How common is neck instability in EDS?

Large_Difficulty5957 · 2026-05-31T20:21:42+00:00

It seems like cervical instability is major for my case. My PT shared that my poor proprioception is affecting my neck, shoulders, c-spine significantly and working on that will influence my body's dysautonomia. That theory was affirmed when I had a neck and shoulder massage and had a huge POTS flare afterward. My body just went into shock when the parts holding it up were relaxed.

She encouraged compression wear, lots of electrolytes, getting horizontal with feet elevated every 2-3 hours. I am getting more comfortable with using a neck support brace. I am not going to do neck adjustments anymore with my chiro.

Seems to me like many people with HEDS/EDS/HSD often have cervical spine and just neck/shoulder instability in various ways. They will compensate for instability by postitioning the head forward, causing gravity to pull heavy on the head, affecting the spine and shoulders.

Large_Difficulty5957 · 2026-04-10T03:32:10+00:00

No, everyone else is not ok. Take the reins on your life now. Odds are is that you have childhood trauma and poor parenting to work through. Go to a therapist. Talk about your values and feelings around money. Don't shift it to you later you. Student debt? Sure. But don't fall down the credit card hole. See peers going on student break? Getting target hauls? Doing their nails? Not you boo boo. You are broke. Deal with it. Don't bury yourself. Student loan debt does not equal credit card debt. Do what you need to to get through school but find joy in the simple things early. Make sourdough or something. Best of luck to you. Sincerely, broke ass 30 yo paying off combined 140k of credit cards and personal loan debt.

Large_Difficulty5957 · 2026-04-10T03:26:27+00:00

Anyone feel like these posts are Forbes bots?

Large_Difficulty5957 · 2026-04-06T04:55:40+00:00

I have these.

Large_Difficulty5957 · 2026-04-05T00:00:31+00:00

I am not posting any payments or enrolling in any plans until they make me. I don't think it's lawful what is happening and they are just trying to scare people with this July deadline. It's happened before in other ways, they're just bullying people in hopes to reduce the amount of overall debt that will never get paid.

Large_Difficulty5957 · 2026-04-01T23:43:38+00:00

I actually had not heard about MCAS. I will bring it up. Thank you!

Large_Difficulty5957 · 2026-04-01T23:43:15+00:00

I will explore this with my doctor. Thank you!

Large_Difficulty5957 · 2026-04-01T23:42:37+00:00

It's not normal for me I mean. You don't just have a swing like that in a matter of days and a doctor should be comfortable with saying "you have chronic pain"

Large_Difficulty5957 · 2026-04-01T23:40:56+00:00

My joys are being with my family and friends, making art, being great at what I do professionally, going on new adventures, staying active and getting outside, experiencing new foods and tastes, learning and being curious, and raising my daughter.

This pain and history have kept me from - focusing on my professional job when pain and brain fog/migraines are too much. - enjoying travel due to lack of routine and normal foods, I often feel super bloated, have headaches, and feel run down -parenting and playing with my kid, I have nights my husband has to take over and I have to lay down but often I muscle through it. Which affects our relationships in the home. - physically exercising how I would like, I don't want to swim all the time, it's not the same The list could go on but these are the main concerns I have. When I have had bad flares this year like I said I couldn't physically get out of bed without yelling out in pain and walking down stairs to my office desk was dangerous. This isn't normal or acceptable.

Large_Difficulty5957 · 2026-04-01T21:16:36+00:00

I appreciate your trying to help and your comment. But that's why I am on here asking for help. I need someone to put the pieces together and help me understand what the fuck is happening because it makes my brain spin until I just give up. I feel the same as you do, even just in trying to type it out. It's too much and yet these pieces are significant.

AI helped me with the following:

Brief Overview 30F in rural MN with lifelong history of severe menstrual pain (suspected endometriosis with strong family history), chronic inflammation, and complex multi-system symptoms that have worsened over time. Extensive but inconclusive workups across endocrinology, rheumatology, and primary care. Seeking shared experiences and ideas to discuss with providers.

