CRPS fighters needed

Hey Maria!
Yes! I would love to!
I hope you don’t mind that I’m sharing this comment in a post. I saw you write “Hi Everyone”, so I’m assuming this is okay πŸ™‚

*Those of you with CRPS/RSD, please read this message below!*
If you’d like more information about Maria’s story book, and/or want to participate in it, Please EMAIL HER! Using the email address provided.

I think it’s a great idea! Anything to help spread awareness, is a priority in my book!
Make sure you click on the event link that she has attached!
Thank you all!
Heather Lynn

———————–

Hi Everyone:

I am on a New and Exciting Journey and would like to share it with the World through assembling an Inspirational CRPS Story Book with YOUR HELP!
We will have the ability to share 50 different creative views to reach out to touch someone.
We will bring CRPS Awareness to the World through OUR EYES!
Like I said I can only do this with your help.
If you are interested in putting your story in the Inspirational Story Book that I am assembling.

SEND YOUR STORY TO;
RSDCRPSInspirationalStories@yahoo.com

Blessings,

Maria
https://www.facebook.com/events/140434086160981/

Chronic Pain and Relationships

β€œA true friend is someone who sees the pain in your eyes while everyone else believes the smile on your face.”
– (A quote from the post provided below)

Please read the rest of this post by clicking this link:
http://www.theprincessinthetower.org/blog/2013/07/14/Pain-Friends-How-Chronic-Pain-Affects-Your-Relationships.aspx

**************
**The Princess in the Tower has become one of my favorite blogs. Each post is written so well, to the point where it feels like the words are literally taken out of my mouth.**

It’s not a bunch of medical mumbo jumbo, which is great! Especially for those who do not have Chronic pain,and are reading posts on that blog, so they can get a general idea of what a loved one is going through.

*For those of you who do take the time to read literature about your loved ones condition, because you genuinely care and want to help/be there for them… Thank you.*
Believe it or not, there aren’t many like you. I lost almost all of my friends. Friends that were in my life for 15+ years. One of the hardest, was my “best friend” of 16 years. I was there for her through A LOT, and did a lot for her when she needed a friend. A sister. While she was going through medical issues. I’d drop everything I was doing for ANY of my close friends. That’s just who I am.

*I don’t understand how a nice handful of “close friends” could just drop me like a bad habit… At a time when I desperately needed them. Even if it’s just to come over and watch a movie! Going through that phase in this challenge that I’m dealing with, was the most hurtful, and always will be*

With that being said, I’d like to thank my family, with the bottom of my heart.
-I know there are times when I can be … Bitchy… (Sorry, there was really no tip toeing around that one).
– I know it gets really frustrating when I forget things often.
– I know it’s not easy to see me miserable,and there’s nothing anyone can do to help.
– I could go on… But, lets keep this list to a minimum πŸ˜‰

But through all of that, none of you have left. You have done the opposite. I know “that’s what families are for, to be there for each other no matter what.”

*But I’m so lucky to have you guys. I love you all so much. And I appreciate EVERYTHING you all do,even if I don’t act like it at the time. Pain like this can make you a mean person at times. But thank you for staying by my side*
I love you.

(I know, I was a wicked cute baby. That would fall asleep in my food πŸ˜› hehe)

For those of you who are a friend/in a relationship/a loved one, to someone who has a chronic pain condition…. Please don’t run.
We need you. We need support. When you just leave us,after being in our lives for so many years… it feels like you’re stabbing us in the heart.
Trust me, we are already scared. And going through a type of pain that is debilitating, and indescribable … While doctors don’t know what to do with us..

We need any kind if normalcy we can get.

Come over and watch movies! If my pain isn’t through the roof, lets go to dinner!

What I’m trying to say, is we are still here. We are still alive. No, we are not the same people but, with your help, there’s a chance that we don’t loose hope.

Any hoot! I’ll stop now. But please check out the blog above, it truly is amazing. And it is not solely based on CRPS!

Thank you all for letting me vent… On my own blog…lol

Until next time,
Heather Lynn<3

 

Love BlogLovin!

<a href=”http://www.bloglovin.com/blog/10212337/?claim=9nsabx95t2s”>Follow my blog with Bloglovin</a>

Hey everyone!

Everyone should get Bloglovin πŸ˜‰
Where you can get all the posts from blogs you follow all in one place! It’s pretty awesome.

If you don’t have an account with them, it’s super easy!!
*And NO, you do NOT need to have a blog to join!*

All you need is an email address! With that, you can then start to follow as many blogs as you want!
Whether its a blog about health, sports, arts & crafts, fashion, etc!

Just make sure you click on the link above, to follow my blog πŸ™‚

Thank you for stopping by!
I will be posting an update tomorrow, sharing info on a bone stimulator that I’ve been using. And why I’ve been using it!

