Dysautonomia

So last night I broke down and just lost and cried and felt sorry for myself. I really hate doing that!! But I’m going through a rough patch. A bad flare where I swear every joint is swollen and screaming bloody murder at me!! And my currently injured joints are so bad that I don’t know what to do anymore! I’ve got a partial torn ligament in one knee, several torn ligaments and damaged cartilage in my wrist, and low and high sprains that haven’t been properly evaluated by my doctor yet but are from the same fall at Christmas that caused the above noted damage! And so for the past few summers I’m usually in a cocoon of constant migraine all summer long but my preventatives are finally at a good dose and the weather isn’t as severe so I was hoping to get to enjoy some stuff with my family but of course not!!! Because with my ankle as bad as it is I can barely walk anywhere!!!!! And of course my orthopedic doctor had to go on leave and so some other Dr is filling in and got distracted on another issue so that I don’t know what the heck is going on and all I want is them to evaluate my ankle, get the MRI, give me the right exercises to do, even though I’m so tired all of the time, so I can get back on my feet! But by the time that happens the summer will be over and I’ll have once again done nothing but stayed home reading books and sleeping all summer long in pain. Again.

Anyone with #PosturalOrthostaticTachycardiaSyndrome have any safe decongestant meds they can take? I’m struggling with a sinus infection and the urgent care doc told me to take an allergy med and some mucinex for the congestion. I asked my pharmacist and she told me it’s not the best idea with my meds and conditions to take any of them bc they all raise the heart rate and allergy meds drop my blood pressure into the ground. Any suggestions?
#POTS #ChronicIllness #Dysautonomia

My body is a contradiction, constantly. Hypermobile yet stiff as a board at times. When my vision goes out I rely on my peripherals to see and and ambulate. SFN. I will have intense nerve pain in my upper arms that will cause my wrists to loose feeling (everything else is fine), arms must remain at least 90° and proximal to my waist, it also limits my strength and duration. Fight or flight can 💋my🍑. Don't get me started with the gut and stomach fun. 😆
It's one thing having 1 or 2 of the conditions but then start adding the others and mixing them in completely different playing fields with totally different dynamics...😥
Dx: Dysautonomia, POTS, SFN, Fibromyalgia, hypothyroidism that reversed, PCOS, ADHD, MDD, PTSD/trauma, anxiety, more

Living with my chronically ill, autistic, BPD, young adult daughter is like living with an abusive spouse ( I would know cause I lived with one for 16 years before divorcing him). I can’t kick her out cause she isn’t totally capable of living on her own and doesn’t have much income and I don’t have any family that she could go live with. She doesn’t drive either so is totally dependent on me to get her to her part time job and frequent doctor appointments. However I am chronically ill too with several difficult conditions and work full time and care for my youngest daughter that is totally disabled from her chronic illnesses and it is just too much to always deal with the continual cycle of ups and downs she goes through due to her mental and developmental diagnoses. She is on medication that is helping some to stabilize her moods and help her severe anxiety, but she still goes into really awful episodes where her thinking is all over the place and she lashes out verbally and accuses me of things that don’t even make sense. She yells and cussed at me, calls me names and says I’m stupid and don’t really love her. She does the same to her sister but on a lesser scale than with me. In those episodes I can’t reason with her and she is determined that I’m causing her problems. When she is clear headed she can be kind and loving, but she always has another episode before long that is horrible for me to deal with. I feel I’m being verbally and emotionally abused just like I was from my ex- husband. I want a peaceful life and I just can’t seem to ever achieve it due to the whole situation. Has anyone else had experience with this kind of thing? I would really appreciate input. #Fibromyalgia #AutismSpectrumDisorder #BorderlinePersonalityDisorder #chronicmigraine #ADHD #Anxiety #Depression #ChronicFatigueSyndrome #Dysautonomia #UlcerativeColitis #EoE #OCD #DisorderedEating #InterstitialCystitis #Endometriosis #IBS #FoodAllergies

was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget) "what is everything right now is okay?" or "what if right now you're okay and for this moment, everything is okay?" ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says "it's not though" or "so many things are not figured out or are not okay right now" or "you have so many things to do that are stressful!" but what about just like for the moment - cant everything maybe be okay? ☁️meditation hasnt been my calling - and being in my body in that sense, as sometimes being "in my body" makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can't breathe (haha) -- or even triggers that air hunger sensation because with dysautonomia, breathing isn't always so easy to regulate! but for me, painting, doodling, drawing - all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think "It's okay right now." a this teensy tiny moment in time. or this big moment in time - whichever resonates. and maybe when hard things come, "i'll figure this out" or "i'm okay for now, i'll figure out tomorrow when it's tomorrow" and even when not feeling okay, maybe just telling your body that it's safe - it is okay, and you are there rooting for it? ☁️☁️just pondering - would love to know what you think about this sort of focus on the now, but really just reassuring yourself that "you got this!" ? and also holding space for the moments when it's not okay right now, and when this isnt what you need in the moment to support yourself. i think there's a time & place & moment for anything and everything - so do whatever brings you the most peace, comfort, or strength ☁️🌵✨

#Dysautonomia #ChronicFatigue #encouragement #MastCellActivationDisorder #Spoonie #Hope

Hi, my name is ApproachableCorgi74. I've been diagnosed with more things than I ever expected, and I’m going to be getting even more diagnoses. I’m doing my best to cope and learn how to live with it all

#MightyTogether #BorderlinePersonalityDisorder #BipolarDisorder #PTSD #OCD #Schizophrenia #Depression #Anxiety #Dysautonomia

People's Advocates for Total Health works to provide advocacy and connections to better health in communities across the United States. Our original focus was Ehlers Danlos Syndrome, but we now support doctors, coaches, advocates, and educators in supporting invisible and chronic illnesses in every way possible. Right now we are spearheading a fundraiser to provide 300 families with genetic testing for EDS. To donate or find out more, reach out or go to www.path2betterhealth.org. #MightyTogether #Dysautonomia #Dysphagia #EhlersDanlosSociety #EhlersDanlosSyndrome #chron #PolycysticOvarySyndromePCOS #InflammatoryBowelDiseaseIBD #Infertility #LymphomaNonHodgkin