Complex Regional Pain Syndrome

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    keepgoing

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    #Melanoma

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    FibromyalgiaAwarenessDay

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    Type1Diabetes

    #Dyscalculia

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    ptsdtrauma

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    EDSers

    IdiopathicPulmonaryFibrosis

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    #Schizencephaly

    selfcaresunday

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    #Vitiligo

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    Bipolar

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    MultipleSystemAtrophy

    #Hemophilia

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    SpecialEducators

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    ObsessiveCompulsiveDisorder

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    DeepVeinThrombosis

    DysautonomiaAwarenessMonth

    Endo

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    MultipleSystemAtrophyWithOrthostaticHypotension

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    Fatigue

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    TheMightyTakeaway

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    add

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    DemyelinatingNeuropathies

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    #Preeclampsia

    TuberousSclerosisComplex

    #Achalasia

    CongenitalAdrenalHyperplasia

    #Hyperacusis

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    FibromyalgiaSucks

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    FibrousDysplasia

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    LifeBeyondLupus

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    #Photophobia

    PsychologicalAbuse

    borderline

    #Albinism

    EsophagealCancer

    #Meningitis

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    #Syncope

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    #Lipedema

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    SuicidePreventionMonth

    mightymusiccorner

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    #Myositis

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    bpddating

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    InfantileScoliosis

    MastCellActivationSyndrome

    Recovery

    #Syringohydromyelia

    anorexiarecovery

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    UterineCancer

    potsisreal

    livingwithocd

    MySymptoms

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    #Encephalitis

    Loneliness

    #Neuroblastoma

    Selflove

    SuddenInfantDeathSyndrome

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    Selfesteem

    AfterSuicideLoss

    AutoimmuneAngioedema

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    #Hypogammaglobulinemia

    NormalPressureHydrocephalus

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    TypeIIIampIIIAutoimmunePolyglandularSyndromes

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    SickleCellDisease

    potswarrior

    CerebralPalsyAwarenessMonth

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    Neuropathy

    OCDAwarenessWeek

    ThyroidNodules

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    EatingIssues

    HeadAndNeckCancer

    HypertrophicCardiomyopathy

    #Microcephaly

    PMDD

    SexualViolenceSurvivors

    #Encephalopathy

    FibromuscularDysplasia

    AutoimmuneDiseases

    AxonalampNeuronalNeuropathies

    BipolarDiorder

    MentalIllness

    ChronicFatigueSymdrome

    lupusrash

    BrainFog

    Abuse

    #Anoxia

    NeuroendocrineTumor

    PeriodicFeverAphthousStomatitisPharyngitisCervicalAdenitisPFAPA

    UterineFibroids

    Alcoholism

    Alpha1AntitrypsinDeficiency

    Fibro

    #Hemochromatosis

    HighFunctioningAnxiety

    LennoxGastautSyndrome

    MeningitisAndEncephalitis

    PhelanMcDermidSyndrome22q13DeletionSyndrome

    ThisIsDownSyndrome

    CentralSensitizationSyndrome

    #Nystagmus

    RelationshipOCD

    bipolaranxietyadhd

    BipolarIIDisorder

    #Craniosynostosis

    TreacherCollinsSyndromeTCS

    LichenSclerosus

    PortWineStainBirthmark

    TarlovCysts

    TesticularCancer

    VascularEhlersdanlosSyndrome

    BenignParoxysmalPositionalVertigo

    BipolarTypeI

    RaynaudsDisease

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    StomachCancer

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    AutismMeltdowns

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    borderlinepersobalitydisorder

    AplasticAnemia

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    Pain

    PathologicalDemandAvoidanceSyndrome

    PeriodicParalysis

    SuperiorMesentericArterySyndrome

    AnxietySongs

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    DissociativeEpisode

    FibroFog

    SexualAssaultAwarenessMonth

    #Uveitis

    lupusincolor

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    Narcoleptics

    PrimaryBiliaryCholangitis

    TheSecretLifeOfTheManicDepressive

    fibromyalgiafog

    #Dysphasia

    AnxietyDoesntKnockFirst

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    #Coma

    ColonicInertia

    DepressionAwarenessWeek

    HemolyticAnemia

    NoonanSyndrome

    Onychotillomania

    PostPolioSyndrome

    SmallBowelCancer

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    #Aneurysm

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    HighlysensitivePerson

    MethicillinResistantStaphylococcusAureusMRSA

    hashimotothyroiditis

    52smalltasks

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    EpidermolysisBullosa

    #Hemangioma

    UnknownPrimary

    #Achondroplasia

    #Arrhythmia

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    ChargeSyndrome

    ChronicFatigueImmuneDeficiencyDisorder

    NephroticSyndrome

    NeurofibromatosisType2

    OCDTest

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    AutismAdvocacy

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    CongenitalMyasthenia

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    HerpesZoster

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    RetinitisPigmentosa

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    CerebralAneurysms

    #Leukodystrophy

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    #Tracheomalacia

    VonWillebrandDisease

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    1p36DeletionSyndromeMonosomy1p36