Hope everyone’s week is going well.
❀ Heather Lynn

Follow my blog with Bloglovin

CRPS 101: for Beginners -RSDhope.org

CRPS 101:

 

Hey Everyone!

For those who are looking for information about CRPS/RSD, this post is for you! The content in this post is by Keith Orsini, the Founder of RSDhope. RSDhope is 1 out of the 2 National Organizations that represents CRPS. So, make sure you check out RSDhope.org! They have some of the most up to date information on CRPS, studies, treatments , etc!

This post does NOT contain all of the content that Keith wrote on his website. I am just providing you with a small snippet, along with the direct link to the full article! If you have any questions, PLEASE ask! Leave a comment on this post, and I will get back to you!

Thank you
Heather Lynn!

Beginners Guide to CRPS

Author: Keith O.
RSDhope.ORG
The direct link to this post is:
Right here

“Let’s face it, any chronic pain disease is life-altering.
But CRPS is chronic pain squared!
-It affects the entire family and it needs to be treated that way right from the start, everyone needs to be involved.
*So the information in this article, and on the pages of this website for that matter, is meant for the entire families eyes, not just the patients.*

**For many of you it is probably an eye-opening experience. You learn at one fell swoop**;

1) A name for the pain you have been experiencing; CRPS or Complex Regional Pain Syndrome formerly known as RSD.

2) That the pain is not all in your head as some may have alluded to, or maybe even have said to you directly!

3) You are not alone, there are millions of others like you suffering from the same disease.

4) CRPS is ranked as the most painful form of Chronic Pain that exists today!

5) A diagnosis of CRPS is NOT the end of the world and life does go on.

6) There are many others with this disease who are more than willing to help you through your struggle.

7) That some of the strange things you have been experiencing; short-term memory loss, lack of concentration, insomnia, inability to find the right word when talking, noise/vibration causing you pain, the simple touch of a loved one causing pain, being more irritable, etc.; are all part of your CRPS!

*There are many more things you will learn over time, if you wish. Maybe you just want to be on the outskirts and pick and choose which information interests you. That’s fine too. This is family, make yourself at home. I know I speak for our entire Board of Directors when I say “Welcome to our RSDHope Family!.” We do things a little differently around here as you will learn.*

Please click here to read the full article on RSDhope.org!

NEVER use ICE with CRPS!

**ALL of the information below is from http://www.RSDhope.org – They have amazing information about CRPS. Along with a lot of resources**

CRPS PATIENTS SHOULD NOT BE TREATED WITH ICE.

NOT ICE, NOT HOT/COLD THERAPY, NOT HOT/COLD CONTRAST BATHS THERAPY, NOTHING DEALING WITH ICE AND THE AFFECTED CRPS AREA.

ICE APPLICATION

It can make the CRPS worsen and/or spread. It can also accelerate the patient through the stages. This is extremely important for the patient to not only know but to make sure their Physical Therapist knows as well. Most Therapy Clinics have caught up on this, it has been known for many years now, but there are still a few out there who need the information. Don’t be shy about sharing it!

Patients can actually have their CRPS go into the next stage from repeated application of ice packs, and sometimes even from just doing the hot/cold contrast therapy

Ice will also cause the blood vessels to constrict more, reducing the blood flow to the extremities, increasing the pain, causing color changes, etc. but the real damage is to the nerve’s myelin sheath; basically, the protective cover for the nerve.The same is true for the bath therapy.

We know, it feels good at the time you put it on. We know it seems to make sense on some level, burning pain, apply cold. But in the end what you are doing is constricting the blood vessels, reducing the blood flow, and then when the ice is removed the vessels do not rebound because the protective sheath around the nerve has been damaged. More and more with each application, causing even more of the nerve damage you were trying to prevent in the first place.

Not all of these changes are visible to the naked eye, not all are noticeable immediately, and the effect is cumulative. For some patients, whose allodynia is more pronounced, those with a history of CRPS, or those with prior injuries/diseases/conditions even the application of ice in areas not affected by the CRPS can have the same effect.

HOT/COLD CONTRAST THERAPY

This can sometimes be called Therapeutic Contrasting, but whichever name it goes by the procedure is basically the same. It is the process whereby you are quickly changing the tissue temperature from hot to cold and back again, repeatedly. This is usually done by immersing the limb or even the entire body, using hot and cold water. How is this different from the usual method of applying heat or ice? By applying both in rapid succession it is an exaggerated form of both but it is typically done with water because it is more practical. Hot/Cold Contrast Therapy could be done with Ice & hot water, or Heat & cold water, depending on what part of the body is affected though.

