Raynauds Phenomenon

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Raynauds Phenomenon
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    I know, I know… but here it is. Consider it.

    We are two friends both with chronic and mental illness, who decided we wanted to bring to the forefront, and open up real conversations about, how we are coping with our diagnosises. We use humor, personal experiences and scientific studies with what can potentially help; has helped; and what we are willing to try to stay sane in the midst of what we’ve been saddled with by life.
    We’re also doing this to try to end stigma, raise awareness as well as discourage toxic positivity and ableism to take more root in society.

    We would love your support and also your input on what coping skills you all use- join the conversation! Follow us on instagram @ creative.copes and on your favorite listening platform and comment away! The more we talk, the more mainstream it will become.
    #keeptalking #jointheconversation #jointhefight #RealTalk #EndTheStigma #Raiseawareness #MentalHealth #physicalhealth #Ableism #Toxicpositivity #copingstrategies #CopingTips #beyourownadvocate #ChronicIllness #ChronicPain #ChronicMigraines #ChronicVestibularMigraine #Fibromyalgia #GeneralizedAnxietyDisorder #SocialAnxiety #Agoraphobia #Dysautonomia #CrohnsDisease #Endometriosis #RaynaudsPhenomenon #MyalgicEncephalomyelitis #ChronicFatigue #OccipitalNeuralgia #wecandothis #LetsDoThis

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    So what’s wrong with me?

    I’m asked that question often because I look younger for my age and I’m very active and functional. How did everything develop? I’ve always had cold hands and toes since I was about 5 years old. I never worried about it much honestly until I found out it was #RaynaudsPhenomenon in 2017. This is the same year I was diagnosed with #Fibromyalgia & #MajorDepressiveDisorder .

    What it feels like? For me, it feels like the soreness you feel after a workout and never recovering. Now, anything thing I do tell people is that I got Mono back in 2010. First time I ever got severely sick to where I even lost weight. Now it’s 2023, I have an overactive immune system and a autoimmune that they can’t find. However, they were about to do a DNA(DS) AB, High Avidity blood test because my ANA is normal and my other blood test are normal. They suspect #Lupus but they do know I have #ChronicFatigue .

    *My spoons are usually 1-2 tasks that’s would last 4-5 hours until I’m fatigued*

    …and I’m also diagnosed with #CarpalTunnelSyndrome .

    On top of all that, I have other undiagnosed issues including #TemporomandibularJointDisorders in my jaw (nevous of dentist) and #GeneralizedAnxietyDisorder (functional and social)

    Another thing, I have hypermobility in some area, such as my fingers & my knees. I was also told I had a deformity in my neck to where my neck is straighter compared to other people (I never knew what that mean). This was done after an MRI.

    Two reasons I was given that all these symptoms came in my late 20’s and now in my 30’s. I was told it all started when I got sick in 2010 making my immune system go haywire (definitely possible) but also genetics (possible if it’s from my mother). That would be something I’m unable to figure out. Again, I look fine and very functional but I have an equal amount of bad days.

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    Symptoms Overload

    Recently January 12 to be exact this year I was taken off 2.5mg dosage of Prednisone. I’ve been on a combination of 5mg and 2.5mg sense December 2021. I ran out and doctor took me off it in full .

    I have had nothing but bad side effects from being taken off a steroid that I have been on for 1+. As of recent is a full blown rash like symptom covering my face.

    Anyone else ? #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon

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    I was wondering how you all feel about new year and celebrating it?
    I find it really gets me down and with the nature of chronic illness, I imagine I'm not alone. It's hard to look forward to the time you have ahead, when you're having a difficult experience and nothing seems to change. I was hoping there may be some advice for me about reframing things or if anyone would like to vent about their own experience, I'd welcome that too💜

    #ChronicPain #Fibromyalgia #Fatigue #DiabetesType1 #LinearScleroderma #Scleroderma #HypothyroidismUnderactiveThyroidDisease #RaynaudsPhenomenon #Anxiety #Depression #MightyTogether

    18 reactions 11 comments
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    Raynaud's Disease

    I had a Raynuad's episode yesterday for the 2nd time yesterday. It was painful and lasted about 15-20 min.