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    DepressionNaps

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    FacialParalysis

    GriefQuotes

    HypokalemicPeriodicParalysis

    #Osteosarcoma

    PCOSAwarenessMonth

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    Stories2Connect

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    HirschsprungsDisease

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    ArthrogryposisMultiplexCongenita

    AutismDiagnosis

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    Bulimia

    CongenitalDiaphragmaticHernia

    DepressionSymptoms

    Dup15qSyndrome

    EBooks

    GastrointestinalStromalTumorGIST

    MultipleEndocrineNeoplasiaType2

    WegenersDisease

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    AutoimmuneHyperlipidemia

    BetaThalassemia

    CerebralPalsySwagger

    DBT

    DepressionSongs

    DiscoidLupus

    ExperimentalAllergicEncephalomyelitis

    HeartConditions

    #Hypopituitarism

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    DepressionAndBipolarSupportAlliance

    GrowthHormoneDeficiency

    #Laryngomalacia

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    AlexanderDisease

    HereditaryDiffuseGastricCancer

    HereditarySpasticParaplegia

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    NasalCavityAndParanasalSinusCancer

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    AicardiSyndrome

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    CervicalRadiculopathy

    GranulomatosisWithPolyangiitisGPA

    LambertEatonMyasthenicSyndrome

    LGBT

    ParentsOfChildrenWithSpecialNeeds

    PostherpeticNeuralgia

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    #Shingles

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    HighfunctioningDepression

    MastCellDisease

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    SuicidePreventionWeek

    anger

    mentalhealthmatters

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    AbusiveRelationship

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    HSAN1EHereditarySensoryAndAutonomicNeuropathyType1E

    SeptoopticDysplasia

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    AutismAcceptanceMonth

    AutoimmuneThrombocytopenicPurpuraATP

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    DID

    DownSyndromeAwarenessMonth

    #Neurotoxicity

    PalindromicRheumatism

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    AutoimmuneRetinopathy

    BipolarAffectiveDisorder

    DermatitisHerpetiformis

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    DownSyndromeDiagnosis

    GiantAxonalNeuropathy

    HereditaryInclusionBodyMyopathy

    LockedinSyndrome

    MyeloproliferativeNeoplasms

    NeurodegenerationWithBrainIronAccumulation

    ServiceDog

    SkeletalDysplasia

    SleepDisorders

    SexAndRelationships

    ExplainMyPain

    AttentiondeficitDisorder

    CentralCervicalCordSyndrome

    ChronicIllnessStigma

    Depersonalization

    PompeDisease

    PostpartumDepression

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    ChronicSpinePain

    #Diabulimia

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    ParentingWithMentalIllness

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    CentralNervousSystemTumors

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    AcuteDisseminatedEncephalomyelitis

