Dysautonomia

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    The Incandescent Light Bulb Ban Harms Many

    I have photophobia and over 10 years dealing with it, I have found incandescent bulbs are the only light I can tolerate for long periods. This year, the US president, Joe Biden has pushed forward on a ban of all incandescent light bulbs in an effort to support reductions in carbon emissions. I am terrified of this because it means I will never be comfortable in my own home anymore. I cannot tolerate the greener options available (fluorescent and LED) and being around these lights cause me significant pain and mental distress to the point where I become non-functional.

    Does anyone know where I can start to get the needs of people with photophobia and other visual sensitivities heard on this issue? I was thinking about contacting an optometry group, a news station, The American Foundation for the Blind, The ADA, writing a letter to local state reps, even the president.

    There isn't really a group specifically for photophobia and light sensitivity and our needs often go overlooked because eye problems that require brighter lighting are more common.

    Also I don't have all the illnesses I hashtagged, I just wanted to bring other people with conditions that can cause light sensitivity into the conversation.

    #Photophobia #EhlersDanlosSyndrome #Autism #Migraine #ChronicMigraineSyndrome #HemiplegicMigraine #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Meningitis #BrainInjury

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    Zero Love & Belonging for me & now my body is continually rejecting me with new diseases too. Pain vs Suffering

    This is my “BEAUTIFUL FAMILY”; My daughter-38 and older husband and his son to the left. To the right, my Diamond, her daughter, then new daughter in law and son (20). I should say my grandchildren, right. When? I had to begin going behind her back to see my Diamond when she is with her father. Then severe Long CoVid caused Dysautonomia, a big car accident where I got off pretty well- except my vision was damaged even more and Dysautonomia made even worse. I fainted every day for awhile. The 20yr old harmed me last & most 2 weeks after his 18th birthday, just a few days before mine. His mother hugged and consoled me. Made him move out. She didn’t come right back as promised. She went tanning for 4 days on a boat with an ex & still blames me 100%— again!
    That beautiful young man I have always loved like my own was raised to hate me once his mom became jealous. He is gone now too. First he cleverly acted to cause me to be deleted from THE family holiday celebration.

    My daughter sent me this photo after Thanksgiving. I had to call truce due to a tragedy in a woman’s life. Still, she avoided me entire month to avoid a conversation about Thanksgiving. She made herself Matron of the family. I am the ONLY adult my age (58) or older who’s child didn’t do something for them to honor them for the holiday.

    It does not occur to her that all I can see is everyone’s joy as long as I am absent. My mom disowned me for being disabled years and years ago, and my sister left drugs finally to take my place with Mom. She even removed every single picture out of the picture albums shoved them in an empty kids chalk plastic container and gave them to my daughter who left them with her ex. He dumped them on my front porch. Imagine that mind bend!! That was who my holiday anchor was until I was disabled and she uninvited me year after year and then nothing.
    Before or maybe not long after the incident with my grandson I directly asked my daughter, “Do I have love and belonging with you?” Her, “What do you mean!!??” I just repeated it palms up. Her, “I don’t know what to say. This feels like some kind of trick.” she said suspiciously. I was aghast. I was on the verge of tears and turning around, “No Blank. It is just that. I want to know if I have love and belonging with you.” And she answered me plainly. “Then No. You don’t.” This has come up and she has never changed it. I suppose I have a relationship because of my Diamond girl and maybe because she reaches out to me and says she loves me because I’m always here for her. Nope. Codependency left the building couple years ago. I have even had her on no contact for my sanity and lost the girl.