Care must be taken with patients who have sensitivity to ice, high blood pressure, circulatory problems, where there are open sores, skin sensitivity, or CRPS. For a good description of Hot/Cold Contrast Therapy, CLICK HERE

Please make sure your Physical Therapist understands the role that ICE and Hot/Cold Contrast Therapy plays in the disease CRPS.

Doctor Hooshmand’s Ice Puzzle
RSD AND ICE – ICE AND CRPS
Neurological Associates
H. Hooshmand, M. D., P.A.
RSD Puzzle #102
Ice Versus Heat

In our study of ice versus heat tolerance, 87% of the patients could not tolerate cold. and 13% could not tolerate heat. The infrared thermal imaging showed that the ones who could not tolerate heat (13 %) had advanced stages of sympathetic nerve paralysis rather than nerve irritation (death of the sympathetic nerve fibers rather than hyperactive nerve fibers). The area of permanent sympathetic nerve damage in late stage acted like a leaky radiator, causing leakage of heat through the skin which resulted in warm extremity and secondary intolerance to external heat. Meaning that due to permanent damage to the sympathetic nerve fibers( after repeated ganglion nerve blocks or sympathectomy) the sympathetic nerves could not contain and preserve the heat originating from the deep structures of muscle, bone, etc. This minority of 13% of the patients did not have the hyperactive cold vasoconstriction of the skin seen in earlier stages of RSD. These heat intolerant patients would be classified as erythromelalgia, rather than the 87% RSD patients who have hyperactive sympathetic function with cold extremity and intolerance of cold exposure.

On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin. As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a few hours after the cessation of ice exposure, the pain recurs with vengeance due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice. This phenomenon causes excellent relief of pain with ice treatment followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP).

The end result is aggravation of the RSD and SIP resulting in failure of nerve blocks and then the patient is told, “You do not have RSD anymore because the nerve block did not help you and the phentolamine test proved that you do not have SMP or RSD”. In most RSD patients ice makes the condition worse and can cause denial of diagnosis and treatment for the patient. One last comment: this study was on advanced cases of RSD. In early stages of RSD, without exposure to ice, there is far lower percentage of RSD patients who from the beginning suffer from permanent damage to large areas of sympathetic nerve fibers with intolerance of heat and secondary erythromelalgia. It becomes obvious that heat-cold challenge physical therapy is nonsensical because it end result is one temperature extreme neutralizing the other and ice challenge further damaging nerve fibers.

Please stay away from any ice exposure, even if you can not tolerate heat.

H.Hooshmand, MD.
copyright Β© 2013 American RSDHope

Care Packages for Female Soldiers!

Hey everyone!

This post is actually not about CRPS! Crazy right? πŸ˜‰ hehe

(Even though, CRPS started in the civil war. After soldiers who were injured in the war, never got better-they only got worse…
Today, there is actually a large percentage of soldiers diagnosed with CRPS/RSD as well..)

But! I will save that topic for another post on another day!

A friend of mine, Christina, is rounding up items to make some nice care packages for the WOMEN overseas!

Please read the message below! From Christina, on her twitter page @ChivetteBoots!

Lets get these ladies some items they both want and need!

I went online to get some ideas on items that our heroes overseas love to receive!
(Many of these items are listed for both men and women, but it’s not too hard to identify which items are geared for females!)


( The list above is a basic list that soldiers of both sexes have compiled together)


(Above is a little mini collage of items!)

A list of items that I can think of, off the top of my head (some are listed already in the photos) are:

– Shampoo
– Conditioner
Body wash
– Shaving cream/gel
– Razors
– Cleansing wipes
– Nice smelling lotions
– Hair ties
– Hair Brushes
– Contact solution
– Lense cleansing wipes (for Glasses! But they work very well for cell phones, lap tops,iPads , iPods,etc!) THEY WORK WONDERS! For eye glasses! A girls gotta see,right?? Lol.
– Q tips & Cotton balls
– Tissues ( Pref. those portable Kleenex packs they sell)
– Chap Stick
Face wash/ Face cleansing wipes (may be easier)
Lotion for the face
– Sunscreen!
– tampons
– Pads/ Liners
– Deodorant ( Dove or something feminine)
– Nail files ( I don’t think they are allowed to paint their nails ,if they are-Please let me know and I’ll edit this!) – but,they still need to keep their nails short!
– Bright & colorful Wash clothes (To wash their face and stuff with)
-Sports Bra’s (A Variety of sizes)
– Travel size Landry detergent
– Landry bags (the type you can buy at CVS/Rite Aid- geared towards small items. This way, the ladies can put all their under garments in there to be washed. This way there is less chance of them getting mixed up with others stuff!!)
– Basically anything that you see in the “Travel items” section at the store.

*By sending them colorful items like that, even something as simple as a wash cloth, it provides a sense of “normalcy”.

