raynauds disease

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Changed the name of the group

Hello friends! You will notice I change the name of the group, even though the purpose of the group has not changed, I want to focus on the journey and not the destination.

This summer, I really want to continue my outdoor adventures and have as much time as I can with the people I love. What are your summer goals?

#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#RaynaudsDisease #MentalHealth
#ChronicIllness #Disability #DistractMe

43 reactions 22 comments


So after 2+ years I finally got the answers I've been waiting for. I already knew I had Idiopathic Intracranial Hypertension. Last week we just went over my Echo, Tilt Table, and Holter Monitor results and I was diagnosed with POTS and Raynaud's too. I'm just grateful and relieved for answers at this point. I'm on a med to raise my blood pressure to help prevent the fainting and I use a stationary bike 30 min a day to help build strength in my legs now. Baby steps but I'm getting somewhere. I'm more relieved than anything right now just to know what's wrong and finally be getting treatment for it, it's been a long bumpy road but I'm gonna be alright. #CheckInWithMe #PosturalOrthostaticTachycardiaSyndrome #IIH #IntracranialHypertension #RaynaudsPhenomenon #RaynaudsDisease #ChronicIllness #thankful #TheMighty #grateful

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My sister has primary Raynaud's and has just been prescribed Sertraline... #RaynaudsDisease #RaynaudsPhenomenon #Antidepressants #Sertraline

Is it safe to take Sertraline when you have Raynaud's? My sister has primary Raynaud's and has just been prescribed Sertraline, so I'm a little worried if it's going to have any adverse effects on her physical health.
Does anybody else with Raynaud's take Sertraline or psych meds in general? If so, how is it for you?
Thanks in advance.


Living in a home with so many invisible illnesses.

In my home we have a shopping list of invisible illnesses, and they are nearly impossible to manage all at once.
The Ringleader (me) suffers from some sort of metabolic disorder that is going undiagnosed, an ongoing epileptic disorder that is going undiagnosed, C-PTSD, PMDD, Social Anxiety, Bi-Polar, Borderline Personality Disorder, Asthma, Migraines, joint pain, bulging disc's in the back, Auditory Processing Disorder, and Executive Function Disorder
The Circus Bear (my husband) has C-PTSD, DID, Anxiety, undiagnosed arthritic joint pain in knees, right elbow, and back, Seasonal Affective Disorder, and withdraws from society as a response to Suicidal ideation, Post-Traumatic Arthritis.
The Unicorn (daughter) has C-PTSD, fear of abandonment, Generalized Anxiety, Clinical Depression with self harm, Anorexia, and a profound sense of justice/injustice, if you betray her, are a hypocrit, or break a promise, you are dead to her.
The Fire Drake and Ice Dragon (son) is Autistic, has severe suicidal depression, especially when bullied at school, Social Anxiety, Executive Function Disorder, C-PTSD, all negative emotions start as anger
Finally, The Weeping Willow Dryad (mom) C-PTSD, Has endured 2 back surgeries that failed, chronic pain, Agoraphobia, Skleroderma, Raynauds, Rheumatoid Arthritis in her hands, Osteoarthritis in back and knees, Social Anxiety, Clinical Depression, and an emotional reactive disorder that has gone undiagnosed.
As Ringleader I am in charge of making sure everyone takes their medications, at least tries to get to some sort of therapy, drive everyone to appointments, physical and mental. Know everyone's favorite foods, cycles of physical and emotional needs, understand who is feeling ill when. Get all meds for everyone from the pharmacy. Attend 90% of appointments. Get food for everyone, that they like. Listen to the complaints of every single one of them.
When I finally speak about the negative behavior that is effecting people in the household, I get attitude.
From screaming, to blowing the comment out of proportion.
If I say "please stop answering people for me"
I get "I will never talk again, you never have to hear my voice ever again"
If I schedule a much needed test on the wrong day, I get guilty about it.
If I say "I would have done _____"
I am accused of telling people how they did it wrong.
I am trying to manage my home and the people in it.
All I really want to do is run away.
I dream of tropical places, and travel, and being responsible only for myself.
I feel like I am holding the whole place together, and without me no one will be able to function. This has been proven many times.
I am so tired, so empty, burned out.
The light I have always had is getting dimmer and dimmer, and I lost so many people because I had to protect myself from them in order to manage my home.
I know this is all a ramble...rant, maybe none of it makes sense.
I just needed to let it out somewhere.
#ComplexPosttraumaticStressDisorder #BipolarDepression #ChronicDepression #Anorexia #BorderlinePersonalityDisorder #FearOfAbandonment #Autism #Agoraphobia #SocialAnxiety #ExecutiveFunctionDisorder #DissociativeIdentityDisorder #PMDD #TemporalLobeEpilepsy #Epilepsy #SeasonalAffectiveDisorder #EatingDisorders #GeneralizedAnxietyDisorder #Arthritis #Skleroderma #RaynaudsDisease #ChronicHeadaches #ChronicMigraines #InvisibleIllness

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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

2 reactions 8 comments
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Heart Failure

I think I am entering into the endgame at this point. Heart failure seems like the most likely cause. Tomorrow is my youngest‘s ninth birthday, so I need to make sure I hold on a few more days. It sucks that it’s the holidays right now, and no matter what I am going to pass close to special days for people. I just hope that they can remember the good and not have it be something that reduces their enjoyment. That would be very sad because I absolutely love the holidays! I am excited to celebrate his birthday with him tomorrow.

Health Update

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

Health Update

72 reactions 28 comments
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Finding the Joy!

The night before last, I had a very rough night, I was in so much pain. I literally woke up mewling like an injured cat. Yesterday, despite the pain, I decided to go out with a friend and had such an amazing day! I saw the sunset from the top of the Calgary Tower (a 620ft high rotating tower) and then we went to see the large Christmas tree outside. Right now, much of my support system is isolated with Covid, and I am unable to see most of my family or friends (including my new wife, son, parents…), except virtually, and I’m so grateful for those who have stepped up to help out. Thank goodness for my people, my pets, good books, and good food! Life is always more good than bad, and even in the hard times there’s much joy to be found!
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma
#CeliacDisease #MitochondrialDisease #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

36 reactions 8 comments
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Dogs are incredibly smart and empathic. Ben (my big guy) has been able to sniff out my cortisol levels for years and tell me when I need to take more medication. Jones knows when I need emotional support and comes to comfort me. They know when someone in their pack is unwell and dying. Poor dogs have been impacted by my steady decline in health. Ben is stress shedding and losing his fur in massive clumps. They do not want to leave my side and follow me everywhere.Each time I have a health crisis they know and comfort me. They are a huge part of how I have made it this far; through all my diagnoses, Covid, everything… I couldn’t do it without my fur babies. Shout out to all the pets out there. 💜🐕🐾

#dogsarefamily #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #dying #MightyPets