Complex Regional Pain Syndrome
Posted: Thursday, December 4, 2014 12:03 pm
By Bill Chaisson
“There are two types of CRPS. Type 1, which accounts for 90 percent of documented cases, according to the Mayo Clinic, is marked by nerve pain when no nerve damage was involved in the initial injury. Type 2 is a more explicable development of regional pain after damage to the nerves.”
Read more-
via Treating Pain That Won’t Go Away – Ithaca Times : Family And Health.
Pain Awareness Month 2014
Help Sara move forward in her life by considering to support her medical treatment fund. Sara, like many of us has CRPS/RSD and is trying hard to work toward her dreams.
“They used their ability to provide detailed analyses of microvasculature and the vascular sensory and autonomic nerves innervating the skin in their Fibromyalgia study. That study grew out of work they’d done with chronic regional pain syndrome CRPS patients.”
Pain Awareness Month 2014
Barby Ingle on CRPS – PainPathways Magazine.
A great article on CRPS with Power of Pain Foundation’s President, my boss in the volunteer work that continues to give my family and I purpose and best friend. This current issue is also filled with great articles including Neuromodulation, heart felt quotes and more.
You can find PainPathways Magazine on Facebook to keep up with a great community.
Megan 15, Tori 15, and Gracie 11.
Help These Girls Get the RSD/CRPS Treatment they need!
Megan Manuel (15)
http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator
Tori Quinton (15)
http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy
Gracie (11)
http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment
2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.
As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.
Their adult world comes soon enough.
Each parent will choose their child’s options, they may even decide on something else along the way…
Any recognition for Megan, Tori and Gracie is much appreciated.
Thank you!
Real Love and Good Sex: for Pain Patients and Their Partners by Ms Barby Allyn Ingle (Author), Mr Ken Ray Taylor (Author)
I was honored to write the forward to this book.
Please keep in mind that the Ms Barby has Reflex Sympathetic Dystrophy and the tips she gives is her own, she’s not a sexual professional or expert. But a professional in her own life and sexuality living with a chronic, incurable, neuro autoimmune disease which affects the Central Nervous System, the Limbic System, Autonomic Nervous System, and most of all the Sympathetic Nervous System (also known as Fight or Flight) and multiple other bodily functions. The Autonomic Nervous System consists of both the Sympathetic and the Para Sympathetic. Depression is often a secondary diagnosis to RSD/CRPS, however that is not an issue here.
Barby and Ken attempt to help the reader or partner dealing with pain understand that the sexual component in a relationship is still possible. Perhaps not each and ever moment of the day, but that it is possible. Sex induces endorphin’s which in turn reduces chronic pain.
I am in my 14th year with this same disease.
All things are possible. You won’t know if you don’t try.
~T
Sometimes people only see what they want to see, hear what they want to hear, but do they really “hear” , “see” it”? It’s all perception! We live in a world of perception and deception especially online. The typed word is “perceived as “tone of type”. People take from it what they will. Imagination goes with it, fantasy, an idea of who or what you are. Tone of Type means how the other person takes your post, how they imagine it as if it came from your lips. It may not be what it is intended to be though after all there really is no tone, there is no voice, there is no body language.. it’s all the typed word. No seen or heard emotion. Nothing to actually base the tone on. I’ve shared so much through Social Media over the years, but I assure you, even with those who I thought were “friends”, I’ve never shared everything.
Since December of 2012 my life, our lives have changed drastically, but let me be fair in saying that just because I haven’t shared like I used to that it hasn’t continued.
(I know some of you know)
Due to betrayal, I haven’t revealed what I might have. I’ve shared pieces and parts. At the end of 2013 I learned a valuable lesson. One that carries with me. I already had reservations and a trust issues.. that person only reminded me that barriers and walls are meant to be kept up.
My husband had already had 2 heart attacks, he had 2 stents in his heart since he was 37 when the first occurred. The second occurred in 2011 if my memory is serving me correctly. Not many months after that our son, who was a freshman at the time sustained several brain injuries that still exist
today, so while I praise all of his efforts and good deeds online, we are still working to relieve him of symptoms, like breathing, smelling and other issues. I will not be ashamed to say that he was diagnosed with ADHD and was on Adderall for it for some time. By choice, partly his choice, we decided to go off the Adderall over a year ago and let his body take it’s course. He’s strong! He’s young! My Lil ‘ OZ! My husband had a quad bypass 17 months ago and is still dealing with Diabetes, Neuropathy, and the aftermath. He takes 11 medications upon waking, 4 in the afternoon, 11 at bedtime. I could care less about me anymore, even though it’s hard. Yep, hard! He took care of the me, I couldn’t keep up on so much, now I have to pull for all of it and I …
Will!