I’ve spoken to many women who have gone overseas, and one of the main things they all said, was that they loved receiving things that made them feel “girly”.
Remember, these women are surrounded by A LOT if big, sweaty, and yes-sometimes smelly guys (lol sorry guys…it’s true. But it’s okay, we all still love y’all for what you’re doing over there! Thank you! <3)
So sending these women lotion that smells really good, some nice quality Shampoo & Conditioner, Body wash that will make the surrounding areas of the shower smell so good, would mean more to them than you’d think.

I know I’m forgetting things in the “Women’s hygiene” list above…if you’d like to add anything,please leave a comment on this post! For all the females reading this, try to think about the products you use at home… That you use to wash yourself, as well as items that you use to make yourself feel/smell good. Don’t the ladies overseas deserve those items too?! Yup!

((I do NOT know about the rules & regulations regarding Make up while overseas! But I also don’t see women making that a priority lol. I could be wrong,and if I am..please let me know! But I’d mainly focus on the types of items listed above!))

**NOTE: Everything MUST be sealed and in it’s original containers/bottles!!**

– Stationary ( paper, envelopes, pens, stamps,etc) so they can write home to their loved ones!
– Magnetic picture frames
– small photo albums- soft covers. Not the hard ones. (for them to place photos of their loved ones.
– Games! Especially any kind of card games (there are SO many! If you look in the card games isle of a toy store/Walmart/etc..you’ll see!) or even a few decks of simple playing cards.
– Crossword puzzle books
*Pretty much anything that can help make their time go by faster, and keep their brains busy*

– Individual Powdered drink mix (for water)
Like those Crystal light packets! Luckily, every company makes them now, so you’re able to pick out all different kinds of awesome flavors!

– Mio fit! drink mix! It’s very similar to the powered drink mix above! But *Mio Fit* has electrolytes and stuff in them! **Make sure you keep the seal on the bottles!!**
My personal favorite is the grape flavor YUM! That stuff actually gets me to drink more water (I hate water lol) but they have a million flavors!

-Poptarts, fruit roll ups, fruit snacks,etc.
We LOVE our sweets! πŸ™‚

(NOTE: although we love our chocolate, I’ve read on numerous sites, not to send any kind of food, that will easily melt.)

– Plastic reusable containers
– Ziplock baggies

Etc etc!

**Please leave any comments with ideas of other items to send!** πŸ™‚

——–Below is some info I found-not relating to the care packages that Christina is sending to the ladies.———

(EVERYTHING on this entire post can be used for any time of the year, for Men,Women,and even dogs! If you want to send over some goodies, this post can be used solely for ideas!)

Check out this link with some ideas to send to any soldier overseas!
http://www.helium.com/items/1569262-what-to-send-in-a-care-package-for-a-deployed-soldier

Two things I saw online, while putting this list together for care packages were:

1)

(Ha! I used to collect beanie babies! I still have them somewhere too! I will be sending these over!)

2) We can’t forget about the dogs that are serving for us overseas!


(I found this photo under google images. There was no identified source)

Many of those dogs are first line! And need to go for a good 90min of physical activity without any food or water!

Unlike humans, dogs can’t tell us when they need something. We usually find out before its too late.

Some things you could send overseas for the pups are:

– Portable/Plastic reusable containers! (For the owners to store food, and to put water in for drinking)

– Dog food (High quality)
-Treats
– Dog toys ( off duty)
– Animal beds
– etc.

Google “Care packages for service dogs overseas” you’ll see lists,as well as websites that actually have amazing care packages ready to go! You pay for them and ship them! Many of them have some high quality tools and devices for the dogs to use.
(Ex: Dog goggles or “Doggles”- for the times when they are running in the sand. It keeps the sand out of their eyes!)

Here is the link to find info about helping service dogs! http://operationmilitarypride.org/to-help-the-troops-try-helping-their-brave-dogs/

I want to personally thank all the Men,Women, and even the animals that allow us to celebrate holidays like today *(Independence day)* You are all heroes.

If you have any questions regarding the items for Christina to send overseas, please email her at beantownmeetup@gmail.com. Or on twitter at @ChivetteBoots!

Any other questions,comments,suggestions.. Please leave them on this post! Thank you so much!
Sincerely,
Heather Lynn

 

Fight Like a Girl fundraiser

Hey everyone!

I hope you had the chance to read my update (as of 7/1/13). If you haven’t, please read it when you get the chance <3.

I am trying everything, to raise the funds needed for HBOT treatments, in hopes for remission. (My update explains why HBOT is becoming more and more of my only option).

