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

New Website Options on RCDOM

With the new website comes more options, more privacy, more that we want to offer.

Accounts:

First of all, if you have a WordPress account, you can use that same account to log in here.  If not, or you don’t want to use it, you don’t have to.

Profiles:

You can create your own profile and with Gravatar and choose your own icon image.

Submissions:

We’re always looking for good information and if you are interested, you can submit your account to be upgraded so you can submit articles to be posted on the site and maybe even published in a newsletter.

Forums:

We’ve been asked for private forums because our page is public on Facebook. We’ll because we hear its frequently so their FAMILY on Facebook can’t see anything we opted to move our forums off Facebook entirely and creating a private internal network. These can be found here.

Maria – RSD Changes Everything, Even our Shoes

RSD Angel Express Newsletter

I’m Maria; I’m a wife and mother, fashionista and shoe enthusiast.  Not all of my days are bad, but no one knows about the really bad days because I hide them. Often, I feel like my CRPS has stolen my sense of self. I have a great doctor and on my good days I really enjoy life. My family knows what my battle with CRPS is like, but no one else really has a clue, until now.

I have Complex Regional Pain Syndrome CRPS. This is #myinvisiblefight.

When I worked for a school district, I  prided myself in my dress. I identified my inner self with sense of style and always being well put together. I owned stylish clothes, a mountain of shoes with cute heels; wedges, stilettos, strappy shoes, mules and all in different colors. I adore shoes. I love jewelry and always accessorized and coordinated my outfits with my jewelry. I could never wait for pay day!loved browsing my favorite local boutique and more often than not would pick up a new set. I wore my makeup tastefully to highlight my eyes and hair. I loved dolling  myself up everyday so that no matter what the situation, I felt like I was ready to tackle anything.

When I was diagnosed with CRPS in April of 2010, I was not prepared for the life changes ahead of me.

CRPS is the most pain neurologic disease that can be diagnosed. On the McGill pain scale, CRPS is listed above a first birth, kidney stones and having an amputation. This is daily pain, inflammation, and swelling that never lets up. It is always there. The symptoms never subside completely. CRPS typically occurs after an injury or surgery, although spontaneous cases have been reported.

CRPS is a non-discriminatory disease.

The sympathetic nervous system runs through the nervous system, the bones and all the organs. It puts the body in constant “fight or flight” mode so swallowing; digesting food and even the resting heart rate can be affected.
The first things that begin to happen to my body were severe allodynia, or extreme sensitivity to the lightest touch. Even the air from a ceiling fan would cause extreme sensations and pain. I had to change what clothing I wore, some fabrics were simply to harsh and uncomfortable and painful on my skin.  I went from tailored clothes to loose fitting because of the extreme sensitivity.

I did not yet know right away but CRPS was affecting my legs, it had started in my upper torso. My cute shoes turned into flat loafers and I could barely walk by the end of my work day. Still, I had to fulfill my contract through the first week of June with the school district. So on I carried, in my flat loafers as best I could, until summer break.

I spent the entire summer having tests run, and by the first week of August it was official that the CRPS  had spread and the symptoms continued to progress. It became painfully obvious that I would not be able to return to work. Within months I became homeboundand unable to drive.

Here is what I want you know about my invisible illness:

  • I don’t ever go out without makeup and a cute maxi dress or capris and cute shirt. I may look cute but I am always in pain.
  • When I am at home, I do not wear makeup. I wear a tank top and underwear.I am never cute or put together.
  • If someone drops by unannounced, I am embarrassed.
  • My once immaculate house is no longer pristine. I can not do housework. I can not afford to hire help. My daughter and husband do what they can when they get off work from their demanding jobs. Occasionally I put dishes in the dishwasher or a load of clothes in the wash.
  • My carpets used to be impeccably clean.They are now in desperate need of cleaning. 
  • I am on Medicare at the age of 46, and have been unable to receive SSI Disability because I worked for a school district and they paid into an alternative retirement system.
  • My 24-year-old daughter stepped in to help pay bills and support me. Everyday, I fear that I am halting the progression of her independence.
  • My son moved out at the age of 21- he could not stand to watch this disease progress.

