Peripheral Neuropathy

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    Pics to Prove It!

    One of my favorite parts of erythromelalgia is describing my illness and showing people pictures of what my flares look like.

    Me: "Electric charged acid in a campfire flowing through my veins."

    Friend: "Really?"

    Me: Yes. Here are the pics. Do you like the several shades of red and how the purple color gradient in my toes changes from violet to indigo to eggplant?"

    Most people are very compassionate, but they're still surprised at the severity of it all. Because who wouldn't be?

    How about you? What do people find surprising about your illness and all you deal with?

    #ChronicIllness #ChronicPain #Erythromelalgia #Disability #Anxiety #ChronicFatigue #RareDisease #MentalHealth #MightyTogether #ComplexRegionalPainSyndrome #CheerMeOn #MyalgicEncephalomyelitis #PeripheralNeuropathy #SmallFiberNeuropathy

    3 reactions
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    For YOU: A Word of Encouragement

    Here's a word of encouragement to you. Yes, YOU! You matter, your concerns matter, your pain matters. It's true that you often get overlooked or are misunderstood. Sometimes you get blamed. You may even feel guilty for feeling like you make things hard for people or "not doing enough." After a while, that gets to be an extra burden to carry. As hard as it all is -- and "hard" barely begins to describe it. More like impossible. I know because it's My experience too.

    But here's the thing. You're doing more than your best and you're so much stronger than anyone will even know. You accomplish more by getting out of bed than some people accomplish all day. You're here, and you're doing the impossible. Maybe you need someone to tell you they care, they see you, they understand. Maybe you wonder if anyone cares. Take this as that sign. You matter. I care, and I believe in you. Thank you for being you. Much Love.

    #ChronicPain #ChronicIllness #MentalHealth #RareDisease #Depression #Anxiety #FamilyAndFriends #encouragement #Erythromelalgia #CheerMeOn #ComplexRegionalPainSyndrome #Insomnia #PTSD #DistractMe #Fibromyalgia #PeripheralNeuropathy #RareDisease #Disability

    40 reactions 13 comments
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    Having people that listen and respect us is so helpful and encouraging, so much better than having people who judge, or try to fix us!

    I am blessed to have people in my life that are there for me, sometimes just listening and asking what they can do for me, telling me that I’m not alone, letting me know they’ll be there for me, and they love me … but what can really help us feel better about ourselves is when they just say they’re proud of us. Wonderful people in our lives can regularly remind us about everything we’re going through and how amazingly well we are handling ourselves. They can acknowledge us for what we ARE doing even when we can only see and judge ourselves for the things we’re NOT doing. Sometimes they can be there just to listen to us, sometimes they can help us get our minds off all we’re going through by lightening up the conversation and not allow us to get caught in a loop of feeling sorry for ourselves.

    But we definitely can’t do this alone, things can appear insurmountable or overwhelming but if we’re lucky we have people who believe in us and are there for us when we just need them to listen and let us get our fears out in the open and talk about our pain. People can help us if they just say they feel for us and wish they could make us feel better. What I don’t think they realize is that by simply being there to walk by our side they ARE making us feel better!

    You can expand your network of support by getting up the courage and then tell people that are close to you (that don’t already know) what you are dealing with, sharing what is really happening and what you are going through and then tell them how they can help. I have found most people want to help and if they decline I try not to take it personally. It’s worth the risk to get crucial support

    #ChronicPain #ChronicIllness #PeripheralNeuropathy #Migraine #Headache #COVID19 #Disability #MentalHealth #Anxiety #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder BipolarDepression #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #Shingles #Bronchitis #Pneumonia #PTSD #Selflove #Selfcare #strength #MightyMinute #IfYouFeelHopeless #Hope #MentalHealthHero #MightyTogether

    109 reactions 21 comments
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    What are you grateful for? What can you be thankful for to keep you holding on during tough times?

    Please let's all share our blessings in life that we are thankful for. In
    dark and trying times (like right now), I try to always remember the things I am grateful for and remind myself that without any/all of them my life could be much less manageable

    I am grateful for:

    -Being alive!
    -Being able to walk, even if I need mobility devices
    -Having a roof over my head
    -Having food on the table
    -Having great doctors, nurses, my therapist, my shrink, numerous specialists and my clinic - and having the insurance to pay for them - as well as insurance to pay for my many medications!
    -Having a strong network of family and friends and always being able to know that I am loved and supported ...and
    -Having my relative health - things could always be worse!