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    SwallowingDisorders

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    Community Voices

    Let's talk about me

    My parents were both born in Scotland, who immigrated to the U.S. many years ago. I am first generation American, but the Scottish blood courses through my veins. I know you are thinking, “Does he have a kilt”. The answer is yes, and I do wear it on occasion…with boxers on underneath.
    I am an amateur struggling writer who feels that writing is not just for the readers, but for me too. It is cathartic for me to put my thoughts and feelings out there for others to read.
    I am also novice computer geek who enjoys actually going outdoors to play. I enjoy car camping, fishing, golfing, cooking and I do enjoy eating. I also love to travel, but I do not fly. I am a car trip kind of person, the open road is always calling out to me.
    This story I share with you begins on June 20, 2014. I was at work, and unfortunately, I rolled my foot causing an avulsion fracture of the left ankle.
    Several weeks later, my ankle had healed and I was sent to physical therapy to get up and running again. Something strange started happening while at PT, instead of the pain going away, it started getting worse, much worse. All of my therapists and doctors were stumped as to why this was happening. I was eventually sent to a doctor for acupuncture, my current team of doctors did not what else to do with me.
    If there are any ‘good’ parts of my story, the doctor I was sent to for acupuncture was one of them. He took one look at me and my foot and knew that acupuncture was not what going to fix my issues. He explained the possibilities of what was wrong with me. He got me off opioids and started me on Gabapentin, he knew if it was one of the conditions he was suspecting, it needed to be treated ASAP.
    I needed an array of tests to figure out what was going on with my foot. For the next few months, I was a guinea pig, getting poked, prodded, inspected and put into loud, strange machines.
    I was scared.
    Eventually, the tests pointed in the direction of a disease called #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome or CRPS.
    I was now terrified.
    We, unfortunately, were too late, it took hold of me, it would not let go. It may never let go, only time will tell.
    I was now a Complex Regional Pain Syndrome patient.
    Life, as I had known, was gone, I would now embark on a new journey ‘Life with CRPS’.
    I started to learn about a strange and complicated disease that I never knew existed. It became very clear to me, that this was not going to be easy for me, my wife, my family, my friends and even my doctors. There was going to be no easy fixes or answers. I had to dig in and do a lot of my own research because unfortunately there is not a lot known about . It is a that does not get a lot of attention in the media, nor are there enough consistent medical studies to get us closer to a cure. This actually goes all the way back before the American Civil War and all these years later it is still puzzling to most doctors.
    I did know this, is a rare devastating affecting fewer than 200,000 people each year. I was now one of the unlucky 200,000. I now had a that wants to hurt me, it beats me down, it stabs me like a knife in my foot and leg. It makes me fear my own body and the excruciating pain.
    Here we are almost 3 years later and I fight daily to keep my life as normal as possible. It is hard. I am not the same person that I used to be prior to the . My life has changed, my demeanor, moods, feelings and personality have been turned upside down and inside out. I have pain all the time, it does not stop. The symptoms of my are constantly changing, I never know what to expect. Along with the pain, I have muscle spasms, swelling, skin color and texture changes, abnormal nail and hair growth, muscle atrophy, speech impediments, memory loss, crying spells, mood swings…I have them all, they come and go at will.
    is relentless on the mind and body. I fight back. I am happy to be alive. This may be part of me, but it does not control me.
    This is what you and I NEED to do every day:
    Keep a positive attitude. Stay busy. Exercise the affected limb. Be honest with your doctors. Talk with your spouse, family, friends or a therapist. Do your own research. Take charge and be your own Chief Operating Officer, the CEO of this . Knowledge is power. Be proactive with your doctor, work with our doctors as a team to take on this . We are never alone.
    Understand that crying is okay sometimes as a release. Get to bed early. Have healthy eating habits. Have a sense of humor, sometimes laughing is the best medicine. Be stronger than the pain and remember to breathe through it. You CAN beat !
    We must have strong support helping us. I have a wonderful support system, you need one too. My wife, Christie, has been my savior. She is, to use a cliche, my rock. Without her, this blog would not be happening. She encourages me to get up, keep busy, go out and be active. Yet, at the same time, she allows me to be who I am on the not so good days. She lets me lounge around, or sleep in and cooks my dinner almost every night. She works a full-time job, but always has the time and energy to take care of me. I also have family members who are always happy to lend a hand. They are a huge part of my support team, as well as my wonderful and caring doctors. I consider myself a lucky sufferer. It could always be worse, so I count my blessings every day, as you should too. You need to get a support system, through family, friends or someone like me.
    Every day brings us closer to a cure. It will happen. This is a #RareDisease#RareDisease, that is not as well known and talked about as it should be. We need to get the word out, make people aware of this awful . If we all work together and network to spread the word about , the medical world will take notice and finally put a bigger effort into finding a cure.
    I write this blog to help myself and anyone that will listen. Together, we can help each other. So, do not be shy, reach out.
    I appreciate you visiting ‘Life with ‘, please share, like, comment or even tell me you hate it(I hope you don’t hate it), all opinions are valid.
    Make yourself at home and hopefully, my blog will help in some minor way.
    You are never alone!
    This is my story…