You can not see the tears and heartache of a family that no longer depends on me for anything. They don’t call me for anything. They call to check and see if I am doing alright. My son calls and asks how my day is going.
You can’t know the toll this on taken on my intimate life. My husband and I have been married 26 years and are still very passionate about one another. Except, either I can’t or don’t want to be touched. It hurts.
You can’t see the days I can not bathe. I towel off, don’t smell fresh, hair unkempt, teeth not brushed because it hurts too much. The fatigue can be overwhelming and I sleep for 16-18 hours a day.
You can’t know the frustration of having a husband sleep in another room because I am awake 2-3 hours in the middle of the night watching tv, or on social media on my phone. Sleep eludes me or pain won’t let sleep so I am awake disturbing him.

It may sound like my marriage is unhealthy, but it is just the opposite. It’s better than ever. I never knew how much he loved me.

My husband has climbed in the shower to help me bathe, calls me to see if I have eaten and brings me food, he calls me from the grocery store to get a list. If I’m having a flare in the middle of the day, he or my daughter will leave work to be with me. They worry when I cry because I never cry. If I wake him at 2 am and I need to go to the emergency room, he is dressed in record time. That has happened a dozen times in the last 5 years. If he wasn’t able to take me for some reason there is always my daughter. She has given up days of work for me. Her boss understands and works with her.  For all of this, I am so grateful.
You can not see how much I miss driving to the store or taking myself to a restaurant. I have to wait for someone to pick me up be home. At this age I feel like a teenager waiting on my mom and dad.I have watched my daughter take on an authoritative role and I am the dependent. I hate this but at times it is what is needed. I am dependent on my family. They are #myarmy. 

You can not know how it feels not to be able to bathe myself or comb my own hair. This is not an all the time thing, but there have been spans of time where this is my reality. From totally put together to completely disheveled.

My despair is not constant, but when the depression settles in it comes with some dark thoughts. I have found myself thinking, Why am I here? What do I contribute? Am I a burden? Do I want to live?

That last question worries them the most. They assure me that I am wanted, loved….From what do they draw that conclusion? Don’t get me wrong, I am not suicidal but learning to be me in this skin has been tough. I will always share a smile, and a positive thought or phrase because I do believe better days are ahead. I do have faith and a belief that God and my family are reason enough to be here.
But my private thoughts aren’t always so bright.That is why you will never know how much I depend on a laugh, kind word, social media post a message on my phone….It is the simplest of gestures that get me through. They mean so much because someone took their time and energy to think of me when I can not always give in return.

So, that has become my purpose.  To be a beacon of happiness as best I can; to give back to others and to remind them of how they should be happy! There is so much to be thankful for and happy about. Lifting someone’s spirits because the same has been done for me is my mission.

“Never ever think your voice is lost in the universe….It is unique and needed…..You don’t know but I am listening for it.”
~Maria Anne Tripp Martinez

Reshared with Maria’s permission. Originally posted on patientworthy.com

Ask an Angel: School Age CRPS & Education

Education

My child has had CRPS for a few  years now! It’s in the foot, ankle, and hand but really bad with pain in their ear( permanent headaches, nausea, vomiting, dizziness, and fainting)!

They’ve started taking some medicine which really improved the joint symptoms; the pain is still constantly there but it’s easier to deal with. Then they have more medicines for a stomach pain and nausea and has been on medicine for migraines for 6 weeks now.

School
Going to School with Chronic Illness is hard, with CRPS it’s an Ineffable Challenge.

My child copes really well with these symptoms when they are all the time but when suddenly they worse, they communicate with the teachers at school that symptoms are extra bad and most of the time they are letting her leave the lesson.

  1. As a mom, how do kids cope trying to deal with this and going to school?
  2. What can I do to work with school (who are probably going to get fed up in the end) about the need to get out of class?
    1. I get the impression that they think that as soon as my child feels a remotely sick its communicated to them. But this is not the case, as my child actually feels bad constantly and only tells them when it has progressed to the point my child’s has blurred vision and head is spinning!!

Any advice on how to help would be really appreciated!

A RSD Angel asks about the Freezes

Ask an RSD Angel
Ask an RSD Angel: freezes
Ask an RSD Angel: freezes

QUESTION: Even though I am a flame of burning heat, I also experience extreme ice (freezes), coldness in my feet and ankles. The cold hurts so much that I heat up rice bags I’ve made to warm them up or I cannot sleep until they are warm enough to allow sleep to finally come to me for a few hours (never more than 2 hours continually). Is this normal?

