raynauds

80% of erythromelalgia patients also have raynaud's. Are you one of them? #Erythromelalgia #EMWarriors #erythromelalgiawarriors #raynauds 😫

Hi! I'm Vi, a 21 yo nb female diagnosed with benign joint hypermobility syndrome, unilateral #raynauds (that I HAD TO FIND OUT) and ADHD/bipolar.

I honestly don't trust my doctors due to a lot of messups they have done before and an intense lack of care and profissionalism. Constantly feel like I am paying them for nothing in return...

Anyways, none of them give a fuck, so here I am doing their jobs for free, looking to know which diseases can cause constant body throbbing and pulsation. I have this mostly on my upper back, head and cheeks. It also happens on my knees, feet and stomach as well.

Last winter was hell, I couldn't sleep because my body felt like a car engine turned on. At this moment my phone moves on my hands because of the pulsating sensation. Does anyone here have this same symptom?

I fight my exhaustion with exercise: youtu.be/PhHH3uyTA3Y

What do you do when you are exhausted… not just tired, but bone weary exhausted?

#Abunchofrarediseases
#AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #migraine
#Asthma
#CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
#raynauds #MentalHealth
#Depression
#Anxiety
#ChronicPain
#ChronicIllness #Disability #DistractMe #RareDisease

youtu.be/memjDpJpG14

In my video, I talk about my journey from the hospital to my 9 km hike three months later.

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

I can smell the green of the grass and trees.
I can feel the last bit of the warm sun on my face and the slight breeze.
I can taste the cool water on my lips.
I can feel the twigs snap under my shoes.
I can see the beauty of nature all around me.
I can hear the birds chirping and honking.

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

I am feeling and looking more like myself. When I was really sick I didn’t look like me. I had bald spots, a round face from too much steroids, I couldn’t walk, I just didn’t look or feel like me. Now when I see pictures of myself, I see myself again.

Taking care of my health and my house is a full-time job, and I am often exhausted and always in pain, but there is so much joy and I am so grateful for this second chance to soak up as much as I can. Root canal tomorrow and bronchoscopy on Monday, fingers crossed that everything goes well. Thank you all for your support and I hope you have a wonderful day.

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

When I was a kid I would climb this tree with my childhood best friend. Today I went to see it and discovered it had died. It is still beautiful in it’s death, but I was sad to see it was not the same. The wood is soft and disintegrating, but it will turn into something new, fertilizer for the next life to grow.

In some ways I feel like this tree, a part of me died, but out of that a new version has grown. The seed, the core of who I am is still here, but something new has grown from it. It’s not the same, but still beautiful.?

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

youtu.be/U278YzowHtE

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

For those of us with multiple health conditions, there is a cost to everything we do, and often we get what I like to call the fun hangover. Do you get one and if so, what do you do to recuperate?
youtu.be/zHcrHrCn2J8 (this is the link to my video on the topic)

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

CT shows it is unlikely cancer in my lungs, they don’t know what it is, but that’s a problem for another day!

youtu.be/ivZ72NM2GpI

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