    Community Voices

    This Is Definitely Not RSD

    “This is definitely not CRPS/RSD” I couldn’t believe what I was hearing. This was our follow-up appointment to my podiatrist due to the residual pain from a cortisone injection getting dramatically worse over the previous weekend. The cortisone injection was the treatment to deal with pain that I was feeling in my left foot from an old injury while batting in a batting cage. Although it had mostly healed, the injury to the sesamoid bones of my left foot still caused me pain when I ran or walked too much. I had just returned from a trip to Europe, where we had done a great deal of sightseeing when we weren’t flying. All of this walking, including walking up and down the stairs to the intermediate level of the Eiffel Tower in Paris, had my left foot pretty angry. With an upcoming physical fitness test hanging over my head, which included a timed mile and a half run, I had gone back to the podiatrist who had helped me before.
    The cortisone injections before had done the trick to get me out of the walking boot, and soon back into wearing both of my flying boots. I figured another visit to the podiatrist, and possibly another cortisone injection, might be what would help me. When he gave me this shot, however, I had quite a bit more pain and I can remember a sickening feeling that something was very wrong. With this shot, I kept having pain afterward and it seemed to be getting worse. At one point when I had taken my kids to see a movie at the local theater, I suddenly had a pain on the top of my left foot that was so painful and so sharp that I took my shoe and sock off to check for a Brown Recluse spider or something like that. Before my foot only hurt when I put weight on it, but now it hurt all of the time. It not only hurt, but it had a strange kind of nerve pain that felt like nothing I’d ever experienced. I knew nerve pain from a ruptured C5/C6 disk and a resulting surgery that followed a less than perfect parachute landing fall while I was going through Air Force flight training. This was definitely nerve pain, but still it was different. This pain seemed like a varying combination of several types of pain, such as burning, stinging, crushing, and cold pain. I had started to get bee sting and electric shock sensations as well. The strangest thing, though, is that as time went by the pain seemed to be working its way back toward the heel of my foot and ankle. It was like the site of the injury was no longer a spot on the top of my foot just behind my third and fourth toes, but the entire foot itself.
    My mother had surgery on her right hand years before, and afterward she developed this strange condition called RSD (Reflex Sympathetic Dystrophy, also known as #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome) in which she was not only in a great deal of pain, but the skin on her wrist and forearm became darker. After asking her doctors about it, they luckily recognized it as RSD and she was able to get it treated right away. She, unlike many others who have dealt with this disease, was able to go into remission and has stayed there for years.
    Having talked with her enough times while she was going through this, though, I was not only only familiar with RSD but was familiar enough with some of its symptoms that we had done some research on it over the weekend while waiting to get back into the podiatrist. Once we were at the appointment, I told him everything I was feeling and described how it seemed to be moving into my ankle and lower leg. My wife and I asked him if he thought it could be RSD.
    He smiled at us. “This is definitely not RSD”. The smile remained, and even turned into a chuckle under his breath. He assured us that he had seen cases of RSD/CRPS and this was definitely not one of them. It was not the answer but the smirk and the chuckle that infuriated me. Little did I know, I had just entered into the community of thousands of people with invisible illnesses who fight this same battle every day.
    He prescribed pain medication for me, and an anti-inflammatory medication. When the pain continued to get worse and move further and further up my leg, consults were finally achieved for x-rays, MRI’s, EMG’s, and other various tests as well as a neurologist. It was only after months of bloodwork, tests, and various doctor and physical therapist visits that it was confirmed that I did indeed have RSD/. It has now been five years since this began, and I still live each day in pain. The RSD spread over the course of the first year and a half to all four limbs and my back and shoulders, and I was medically retired from the Air Force. I’ve tried many treatments, medications, specialists, and other various attempts to deal with this disease such as getting hyperbaric oxygen treatments.
    In my gut I knew, or at least had a strong suspicion, that what I was dealing with was RSD. There were several health professionals besides this podiatrist who tried to convince us that it was something else, and there have been several since who dispute the diagnosis. The important thing for the patient to remember, especially with respect to RSD, nobody knows what is going on with your pain better than you and if you don’t push for the care that you think you need, you probably won’t get it. With RSD, there is a limited time frame in order to get treatment before the chances of going into remission decrease dramatically. Even then remission happens for some and not for others, but not trusting your gut and advocating for what is best for you can easily transform a normal, healthy life into a life of #ChronicIllness#ChronicIllness.

    Community Voices

    Multiple pain disorder diagnoses

    I have had the diagnosis of #Fibromyalgia#Fibromyalgia for 15 years or so and I do not discuss it much with people because most do not understand the level of pain and the number of things that are affected by this disorder. I was finally off of all but one low dose pain med and exercising more and handling my pain better, when I was hit with another pain disorder. I was diagnosed last year with #TrigeminalNeuralgia#TrigeminalNeuralgia and that lasted two months or so and was the worst pain I had ever experienced. so needless to say, my pain scale changed after that because I now had a new 10 level of the worst pain I have felt. then in March of this year, I was on my daily walk and fell into a water sewage manhole cover and hurt my leg up to my thigh. I did not go to the ER or doctor because of the treatment that I get when they hear I am on pain meds. I am treated like a drug addict who is just looking for meds. although I did have large skin removed and bruising from knee to ankle. but after 5 to 6 weeks with no improvement, I did see my doctor as to why I still hurt so bad. it hurt to wear pants because the material brushing up against it would be so painful. shaving my legs, or putting lotion on, or my dogs brushing up against me would put me in tears. after a CT scan, an X-ray and two more trips to two more doctors, I was diagnosed with #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome. so now I have fibromyalgia and CRPS and I am frustrated and tired and overwhelmed a lot with the amount of pain I am in. I ran / walked the mini marathon in my town and now also have a problem with the foot of the affected leg because of the swelling traveling. I did not know that I would be more likely to get these kinds of new nerve diagnoses because I already had one diagnosis. my only wish is that not only other people, but especially doctors would really try to relate to their patients and understand that this is a real pain and that I may need real medicines to get up and go to work and walk 5 – 7 miles a day. I am not a drug seeker, I am not crazy, and I am still a human being. sometimes, I just need someone to remember that.