    My depression is so deep I can barely take a breath right now. I want to be loved and to know belonging before I die.
    I wake in #Pain everyday. My fourth CoVid caused my #longcovid to go Primal on me. BA.5 is not like the rest, honest. I finally turned to my alternative Dr herbal Chinese Medicine. I have a Master’s in Nursing and know know know that Western medicine might be covered but is also prescribing black label medications for chronic pain without the deep discussion patients deserve. My own mother in law suffered a stroke as a result of this. They added a black box label, but who explains that it even tells people? See-I’m so #angry . So I gotta pay $$$ out of Disability and $$ monthly for livability. From disability have a tea special made for me 3 times a day that controls my chronic pain enough to move in the house and such. It’s great. Still NO ONE understands that #ChronicPain or weakness, or just can’t either. Major #Depression is when I start to cry. Severe Depression is when I stop crying. Sometimes I start thinking and sometimes I stop. It is much scarier if I start. Pain is tolerable, #suffering is not, and #chronicsuffering is the most brutal of all.
    This Grief I bear, of having NEVER had #belonging once I was also #Abandoned by my poor child that I gave all my limited resources to, I died inside. I substantially failed and raised a daughter who is compassion and empathy challenged. I don’t remember being taught to call my grandparents. I didn’t teach my daughter to. My mom is brutal. Oddly, my daughter repeats her and has barely known her?
    My last straw today is a roommate who played the second mom, daughter who loves you, won’t abandon you card. I didn’t buy it. It’s talk. But I thought she could at least be a civil roommate. She walks in and out of the place without a word. Just jumps on that ABANDONED button as hard as she can! Profanity to the Nines! #Profanity #CPTSD #PTSD #ChronicDepression #Anxiety #SocialAnxiety #AgoraphobiaWithoutHistoryOfPanicDisorder #Grief #longcovid #disposable

    I tried. I don’t have words for what’s happening inside me. This is like Anticipatory grief of a hospice patient you know is gonna pass but we keep holding on and loving them just the same. It all makes the body even harder to manage. Thank you, whoever you are.

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    I’m new here!

    Hi, my name is ImperfectlyLeeanne. I'm here because it’s lonely having so many health issues that people can’t physically see but are disabling.

    #MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #PTSD #Dysautonomia #Psoriasis #AutismSpectrumDisorder

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    I'm really enjoying exercising!

    My health issues make it really difficult to exercise - particularly the Postural Orthostatic Tachycardia Syndrome. I faint pretty often, and because of that, I've always been terrified of doing any major exercise.

    But in the last few weeks, I've been slowly building up my tolerance when it comes to walking. Any time my sister comes over, we go for a walk that usually lasts just over an hour. I monitor my heart rate on my Fitbit, which is an absolute god send since it also helps me keep track of my weight loss progress and how well I sleep.

    My sister, despite being 5ft 1in, walks VERY fricking fast. I sometimes have to tell her to slow down, because I just can't keep up with her, haha. And I'm 5ft 7in! I have stumpy legs, damn it. But the fast pace means I lose more weight, so I try my hardest to catch up to her, hah.

    I'm really proud of myself. My step goal on my Fitbit is 6,000 steps a day. Which probably doesn't seem like a lot, but for me? With all my issues? I'd say 6,000 steps is ideal. Last week I managed to reach my step goal twice! Today, I walked into town (about 1.3miles), and reached 6k steps again! So, this week, I'm aiming to reach it three times, and maybe next week I'll try and go for four!

    I'm loving being close to my sister. It's only in the last 18months that we've bonded. I love what we talk about when we're out walking. I love my nephew and all the cute little cooing noises he does, like he's butting into the conversation, haha.

    I'm really proud of myself. My GP always says; "Remember, it's important to celebrate EVERY victory - even the little ones."

    So... I'm going to.

    #chronicillnesswarrior #ChronicPain #posturalorthostatictachycardia #EhlersDanlosSyndrome #NAFLD #Diabetes #IBS #InterstitialCystitis #GERD #EnlargedSpleen #Migraines #LiverDisease #Dysautonomia #BPD #Depression #Anxiety

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    This Thought Has No Title

    I have recently joined the Mighty. I have read so many, beautiful, heart wrenching posts of amazing beings who are suffering with so much courage and grace. I think I have nothing that is that bad. I have a home, enough food, a spouse who loves me dearly, 3 rescue cats who bring joy. Yet, I am very ill. And it’s getting worse.

