Raynauds Phenomenon

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Raynauds Phenomenon
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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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New episode to be released tomorrow, 4/1!

We’re talking humor and laughter as coping strategy! Ridiculousness and absurdity ensued while recording this episode and laugh out loud Brain Fog truly happened which we decided to not edit out. Come Listen and Laugh with us!
00:05 am EST release 😄👏🏻.

(At this time, we have no episode transcripts but hopefully soon there will be. Please Be patient as we are doing this on our time and not getting paid for it.)
#ChronicHeadaches #ChronicIllness #ChronicMigraines #ChronicPain #Fibromyalgia #Agoraphobia #Anxiety #MyalgicEncephalomyelitis #Spoonie #spoonielife #CrohnsDisease #Endometriosis #RaynaudsPhenomenon #Dysautonomia #Vertigo #ChronicOrthostaticIntolerance #Podcast #creativecopes #ChronicFatigue #Migraine

Creative Copes Podcast • A podcast on Spotify for Podcasters

A podcast featuring two friends wanting to inform, educate and raise awareness into our ways of Creatively Coping with mental and physical restrictions. We want to add flavor and color into the bland landscape of chronic and invisible illness. Through wit, crazy and sometimes dark humor, we will explore how to channel our energy through creative means while searching for balance and flow to stay sane with dynamic disabilities. Love and Light ♥
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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

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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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