RSD Angel Asks: Medicine gaps

Ask an RSD Angel

RSD Angel Asks:

So a patient had to change their providers, but has a significant gap (at least a few more weeks) between medicine running out and their first appointment. Their having a lot of extremely unpleasant side effects.

What have you found that works for you to get by when you’re stuck in a window of time without you’re medicine?

Community Support Newsletter

RSD Angel Express Newsletter

For those who have not heard, our great friend and huge supporter A.M. Styles a started a newsletter to bring hope, laughs, and new ideas has come to the presses.

RSD Angel Express Newsletter
RSD Angel Express Newsletter

For the last 9 months, he’s been publishing his newsletter to help get some great inspiration, news, information out to the community. With his permission we have published his “RSD Angel Express” current and past 3 editions on our new page.

Some of our administrators have submitted articles for this newsletter and he has opened up the offer to others in the community to send items for future publications. Be it inspirational stories, laugh clips, events to include in the upcoming calendar, and persons you feel should be considered to be recognized as pillar of the community. At this time, these are quarterly publications so they are limited on what they can include, but we highly support his desire to bring about this great contribution and encourage you to submit your works for consideration.

If you want to submit items or be added to the delivery list when they are published, please email him or our webmaster Andre Duncan. If you do not have Facebook, please submit a message through our Contact Us with your email address and what you want us to tell him and we will pass it on as well.

Thank you again A. M. for all you do!

Is This Real? Fight and Survive

RSDAngelStrong

Hi my name is Breanne aka “Brie”. I am 35 years old. I live in California with my husband and 3 boys. I also have 2 dogs. I have always been a very active person and love cooking and baking. I loved chasing after my crazy boys and being out and about with my family or friends.

That all started to change is April/ May 2014. I am not quite sure when it happened or what even happened since I didn’t experience a trauma. But it felt like I woke up one morning and my left foot was swollen and in extreme pain. Due to the fact I was always a clumsy person I though may I twisted my ankle without realizing it and treated it as a sprain. I wrapped it. I iced my ankle which cause even more pain. I soaked in epsom salt. I did everything you are supposed to do for a sprain. Finally in July I couldn’t take the pain anymore and it not getting better. I went to the ER. They did x-rays, blood tests, and a sonogram. They gave me a shot that was supposed to take the swelling down and it didn’t. The x-rays showed I had a fracture in my heel. I also said I had cellulitis. Sent me home in a boot, crutches, 800 mg Motrin, and antibiotics. Once finished with the antibiotics nothing happened. I went from taking 1 Motrin to 3 at a time. NOTHING helped. I called my doctor in September and got in the next day. He told me the boot was causing the pain and swelling. To remove it. I did. 4 weeks later. No relief. I called again. He sent me for another x-ray. The next day I get a call. Fracture healed but you have a fluid filled cyst in your ankle. Going to get you to an Orthopedic Surgeon but first we are going to do an MRI. Middle of October I went in for the MRI. They couldn’t use the smaller size foot hold and used a men’s size for me. The pain was horrible. The swelling was 4x the size. I was told 3 days for results. The next afternoon I get another called from my doctor. He says “My God girl what did you do to your foot?” Most of my ligaments were completely torn and the ones that weren’t were ripped. He made an appointment immediately for me to see the Orthopedic Surgeon. I had to bring a copy of my MRI. Of course being me I looked at the report. Bruising all the way through my bones. Then I saw the sentence that made me numb. Signs of Complex Regional Pain Syndrome.

Before I go on I should say I am the daughter of a RSD/ CRPS warrior. My mom got it in 1989. There was never anything showing it was or wasn’t genetic so I never told doctors about her RSD. Never felt the need to. Why would I?