    These past weeks have been, well, Hell.

    I have Ehlers-Danlos hEDS, Hypopituitarism causing adrenal insufficiency, a type of Dysautonomia that makes my body’s sympathetic nervous system constantly dump adrenaline into my body, along with the flushing of Mast Cell Activation Syndrome at the same time. My vision is going. I can’t drive, very hard to read, write, no movies, very light sensitive, severe ER Migraines, and more. Just doesn’t end. I haven’t slept in I don’t know how long, because of the adrenaline surges 24/7. I have collapsed every day the past week from the BP drops, now without warning. Nausea every day for years. I have had health issues all my life, but milder, so I fell under the radar and many doctors were cruel, or insensitive, a couple almost killed me with their treatments, or lack of. PTSD, from repeated childhood sexual, physical, emotional abuse, and medical traumas. A lot of therapy over decades.
    I was diagnosed just under 2years ago with EDS 2 days before my 60th birthday. Already had everything else, but the Mast Cell.
    It’s like the genetic dam just broke and my life as I knew it was swept away. I was a writer, artist, horticulturist, clinical hypnotherapist, Energy Healer, all gone. I kept hoping to heal. It got worse. I have been practicing meditation for a couple of decades, but lately the adrenaline surges are so severe I am struggling with that. Go figure. I am trying different meds cautiously, as I am extremely sensitive. I am just plain overwhelmed and exhausted. I cannot handle any stressors on my body or mind, it just shuts everything but the adrenaline down. Seems adrenaline is the one thing I have an over abundance of, but it’s taken a serious toll. I did try to end it a week ago, because I felt I was of no use to anyone, couldn’t stand just one more moment of physical or emotional pain. How can I give to others the way I used to when my very being is so depleted and I can’t even get it managed?
    I haven’t given up. Still here. Hard to do this writing and reading because of the vision impairment, so I haven’t been able to contribute much here, and I am sorry. I hope someone can understand. Just in a really low place trying to claw my way back out. Thank you all for the share. I am grateful.

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    Would anyone watch YouTube videos

    Hey everyone, I have been thinking about starting a YouTube channel, mainly to make videos about hacks and tips to living with a Chronic illnesses, but also thinking about doing some vlogging as well To show what it’s really like to be chronically I’ll , would anyone be interested in watching? Or have any video ideas? Would really like to start it but I am scared that no one will watch haha, any thoughts are welcome😊😊 #EhlersDanlosSyndrome #ArnoldChiariMalformation #Syringomyelia #Gastroparesis #ChronicVestibularMigraine #Dysautonomia #AutonomicDysfunction #Anxiety #Spoonie #Vlog #spoonielife #PelvicOrganProlapse #ChronicPain #Hope

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    Letter to Medical Students: What EDSers Want You To Know

    A letter to all future nurses and doctors, to med-students and allied healthcare professionals across the world.

    For patients with chronic illness, rare disease, and especially Ehlers Danlos Syndrome, we need for you to be well prepared when you meet a patient (zebra) like us.

    Historically, we have not been taken seriously and that’s led to much frustration in our experience with doctors, but maybe it’s not your fault. Perhaps, you haven’t been educated on the human side of this reality.

    Anxiety is *not* the cause of our pain.

    We are *not* being unreasonable when we tell you the pain is literally everywhere.

    Please, for the sake of your patients.. Learn the commonly misdiagnosed medical conditions relative to chronic diseases with overlapping symptoms – I.e.: how small fiber neuropathy and fibromyalgia are often mistaken for one another.

    Become educated in dysautonomia and exercise intolerance, heart blocks, bowel immotility, exhaustion, spoon theory (basically the borg exertion index)

    Encourage your medical educators to put more than 2 paragraphs in your book about rare disease because you *will* inevitably run into patients with one and we are tired of being brushed off to the next cycle of consultations.