    Community Voices

    Parenting the Anxious child…as a person with chronic pain

    My youngest son has #Anxiety, #Depression#Depression, ASD and ADHD.  His dad has Secondary Progressive MS and has
    been extremely disabled for most of my son’s childhood.  So he is much more attached to me.  I also have anxiety and depression. Makes for
    quite a combo! About two years ago I was diagnosed with Complex Regional Pain Syndrome.  This caused a great deal
    of concern for both of my children as now BOTH of their parents were, in their
    words, “Broken.”  My eldest (12 at the
    time) has handled it pretty well.  But my
    youngest (9 at the time) …not so much.
    My #Anxiety about parenting my child with such high anxiety levels increased. His school returned.
    Turns out, he was afraid to leave me.
    He felt the need to protect me.
    To be home in case “something” happened.
    And as it is with , that fear was nebulous, not anything he could
    put words to. Then he began to request to sleep in my bed with me.  He was 10, and hadn’t slept with me for
    years.  But I could tell this was a
    strong need, he was very emotional about it.
    So I let him.  Then we talked
    about it and again, this was his talking.  His worry about mommy, and “something”
    happening.  He needed to be there with
    me, to take care of me. We talked about it.  I
    let him share his worries, and helped him to understand that I can take care of
    myself.  And that it is my job, as a mom,
    to take care of him, not the other way around.
    And it is my job to help him with his worries.  Soon he was able to go back to his bed, but
    this was after about 3 weeks of needing to be with me. Parenting your child when you have a #ChronicIllness#ChronicIllness isn’t
    easy.  There are many challenges to
    overcome along the way.  Parenting a
    child with special needs isn’t easy either.
    But this time has strengthened our bond, and increased his trust in
    me.  And that is a very special thing. So the other night, when he showed up at 2 am, (he’s now 11)
    and climbed under the covers… I just snuggled him close instead of sending him
    back to his own bed.

    Community Voices

    What goes on behind-the-scenes for volunteers?

    Volunteering is in my DNA. I have been volunteering since I was a young child going door-to-door for Multiple Dystrophy Association’s annual drive. After starting a family, I volunteered some at my children’s schools. And, in recent years, I volunteered as a newsletter editor for a health-related nonprofit organization. In my past life, I worked as a communications and constituent relations professional a public university, where I recruited volunteers to help me with dozens of projects. In my article themighty.com/2017/05/tips-for-evaluating-health-and-disabil...#Disability#Disabilitythemighty.com/2017/05/tips-for-evaluating-health-and-disabil... I discuss the importance of volunteering as a way to increase your financial investment in an organization. In this piece, I want to talk more about volunteerism and share some of the highs and lows that I have experienced, both as a volunteer and as a volunteer coordinator.
    As an individual dealing with a #ChronicPain#ChronicPain condition called #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome (CRPS), I look for ways to contribute both financially and as a volunteer. A few years ago, I became involved with a national organization representing the interests of individuals with CRPS. I was generally acquainted with the organization prior to taking on a volunteer role in their communications program and it was a thrill that I was able to use my unique skills and abilities to help shape aspects of their communications and fundraising efforts. This was exactly the opportunity I was looking for and I very much enjoyed the work, at least until the whole thing fell apart.
    The main project I worked on was to convert the organization’s print newsletter to an online publication. I worked for months to develop a pool of content contributors, build the online platform with the web designer, and to educate their constituents about the value of an online, over a print, publication. I put in over 100 hours of work, over many months to develop their communications program, and I will be the first to admit that I made mistakes along the way. Despite a few set-backs, we launched the first issue of their newsletter in fall 2013. On the morning of the big reveal, I expected to receive a thank you, but what I received instead was a very unkind email from an individual high up in the organization that was unhappy about how her story was edited.
    On background, you should know that most news sites use a standard editing style called Associated Press Stylebook, or AP style, and apply it universally to everything they publish. I’m sure that all of us remember writing term papers and having to get the bibliography page exactly so. In the communications world, using a consistent editorial style is critical, whether you are writing your doctoral thesis (American Psychological Association-APA style), a literary review (Modern Language Association-MLA style), or a report (The Chicago Manual of Style-Chicago style). And, once you pick a style, you stick with it throughout.
    I’ve done this work long enough to know that even the best editors can get a little heavy-handed sometimes, and even a volunteer editor is not immune to this phenomenon. So, when she previously objected to my suggested edits in an earlier version, I took the issue seriously; I went back to her original version and re-edited it for clarity and adherence to AP style only. The truth is that I only made what I considered to be essential edits and she and the executive director had ample time to review the final version before it went live.  I expressed my displeasure with the content and tone of her email in my response. “Disagreement with my editorial decisions is one thing, but this email crossed the line by questioning my integrity. I unequivocally deny your accusations that I replaced your original story with my own.  I am attaching a markup of the original document that notes all of the editorial changes that were made and provides detailed explanations of why the changes was [sic] necessary. The rest of your email is a thinly-veiled attempt to discredit me and undeserving of a response.” The fallout of her email was far-reaching and it ended my volunteer relationship with that organization.
    I remained discouraged and shut-off to the possibility of engaging with another organization for several years, until a friend recently introduced me to themighty.com When an organization no longer needs a volunteer’s contributions, the best thing to do is to simply thank the individual for their contributions and let them know that their services are no longer needed—this is just basic diplomacy. I am positive that I am not the only volunteer who has ever been disappointed with an organization that they once supported. Many of you probably have stories to tell too!
    Nonprofit organizations cannot run without volunteers because they are essential to the success of fundraising campaigns, constituent relations, and events, and their connections to the business world and to potential donors are invaluable assets. I know this from both sides of the table. It is the responsibility of the volunteer coordinator to ensure that their volunteers are equipped with the resources they need and empowered to make decisions to get the job done.
    Here are a few pro tips from behind-the-scenes to consider before your next volunteer endeavor:

    Ask the organization for a “job description” for the volunteer position. In order to avoid potential missteps, the organization should be able to provide you a short description of what it is you are volunteering to do. Without this description, you may encounter issues such as doing work that is redundant or stepping on someone’s toes because you are working outside of your scope. Your role as a volunteer is to support the organization’s mission in ways they have identified as needed.
    Identify one individual in the organization to whom you should consult and communicate. This should be a paid staff member, rather than another volunteer. Once the relationship is established, this individual will likely bring you into various teams of people working on different aspects of a project. When you are assigned to a particular project, clarify to whom you will consult when you have questions or need guidance. When difficult situations present themselves, and they will, you will know to whom you should share your thoughts on the issues.
    Contribute new ideas freely, but don’t expect them to be acted upon right away, or at all. Making changes in any organization, big or small, takes time. When an organization asks for volunteers to take on a given project, they should also provide you with instructions on how they want it done. When sharing new ideas with the organization, be aware that they have a process for responding to suggestions. In the end, they may not act on your advice, but your contributions should, nonetheless, be acknowledged and appreciated.
    Start slowly and ask a lot of questions along the way. Some volunteers, me included, tend to get in too deep, too fast. When an organization has a small number of paid staff, they are working on dozens of projects at one time. They may be clear on what needs to be done, but their volunteers may not have enough information to get it done. As a lifelong volunteer, I can’t think of a time when I took on too little or asked too many questions.
    Don’t take on a volunteer role that supplants, or replaces, a position previously held by paid staff. A surefire way to get burned is to take on a role as a volunteer that should be handled by a paid staff person. The organization I volunteered previously paid a consultant to handle the writing, editing, publishing, and delivery of their newsletter. I was willing to take on the work for free, but looking back on it I should never have put myself in this situation.

    My experiences with that organization have changed the way I see my role as volunteer in the future. There are many behind-the-scenes components to successfully managing a group of enthusiastic volunteers. First and foremost, volunteers need to feel respected for their philanthropy and appreciated for their contributions. If you are volunteering for an organization that does not respect and appreciate what you have to offer, please know there are plenty of other organizations that would benefit from your volunteer efforts. Use caution, but also passion, when deciding to invest your time and efforts in an organization.

    Community Voices

    When a hospital is more concerned about making money than helping it

    Six years ago I developed #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome and
    it took me two years to receive the diagnosis.
    Due to this being a #RareDisease#RareDisease, few doctors have ever heard of it and
    even fewer places treat it.  I was
    fortunate to find a wonderful team of doctors, nurses, and physical therapists
    at one of my local hospitals.  I was able
    to get the only successful treatment for me through that hospital which
    involved a five to ten day long hospital admission to receive an inpatient infusion.  This treatment is considered experimental yet
    highly successful and because of this, some insurance companies refuse to cover
    it. This treatment, and the whole pain management program, was
    considered a loss for the hospital.  They
    cost the hospital more money than they receive and although this hospital is nonprofit,
    their only concern was that they were losing money.  They were quick to shut the treatment down
    and severely narrow the pain management program.  They kicked out many patients with no warning
    and patients like myself were stuck in the middle trying to find a new doctor
    on short notice.  This whole situation
    has forced me to have to go to another state just to get the treatment I need. Many patients, including myself, are highly disappointed
    with the decision made by hospital administration.  Programs and treatments should not be decided
    on whether or not they are profitable, they should be made with the patient in
    mind.  The only question that should be
    asked is, “Will this program and treatment benefit the lives of those who need
    it.”  Hospital administration should not
    have a say in which treatment doctors will offer, that should be up to the
    doctor and the patient.  The patient is
    the one who has to live and deal with their disease every day and when the
    doctor is able to help, the administration should not put a stop to it.  These treatments and hospitals are sometimes a
    last resort for patients.  They have
    already gone through many failed appointments and treatments and all they want
    is hope.  The hospital administration has
    broken the trust of many patients and the patients they kicked out hae caused a
    loss of hope than can still be felt almost a year later.

    Community Voices

    What goes on behind the scenes for volunteers?