    Can any Raynaud's sufferers share their experiences? What helps or hurts? #RaynaudsDisease #RaynaudsPhenomenon #MyalgicEncephalomyelitis

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    I am so exhausted from being exhausted 🥱

    Does anyone else ever get this way. I go to bed exhausted (mind you that’s me barely making it to 9pm every night) wake up by 7am (out the door by 7:30am to get to work) . I wake up exhausted. Drink caffeine to try and help the sluggishness and cut myself off way before noon.

    I’m just so tired of feel exhausted and drained 24/7. It makes it hard to spend quality time with my family and significant other.

    Any recommendations?!

    #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #Insomnia #Depression #Anxiety

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    Why I know I am Dying

    People have been asking exactly what is going on medically and how I know I am dying… so here goes a bit of an explanation. I am extremely complex, as such no one can say exactly what I will die of or when. Unfortunately, it’s not like cancer where there are many cases that can be drawn from to predict outcomes more easily. I don’t list all my medical conditions, hence the …, but if you want to know more I am an open book.

    Factor 1, endocrine: most of my endocrine system is shut down; I produce few hormones. I don’t make the key ones like Cortisol, testosterone, ACTH, estrogen, etc., this means my body cannot regulate itself. (When an average person experiences physical or emotional stress their body produces more cortisol, mine cannot do this and if cortisol is not produced the body goes in to shut down and eventually coma and death). This puts me at high risk for dying from adrenal crisis. This is most likely what I will pass from.

    Factor 2, genetic: I also have genetic conditions (mitochondrial, Ehler’s Danlos, Carnatine deficiency…). Your mitochondria are the building blocks, so I have bad building blocks to start with. Ehler’s Danlos effects your connective tissue, so basically I am built with bad glue that no longer holds me together and carnitine is your energy, so my body is losing fuel.

    Factor 3: autoimmune conditions (Premature ovarian insufficiency, Raynauds, celiac…). My premature ovarian insufficiency caused my endocrine system to start shutting down and conditions like Raynaud’s and Celiac disease put extra stress on my body causing other conditions to worsen.

    Factor 4: medications; I take over 100 mg of steroids a day and those have caused my liver to stop functioning properly; I have steroid induced myopathy (my muscles are wasting away), they caused my Ehlers Danlos to speed up, which has caused my tendons/joints to break down faster, they have also caused bone issues so I fracture very easily. There are also several other side effects from other medication that I have taken, such as gastrointestinal issues that put a great deal of stress on my body.

    Factor 5: other medical conditions. My bleeding disorder makes it so I bruise/bleed very easily and puts me at risk for internal bleeding. Add to that my Asthma, Mast Cell Activation Disorder (masts cell allergic reactions daily, risk of anaphylaxis…), osteoarthritis (increased pain levels and decreased physical function) and postural orthostatic tachycardia syndrome (This is a condition that impacts my entire body; from digestion, to breathing, to heart rate, to temperature regulation; it is a dysregulation of the entire orthostatic system).

    My body is a spicy disaster. I have been holding myself together through sheer willpower and stubbornness basically. Lol. Those of you that know me, know that for the past almost 5 years, since my diagnosis I have been pushing very hard to find a unifying diagnosis, basically this is a diagnosis that can tie everything together. As far as we can tell, this doesn’t exist. I was just dealt a shitty hand of multiple medical issues that don’t play nicely together. I have managed my conditions by being my own advocate, doing extensive research and setting my life up to be as optimal as possible. Using exercise, diet and any other tool I could to find the optimal functioning for my body. Unfortunately, my body just reached a point where no matter how much medication, good food, daily exercise and positive attitude I have it is just tired and breaking down. Some people have asked how I know I am dying if doctors can’t predict an exact cause or date. First, I must say that gaslighting, questioning what someone knows about their own body and medical conditions is not cool, even when it comes from a place of care and concern. Second, I am a very well educated person who understands medical research very well and uses empirical evidence like scans, bloodwork, X-rays, the visual signs such as twisted bones/bruising, etc. to make decisions and draw conclusions. I listen to my medical professionals and care team. I also draw off of those people in my personal support team and their observations (some of whom have medical training). I do not say I am dying lightly and it is not “giving up”, it is knowing I am at the end and instead of spending that time fighting the inevitable I choose to spend my time finding joy and peace. Life is always more good than bad and I am going to find my bliss to the very end! Much love.


