Syncope

hi everybody,

Kind of hoping someone with similar experience or even professional experience has ever had something similar happen to them, and whether mobility aid conversations were navigated with similar issues.
I am formally diagnosed with hEDS with confirmed MDI both hips both shoulders, POTS with syncope, celiac, Sjögren’s and PsA with confirmed involvement on MRI. My primary mobility aid right now is a rollator.
In December, I really started noticing this pain and symptoms in my left leg that seem to be getting worse over time. There’s a burning pins and needles quality down the lateral aspect or the side of the leg, it starts in the SI joint. I have this involuntary muscle guarding so if I’m not paying attention, the muscles are clenched and I can’t manually relax it. I’ve been falling down recently because I can’t quite feel where my leg is, So to move it, I have to move it from the hip instead of stepping with the foot first if that makes sense? I have to stiffen the knee so that I can kind of feel where the leg is landing, but it’s not numb to touch. No position is comfortable. It’s all very excruciating and I’m dependent on a heating pad almost 24 hours a day to be able to tolerate it. Walking is agonizing even with my walker. I have an appointment with rheumatology next week, and I have been trying so hard with the rollator For six months and it’s just not getting the job done because I’m sitting on it and scooting with my feet whenever I am supposed to be standing still. I basically sit in it and scoot. Has anyone with a similar presentation navigated the pass trying for ambulatory wheelchair use? The system I’m part of is incredibly resistant because it’s an academic hospital, so I would be afraid to even bring it up under the presumption I don’t qualify. The pain is uncomfortable all night and limits the sleep I can get and there is no comfortable position that relieves it. Has anyone else gone through this and come out the other side with the equipment they needed?

Thanks so much ❤️ #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #PsoriaticArthritis #SjogrensSyndrome #ChronicIllness #ChronicPain

Hi!
I’m Sage. I have hEDS, POTS with syncope, Celiac Disease, Sjögren’s, Psoriatic Arthritis. I’m looking for some connection and community. I love discussing disability activism and the history of disability rights!
#EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #sjogrens #PsoriaticArthritis #CeliacDisease #Disability

Hi, my name is KOhden97.

#MightyTogether #Migraine #Fibromyalgia . I have clEDS, Fibromyalgia, Ulcers, Acid Reflux
Sensitivity to Soaps/Cleaning Supplies/Synthetics/Prescriptions,
Atopic Dermatitis (eczema) facet arthropathy, Photophobia, heterotrophic bone ossification, temperature irregulation, Vasovagal syncope, osteoarthritis, chronic pain/fatigue and more.

I’m overwhelmed with thoughts, emotionally exhausted, and tired. I spent 1 hour of my 2.5 hour appointment going over only part of my medical history.

During my appointment I was asked if the symptoms I discussed lower my quality of life or inhibit my life. My answer was “Yes, when symptoms are present my quality of life is lowered and inhibits me from doing things that I want to get done during my day”. On top of that I was asked if I have any stress in my life (HAHAHA). I’ve been stressed my whole life, I’ve been chronically ill dealing with eye surgeries, a suppressed immune system, etc for the past 17 years. Oh and on top of that my mom is newly diagnosed with Parkinson’s and vents to me about her health. Oh and my job has a lot of stress lately, we formed a union, difficulties with supervisor, etc. I do my best to limit stress by working out and meditating but that doesn’t seem to be enough.

You know what the doctor said? “Well seems like it’s vasolvagal syncope/neurocardiogenic syncope and you’re already doing everything we’d recommend. You’ll get over this and out grow it. But for some reason if you don’t, you can make another appointment”.

Yes I’m happy my heart is healthy. Yes I’m happy I’m resourceful and know how to listen to my body. But I wish there was something more I could be doing to limit these episodes. I live in fear and anxiety for weeks after an episode wondering why it happened, what could I have done differently so it didn’t happen, and when is it going to happen again? I think any chronically ill person can relate - I just want 365 days of stability, “remission”, and no new medical conditions.

