. This is because the pain is so debilitating,and with no cure… There is really no light at the end of the tunnel for many CRPS fighters. With that being said, many CRPS fighters get to the point where they just can not take the pain anymore.

    Unless you personally have this syndrome,you truly do not understand how much pain your body can withstand and still be alive. Many of us try and describe the pain,or throw out the McGill pain scale score to provide something to compare the pain to. (CRPS lands at 45.5 out of 50 on the McGill pain scale. Which is above amputation of a limb(40/50) Childbirth w/out meds (32/50) chronic back pain 28/50,etc)
    It’s recorded to be the most painful pain condition in the books.
    Yet, why does no one know about it?!!? It drives me nuts!!!

    Anyway, I wanted to reblog this post 1) bc it addresses an important topic regarding CRPS 2) I agree 100% with the blogger on this. (Btw-this blog should definitely be checked out! Extremely informative!)
    3) if there is ANY CRPS/RSD angels/Fighters who has reached to this point, and are considering to do this, PLEASE know that their are people here to help you! And talk to you , provide you with coping mechanisms.
    Please remember, in the past 5 years, treatments/ knowledge/Research/etc. have advanced dramatically! Not to mention, everyone’s hard work to spread awareness is starting to make a huge impact! All of this is getting us closer to a cure! If not a cure,atleast more effective treatments!
    So keep holding on! Give hope chance to float! Because it will! We are fighters, and we will win this battle!
    If you,or Someone you know with CRPS/RSD is having thoughts of suicide, please go to RSDhope.org and RSDS.org, their are support groups/chats available 24/7, going through the same things as you,they know the pain you feel. Talking to them will only help you.
    Don’t let CRPS defeat you. We are strong people! We will kick CRPS’s ass!(pardon my French) BUT! It’s the truth!😉
    Again- check out this blog! There is a lot of great info!
    Thank you so much!
    Heather Lynn!

    Liked by 1 person

    • You are so correct, I have suffered with RSD/CRPS for over 18 years and I am completely exhausted, in addition to the uncontrollable pain 24/7. I have no desire to be sick neither am I faking an illness; wish it were that simple, then I would have some hope. After taking 4mg. of Dilaudid every 4-6 hours my doctor now tells me there is nothing else she can give to help with this unrelenting pain. Every part of my body now aches even my eyeballs. The author of this article is certainly someone who has never suffered from this dreaded disease neither watched a family member or friend forced to live with it.

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      • The author does have CRPS. They stated a statistic regarding CRPS and suicide, then provided their opinion. Which they were arguing that it’s not all in our heads (there may have been a little misunderstanding, that’s all☺️).

        What kinds of treatments have you tried? I take the same thing as you, along with 4 others 😕.

        But there are some treatments out there that have helped some people. At least with a little relief (without surgery!). I’d be more then happy to share the treatments I’ve tried, along with other ones I know of. Just let me know! ☺️
        I hope you have a low pain day💗
        Heather Lynn

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  3. Thank you so much for this article Twinkle and your thoughts as well, really great info. I’ve been fighting/dealing with our monster RSD for about 3yrs now and to be honest, I’ve contemplated suicide multiple times. How can any RSDer NOT think about it off and on?? We live with pain that most people can only pray they never have. My feet are red/purple/black most of the time and feel like someone has poured boiling oil on them. I believe the level of pain we experience is referred to as “exquisite pain” by physicians. It’s no wonder a lot of us ponder ending it all sometimes.
    Thanks again for this article and I hope you have a low pain day and rest of your week. 🙂 Karen

    Liked by 1 person

  4. Pingback: Chronic Pain Can cause misery - an open letter - Friars OsteopathFriars Osteopath

  5. The worst is seeing your best friend go through this. I want to move out of my country; but I am scared for my best friend and worrying that one day I will come back and find a gravestone.

    Liked by 1 person

  6. Dear Hannah
    You sound like an amazing, most caring and loving friend. Continue to support your best friend, help him/her find resources to assist if you are able. You can’t stop living because you feel obligated to protect and save. What you can do is be the best friend you’ve been. You have to save your heart, too. This is a very hard position to be in.
    I wish you the very best!
    Sending a hug your way…

    ~Twinkle V.

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  7. This afternoon, November 8th is the first international Balloon Release or Candle Lighting memorial to honor the RSD Angels lost this past year. We lost a record high this past year. Please join us from your home to honor their fight.
    Thank you very much for writing this in such a frank manner. It’s good to have all of the facts. And they can interpret the data and form opinions just as we can form some opinions of our own.
    It is good to remind people there are fewer suicide deaths than they think.