    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsPhenomenon #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

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    How do you deal with your pain throughout the day when you realize you’ve been gritting your teeth, tensing up, or even holding your breath?

    I’ve noticed during the day when I’m at work that I find myself gritting my teeth due to my pain level. I takw my pain meds but sometimes it doesn’t seem to help. Do you have any tips?(I wear a night guard when I sleep.I don’t know if they make something like that for daytime use.) #RheumatoidArthritis #ComplexRegionalPainSyndrome #Fibromyalgia #Lupus #chronicmigraine #RaynaudsPhenomenon

    14 reactions 19 comments

    Didn’t even realize…

    Didn’t even realize … I couldn’t do it anymore without severe consequences.

    Needless to say I am still struggling to find that balance for myself and what I can handle, be ehh after vs pushing myself farther than I should have because my brain doesn’t understand my body just can’t. Now am severely am / going to be paying the issues over the next week+.

    Went on my first really long car ride OH to SC and back over a span of 4 days. To pick up my daughter from Bootcamp Graduation and Celebrate her becoming a Marine.

    I didn’t have to drive to much which I have kinda figured out I really start having issues after driving an hour and am absolutely drained to nothing after. Every little movement in this car ride just sends shooting pain down my nerves.

    So needless to say I have been gritting my teeth sense Wednesday. So I can actually have a smile on my face and show how proud I am of her and to celebrate with my family.

    So yep…. It’s been a long never ending day the last 4 days and have not slept. On the positive I will be home in 30 minutes and hopefully relax my body.

    #MixedConnectiveTissueDiseaseMCTD #Anxiety #Depression #RaynaudsDisease #RaynaudsPhenomenon #ChronicMigraines #Nervedamage #AutoimmuneAutonomicNeuropathy


    Just One of Those Days

    Have you ever had a day where you just want to throw your hands in the air and just say, “I’m done!” However, you know throwing your arms in the air aren’t possible in the first place because you hurt so very much. Also, you have way too many responsibilities as a parent and spouse to do just throw in the towel. I suffer from Rheumtoid Arthritis, Fibromyalgia, CRPS, Scoliosis, and Lupus and am currently in a massive flare. I’m exhausted and in pain, but I can’t rest or get comfortable. I work full time as a Special Education Teacher and have to walk from one side of the building to the other all day long and use every bit of my possible energy at work so when I get home I have no spoons/energy left when I get home. It’s also my daughter’s senior year in high school and she’s currently in the middle of softball with playoffs about to start.
    I am not scheduled for an infusion until November and haven’t had one in forever due to going into liver failure and being diagnosed with Autoimmune Hepatitis over the summer. I swannee my immune system is truly trying to kill me! I’m so ready to feel better but don’t when that will be. Today is just one of those days when I feel like and realize this is possibly what the remainder of my life and body is going to feel like. Yuck! The bright spots in all of this is I have an amazing support system in my family including my husband, parents, in-laws, children, and friends. I also have my faith in Jesus and that He is watching over me and helping me through it all.
    I apologize for my rambling. I just know only people who experience this truly understand the frustration and sadness of living in chronic pain.
    Thank you for reading this far.
    #ChronicPain #RheumatoidArthritis #ComplexRegionalPainSyndrome #Fibromyalgia #chronicmigraine #RaynaudsPhenomenon #AutoimmuneDisease #AutoimmuneHepatitis #Spoonie #exhausted