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?

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

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Answers

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.

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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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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
youtu.be/nb1X_Hir7nI

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

Health Update

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

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Pups

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. 💜🐕🐾

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

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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

14 comments