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  8. Reblogged this on aBodyofHope and commented:
    Today, November 8th the CRPS/RSD community will light candles or tie balloons to their homes to memorialize those who have passed this year from CRPS. This pain is not fatal, however people have died from complications brought on by the domino effect CRPS can cause in the nervous system, immune system, internal organs and brain. We also will honor our friends who have died by suicide this year.
    Overall deaths from CRPS are a small percentage, but it feels like many when we hear another friend lost about once a week in the cold months. Let’s allow this memorial to bind us closer as a community, to fight harder for one another, to open the doors to communication when all hope seems lost.
    Today, let’s unite in remembrance of our friends and pray for peace for their families. I pray next year we won’t even have to do this event. Stay strong this winter, warriors.
    **Below is an article about Complex Regional Pain Syndrome/RSD suicide statistics along with a frank interpretation from RSD Advisory blog.

    Liked by 1 person

    • Thank you, abodyofhope!

      I pray this remembrance moves forward with the annual balloon release and/or candle lighting as intended. Most wonderful for the families, heartfelt, and a reminder of those no longer with us.

      Please let me know if I can help with sharing next year.

      (I received your message in time to light a candle, my apologies I didn’t catch it sooner)

      Well wishes,
      ~Twinkle

      Like

  9. Thank you.
    Thank you for writing this. It took me ages to find an appropriate article to re-blog and yours was perfect!
    Yes, I hope this is a comfort to families and also opens some dialogue on suicidality in chronic pain.
    Glad you got your candle going in time❤
    Heartfelt hugs to you❤

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  10. CRPS is a terrible disease. It does make us think of suicide, it’s hard not to when all you want to do is get away from the pain. The disease takes your life away as we knew it. We can not do or be the people we once were. This affects our everyday lives, our families and everything we do. A lot of us can no longer work and do the things we are accustomed to doing. Hell I can’t even wear normal clothes anymore, no socks, no sneakers, , no heels. Flip flops and UGG slippers and maxi dresses made of soft cotton are all I can wear. Don’t forget most of us can’t stand cold so this makes it really hard when it’s 30 degrees outside and you have to make a choice of being in pain because you tried to dress warm or bring in pain because you didn’t and the air touches your body. I wish there was a way for others to experience our pain, I can promise you that most people couldn’t handle the pain we live with everyday. And then we have to battle for treatment because it isn’t FDA approved and then people wonder why we consider suicide. Well it’s because we reach a breaking point that we can’t control anymore. We just want out of these bodies that are causing our pain. We beg for help to no avail. I know I do, I’m not a pill popper and have tried to do everything the right way with my family doctor and pain management team and sometimes we feel like there are no other choices for us. We just reach a limit that no one else understands.

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    • Sondria,

      All that you’ve shared is so very true. The only part for me I haven’t personally experienced on a regular basis is severely cold winter weather. We do drop to the 30’s on occasion, but for those living in colder winter’s or even colder year round, I don’t know how you manage. It’s easy to place myself in your shoes and imagine that’s the closest I can get to feeling on your behalf’s.

      Other’s will never realize truly what we have to alter to survive on a daily, even moment to moment basis. Clothing, I rarely wear anything at home. Bathing suit tops, halter’s and wraps that dangle around my waist. Like you and nearly all of us, going out of the home is a chore. Foot wear is challenging. Much of my existence is barefoot. Certain sandals for a special outing, or fuzzy flip flops. It sounds funny but I have to buy my winter shoes at a second hand because they’ve already been broke in. This can be challenging too because they’ve often been molded to someone else’s feet. 5 years ago I found a pair for winter that zip up at the top of the foot. So easy on, easy off. Still in great condition because I consider them my emergency wear. Perfect for rain puddles. I was constantly getting my feet wet during rain, grass, puddles, etc.

      The wraps are great too. They are really just one really large piece of material. I forgot the name at the moment. I can either wear it wrapped around my chest to dangle as a dress, fold it to wear around my hips, tie as a halter dress. Several ways to use. I generally tie around my hips to a short skirt. It’s my comfort save.

      All we want to do is live. This pain hurts. But there is little support for the whole person. Or the families that also fall apart as a result of lack of care or better treatments options.

