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Worried.

I have #POTS , #Joint hypermobility EDS #Fibromyalgia #Hypoglycemia and #Osteoarthritis . Lately, for about the last 3 weeks, I've felt good! I have very mild symptoms: dizziness, pain, fatigue, headaches, constant thirst, but hardly any tachycardia. This has my worried, thinking it's not actually POTS, but something worse. I think my doctor may think I'm crazy if I continue to ask him if it's normal to feel ok. It's just that I'd felt really, really bad for such a long time. I'm just trying to understand if POTS symptoms can mostly go away. Will they come back? It's weird to feel good. Can anyone relate?

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Hi I am new here x

Hi everyone my name is Donna. I am new to The Mighty and can not wait to connect with you lovely people. I am hoping to meet some new friends. I suffer with a lot of conditions. I'm struggling with a really bad Fibro flare up since the 8th September so I haven't been able to work. I can't get my husband to understand how much I'm suffering and that I'm not fit to go back to work, so I feel so alone sometimes 😥
#Endometriosis #Fibromyalgia #Joint hypermobility syndrome
#sjogren 's syndrome #Depression #Anxiety #PTSD #Arthritis

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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

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Has anyone with #EhlersDanlosSyndrome been able to find a way to put their #sacroiliac #Joint #dislocations back in place?

I've been in severe pain for 4 days now. (it was 'just moderate' before) I haven't slept, I keep vomiting because of the pain. Even morfine combined with NSAID's doesn't help.
My #POTS is all over the place because of all the meds and not being able to drink enough.
My physical therapist tried to put the SI joint back, which seemed to help but after an hour it just popped back out of place. I've been in an out the doctor's office... They have no idea what else to try.
I feel so tired and hopeless since no one seems to have a solution...
I'd love to hear any suggestions, also on prevention.
Anyone who had a #Fusion done?

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Any good braces for elbows?

I have severe hypermobility and I’m looking for a brace that could help with it. It would help if they were on the cheaper side as well. #Hypermobility #Braces #OrthopedicBraces #Joint pain

2 comments