So anyway I burst into tears because I knew what my mom has endured for 26 years now. I knew it spread through her body. I knew she was 35 and it started in her left knee and I knew I was 34 and mine started in my left foot. I cried. I mean I cried! I am not big on crying but I did. The next day I went in to the Orthopedic Surgeon. He took a look at my MRI and came in and said I have to refer you to a Pain management specialist before we go any further. You will need surgery but I can’t do anything till we know if you have RSD. That was the first time I brought up my mom. His eyes got huge. I told him the Motrin wasn’t working. I had stopped taking it. He prescribed naproxen and a pressure stocking. The pressure stocking was HORRIBLE. It cut into my skin in so many places. The naproxen was a Joke. I went in to see Dr. Barnett in the beginning of December. He looked at it. Ran things up and down my leg and foot. Then said we need to do a nerve block. That will help us see what is what. So we got approval for it and on December 22nd I went in. It didn’t work. We tried another in January. That didn’t work. Then we tried to do 3 one week apart in end of March, beginning of April. Nothing was working. We have tried two different topical creams. One the Ortho prescribed which wasn’t for RSD at all and actually made me sick. Second was a compound cream that didn’t work. I have yet to try pills because I have seen what they did to my mom and I don’t handle pills well. I am trying for the SCS treatment and am the first stages of qualifying. Not sure what I am going to do if I can’t get it or if it doesn’t work.

I keep going though. I try and try. I don’t go out much anymore. A lot of my friends get annoyed but are trying to be supportive. The thing I miss? Chasing my toddler around. He will never get to experience that part from me. I hardly sleep. My pain is getting worse. I almost fall constantly now and am slowly bringing myself to understand the cane I use in the house may be something I use more then on “cane days”. That everyday may soon be a “Cane day” and that scares me.

I have survived a lot in my life.  This is a fight I will survive too!

Cliff Ansteth

RSDAngelStrong

Who is Cliff?

My name is Cliff Ansteth, I am a 31 year old father of 4 great kids and a husband to a loving wife. And I once loved to work with my hands, but I have a rare autoimmune disease known as CRPS (Complex regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy). I have it in both of my hands and arms but it can spread anywhere it wants.. including organs.  I will share a paragraph from RSDHOPE.ORG  to better explain this disease.


“Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index .”

So what’s happened so far?

I have been out of work on doctors orders (3 separate doctors) since October of 2012. My case of CRPS developed after a work related bilateral Carpal Tunnel release surgery. I cannot use my hands for a simple everyday tasks without making this excruciating pain worse. There are treatments available that can help, but the insurance company is denying my right to treatment. I cannot collect unemployment and I cannot collect disability without a fight. All I want is to feel normal enough to go back to school to find a way to provide for my family again, but these days I find it tough to get out of the house.

My condition has tested me and my family in more ways than I can ever explain, but we need help now more than ever. The insurance company has given me the opportunity to appeal their decision to halt treatment. But it is at my expense and I have no income. My wife has returned to work so that we may survive, but it does not cover the expenses to pay my attorneys and doctors for their depositions in court to speak of my condition.

I can no longer burden my family financially and I am hoping that there might be some people out there that know what it is like to have a painful disease, and not be able to get proper treatments. I can bear the pain but it is destroying me inside, and my kids deserve their fun daddy back. Anything will help us at this point, But what I am seeking is my right to be treated by the proper doctors, that will help me live a “normal” life and achieve my goals in life.



The pain has recently shot up all of my fingers causing swelling and bulging veins. I cannot bend my fingers or straighten them out without paying a toll.


Loud noises, excessive movement, or just plain old-fashioned stress can trigger the FIRE to ignite from within. 


While my hands may seem “normal” to some, in this picture the swelling is somewhat reduced so that you can see the atrophy and pitting where muscle is depleting.


Want to know more?

Anyone that wants more information on CRPS can click the links that I have provided. Or if you have a strong stomach, you can Google image search “CRPS” to see what the prognosis typically is. If you want to know more of my story or would like to share your own with me, I have provided a link to my Facebook at the top. Just click on my name.  

Thank you all for reading my story and God bless you all.

(This was shared at Cliff’s request via a copy and paste from another site. So if some sentences seem non-CRPS familiar focused, it’s because he’s trying to educate as well. GO CLIFF!)

RSD Angel Asks About Answering Questions

Ask an RSD Angel

Please post answers on RCDOM.org so that people on other sites can see the answers as well (this is to avoid only Facebookers seeing the Facebook answers, the Google+ users only seeing the Google+ answers, etc).

How do you respond when people ask what’s wrong with your foot/hand/limb/whatever and why it hasn’t “healed” yet?