RSD and Chronic Pain
Ranked #10,197 in Healthy Living, #169,152 overall
Information for Chronic Pain sufferers and their Families. Do you know what RSD is ?
This lens:
is meant to really help you or a loved one avoid suffering needlessly.
Do you suffer from chronic pain?
Do you have a family member or friend or know someone who does?
Is the cause clear? Are you sure?
Did You Know that it is estimated that millions of people's pain and symptoms go undiagnosed or misdiagnosed?
In this lense, we will be posting information regarding Chronic pain,
with a focus on Reflex Sympathetic Dystrophy, RSD,
also known as CRPS Types I & II, Chronic Regional Pain Syndrome.
We will also be posting and linking to information regarding pain, and chronic pain in general.
Sadly, 1 in 2 people in America has some chronic condition.
Millions live with undiagnosed and under treated chronic pain.
That means you or someone close to you does.
I am an expert; I have lived with constant severe pain, and its consequences for many years.
It CAN happen to you. I was an unusually healthy lug of a guy.
President and founder of successful businesses, the go-to guy for many people, from my parents to children, from Little League teams to my Church.
Then one expectedly routine surgery caused this neurological nightmare.
It happens to millions and they never know why.........
Please read this lens for your sake.
Thank You
Please note "Causalgia" at the top of the pain scale illustration from McGill University, is interchangeable with RSD / CRPSFollow RSDSA.org on Twitter http://twitter.com/RSDSA
Do you (or someone you know) live with chronic pain? Could it be RSD/CRPS ?
Suffering in pain is bad enough. Having the wrong--or no--diagnosis is intolerable.
Reflex Sympathetic Dystrophy, also referred to as Complex regional pain syndrome(CRPS) is a chronic pain condition that is believed to be the result of dysfunction in the central or peripheral nervous systems. Typical features include dramatic changes in the color and temperature of the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. CRPS I is frequently triggered by tissue injury; the term describes all patients with the above symptoms but with no underlying nerve injury. Patients with CRPS II experience the same symptoms but their cases are clearly associated with a nerve injury.
CRPS can strike at any age. It affects both men and women.
Symptoms of CRPS:
The key symptom of CRPS is continuous, intense pain, which gets worse rather than better over time. CRPS most often affects one of the extremities (arms, legs, hands, or feet) and is also often accompanied by:
-"burning" pain
-increased skin sensitivity
-changes in skin temperature: warmer or cooler compared to the opposite extremity
-changes in skin color: often blotchy, purple, pale, or red
-changes in skin texture: shiny and thin, and sometimes excessively sweaty
-changes in nail and hair growth patterns
-swelling and stiffness in affected joints
-motor disability, with decreased ability to move the affected body part
-Often the pain spreads to include the entire arm or leg, even though the initiating injury might have been only to a finger or toe. Pain can often travel to the opposite extremity.
The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although some
Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.
Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.
In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility have a Body-Wide case.
Helpful Links to Chronic Pain Resources
Expert organizations and chronic pain support
- American Pain Foundation
- A Great Resource
- American Chronic Pain Association
- Good resource for Chronic Pain Info
- RSDSA
- The Reflex Sympathetic Dystrophy Syndrome Association (Top Resource)
- American RSD Hope
- A Personal Favorite
- International Research Foundation for RSD
- Another Top Medical and RSD/Chronic Pain News Site
- The Big List of RSD and Pain Resources
- Dr T. Howard Black's Definitive Link List!
- New TipJoy voluntary payment link
- If you benefited from this page, you can tip the creator instantly with this link :)
We are trying to offset hundreds of thousands spent on personal medical care.
Thank You. - RSD Association of America's YouTube Channel
- Official Youtube video Channel of the RSDSA (The authority on RSD/CRPS)
New Survey results on narcotic use by RSD patients. And Excellent article on re-humanizing patients from Reuters
Method
From October 23, 2008, 12:00 pm, to November 2, 2008, 12:00 pm, a survey was conducted by the RSDSA regarding the use of opioids in people with CRPS, and specifically, the thoughts of this population, and their caregivers, about abuse-deterrent components in opioids. The survey was sent via e-mail to 4,959 contacts from the Electronic Alert listserv of the RSDSA. Of these 4,959 invitations, there were 513 completed survey responses (10.34%). The survey consisted of 7 questions surrounding the topics of opioid use, physician prescription of opioids, and abuse-deterrent components in opioids (See 'Question-Answer Details' for the survey questions).
SurveyResults
Maintaining Patients' Dignity Still Possible Despite Constraints on Time
Reuters Health Information 2007. © 2007 Reuters Ltd. NEW YORK (Reuters Health) Jul 27 - Patients are more than the illness they have, and failure to understand who they are and to treat them with respect is akin to "operating in the dark," a psychiatrist at the University of Manitoba writes in the BMJ for July 28. Even with the time constraints and tight budgets of today's healthcare systems, preserving patients' dignity is still possible, and is critical to keeping patients off the doorstep of despair, writes Dr. Harvey Max Chochinov. Dr. Chochinov writes that attitude, behavior, compassion, and dialogue -- "the A,B,C and D" of dignity-conserving care -- create an empirical framework for maintaining what he calls the core values of kindness, humanity and respect. He presents checklists of practical ways to implement the dignity-conserving care in everyday practice. First, and perhaps most importantly, he writes, clinicians need to recognize that their own attitudes and assumptions affect how they deal with patients and mediate their role in preserving patients' dignity. They need to examine their own attitudes toward and assumptions about patients, and to check their accuracy. For behaviors, he lists suggestions for conducting clinical examinations and facilitating communication that "enhance trust and connection between patients and their healthcare providers." Compassion "refers to a deep awareness of the suffering of another coupled with the wish to relieve it," the author writes. Through compassion, one recognizes the emotional impact that accompanies illness. Showing compassion may require no more than a gentle touch on the shoulder or any communication that "acknowledges the person beyond their illness." Finally, it's only through dialogue that a clinician can realize and understand the non-clinical aspects of a patient's life that affect the physician's approach to his or her illness. Dr. Chochinov is a palliative care specialist, but recommends his framework for every level of education and across all medical subspecialties, multidisciplinary teams, and allied health professions. BMJ 2007:335:184-187.
