Raynauds Phenomenon

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Raynauds Phenomenon
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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.

    Chris

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

    Question

    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

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    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

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    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

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    In a really bad head space right now.

    Does anyone else ever ask, what karma am I repaying that I deserve this. #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RaynaudsDisease #Anxiety #AnxietyAttack #Depression #Migraines #supportneeded

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    Does anyone know what to expect after starting IVIg transfusions? I start them in two weeks.
    Two days back to back for 4.5 hours per day for procedure. Once a month.

    #FreakingOut #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RaynaudsDisease #Migraines #Anxiety #Depression #Arthritis

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    Went to the doctors on Friday needless to say his nickname “bad news bear doctor” still stands. I always joke to him he never gives me goodnews hense the nickname, he liked it too.

    Back to my point. I have been now told I need to start Intravenous Immunoglobulin Therapy (IVIg) as well as start seeing a Neurologist that specializes in autonomic neuropathy . On top of seeing if my body can handle the medication I need without bad side effects. Some how i always seem to get the bad side effects.

    I’ve never had to expierence a IVIg. Has anyone else ? Any pointers or insight would be greatly appreciated.

    A bit on edge probably more nerves than anything.

    #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RheumatoidArthritis #Anxiety #Depression

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    I know I should have seen it coming….I have now had to use (cane) this multiple days in a row all day. This is proceeding (getting lectured by my doctor) because I am bull headed and refused to use it when I know I should have. Basically probably doing more damage than good and I need to stop getting in my head. I don’t know if it’s just me or if others have this same challenge or are still going through it. I my whole life had to grow up quicker, child hood trauma survivor (with some permanent damage) and the one looked to when it came to needing strength. I am known as the strong one. I don’t know who finds it more challenging the people around me or me. I will never allow myself to accept that I am weak(er). I feel like if I accept it that means my fight is gone. I am working on the getting out of my head. Not letting peoples looks bother me. Yes I am getting looks both publicly and in my work environment. Probably my work environment is due to they had seen me need one and then bam i whip it out of my bag during a big fatigue episode. Did I mention I found a cane that folds down to the size of my forearm. Love that feature and yes I did buy a wolf head handle. Little uncomfortable at first till you find the sweet spot for holding it. I just needed to keep a part of me something I love and have a story behind the wolf that keeps me positive, be dazzle to it. Public probably because I look like I’m 17 and I am 30 and I look normal (what is normal ? Come on people). I freak out mentally and just go down the rabbit hole with negativity about the cane and how it makes me look “weak(er)”. I will say I did have someone tell me “ f-$@! What people think. Own that cane make it your b&)$! And walk like your going down the run way with your head held high. Knowing your the hottest one there.” Which got me laughing and honestly I’m not sure they realized how much that impacted me in a positive way. Yet here we are being human and all. Having a flaw and right back in my head. Refused to take the cane into the gas station when I went to pay not realizing there would be a line, one person in front of me doing there lottery guessing game thing. Legs just went like jello and down I went. Absolutely mortified at this point. Catch myself half a$$ed and try to play it off. Hurried up and payed and basically crawled my way across the wall out of there. Realizing I probably will never go to that gas station again which really sucks because it’s .5 miles away from my house. Am I alone ? Am I crazy ? #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RaynaudsDisease #Anxiety #AnxietyAttack #Depression #ChronicDepression #Stepmom #ObsessiveCompulsiveDisorder #ChildhoodTraumaSurvivors