Are you in search of Support?

Do you have crps, and in search of support?

Have you had trouble finding a support group for Crps?
We here at Rsd/Crps Doesn’t Own Me know exactly how that feels.
Our staff all know what this is like because we all live with crps ourselves, and we know how important gaining support from others really is.

So knowing all the we began searching for a safe, non-hackable, private text and voice service for ourselves and fellow Crps patients, and even their families to find much needed support.
To become part of our support chat please check out this link and answer a few short questions.
https://goo.gl/forms/zyedJyS8zSGQKQF22

Once approved you will get an email with directions and a link inviting you to our discord chat server.
If you have any questions please email rsdcrps@gmail.com

 

Life after Diagnosis

Not a single veteran of the RSD/CRPS community can say their diagnosis did not change their lives in some way. Many faces uncertainty, job loss, hobbies no longer joyful or even possible dependant on the activity.

But finding life after diagnosis, be it with CRPS, cancer, diabetes, or really anything else, can be there greatest gift we give ourselves. Can change our treatment approach and even our treatment SUCCESS.

While there will still be the bad days, the better days will grow to out number them because we have something to look forward to. Our founder loved the theater. Loved acting. Loved making people smile and laugh.

And for years she thought it was behind her after she was injured. It's been over 10 years since her injury. Is this the life she expected? No. But the life she has now is different, but still good.

Not only did she take on the challenge to create a new way to enjoy her love the theater, but to bring those smiles and laughs to others. She became a podcaster on YouTube for a game called Minecraft as RSDAngelOnFire.

She has grown a small following both here and in her new approach to get hobbies with CRPS. And like us all, she still has her up and down days which means while she's very busy making those amazing and fun videos, she is still one of us. And today is her 8 year anniversary of being RSD/CRPS Doesn't Own Me's founder.

So let's give a HUGE round of applause for Christa and her fight to live by her own advise, that there truly is life after diagnosis!

Way to go Christa!

Greetings…. My name is…

Hi my name is...
Hi my name is...
Hi my name is…

Hi my name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

Author Heather Gilmore… But kindly shared with the RCDOM community by Gaylynne Gale

And a Gold Medal for Team USA (& Pain Warriors)

Paralympics USA Gold

On September 8th, the U.S. Women’s Wheelchair Basketball team started the Rio Paralympics with a record-breaking win. And yesterday, they took their trip to Rio another step further, they also took the GOLD.

Paralympics USA Gold
USA Women’s Wheelchair Basketball Team takes the GOLD

With every team are individuals who excel in their particular aspect of the games. And with individual of that team is a person who came to participate in the sport for one reason or another. And one of those who participated in this years US Women’s team this year, is Abby Dunkin, a fellow pain warrior from Texas.

Both Abby and Rachel Morris have done something that most American’s are brought up to identify as being the best of the best in their sport. They became part of an internationally recognized event and they have CRPS. Now maybe this was not what they expected to do when they grew up. But as Rachel discussed just two years ago after getting bronze in London weeks after her injury during training,

“They believe I can do something in the sport. I’m on the talent transfer for the first six months and then hopefully after the Worlds I can go through as a rower to Rio 2016.”

 

We will fall down, we will have challenges, but we can keep fighting to make that change in our lives. So remember these two. That they are proof when someone gives themselves a goal, they can achieve greatness. And while it takes time, effort, dedication, and most of all a great team of people supporting you for when you fall down, we can do amazing things.

Now, I may never win the gold at the Olympics, but I sure will win the gold of achieving my goals of helping support others. And that is all the winning I need.

CRPS and the Snowball Effect: Depression

Pixabay Public Domain

After discussion with a life long migraine sufferer, my step mom, about the snowball effect with eyes; she not only could agree, but also pointed out the direct correlation of the “Snowball effect” and depression.

  • : a state of feeling sad

  • : a serious medical condition in which a person feels very sad, hopeless, and unimportant and often is unable to live in a normal way

  • : a period of time in which there is little economic activity and many people do not have jobs

 

Depression under the second definition is a significant issue for many chronic pain patients. And can be caused by a multitude of factors we all have in our lives varying from medication side effects, to sleep deprivation, pain itself, or even a combination such as sleep deprivation caused as a medication side effect.

While yes, medicine can be a huge help for us, depression is often something many don’t want to discuss, admit, or treat. We hesitate talking about it because we dread the doctors will force yet another pill on us, it’s just ONE MORE PILL none of us want to take in the first place and we’ll be less human with it. So we don’t treat it. We don’t talk about the things that make us sad. Which that silence in turn makes us feel more hopeless. All the while adding to that alienation feeling we already have dealing with our pain and inability to easily socialize.