Thanks for letting me rant, I’m going to go take a bath and do my nails to distract me the rest of the day.
#NeurocardiogenicSyncope #HypothyroidismUnderactiveThyroidDisease #MentalHealth #Anxiety #MedicalStress #newdiagnosis

General health appointments: 5

Specialist appointments: 12 (rhuemotology, ophthalmology, podiatry, endocrinology)

Allergy: 20 appointments, 76 allergy shots

Infusion: 13 appointments, 32.5 hours sitting in the infusion center

Imaging/testing (not labs): 2 MRIs, 2 1-week long heart monitors, 1 stress test, 1 tilt table test, 1 heart ultrasound

Mobility aids: 2 mobility aids added to my daily routine

- - - - -

Pre syncope episodes: 3

Vertigo episodes: 5

Anxiety Attacks: 2

I’m proud of myself for speaking up to my doctors about a symptom I’ve experienced my whole life but no one has ever looked into. I’m proud of all the ground techniques I’ve learned this year. I’m happy I found 2 apps that help me with mental health and health record keeping. I’m also very proud of my mom who started her chronic health journey with Parkinson’s this year. She is going to speech classes and sharing information with us (family). Her new diagnosis is frustrating and exhausting but she’s learning and still doing things she loves. 2026, please be gentle to us.

#Uveitis #Glaucoma #ParkinsonsDisease #MentalHealth #Anxiety #ChronicPain #Presyncope #NeurocardiogenicSyncope #AutoimmuneDiseases

I was so excited for today and have been looking forward to it this whole week. I had a hair appointment and I haven’t had my hair done in 3 years.

I’m sitting in the chair with bleach in my half my hair and I can tell I’m going to have a pre syncope episode. I started sweating like crazy, my face had no color, I was shaking, and my vision kept going away and coming back. I tried my routine breathing and talking to myself but it did not work.

Soooo I had to end my appointment. Called grandma to pick me up. Luckily my hair stylist is the greatest human on the earth - using the cold setting on the blow dryer to cool me off, washed and styled my hair while I was awardly leaning backwards.

Anywaysss later I looked at my health data - my heart rate went from 78 resting to 50 resting and struggled to raise my heart rate for the next 10 minutes.

I did try to have extra electrolytes before my appointment. I did have 3 glasses of water this morning. I did eat a meal before I left. I swear, the biggest trust issue I have is with my own body. I’m frustrated with my body, I’m embarrassed of my body, I want to forget today happened but half my head is bleached for a continuous reminder. And what? I’ll make my appointment to get it finished and be anxious about possibly passing out again and won’t be relaxed like I should be when you get your hair done.

Let me sulk today, I’ll get back on the positivity bus tomorrow. But huge shout out to my hair stylist for making me feel safe and seen - I wish more people could do that. Also I love a good salon dog, thank you for resting your head in my lap when I arrived, you are the sweetest.
#bradycardia #NeurocardiogenicSyncope

Hi, my name is PomegranateKoala21. I'm here because The Mighty represents a great resource for persons with various medical issues. I’d like comment on my specific medical issues, and there’s a large amount of them. First, I’m a 77 year old female. These are many, but not all, of my medical issues:1. Hepatic sarcoidosis – diagnosed 50 years ago. Active2. Pulmonary sarcoidosis- active3. Pulmonary hypertension4. Diastolic dysfunction5. Autonomic small fiber neuropathy – (asfn) with 90% of symptoms 6. Chronic inflammatory demyelinating polyneuropathy – (CIDP)7. Fibromyalgia8. Severe restless leg syndrome9. Severe central sleep apnea10. Severe obstructive sleep apnea11. Heart failure12. Non-REM sleep13. Syncope and collapse14. Asthma15. Chronic venous insufficiency16. Idiopathic hypersomnia17. Gout 18. Myositis19. Sciatica20. Allergies21. Low pulse ox- sometimes down to 84 and below22. Bradycardia – at times into the upper 40’s - asfn23. Tachycardia – up to 111 – asfn24. Low blood pressure – down to 80/40 – asfn25. Severe osteoporosis26. Heart perfusion defectI’m tired, but I have more than 70 diagnoses. Feel free to comment

Hi, my name is livia. I've been diagnosed with autism lvl 2, anxiety, and being tested for depression and ADHD. I also have vasovagal syncope. I'm currently considering a psych ward stay due to re-occurring suicide thoughts

#MightyTogether #AutismSpectrumDisorder #Anxiety #Depression

Hi, my name is hanniebananie.
I was just diagnosed with MCAS, POTS, and either EDS or Lipodema (we don’t know which one yet). I’ve been on a long journey with chronic syncope and I’m just now getting some answers! I would love to connect with people who relate and understand, or don’t! Let’s talk :)
#MightyTogether #PTSD #MastCellActivationDisorder #RheumatoidArthritis #PosturalOrthostaticTachycardiaSyndrome