*Fight like a Girl club* is one of my all time FAVORITE non-profits! They have been for a very long time! I first discovered them, a few years ago when I started http://www.LetsRockTheRibbons.com! Their website is an outlet for fighters, survivors,caregivers,etc. to those who are effected by cancer and/or any other chronic disease/illness. I HIGHLY suggest you check them out! (* I have asked them if I could write for them, representing CRPS/RSD on a regular basis! Wish me luck!*)
http://www.fightlikeagirlclub.com


( One of their awesome posters!)

They also provide help, for those who really need it by helping to host a Fundraiser!
So! That’s what I’m doing! Below, you will see flyers with items to purchase!
**You can choose ANY color you want, and rock any cause you want! Although orange is CRPS/RSD’s awareness color- you do NOT need to choose a color to represent CRPS!**

Below, is a chart that is on Fight like a girl club’s website! It shows you the many different causes,and what the awareness color is for it! I am sorry in advance if the color for your cause is not available.

This fundraiser means a lot to me,not just because it is giving me an opportunity to raise funds to get treatment. But it’s giving others the opportunity to purchase something to represent a cause that affects them (either personally or for a loved one), knowing that a portion of the profit will be helping me as well.

**IMPORTANT**: I am looking for people who would like to be on my “team”.
By “team”, I mean individuals who would be willing to help me sell these items. I’d forward you the forms that FLAGC sent me (Order forms). As well as the flyers they emailed me, to be printed out (and save ink). They are just like the ones below!
If I am able to get a team together,then I have a higher chance at raising funds. I need to be able to sell AT LEAST 40+ items, to see any results.
If you are on my team, all you would need to do is ask your friends, family, co workers, followers on twitter/FB/IG/etc. If they’d like to help raise funds for a CRPS fighter,by purchasing items that represent a cause that effects them!**

*If you would like to be apart of my team, it would mean the world to me. I don’t have anyone in my team 100% yet. I will also have a special gift basket (w/all handmade items that you will love) for every person on my team,as a special thank you.*

If you are interested, please contact me ASAP!! If you follow me on twitter (@aBlondeBabe), then let me know on there and I will provide you more info! The same goes for Facebook! http://www.facebook.com/HLynnMD (public profile)
Or, if you are on my private account,then of course, contact me on there.

*If you do not have either, please email me at mmorheather@gmail.com* (I’ve noticed that I don’t always receive my emails, or I’ll receive them days later) I’m not sure if its because I check it on my phone or not. If you plan on emailing me,please leave a comment on here,letting me know! So I know to look out for your email. πŸ™‚

Thank you so much! And I really hope I can get a team together. ❀

Below are the items available for purchase! If you are interested in purchasing any of these items and/or any of your friends/family, please contact me!
(Again… On here by leaving a comment- leaving your email address, twitter,Facebook, or email: mmorheather@gmail.com )

IMPORTANT:
**DO NOT ORDER OFF OF THEIR WEBSITE! OR ELSE IT WILL NOT GO TOWARDS MY FUNDRAISER!** πŸ™‚


(Choose any color(s) you want!)

(FLAGC side wrap logo T!)


(Men’s Shirts!)

If you’re interested in ordering any of the above, I have an order form for you to fill out. And you will be paying through PayPal.(unless you order in person- With myself or a member of my team!) In that case, you will fill out the very short order form, and give the money in person. πŸ™‚

*If you have any questions, please leave a comment on here, I will reply with the answer! Who knows, others may have the same question!* πŸ˜‰

Thank you all sooooooo much! And I hope that you all check out http://www.fightlikeagirl.com!

Love,
❀ Heather Lynn

 

Definition:CRPS

Hey everyone!

I realized that I don’t even have the definition of CRPS on here! That’s not right! Below, I have attached A LOT of information about CRPS. What it is, who gets it, how you get it, where you get it, “why” you get it (which is really unclear because they still don’t know why), etc.

**We NEED more awareness regarding CRPS! Please help spread awareness by going to http://www.RSDhope.org and check out their stuff! Especially the car magnets!**
I also have custom made awareness bracelets, let me know by leaving a comment below! $10 for 2 bracelets (that includes shipping in the US)

Here is some important info about CRPS **ALL taken from http://www.RSDhope.org!*

 

 

*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.

CRPS MAIN SYMPTOMS

There are FOUR Main Symptoms/Criteria of CRPS:
**Constant chronic burning pain**- The pain, which is usually significantly greater than the original event/injury; though the affected area may feel cold to the touch to the patient it feels as though it is literally on fire; and is ranked as the most painful form of chronic pain today by the McGILL Pain Index. This symptom also includes allodynia which is an extreme sensitivity to touch, sound, temperature, and vibration.
**Inflammation**- this can affect the appearance of the skin, bruising, mottling, tiny red spots, shiny, purplish look; as well as affect the skin temperature of the affected area, cause excessive sweating, etc.
**Spasms** – in blood vessels (vasoconstriction) and muscles (sometimes referred to as rolling spasms) of the extremities.
**Insomnia/Emotional Disturbance**- includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, sleep disturbances, confusion, etc.
There are a great many additional symptoms that can also occur over the course of the disease. Not every patient will have all of the symptoms and the symptoms may change over time due to the stage the patient is in, the medications the patient is on, the treatments the patient is receiving, and even such things as time of day/month/season, and whether or not she/he is currently under excess stress!

