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#POTS vs Summer

Hey friends, it’s been awhile but I need your help. It is now summer where I live and I am severely struggling. I go outside in the heat for 5 minutes and I feel awful the rest of the day. I feel really dizzy and nauseous and my ears start ringing. My feet also have a fun habit of turning purple. I’ve been drinking a ton of water and I wear compression socks occasionally but it barely makes a dent in helping my symptoms. Sometimes I think the compression socks make the heat worse. Any tips on handling the summer? Any and all advice is welcome!
#PosturalOrthostaticTachycardiaSyndrome #Heat #ChronicIllness #Spoonie #SpoonieProblems #help #Advice #heatintolerance #bloodpooling #circulation #Summer #compressionsocks
#chronic #heatintolerance #Summer

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No diagnosis frustration-help please!!!

Someone please give me some hope, or reassurance or encouragement. Im so beyond frustrated and sick of being told everything is "normal" and its nothing and I just need to see a psychiatrist.

Im not stupid, I know myself and I know my body and everything is NOT okay!

I saw an internal medicine specialist today and it was just such a waste and so frustrating because they seem like they listen to me talk about my pain and my symptoms and then they tell me I just need to keep doing the same old crap and dont give me any answers. Its so discouraging and invalidating to say the least.

Why won't they look into things and consider that it could be something else.

I have muscle pain, joint pain, dizzy spells, headaches, migraines, fatigue, nausea, cognitive difficulties and confusion, cold hands and feet, heart racing, shortness of breath and so many other little things and really all they can say is its nothing??

Help! How do they know its nothing?

#thyroid #Lupus #PostconcussionSyndrome #BrainInjury #Fibromyalgia #GravesDisease #Inflammation #doctorsdontlisten #discouraged #Migraines #Headaches #Dizziness #circulation #raynauds


Can You Relate?

I feel like my mitochondria are suffocating.
I feel like my cells lack oxygen.
Laying down, I feel like I’m being crushed by bricks.
My heart is beating too fast, too hard. I feel it through the thin wall in my chest and it throbs.
My circulation feels cut off when I lay on my arm.
My muscles ache. They twitch and spaz.
This fatigue is incomprehensible.
When I lay on my side, one knee atop another, the contact of bone is uncomfortable.
I want to scream, but lack the energy to do so.
I’m hungry, but too weak to get up to get food.
I’m exhausted, but can’t sleep.
I’m in pain, but meds require too much from me to get up and take them.
I’m bored, but too brain-fogged to do anything productive.
My arms won’t hold a book up.
My fingers are weary from typing.
My eyes are too sore to look at a screen.
I’m too sick to work but apparently not sick enough to get disability.
I only make it into the doctors office on good days.
I want to enjoy my good days; pretend I’m not sick; then to everyone else it looks like I really am not sick.
I’m in too much pain to go on, but not severe enough to get help from the ER.
My doctors don’t have answers.
Other practitioners treat me like a guinea pig.
Everyone has their idea of what will “fix” or “cure” me, or what I’m doing wrong.
It hurts to lie down. It hurts to stand. To sit, to walk.
I move from my bed because I hurt, then back to my bed because I hurt; all the meanwhile using energy I don’t have.
My spoons have run short. I think I’m on next year’s supply.
I wish I had a doctor who knew more about what’s going on with me than I do.

#LymeDisease #ChronicFatigue #ChronicIllness #ChronicPain #Muscle #Joint #ahces #Pain #Fatigue #exhaustion #nausea #Twitching #Hunger #tired #Spoonie #help #Relateable #mitochondria #circulation #Tachycardia