In early 2000’s, research started investigating the ties between pain and emotions. This led to a publication in 2010 that found in fact “Negative Emotions Increase Pain.” With that thought in mind, our medical professionals are only now starting to recognize our depression adds to our pain. Which again can add to problem of feeling isolated. This depression increased pain can also add to our problems sleeping, even need more medicine, which again could add to more problems sleeping. All the while decreasing our mood…

As you can see this snowball slides down the mountainside picking up speed, sometimes even risking becoming a full-fledged avalanche. But we can slow this down, we all have tools available that can help.

  1. Seek medical help:
    1. if you think it can be managed without medicines, seek out a psychologist.
    2. if you think you may need medicine, find a psychiatrist.
    3. better yet, seek an office who has BOTH. This offers you the help finding which (medicine or no medicine) is better for your situation and promotes options where you come off when you’re feeling more you and the doctors think it’s safe to come off together.
  2. Talk with friends about things, we all know that sometimes someone who understands, we feel better
    1. Remember to listen to those friends, if they think you need to see professional help, then they care enough to urge you to take care of you
    2. Remember good friends LISTEN back, so don’t neglect your friendships because you feel miserable. Sometimes just listening to them can help you feel like you’ve accomplished something so don’t forget this important part of being a friend.
  3. Make a private blog to just vent both the good and the bad.
    1. US Pain just the other day shared a great reminder on this:
  4. And if you are at the edge, if you only see the blackness of the negative emotions around you, PLEASE call the suicide hotline.
    1. NOTE: We previously wrote about calling Suicide Prevention to help remind people to make sure to clarify things so there isn’t a miscommunication. Because if we need to call, we NEED to talk to someone. And just having that person to listen, to talk with about everything going on to get us through until we can get to our doctor. Sometimes that is the one grounding we need.

So no matter what you choose, or how many of these ideas you choose, DON’T try to do it alone if you have harmful thoughts about yourself or others. You are not alone and don’t have to be. Depression can and WILL snowball, but we can try to keep it from becoming an avalanche.

Pain Community Stuck In Another War

It’s recently come to light that pain patients aren’t just fighting a war against the US administration for our medicine, but now  Facebook Pain Groups are being targeted by Hackers. So we’re taking a moment to help educate the community.

Research your websites

As you notice below  in the light grey text above is a website domain name is provided: “personalhealthrecords.in”. This is going to be our example to find the answers for you to help avoid infecting your fellow members of the community.

RCDOM members could be War Casualties
RCDOM members could be War Casualties

Go to a browser and use a search engine to search for “whois personalhealthrecords.in” which will give you this selection on google. Please note whois is all one word not two separate words.

googlelinks
When looking at the first link there are a few key things you want to look for. First off the website’s “header” says a fairly recent date.

websiteInfo

Next critical piece of information is registrant information found under “Registrant country” which here it says PK. PK is short for Pakistan, NOT India (which is what the .IN in the address stands for). Finally add in the fact it was purchased late last year. The combination of the three create a trinity of warning signs to avoid. whois

Don’t share if there is red flags

Red flags are

  • hidden registrant information
  • registrants from foreign countries that don’t have English as a base language
  • sites less than a year old
  • registrants in countries other than the domain ending suggests. (.in is India .pk for Pakistan)

Please be very careful of the sites you share. As we mentioned even we were hit, so please know that this is the only way to verify if a site is safe. There is no set time frame, but I think articles like the one that got us, which were initially published the first time over a year ago suddenly reappearing on a page, is a safe bet it is not a valid website.

These sites are including viri and key logging applications. They affect both computers and phones. If you opened links, like the one we posted above, anti-virus applications MAY NOT FIND them yet as they appear to be very new. So please be VERY careful what you share and even more importantly what you open.

How to tell you’re infected

The only way I could tell I was infected was that my keyboard on my phone was responding slower than before and occasionally would open and close randomly for no reason I could explain. Sometimes until there is an issue or the virus is found by an antivirus applications like this can hide and run in the background for some time. Leaving your personal accounts vulnerable. So please if you have ANY CONCERN about what websites you’ve opened, consider carefully what you are using for antivirus software and if behaviors of your machine are not appropriate for standard use, then you may have an issue.

Does The End Justify The Means in the CRPS Community?

Life with CRPS is Hard.

It causes a range of emotions that most people would have trouble coping with, let alone someone who is sick.

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Why must we fight about who gets recognition about/for legislation or proclamations?

We are alienated as it is and to fight about who is going to get their name on a piece of paper, or get their name under a piece of awareness will be the death of Awareness for all people with RSD/CRPS.

We as a community need to realize that, no we will not all get along, but that doesn’t mean we cannot put aside ego, and other worldly drawbacks, and get real tangible recognition.

Why must it come down to attacking each other and/or putting them down because they did something you wanted to do. Instead of coming up beside them and saying, “Wow, I want to be a part of this too!”

Envy, Greed, and our Egos are a death warrant for awareness.

We all want awareness, we all want change, we all want A CURE!

Why waste time attacking one another and wasting precious time and energy on hurting someone who is one of the few who understands your physical pain.

In the end a piece of paper should not outweigh a HUMAN LIFE.