*(see ADDITIONAL CRPS SYMPTOMS on http://www.RSDhope.org )*

A. Know the common sensory signs and sensory signs and symptoms associated with CRPS;
1.Continuous burning pain in the distal part of the affected extremity.
2. Pain is disproportionate in intensity to the inciting (original) event and usually increases when the extremity is in a dependent position.
3. Stimulus-evoked pains include mechanical and thermal allodynia and/or hyperalgesia, and deep somatic allodynia (pain due to touching the joints and movement of joints).

B. Know the common autonomic abnormalities associated with CRPS;
1) Swelling of the distal extremity especially in the acute phase
2) Hyper- or hypohidrosis (excessive sweating)
3) Vasodilatation or vasoconstriction
4) Changes in skin temperature

C. Know the common trophic changes associated with CRPS:
1) Abnormal nail growth
2) Increased or decreased hair growth
3) Fibrosis
4) Thin, glossy skin
5) Osteoporosis

D) Know the common motor abnormalities associated with CRPS:
1) Weakness
2) Coordination deficits
3) Tremor
4) Dystonia
5) Neglect-like symptoms or symptoms of disturbed body perception of the affected extremity

E) Know that Sympathetically Maintained Pain (SMP) may occur in CRPS (Barron et al 1999; Ali et all
2000; Baron et al 2002).

1) Be aware that thus pain component may be relieved through specific sympatholytic procedures (e.g.,sympathetic blocks).

2) Know that SMP is defined to be a symptom or underlying mechanism in a subset of patients with CRPS and not a clinical entity. The positive effect of a sympathetic blockade is not essential for the diagnosis of CRPS. (nor does a negative result mean no CRPS is present – comment from RSDHope)

F) Understand that CRPS evolves through different stages, although the duration of each stage may be variable.
courtesy of International Association for the Study of Pain
(for the definition of many of these terms visit our Medical Terms page)
—————————

There are TWO TYPES OF CRPS
CRPS Type I , formerly known as RSDS, can follow a minor nerve injury, a simple trauma (fall or sprain), break or fracture (especially wrist and ankle), a sharp force injury (such as a knife or bullet wound), heart problems, infections, surgery, spinal injuries/disorders, RSI’s (Repetitive Stress Injuries), CTS (Carpal Tunnel Syndrome), Tarsal Tunnel Syndrome, injections, and even some partial paralysis injury cases. There are some cases of CRPS Type I where there the nerve injury cannot be immediately identified. As many as 65% of CRPS/RSDS cases come from soft tissue injuries; such as burns, sprains, strains, tears, and most of the problems that end in β€œitis” ; bursitis, arthritis, and tendonitis to name a few.
New research done in 2006 by Dr Anne Louise Oaklander’s team at Massachusetts General Hospital revealed the presence of small-fiber nerve damage in nearly all the CRPS Type I cases they studied. For more on this see question number 14 here

CRPS TYPE II, once known as CAUSALGIA, involves definable major nerve injury.

**Early recognition of the disease, correct diagnosis, and proper treatment, are all essential in keeping CRPS from becoming a chronic condition. Treatment must begin within months of onset or significant probability of long-term disability occur. It is essential to find a CRPS-educated physican to ensure an early and correct diagnosis.**

SOFT TISSUE INJURIES – CRPS/RSDS TYPE I

What exactly are soft tissue injuries? β€œSoft tissue” is an expression commonly used to refer to the β€œsofter” aspects of the outer body, not including bones and joints. Muscles, tendons, and fascia are examples. Soft tissue injuries are commonplace and range from minor to very serious, depending on the nature of the injury. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More). We have gradually made the change-over on the website from the old, accepted, formerly used term of RSD to the now more medically correct CRPS. For a more complete understanding of the two, please see the section CRPS OR RSDS?

**From here on out we will be using the newer term CRPS. **

CRPS OR RSDS? WHICH IS IT? –
There may still be some confusion out there regarding the name of the disease. Do we call it CRPS or RSDS? Maybe your Doctor diagnosed you with RSD but everywhere you search for information it is called CRPS? (Go to http://www.RSDhope.org under “What is CRPS?”)

WHICH PARTS OF THE BODY ARE INVOLVED?

CRPS is a multi-symptom condition typically affecting one, two, or sometimes even all four extremities.