    What are you thankful for?

    Maybe thank someone who you are grateful for and let them know how helpful they are and how much it means to you to have their support. Sometimes people don’t know how much they impact other’s lives!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #Stigma #BipolarDepression
    #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #MyalgicEncephalomyelitis #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deaf #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #TheMighty #MightyMinute #MightyTogether #DistractMe #MightyTogether #mentalhealthwarrior #RareDisease #ChronicFatigue

    23 reactions 8 comments
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    Erythromelalgia Article

    I'm sharing this again. It's a new article publishedby Time magazine from a friend of mine about #Erythromelalgia . It's getting a lot of response by people who have the illness but have had no idea anyone else has it. You might like it too. #ChronicIllness #ChronicPain #RareDisease #PeripheralNeuropathy time.com/6257668/man-on-fire-syndrome-erythromelalgia

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    Surviving is just part of the journey…making the most of the time it gives you and realizing there can be good times despite the struggles is a gift!

    It’s not all about survival, there is a lot of living to do along the way. Although at times I feel like I am just treating one ailment after another, all day every day (which is true right now) I’ve decided why take all the time and energy it takes to survive everything unless I don’t enjoy how the time given to me by surviving is ripe for good times too.

    Recently I have mostly been homebound except to go to health appointments… doctors, PT & OT, clinics, therapy etc. and then only with a walker and the benefit of handicapped parking spots. But I try to continue to celebrate the gifts I have in life, be thankful for the blessings I have that make life just a little more bearable and remind myself of what I’ve been through, how I’ve survived and what I’ve learned from these experiences. If I consider all this, then I must be a very wise man 😉 I may have dropped out of college but I have a Masters degree from the School of Hard Knocks … the diploma is not needed, I know I have accomplished it and need no reminder…I’m still alive after all!

    Tough times have given me the chance to tap into my inner strength and I’ve also grown along the way. I don’t have to wait to celebrate the good times when I am experiencing some right now despite what I’m going through!

    Thank you all for the love, support, thoughts and prayers, I certainly couldn’t have done this alone!

    #Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #Stigma #ObsessiveCompulsiveDisorder #RareDisease #AspergersSyndrome #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigue #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Happiness #Selflove #Selfcare #MightyMinute #MentalHealthHero
    #TheMighty #InsideTheMighty #MightyTogether #DistractMe

    37 reactions 8 comments
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    Struggling

    I've been struggling since I was hit with a pain spike in my legs last night. This involves an electric gripping sensation, shaking, spasms. It lasted all night, I woke up with it, and it hasn't gone away yet. It's been over 14 hours so far, plus now I have a flare in both feet and ears. I've taken all my meds and meditated. This is very difficult, and I'm struggling. #Erythromelalgia #SmallFiberNeuropathy #PeripheralNeuropathy #ChronicPain

    13 reactions 7 comments
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    I'm new here!

    Hi, my name is billp. I'm here because I've been having a hard time trying to find friends online, especially women interested in dating, because once they discover I'm mildly disabled from peripheral neuropathy and chronic pain managed with pain meds and have been diagnosed with terminal congestive/systolic heart failure with only a couple years to live without a transplant, they don't want anything to do with me.

    #MightyTogether #CongenitalHeartDefect /Disease#HeartDisease #Cardiomyopathy

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    I am new here!

    My name is Samuel. I have been diagnosed with 20 different illnesses and/or diseases over the years. The last one, early stages of Alzheimer’s. I am emotionally drained most days. It feels like my memory is being erased, besides having problems communicating and process thoughts, emotions, and ideas, etc. The other issues worsen the situation as these still need to be managed, but they have a severe impact on my mobility, comfort, and other human basic needs. Anyway, thank you for listening.

    #ChronicMigraines

    #DiabetesType2

    #PeripheralNeuropathy

    #alzheimer

    #MenieresDisease

    #Tinnitus

    #BackPain

    #Osteoarthritis

    #CardiovascularDisease

    #SleepApnea

    #Hypertension

    #SpinalStenosis

    #DegenerativeDiscDisease

    3 reactions 2 comments
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    I’m new here!

    Hi, my name is ladywissues. I'm here because I need support from others who have peripheral neuropathy and depression, rare diseases and chronic pain.

    #MightyTogether #Depression

    10 reactions 5 comments