      People without CRPS or other chronic intractable pain conditions have no idea what it’s like to live inside their head all day long just to physically cope. It’s not a mental condition, but it surely affects us mentally to live with it.

      Sending a hug your way

      I wish you pain eased days and nights,
      ~Twinkle

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  11. Hello . I been diagnosed with RSD for the last 6 years , the pain gets worst day by day and I can’t take it any more I’bee acting strong all this time hopping that it is not true this is happening to me ,I’m tired I’been taken all kinds or drugs and now I have chronic Gastritis . I often think I’ll be better of out of this world but deep down I’m afraid of more pain so I was thinking can we get help with the Euthanasia does anybody know if so please please let me know I have to find some relieve Thanks RJS

    Liked by 1 person

  12. Hi Jacob

    Chronic, incurable, intractable pain conditions aren’t easy to live with as we know. Gastritis while painful can be eased with proton pump inhibitors, acid blockers or neutralizers. Learning what foods instigate a flare and removing them is helpful too. Antibiotics can sometimes be of assistance. NSAID’s (nonsteroidal anti-inflammatory drugs) can also irritate and add to the inflammation of the stomach lining. Smaller meals and stress reduction are important as well.

    Stress wreaks havoc on the entire body. It effects pain, emotion, the heart, the GI system and other functions. Pain causes stress and then the stress raises pain levels. This leads to depression. The vicious cycle repeats itself.

    A multi-disciplinary approach or multi-disciplinary pain management team for care is important. You need to find someone to treat the whole you not just prescribe. There are many programs available now that assist in this manner.

    You ask “I was thinking can we get help with the Euthanasia does anybody know if so please please let me know”

    No!

    Euthanasia; voluntary, involuntary, active, passive, physician assisted or assisted doesn’t have any legal provision option for those with CRPS. Where the option might apply is for those who are in a coma, inoperable cancer’s, those generally who are being forced to live against their will when they’ve been already been given the diagnosis that they will pass away. For someone with CRPS to have this possible option they would also have to have no likelihood of survival.

    You said “I’m tired I’been taken all kinds or drugs and now I have chronic Gastritis ”

    Drugs alone won’t help you. They can play a vital role in the reduction of pain, but they will do nothing for your being. I believe in the use of pain relievers, including narcotic analgesics, on a patient by patient basis, but more isn’t better either. Those drugs can also be causing you the Gastritis.

    Remember, you always have the right to discuss other options with your care team or physician.

    You must keep fighting to live. I do know how hard it is. All of us with CRPS and other painful chronic diseases know how you feel. There are options for care available that can help you not only for the pain itself but for all that comes with it. Coping strategies, goal setting, mindfulness, bio-feedback, deep breathing, relaxation, muscle relaxation, meditation, yoga, cognitive therapy and so much more. These are critical learning tools for pain patient survival. A pain psychologist can be most helpful also. Specializing in both the sensory and emotional experience.

    Please consider calling-

    National Suicide Prevention Hotline
    1-800-273-TALK (8255) you’ll be connected to a skilled, trained counselor at a crisis center in your area, anytime 24/7.

    I wish you pain eased days and nights,
    ~Twinkle V.

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  14. Rsd is 100 percent the cause of suicide. We r depressed cause the disease stole r lives and progresses to the point where there is no point. Unable to do anything and in constant horrific pain. There is no life. Only a living hell. I’m to the point that death is my only option.

    Liked by 1 person

    • I actually agree with the previous posts about suicide being the only option. I have had CRPS for 10 years and accepted 18 months ago that I had a choice; live with CRPS or choose to die. I choose NOT to live with CRPS and have made my preparations to that effect. I live in New Zealand where CRPS is an ‘uncommon’ if not ‘rare’ disease. We do not have the treatment options available overseas and there are literally only a handful of pain specialists in the entire country. Over the years I have been open to trying every and any treatment option available here from drugs to acupuncture to physio to psychotherapy and many more things. Nothing has helped and my CRPS has spread to full body externally and quite a few major organs internally. My doctor said to me that ‘I may as well be dead’; he is right, this is no life and I no longer wish to prolong it. So for me, here in NZ, there is no hope. It’s a fact and I’m ok with that.

      Liked by 1 person

  15. Ryan and Gemma,

    Ryan the day you wrote your post I was in a locked facility on “Suicide watch” and a hold after being placed in handcuffs by the Sheriff’s dept.. I couldn’t even pee without asking and having an officer escort me to, wait during, and back to the hold. Jemma, the day you shared, that night I was allowed to come home. I’m so sorry! I pray that my strength allows me to continue on not only for me, but for all of you, too.