It can also be in the face, shoulders, back, eyes, and other areas of the body as well. CRPS is an involvement of nerves, skin, muscles, blood vessels (causing constriction, spasms, and pain) as well as bones.

*The Orthopod website describes this aspect very well:

“Sympathetic nerves are responsible for conducting sensation signals to the spinal cord from the body. They also regulate blood vessels and sweat glands. Sympathetic ganglia are collections of these nerves near the spinal cord. They contain approximately 20,000-30,000 nerve cell bodies. CRPS is felt to occur as the result of stimulation of sensory nerve fibers. Those regions of the body rich in nerve endings such as the fingers, hands, wrist, and ankles are most commonly affected. When a nerve is excited, its endings release chemicals. These chemicals cause vasodilation (opening of the blood vessels). This allows fluid to leak from the blood vessel into the surrounding tissue. The result is inflammation or swelling leading to more stimulation of the sensory nerve fibers. This lowers the pain threshold. This entire process is called neurogenic inflammation. This explains the swelling, redness, and warmth of the skin in the involved area initially. It also explains the increased sensitivity to pain. As the symptoms go untreated, the affected area can become cool, have hair loss, and have brittle or cracked nails. Muscle atrophy or shrinkage, loss of bone density (calcium), contracture, swelling, and limited range of motion in joints can also occur in the affected limb. These are in part caused by decreased blood supply to the affected tissues as the condition progresses.” (Source: A Patient’s Guide to Pain Management: Complex Regional Pain Syndrome)*

**DOES CRPS SPREAD?**

It may spread from one part of the body to another regardless of where the original injury occurred; CRPS can spread in up to 70% of the cases. In a small number of cases (8-10%) it can become Systemic or body-wide. (Source: Healing Soft Tissue Injuries: Muscles, Tendons, Fascia and More). CRPS usually spreads up/down the same limb, or to the opposite limb, but in an increasing number of cases it spreads to other areas of the body.


*( Mine started in my Right foot- it’s now in all four limbs)*

WHO GETS CRPS?

ANYONE can get CRPS. It is estimated there are between 1.5 and 3 million Women, Men, and Children in the United States alone. 75% of victims are women. The majority of victims develop the disease in their 30’s and 40’s but it can hit anyone at any age. Although in recent years more and more patients in their teens and pre-teens, especially females, seem to be developing the disease.

According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) “it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury” ( See National Institutes of Health – NIH CRPS INCIDENCE or the NINDS website as well). It is important to note that it states “peripheral nerve injuries”. Oftentimes when estimating the number of CRPS patients in the United States people have misunderstood that quote and/or changed it to read everything from 2-5% of all nerve injuries to 5% of all injuries. This results in greatly exaggerated estimates of the number of CRPS patients. Instead of the correct estimate of between 1.5 and 3 million CRPS patients these incorrect estimates can range as high as 5 or 6 million!

**CRPS – WHAT DOES IT FEEL LIKE?**

I was asked recently at my Doctor’s office by a visiting intern, “What does CRPS feel like?” This is a question I get asked quite often by the media as well. They want to know what the typical CRPS patient feels when they experience this pain. Every patient is asked this question, the detail of your answer depends on who is asking and the extent of interest they have in the answer. If they are asking what is CRPS pain like in comparison to other diseases you give the McGILL Pain Index answer, “CRPS pain is ranked as the most painful form of chronic pain that exists today and is ranked on the McGill Pain Index at a whopping 42!” (look for “causalgia” on the chart). If they are asking as a friend and you don’t want to scare them away you simply say “It is the most pain I have ever experienced, it hurts constantly.”

After all, many patients have already lost a great many friends because of the disease and they don’t want to lose more. If they are a loved one you try and protect them. You don’t want them to know how bad it is. You don’t ever want them to truly understand how much you suffer because you know how much they would then suffer as well. Many times your answer is simply, “I am fine. It is nothing I can’t handle.” Once in a great while you may let them know how truly horrible it is, after all, they see it in your eyes. But most of the time you try and shield them from the depth of your pain. If you have only had it for a year or two you aren’t as skilled at hiding your pain, or controlling it, as someone who has had it for ten or more.

I think long-term chronic pain patients get so good at masking their pain, our pain, that when we have to reveal it, when we come upon circumstances where medical professionals need to see the actual level of pain we are in, it is difficult for us to convey the depth of the pain, to truly let down our guard, those walls we have built up, for fear of not being able to put them back up again. It can actually be difficult to completely let down those protective barriers to reveal exactly how much pain we are in and many times our Doctors, especially new ones, don’t realize just how bad our pain actually is.