We all make mistakes, we all fall short of perfection. What we need to do is support and love each other without judgement, and team together against the only Enemy that matters.

CRPS

How can we beat this Monster you ask?

Awareness+Research+Education=Cure 

Where in this equation, is there room for any thing negative?
I only see plus signs. Positives.

If we add negatives we will never reach the end part of this amazing Equation.

I beg of you to look inside of yourself and remember this isn’t about one person and their fight.

We fight for each and every one of us, who has ever cried due to the pain, felt alone, scared, or hopeless.

Help us dry the millions of tears, remind each other we are not alone, chase away the shadows that make us afraid, and give Hope to the Hopeless.

We can do it! Don’t let anyone tell you otherwise.

Breakthrough in understanding chronic pain could lead to new treatments

FACTORIA SINGULAR / ISTOCKPHOTO.COM

Chronic pain, defined as disabling pain that persists despite attempts at treatment and often without obvious cause, has become a serious challenge for health professionals. It is not surprising that someone suffering from this level of pain might become depressed, but most studies consider depression a “comorbidity” – an associated disorder – or suggest that the pain is “somatization” of the depression – that is, it may be a mental disorder’s effect on the body.

These ideas ignore both the impact of pain on people and 50 years of understanding in pain science. A new study by Neil Schwartz at Stanford University and colleagues, just published in Science, has helped clarify the relationship between pain and depression. The researchers identify the underpinnings of loss of motivation in mice with chronic pain and depression.

For the study, they induced chronic pain in mice through injury. Before the injury, the mice were tested for their motivation to search for and work to get food. After the injury, they were just as interested in food they could obtain with minimal effort. But those with pain gave up much sooner when getting food required more work per pellet. This shows that chronic pain can reduce motivation.

Although painkillers changed their pain threshold, the injured mice remained poorly motivated. The net result is that they obtained less food. This is similar to human depression, where sufferers have difficulty finding the energy or enthusiasm to do anything, including activities they value. This results in fewer pleasant events and encounters, which may enhance the depression.

These behavioral studies in mice were backed up by studies of activity of neurons, both in vitro and in vivo (that is both outside the body and in the body). The researchers’ focus was on the nucleus accumbens, an important part of the brain’s reward circuitry. What they found was consistent with the reduction in effort, which points to the lack of motivation.

They suspected that a protein called galanin, which normally aids communication among neurons, may be involved in the brain’s reward circuitry. To test its effects, they bred genetically altered mice, some that produced no galanin and others that produced it in lower quantities. They found that the elimination of galanin restored the function of the reward system in cases where mice with chronic pain were required to put in more work to get food. But galanin’s presence, even in reduced quantities, triggers a pathway that reduces motivation in mice. Clarifying the role of galanin might help us design drugs that could moderate the impact of chronic pain.

Still much remains to be understood

These experiments show how pain and depression influence the pathways mammals use for processing reward or punishment. But this sort of behavior extends further into the animal kingdom, and it reveals how the motivation system may have evolved to be responsive to pain.

Any decision an animal makes is some sort of cost-benefit analysis. So changes in calculations of reward versus effort can drive changes in motivation, whether it’s the motivation to obtain pleasant or necessary ends (safety, food, social contact) or to avoid unpleasant outcomes (threat, isolation, hunger). Pain is a very fundamental threat and animals are hard-wired to place a high priority on staying pain-free, or limiting pain if they cannot avoid or relieve it.

A recent paper in Current Biology looked at sensitization, the process by which the nervous system becomes over-reactive to pain and amplifies it and even generates pain with no cause. It showed that injured squid changed their threshold for defensive behavior such that they were preyed on less than injured squid for which sensitization has been blocked. This is the first demonstration of benefit from sensitization, which is often dismissed as the unfortunate malfunction of the efficient alarm system that is acute pain.

In general, studies of depression and pain do not ask evolutionary questions. For instance, what is the function of a particular behavior that persists in the species despite its obvious disadvantages? In depression, diverse ideas have been proposed, from immune defense to risk aversion, but there are few experimental studies.

Distress at the acute pain stage is an important predictor of the likelihood of the pain becoming chronic, whether measured by self-report or by brain activation. Changes in emotional and motivational processing, and connectivity of the areas and centers involved, including the nucleus accumbens, predict chronicity better than other changes.

But knowing this hasn’t helped as much as we would like. Attempts to treat chronic pain are largely unsuccessful, and rehabilitation and self-management take immense effort. Prevention would be ideal, but it requires integrated thinking and hard evidence about the function of chronic pain, all of which is currently more evident in animal studies than in the clinic.

Written Posted on The Conversation at July 31, 2014 2.03pm EDT

Reader in Clinical Health Psychology & Science, Medicine & Society Network, UCL

All rights belong to the writer and the publication. This is just being replicated as the internet is not static and good information can easily be lost. (Spelling has been updated to American English standard.)