Communications

Unfortunately, we just discovered persons were posting “comments” on our pages. Pages will not alert us that you are asking for help. If there is a form on the page (such as the chat sign up on http://www.rcdom.org/chat) you can reach us through these.

The page comments function has now been deactivated. You may still post comments on articles such as this, but please try to keep to the topic. If you are needing to reach us there are many ways to do so but “public at rcdom.org” email is often times the best way to reach us.

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.

RCDOM now has Forums!

Forums
Forums
Our New Forums

We now have forums up.

You can find them here. Why did we put forums on our site you ask? Well, we went with this option after users pointed out”wall” posts to our Facebook were public and their family and friends were notified and we wanted to include our Twitter and Google Plus families.

You will find two forums, but you will not see anything in the “support” forum. Users can read and browse through posts made by registered members in the public forums without signing in.

For example, one of the posts I made, Weighted Utensils, was a topic that came up during A.M. Style’s radio show tonight. This was discussed as one of the items you can use at home to help counter act one of the conditions side effects, shaky hands, to help give them some control over their life again.

But until you sign up and are approved, you will not be able to post, reply, or see the support forum. Our reasoning is that our private venting needs to be among those who can be moderated. Though we would hope that this is used in a healthy way, we can and will address issues should they progress in a negative way against others or ones self.  Moderation will be limited as we ask you help by self managing your posts before hitting enter.

If you apply for an account, please be aware attempts to avoid data breaches are always made by administrators, but we will never intentionally share your information with anyone. Also know that approval is based on your user ID and email address having enough factors to suggest a non-automated system created the account. But there are steps on how to make sure your account is approved in your email after your first submission. Please use these steps as this helps speed up our processing time.

Otherwise, this could be a few days/weeks dependent on the administrators availability and with as there are up to 50 bots applying for access every day this can be a difficult challenge to try to NOT accidentally mistake a valid email address/user id combination from the bots. So if you do not do this step but your account is denied in error you will get another email with the form you can fill out again for us to recover your account before deletion.

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.

Overtaking Your Prescription

Recently we had a question about prescriptions and thought it was a good topic to discuss. Someone was intentionally taking more of their prescription then they were prescribed and therefore run out before their refill was due.

Now we all know in the attempt to prevent drug overdose deaths, this is a huge issue impacting our medical providers and why some medicines are now more controlled than they were before or have been modified because of unintentional overdose of things like Tylenol. But this is how we (I) responded in private discussion:

Taking your prescription
FACTORIA SINGULAR / ISTOCKPHOTO.COM

I’ll be honest, you should never take more than directed. #1 Because there may be potential interactions that don’t occur at low dosages that occur with higher dosages. #2 Because you run out early. #3 The more you are taking the more chance your doing damage to your body (digestive track), heart muscle, brain, liver, pancreas, that when too much is ingested, you run the risk of killing yourself (hence why they dropped the amount of Tylenol in Vicodin and Lortab). #4 Because your doctor WON’T TRUST YOU and may label you as a narco addict and leave you high and dry for many doctors to come. If it is getting bad you need to get a reevaluation to determine where you are at and where you are going. Ultimately you need to own up to what you did, IMMEDIATELY, apologize and ask for that reevaluation.

But I’ll be honest with you, the ONLY WAY you will regain his trust, is if you take less than you need. My doctors listen to me because I take as LITTLE as I need to survive so when I asked them for a prescription for my treatment I’m doing now, they didn’t even question it, because they know I’m trying to avoid medicine, avoid that “addict” label so many of us get. My mother and I both have this and it was her backing off on her medicine for an entire month (as in NO PAIN PILLS for an entire month) that helped not only prove to her doctors she was trying harder than anyone to be without medicine. When I asked her why she simply reminded me that over time your body and brain become “used” to the medicine and builds up a resistance, so a month off, it looses that tolerance and it starts to work again. So she has not left that dosage of Vicodin in years since doing this.

Please, please, please do NOT self medicate, change your medicinal, supplement, treatment habits without first consulting your medical team. In many states, doctors are required to do periodic drug tests on you to verify if you are taking your proper dosages of your prescription so we highly recommend tell them the truth if you are adding in things like medicinal cannabis and/or supplements. Because if it comes up, you could be asked to explain and/or could be denied your medicine for a length of time.

Long Term Reasons to Actively Communicate

Honestly, many medications have side effects that are still unknown due the lack of knowledge of potential repercussions of their long-term use. So communicating with you doctor proactively can help avoid creating potential mistrust with your doctor and allow them to help you with addressing these potential repercussions of our long-term needs as they might come up.

Accidental  Prescription Overdose Does Happen

And for those of us who think we have accidentally took more than they are prescribed, please go to an urgent care/ER to make sure that if you are in danger, you are still with us for another day.