    Volunteering
    is in my DNA. I remember going door-to-door in my neighborhood with an empty
    coffee can to raise money for the Multiple Dystrophy Association’s annual
    drive. In graduate school, I was an ombudsman for nursing home residents. And,
    in recent years, I volunteered as a newsletter editor for a health-related
    nonprofit organization. In my past life, I worked as a communications and
    constituent relations professional a public university, where I recruited
    volunteers to help me with dozens of projects. In my article, https//themighty.com/2017/05/tips-for-evaluating-health-and-...#Disability#Disabilityhttps//themighty.com/2017/05/tips-for-evaluating-health-and-... I discuss the importance of
    volunteering as a way to increase your financial investment in an organization.
    In this piece, I want to talk more about volunteerism and share some of the
    highs and lows that I have experienced, both as a volunteer and as a volunteer
    coordinator. As
    an individual dealing with a #ChronicPain#ChronicPain condition called Complex Regional Pain Syndrome (CRPS), I am always looking for ways to contribute. A few years
    ago, I became involved with a national organization representing the interests
    of individuals with CRPS. I was generally acquainted with the organization
    prior to taking on a volunteer role in the organization’s communications
    program and it was a thrill that I was able to use my unique skills and
    abilities to help shape aspects of their communications and fundraising
    efforts. This was exactly the opportunity I was looking for and I very much
    enjoyed the work, at least until the whole thing fell apart.
    The
    main project I worked on was to convert the organization’s print newsletter to
    an online publication. I worked for months to develop a pool of content
    contributors, build the online platform with the web designer, and to educate
    their board of directors and members about the value of an online, over a
    print, publication. I put in over 100 hours of work, over many months to
    develop their communications program, and I will be the first to admit that I
    made mistakes along the way. There were a few set-backs, but after receiving
    approval from the executive director, we eventually launched the first issue of
    their newsletter in September 2013. On the morning of the big reveal, I was
    expecting to receive a thank you and direction on what they needed me to do
    next; what I received instead was a very unkind email from an individual high
    up in the organization that was unhappy about how her story was edited.
    On
    background, you should know that most news sites use a standard editing style
    called Associated Press Stylebook, or AP style, and apply it universally to
    everything they publish. I’m sure that all of us remember writing term papers
    and having to get the bibliography page exactly so. In the communications
    world, using a consistent editorial style is critical, whether you are writing
    your doctoral thesis (American Psychological Association-APA style), a literary
    review (Modern Language Association-MLA style), or a report (The Chicago Manual
    of Style-Chicago style). And, once you pick a style, you stick with it
    throughout.
    I’ve
    done this work long enough to know that even the best editors can get a little
    heavy-handed sometimes, and even a volunteer editor is not immune to this
    phenomenon. So, when the individual objected to my suggested edits in an
    earlier version, I took the issue seriously. I went back to her original
    version and re-edited it for clarity and adherence to AP style only. The primary goal of any
    editor is to ensure the writer’s voice and message remains intact during the
    process, especially when you are a volunteer and especially when you are
    working on a story by one of the organization’s top professional staff. No one
    feels successful when this happens, and no editor worth their salt would let
    something be published that does not reflects the author’s intent.
    In
    the space of one hour, I went from over-the-moon excited to broken and
    devastated. Words mean a lot to me—obviously, I was an editor—and the
    accusations she leveled against me were far beyond disagreement about editorial
    style. After dissolving in a puddle, I expressed my displeasure with the factual
    inaccuracies of her email. I wrote, “Disagreement with my editorial decisions
    is one thing, but this email crossed the line by questioning my integrity. I
    unequivocally deny your accusations that I replaced your original story with my
    own.  I am attaching a markup of the
    original document that notes all of the editorial changes that were made and
    provides detailed explanations of why the change was necessary. The rest of
    your email is a thinly-veiled attempt to discredit me and undeserving of a
    response.”
    The
    fallout of her email was far-reaching and it ended my volunteer relationship
    with that organization. It was both heartbreaking and infuriating. And, it was clear to
    me that there was no way forward. I remained discouraged and shut-off to the
    possibility of engaging with another organization for several years, until a
    friend recently introduced me to themighty.com. When an organization no longer
    needs a volunteer’s contributions, the best thing to do is to simply thank the
    individual for their contributions and let them know that their services are no
    longer needed—this is just basic diplomacy. I am positive that I am not the
    only volunteer who has ever been disappointed with an organization that they
    once supported. Many of you probably have stories to tell too. As
    I previously wrote, volunteers are essential to the success of nonprofit
    organizations. I know this from both sides of the table. It is the
    responsibility of the volunteer coordinator to ensure that their volunteers are
    equipped with the resources they need and empowered to make decisions to get
    the job done. Nonprofit organizations cannot run without volunteers because
    they are essential to the success of fundraising campaigns, constituent
    relations, and events. And, their connections to the business world and to
    potential donors are invaluable assets. Here
    are a few pro tips to consider before your next volunteer endeavor:
    Ask
    the organization for a “job description” for the volunteer position. In order
    to avoid potential missteps, the organization should be able to provide you a
    short description of what it is you are volunteering to do. Without this
    description, you may encounter issues such as doing work that is redundant or
    stepping on someone’s toes because you are working outside of your scope. Your
    role as a volunteer is to support the organization’s mission in ways they have
    identified as needed.
    Identify
    one individual in the organization to whom you should consult and communicate.
    This should be a paid staff member, rather than another volunteer. Once the
    relationship is established, this individual will likely bring you into various
    teams of people working on different aspects of a project. When you are
    assigned to a particular project, clarify to whom you will consult when you
    have questions or need guidance. When difficult situations present themselves,
    and they will, you will know to whom you should share your thoughts on the
    issues.
    Contribute
    new ideas freely, but don’t expect them to be acted upon right away, or at all.
    Making changes in any organization, big or small, takes time. When an
    organization asks for volunteers to take on a given project, they should also
    provide you with information on how they want it done. When sharing new ideas
    with the organization, be aware that they have a process for responding to
    suggestions. In the end, they may not act on your advice, but your
    contributions should, nonetheless, be acknowledged and appreciated.
    Start
    slowly and ask a lot of questions along the way. Some volunteers, me included,
    tend to get in too deep, too fast. When an organization has a small number of
    paid staff, they are working on dozens of projects at one time. They may be
    clear on what needs to be done, but their volunteers may not have enough
    information to get it done. As a lifelong volunteer, I can’t think of a time
    when I took on too little or asked too many questions.
    Don’t
    take on a volunteer role that supplants, or replaces, a position previously
    held by paid staff. A surefire way to get burned is to take on a role as a
    volunteer that should be handled by a paid staff person. The organization I
    volunteered previously paid a consultant to handle the writing, editing,
    publishing, and delivery of their newsletter. I was willing to take on the work
    for free, but looking back on it I should never have put myself in this
    situation.