So, having said that, what does CRPS pain actually feel like? Let me share with you what I shared with my Doctor recently and maybe it will help you understand our pain a little better. CRPS pain can be anywhere in the body where there are nerves. Most commonly in the four extremities but some people have it in other areas such as eyes, ears, back, face, etc. What does it feel like? Well, if you had it in your hand, imagine your hand was doused in gasoline, lit on fire, and then kept that way 24 hours a day, 7 days a week, and you knew it was never going to be put out. Now imagine it both hands, arms, legs, feet, eyes, ears; well, you get the picture. I sometimes sit there and am amazed that no one else can see the flames shooting off of my body.

The second component to CRPS is what is called Allodynia. Allodynia is an extreme sensitivity to touch, sound, and/or vibration. Imagine that same hand now has the skin all burned off and is completely raw. Next, rub some salt on top of it and then rub some sandpaper on top of that! THAT is allodynia! Picture getting pretty vivid? Now, because of the allodynia, any normal touch will cause pain; your clothing, the gentle touch of a loved one, a sheet, rain, shower, razor, hairbrush, shoe, someone brushing by you in a crowded hallway, etc. In addition, sounds, especially loud or deep sounds and vibrations, will also cause pain; a school bell, thunder, loud music, crowds, singing, yelling, sirens, traffic, kids screaming, loud wind, even the sound in a typical movie theatre. This is what allodynia is all about. Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain, this, in addition to the enormous pain you are already experiencing from the CRPS itself. Imagine living with that pain and allodynia 24 hours a day, every day, for months, years, and longer. There are many other symptoms which you can read about in our CRPS SYMPTOMS section but these are the two main ones that most patients talk about the most.

– **I hope this helps you understand what we deal with every day.
Peace, Keith Orsini**

INCIDENCE OF CRPS

According to the National Institute of Neurological Disorders and Stroke (NINDS) and the National Institutes of Health (NIH) “it has been estimated that CRPS may present itself in 2-5% of individuals with peripheral nerve injury” ( See National Institutes of Health – NIH CRPS INCIDENCE or the NINDS website as well). It is important to note that it states “peripheral nerve injuries”. Oftentimes when estimating the number of CRPS patients in the United States people have misunderstood that quote and/or changed it to read everything from 2-5% of all nerve injuries to 5% of all injuries. This results in greatly exaggerated estimates of the number of CRPS patients. Instead of the correct estimate of between 1.5 and 3 million CRPS patients these incorrect estimates can range as high as 5 or 6 million!**

There is much more to it! Please check out their website! http://www.RSDhope.org!

Thank you so much!
Heather Lynn

 

Hope

Hey everyone!

Those of you who are dealing with a chronic illness/Disease/Syndrome/whatever else they’d like to categorize us these days! Remember one word…. Hope.

I’d like to share some quotes that I found on Fight like a girl Clubs facebook page! (I LOVE THEIR SITE btw!!) the link to their site is right here: http://www.fightlikeagirlclub.com/

*Hope*

This one below,I feel was written for me! As I’m sure many others will relate!

At the end of the day, just remember…you’re not alone.

I hope everyone’s weekend is a great weekend,and pain free.
Love,
Heather Lynn

 

CRPS tool box: Helpful Tips!

Hey!

So…I was searching the Internet to get some information on a doctor that I am supposed to see at the end of the month,and I found an awesome site!

*(Side note: whether you have a health condition or not,ALWAYS google a new doctor you are going to go see! 9 times out of 10, there will be reviews from their patients on there. ESPECIALLY if they have bad reviews! Doing this may save you a trip to a doctor with horrible bed side manner,or w/e reason they suck!)*

With CRPS/RSD, we have specific things that trigger a “flare up”. For me,I know exactly what my triggers are,at least for now. (Things change everyday)
My #1 trigger for a flare, is weather! Ugh! If the temperature changes too much,too fast. When it rains, snows, if it’s foggy,humid…etc. My feet automatically flare up,then my arms shortly follow.

This isn’t just with CRPS/RSD, Arthritis, Fibro, etc… So this tool would work for you too!

“The Aches and Pains weather checker”

Here is the link!
http://www.weather.com/activities/health/achesandpains/

See where it says “**Pressure**?”
– That’s the first thing I look at. Notice how it says 30.18 and *falling*?
~ Well,for me, that means “Heather..if you’re not feeling it yet, expect to start feeling a flare VERY shortly!”
Grrr! But! I rather know why Im flaring.

Another recommendation I have for those of you who have chronic pain, Migraines, etc. Download the **My pain Diary** app, on your iPhone (and possibly an android- I am not sure if the android version is available yet).

This app is beyond amazing! I could go on forever about all the things this app can do,and benefit you. I highly suggest you either check your App Store and/or google **My pain diary** and you can see the awesome features available with this app!

I hope everyone has a great week!
Thank you!
Heather Lynn