    Please reach out to a facility, physician or hotline to help you through. And please if you are left unacknowledged in your pain and emotions and disregarded, speak up for yourselves. If you can’t, have a caregiver, or other do it for you. Unfortunately, I did reach out, and beg to a provider less than a week prior but I fell through their cracks. When I attempted enough courage to speak up for myself after the fact… I was dismissed from care.

    I did what I did and I accomplished my goal, and with it I accept my responsibility and the lifetime consequences that will now follow. All i can hope for is that those who faulted accept their errors, too. Without those errors, inaccuracies, mistakes and disregard, I most likely could have held on a little longer and avoided the entire ordeal. I don’t need an apology, but an acknowledgement would be helpful in closure.

    I must still be here for some extra reason, though I’m not sure how long that reason will last.

    Love you all and I truly wish or pray that your pain eases enough to endure.

    ~Twinkle

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  16. Most doctors are not knowledgeable about CRPS. They think it’s a junk word, since there are no tests that can actually confirm a diagnosis for CRPS. Unless you yourself has CRPS you have no idea how we feel everyday. The pain is excruciating, the symptoms that follow make it worse, numbing of extremities, insomnia, anxiety, depression, color change of extremities, swelling, temperature changes that cause more pain, sensitivity to touch/sound/light. People who contemplate suicide is because they have doctors making it seem like it’s all in ther head and that there crazy. People around them don’t know what there going through so they feel completely alone. Living with extreme pain for the rest of your life is one of the toughest things a person can go through. It’s a daily struggle, it’s a fight you’ll be fighting for the rest of your life. People get tired of fighting, they lose hope, they no longer want to live with pain. I can understand it. It has absolutely nothing to do with a “mental issue” it’s a physical issue, that doctors can’t or won’t help with.

    Liked by 1 person

  17. Dear Kaycee,

    Many are confusing Chronic Pain Syndrome for Complex Regional Pain Syndrome/RSD. CRPS type 2 previously Causalgia and RSD type 1.

    Chronic pain syndrome and Complex Regional Pain Syndrome are not the same. My husband has chronic pain syndrome and he does not have complex regional pain syndrome.

    We must push forward to educate the educators.

    It is a fight to fight the rest of our lives. You’re right! It’s NOT a mental issue. Yet, mental issues can arise secondary to physical unrelenting pain. This is where we must also push to educate. It doesn’t begin as a mental disorder, yet can become or end as one if not properly addressed.

    Godspeed.

    ~Twinkle

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  18. Heather Lynn,
    Thank you kindly.

    Sylvia J. Allen-Ouzts,
    You said “the author of this article is certainly someone who has never suffered from this dreaded disease neither watched a family member or friend forced to live with it.”

    Lady…

    I’m heading into 16 years from the date of injury January 2001. Diagnosed in 2003. I do know and I know what it’s like to lose all hope. I know.. because…. FML…

    Please can I give you a hint to go forward in life with? Know what or who you’re talking about or putting down “Before” you do it.

    If I sound ugly, hard or mistaking your own adverse misconception.. (Wait though, sorry implies I’ve done something wrong) I’m not sorry.

    I killed me for the rest of my life after attempting to kill myself and it’s only because of my own will or the grace of God I’m still here today. It’s okay, bring it. Tell me how my mouth is fowl.

    My daddy raised a lady, but he never raised a doormat either. My daddy has been dead since I closed his eyes when I was 22. Okay, so….

    Where in this was my error? I may have not specified correctly, I may have had spelling errors… and I may have not clarified properly for you. You could have simply asked. My point was to never clarify what I have, but what I know. Understand?

    Okay so, if I want to flip your statement… and say.. the responder of this post couldn’t have CRPS or any other debilitating chronic pain condition… may I know honestly how that would make you feel?

    You might tell me to go fly one, right?

    I was born with arthritis. Born. CRPS came when I was 31.. Ah heck, 32 maybe. All I know for sure is my baby was 3. My girls were 9 and 8.
    And my very last baby was never born as he went away a year after.. I’ll never have another.

    Can you reply now?

    ~Twinkle

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  19. Pingback: If you’re for real, you’ll always be, if you aren’t? | RSD Advisory- Where Chronic Pain & Depression Collide

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