    My
    experiences with that organization have changed the way I see my role as
    volunteer in the future. There are many behind-the-scenes components to
    successfully managing a group of enthusiastic volunteers. First and foremost,
    volunteers need to feel respected for their philanthropy and appreciated for
    their contributions. If you are volunteering for an organization that does not
    respect and appreciate what you have to offer, please know there are plenty of
    other organizations that would benefit from your volunteer efforts. Use
    caution, but also passion, when deciding to invest your time and efforts in an
    organization.

    Community Voices

    Life after pain

    I was a paramedic for 25 years I never thought I’d say those words I was a paramedic. I will was also a very active person I ran Rockland water skied snow skied was an avid diver and mostly rode dirt bikes. I pretty much did anything I turned my mind to that interested me and I loved it all. I guess you could say I loved motion. It was that love that eventually landed me in trouble. I crashed my dirtbike have what seem to be a minor hand fracture they refused to heal and in time was diagnosed with a rare nervous system disorder called #ComplexRegionalPainSyndrome#ComplexRegionalPainSyndrome CRPS/RSD Or commonly known as reflex sympathetic dystrophy. Seemingly in the day I went from 19 years old to that AJ was 42 and boy did it slam the brakes on for me. I thought it wouldn’t change me or that I wouldn’t allow it to. But eight years and 70 pounds later I no longer even resemble the self that I was in fact it has slowly stripped away everything that I used to be and in the process, trust me I spent a lot of time giving up and waiting to die. I think I still have days like that but there came a point in time about a year ago just a random day when I realized life was going to be very long if I was going to live it and happy and it was completely up to me to put my big girl panties on and take a giant step forward into my future as a new person. I have out of necessity reinvented myself and began to use my creative brain, which I had long forgotten, and which is great therapy to keep my hands flexible and in motion. I still try to ride my horse as it is also therapy and is probably the one time when I don’t feel pain. I think it is simply system overload for my brain because it is pure joy to every sense that I possess. Like many people with #ChronicPain#ChronicPain I struggle not to be motivated by guilt. Every aspect of my life feels like a failure if I allow myself to indulge in my losses and my inadequacies. I have the typical cluttered house last time with family chronic missed events time cut short during visits but I am extremely blessed to have a supportive husband Who figuratively holds my hand through everything even if he seldom can in truth hold my hand due to pain..which breaks my heart. I never saw it once in my life that my skin would become my enemy so my challenge from day today is to find ways to make it my friend. I literally use the scripture edict which states love line enemy do good to them which spitefully use you. I have simply turn this toward this illness which is doing its best to turn my life upside down. I have chosen to see how it is been the greatest blessing of my life. It is changed me in ways I don’t know that I could have otherwise. I have learned patients tolerance even greater empathy though I felt that I possess these qualities before hand when can always improve and boy I have a way it also brought me to my husband absolutely the greatest man in the world. I was married to an abusive man at the onset of this illness and in a roundabout way is allowed me to be set free and to escape him. Ultimately I met my husband who knew I had this disease and loved me anyway. So prior to the CR PS my life was fun tumultuous and strewn with frequent bouts of self pity. But after the CRPS my life has become meaningful and a path of greater personal. I find that I don’t feel sorry for myself as much and have more gratitude for moments when I don’t hurt as much, time spent with family is so precious to me, the beauty in the world around me that I don’t get to experience as often (I even have developed a great interest in photography because of this love).. I treasure dearly. It’s as if my senses are heightened. And I finally get how much the Lord loves me.
    My advice to anyone with chronic pain, for what it’s worth, would be, don’t forget what it is to feel good. Fight for it! Surround yourself with things that smell good, feel good, put your toes in the grass, step outside early in the morning, listen to good music, don’t shut friends out, ask them about their lives, do service in anyway you can. In the process you might learn to distract yourself from pain for any increment of time. Your life will become rich and your self-esteem will change and life will become meaningful again. And who knows you may find moments when you can distract yourself from pain sufficient to look forward to another day.