Some people think because I have hope in my heart, once every 3 months or so that I’m able to go out that I think my shit don’t stink, that I’m better than someone else…
I’m not! Nor would I ever think it. Seriously? ! I’ll be the play’a in my own game!
A pretty outfit, a little make-up, one leg leaning to the hard left while the other holds it up, wheelchair in the van, the stick out of view, but no one knows..
Invisible diseases are even invisible among the very people they should be acknowledged from.
Even those in remission are looked down upon, I mean you can’t have a bad day, you’re in remission, right? Wrong! Remission only means an absence of symptoms for a time being it doesn’t mean that no symptoms will present.
A time being can be minutes, hours, days, weeks.. there is no absolute!
Those people still hurt too, still feel fatigue and get sore, wear down more quickly than someone without an illness.
I’m not in remission! I just understand those who are.
Now have a CRPS patient taking care of another ill disabled person… add struggles, surgeries, life, precious children, the grand baby. This has been my life. As my son approaches another surgery next week…
When you think you’ve had enough and you can’t go on…. Go On!
Don’t ask me how I do it..
Auto pilot!
Don’t ask me how I feed the dogs, the cat, love my children, my grandson, my family, however distant…
Or how I take care of my grandson…
Don’t ask me about me..
Don’t even ask me how I lift my eyes..
Just know that I do..
~ #TVa
#StrongerThanPain
(But he leaned in and whispered it might be worth it)
I originally wrote this weeks ago and used the same title recently on FB to show how proud I am of my (our) grandson De’Mantai Xayvier Howard who made 8 consecutive honor rolls and graduated at the top of his second grade class (and the entire school) . … (this post was written before that and left in drafts)
Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.
It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!
If pain patients aren’t taken care of and the pain cannot be controlled..
The number of deaths continue to rise. The epidemic will be chronic pain related suicides.
Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.
DEA.. You don’t know pain until you’ve contemplated.
Speak up and speak out!
Let there always be a tomorrow. Fight for your tomorrow!
My day time stop breathing episodes have been worsening. It’s still and silent! Where ever I am in the breath at the time is where it all stops. If I had just inhaled I have a few seconds as if I’m under water, I’m not panicking yet. If I had just exhaled there’s little time left. I don’t gasp for air, my body doesn’t startle or flex, everything ceases. At some point in my mind I am aware that I’m not breathing this is when the panic sets in, I tell myself breathe, but I’m not breathing yet, breathe! I can’t even hear my heart beating.
And then I come back! My chest is thumping loudly, my head is pounding, my body is shaking, but I’m back.
I thought these were panic attacks in the past until I realized if they were I should probably be attempting to get air, take it into my lungs. My body and mind doesn’t react this way, though. I have a Pulmonary Specialist that I see for Central Sleep Apnea and Narcolepsy. I do know that I stop breathing numerous times a night for up to 2 minutes. I use an Auto Servo Ventilator for that.
When I was a child I nearly drowned trying to save my sister who was drowning. Her instinct was to save herself so I went under longer. I know what it feels like to not have that air and having it occur more and more often is frightening.
I’ve been lucky through out my life to not experience many headaches. Just average really with the flu, cold or just a random one. The headaches I’ve been having have been terrible. My chest, my jaw, face, arms. All of me, I suppose. Beyond what I consider my normal CRPS. My blood pressure has been on the rise. I’ve been on Lisinopril for it for over 2 years, but it’s still high in the 150’s and 160/’s.
One minute you’re doing something, even resting and the next your gone! The clock is still ticking, but time has stopped for you. You can’t make it move.
No one else can make it move either…
That’s fear!
We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.
~Twinkle VanFleet
Biology of addiction, current research on addictions and modalities of recovery
Improving global pain relief by achieving balanced access to opioids worldwide
Just a wretch saved by grace trying to do whatever I can to grow up.
Raising awareness for mental health disorders through a shared passion of video games, poetry and more.
motherhood - growth - living
Create a path of Light with your Life
Life Scripts of an INFJ
Finding Your Words
A safe place to talk openly about mental health & illness
Daydreaming and then, maybe, writing a poem about it. And that's my life.
Eu consegui. Você também pode!
Spreading The Truth About Kratom Mitragyna Speciosa
How our healthcare system is killing and harming us
A little something for you.
Nothing is impossible (at least that does not violate the laws of physics). When you can..violate the laws of physics!
Kavita Ramlal, Proudly South African
RSD Advisory- Where Chronic Pain & Depression Collide 