Had You ever heard of RSD or CRPS ?
A key problem with RSD/CRPS is that it isn't well known.
Reader Feedback
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Reply
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Sybil
Oct 27, 2011 @ 6:56 am | delete
- RSD has altered my life forever. At the point of diagnosis I began the grief process just as I would if someone I loved died because for me a part of me died. My hopes, dreams and way of life was forever changed. The sad reality is that this disease affected my children too. It robbed my children of their mother. I am not the same person. I didn't know it that day. I was in denial and then I became sad until it turned into anger. Finally my pain that quickly spread has far oversadowed my emotions and I feel that I'm struggling each day as a single mom just to hang on to daily activities with no time left to feel anything anymore. There is no victim in me. I'm worried about the survivor in me. The sleeplessness coupled with unbelievable full body pain drives a person crazy. When I hear well meaning people advise me to simply dig a little deeper or pray for my solace I want to scream at the top of my lungs. I have done all of the right things. I have a spiritual connection. I paid my taxes and ate my vegetables. Here I am alone with two teenagers, and no cushion. I am afraid not just for myself and children, but for the others who may get missed. There is so much ignorance about this disease. I don't feel lucky and yet I got a diagnosis. I have fabulous doctors who believe me. They know my pain is real. It could be worse. Many blessings.
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Gina Guerre
Apr 23, 2010 @ 5:42 pm | delete
- I have had CRPS for 9 years. It started in my left hand and wrist after a motorcycle accident, and has spread thru the years. It has done way more damage to me, than what is described in the survey results. I won't go into too much detail, other than to say, "It has wreaked havoc on my immune system, and organs the most." CRPS/RSD has an effect on ones entire family... Spouse/partner, children, parents, etc. There are the friends one loses because you cannot go do the things you used to do. Things you want to do again but cannot, because your life has been stripped from you in an instant. It is ruled by pain, medication, weather and many other factors. Many marriages end in divorce. I am lucky mine has not. Living with CRPS is a life of struggle like no other. They say that people with this disease cannot die from it, but I have seen and heard otherwise. There is no cure. Still, I have faith that the funds to research CRPS more intensely to find the cause, and a cure, will come sooner than later. It is spreading to young children more often (which was unheard of before), and more women and men are also slowly, being diagnosed with it. ER and private practice Dr.'s and nurses, need to be aware of of CRPS, so they can better treat those who have it. Or refer them to the correct Dr.'s. We need more of them to specialize it this area. Unfortunately, many Pain Management Dr.'s, internists, neurologists and PT therapist, know nothing about CRPS, and treat us improperly, causing more severe pain. Some think we are "drug seekers" We are not. We are only trying to survive day to day. They don't call CRPS the "Suicide Disease" for nothing. This is indeed sad, but true. My best to those who suffer with CRPS. I wish for you tolerable pain levels, supportive family, friends and caretakers.
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Lisa Mintz
Jan 6, 2010 @ 2:11 pm | delete
- Yes, I know about it. I live with Chronic full body RSD/CRPS everyday of my life. After only re-injuring a carpal tunnel problem that had healed.It is such a shame though that our Medical community is not educated about such a severe life altering snydrome/disease. Those of us with RSD/CRPS fight everyday of our painful lives for low pain and diagnosis. We suffer with a very real condition that is too often dismissed by doctors, in all fields, as being all in our heads. After only two years it is all in my head,face, arms, hands, gyn/uro tract, both legs and feet and told today my immune system is in jeopardy. So do you see how important it is for Drs. to know about RSD/CRPS before they start practicing? There may have been help for me. But I will never know now. God Bless You for asking. I wonder though, How many answered they knew, because they already have it? Just out of curiosity?
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Reply
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Lisa Mintz
Jan 6, 2010 @ 2:11 pm | delete
- Yes, I know about it. I live with Chronic full body RSD/CRPS everyday of my life. After only re-injuring a carpal tunnel problem that had healed.It is such a shame though that our Medical community is not educated about such a severe life altering snydrome/disease. Those of us with RSD/CRPS fight everyday of our painful lives for low pain and diagnosis. We suffer with a very real condition that is too often dismissed by doctors, in all fields, as being all in our heads. After only two years it is all in my head,face, arms, hands, gyn/uro tract, both legs and feet and told today my immune system is in jeopardy. So do you see how important it is for Drs. to know about RSD/CRPS before they start practicing? There may have been help for me. But I will never know now. God Bless You for asking. I wonder though, How many answered they knew, because they already have it? Just out of curiosity?
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WLS4Health
Jan 22, 2009 @ 8:28 am | delete
- Very informative! I would have had no idea RSD existed if I hadn't found your lens. Great info.
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