raynauds

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Vent/Question - Body throbbing

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?

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Let’s engage our senses! Use your senses to describe your most relaxing spot.

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

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Feeling more like myself

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

37 reactions 12 comments
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My Tree

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

41 reactions 13 comments