    Listen to your patient. We aren’t lying or making up our symptoms. It’s not “trendy” to be chronically ill. It’s disruptive and we just want to be able to function on a day to day basis.

    Become a specialist in chronic illnesses. More and more people are going through the diagnostic odyssey and shuffling from one uninformed doctor to the next. Help us! There aren’t enough of you and more than enough of us.

    Be open minded. Because you may not be able to fathom what we go through in a day. Sitting can be like running a marathon. Our muscles are stiff from holding our loose joints in place.

    Not everyone has to have vEDS to have vascular complications. They are common in other forms of EDS too with increasing research on hEDS and vascular complications – many are are due to severe dysautonomia.

    Think.. never ending growing pains.

    Connective tissue stretching, consistent micro tears from lack of proprioceptive awareness, inducing histamine response from mast cells, paving way for inflammatory response that ignites autoimmune response which in turn flares up the nervous system. It’s all connected.

    Fascia in a patient with hEDS is often thicker and stiffer so imagine the soft tissue level and myofascial pain.

    No. Exercise is *not* always the answer and physical therapy hits a plateau. Sometimes we can work up to strength for 7 months and lose it all in 2 weeks without warning.

    Ask your team to take CEUs on EDS. Can’t find any? There’s a gap that needs to be filled here.

    Are there any policies that doctors can fight for to improve quality of care for rare disease patients? Do you all ever discuss this?

    Gene therapies are often a turn off, despite how badly we wish to be “fixed”.

    All mobility aids are helpful. Don’t discourage the use of them.

    Trust and believe your patient. We will tell you what is wrong if you listen.

    Thank you.

    themighty.com/topic/Ehlers-Danlos-Syndrome

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    Is there something wrong with my stomach?

    Hey, everyone. I hope you’re all okay and staying safe and well.

    I have a bit of a strange question. I have several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Ehler’s Danlos Syndrome, IBS, Non-Alcoholic Fatty Liver Disease, Diabetes, Interstitial Cystitis, Migraines, Gastro-Esophageal Reflux Disease and some mental health difficulties. So there’s a lot of stuff going on.

    Anyway, I regularly get stomach aches, or just an iffy stomach in general. I’ll sometimes go 2-5 days with a very minimal amount of food because I’m just not hungry and I feel sick. I’ve had lots of tests and scans and beyond having a Hiatal Hernia and some inflamed blood vessels in my stomach lining, they can’t find a reason behind this. But I’ve recently discovered that when I feel like this and/or I’m bloated… I can get it all to go away by drinking something fizzy. Doesn’t matter what it is, but as long as it’s fizzy… It almost instantly makes it better.

    Does anyone have any idea why this is? I do struggle to burp a lot - I always have. When I burp, they are tiny and don’t make much difference, even after I’ve drunk the fizzy stuff. I’m completely open to suggestions. I take all kinds of medication for my IBS and GERD. Antacids, Buscopan, Mebeverine, Metaclopramide (an anti-sickness). But they have a minimal effect when I have these stomach aches, bloating, nausea and loss of appetite.

    Thank you all in advance! Any suggestions would be greatly appreciated. Stay safe!

    #ChronicPain #chronicillnesswarrior #POTS #EDS #Dysautonomia #GERD #IBS #nausea #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BPD #HiatalHernia #Advice

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    Anybody have tips on pediatric dysautonomia?

    My daughter was diagnosed with moderate dysautonomia. Anybody have any tips. To name a few, she experiences, nausea, reflux, headaches, muscle weakness, dizziness, stomach pains, palpitations, orthostatic tachycardia, lightheaded and more. She takes florinef, a beta blocker, and extra sodium and fluids. Thanks! #AutonomicDysfunction #Dysautonomia #pediatricdysautonomia #PosturalOrthostaticTachycardiaSyndrome #LivingWithPOTS