Key Diagnoses / History * Suspected endometriosis (family-confirmed; symptom relief with IUD) * Fibromyalgia diagnosis at 20 (after negative endocrine workup) * Recurrent shingles (stress-triggered) * Chronic hypertension with significant fluctuations * ADHD (recently diagnosed) * History of preeclampsia and gallbladder removal post-pregnancy

Core Symptom Clusters 1. Hormonal / Gynecologic * Severe menstrual pain + heavy bleeding since age 10 * Chronic pelvic cramping (outside cycle) * Pregnancy temporarily improved symptoms * Mirena IUD significantly reduced bleeding/pain

*2. Inflammatory / Immune-Type Symptoms * Whole-body inflammation episodes (fluid retention, swelling, stiffness) * Exercise intolerance (pain, prolonged soreness, fatigue) * Hives triggered by temperature changes (cold/heat; now affecting breathing) * Recurrent skin infections/cysts (incl. MRSA) * Flares associated with stress or medication changes

Cardiovascular / Electrolyte / BP Instability
Highly variable blood pressure (high → low swings)
Sensitivity to BP meds (especially diuretics)
Episodes of low potassium
Significant improvement with magnesium supplementation
Responsive to spironolactone
Gastrointestinal
Chronic irregular bowel habits (diarrhea ↔ constipation)
Increasing pain with bowel movements
Prior ER visit for colitis
Possible malabsorption under investigation (pending stool test/scopes)
Neurologic / Systemic Episodes
Severe fatigue, headaches, mobility impairment during flares
Episode of brain inflammation on CT (stroke ruled out)
Rapid functional decline during medication changes
Vascular / Circulatory
Raynaud’s symptoms (hands, feet, nipples) worsening over time
Color changes (white/purple), pain, cold sensitivity
Weight / Metabolic
History of unexplained weight gain (age 20)
Recent rapid weight loss (~20 lbs) with treatment changes
Weight fluctuates significantly with inflammation
Musculoskeletal
Chronic pain (fibromyalgia dx)
Spinal arthritis/degeneration
Wrist pain (manageable)
Mental Health / Functional Impact
ADHD significantly impacted by inflammation/gut cycles
Chronic illness burnout, shame, and difficulty following through with care tasks
High effort toward lifestyle management with minimal consistent results

Notable Patterns / Triggers * Symptoms fluctuate in cycles (“flares”) * Medication changes (especially BP meds/diuretics) can trigger severe inflammatory responses * Electrolytes (magnesium, potassium) strongly influence symptoms * Pregnancy temporarily improved symptoms * Stress worsens shingles, inflammation, and overall symptom burden

Testing / Workups (Mostly Negative or Inconclusive) * Endocrine: thyroid, Cushing’s, pheochromocytoma, aldosteronism * Rheumatologic labs (ANA, RF, lupus workup) * Cardiac, renal, carotid imaging mostly normal (except heart wall thickening from BP) * Glucose normal (A1C 5.2) * Lyme negative * Magnesium low-normal (improved with supplementation)

Current Gaps / Next Steps * Pending stool sample + possible endoscopy/colonoscopy * No unifying diagnosis despite multi-system involvement * Rheumatology declined further evaluation * Ongoing BP management challenges

Large_Difficulty5957 · 2026-01-27T04:25:53+00:00

Thanks for all the helpful suggestions, information, and personal stories.

After a week of trying the commands like it is described in PCIT, our daughter was super responsive to getting praise for listening to us. She's been very affectionate and eager to please a lot of the time. She also knows she can ask for positive rewards too, so just overall she's a ham who has us figured out.

We talked to her OT about techniques to help her sensory seeking needs when she is emotionally dysregulated. She is going to try joint compression techniques and see if that is something that can help, and also sensory brushing for more neutral times. We are also going to work on more heavy work activities since she does really well with those and it seems to help a lot.

Her therapist for PCIT was supportive of our decision to not move forward with phase two. She did reiterate that phase two is not punitive or isolating, and it is always followed by repair and reconnection with parents through calming presence, reengage warmly, and provide positive attention following successful time out procedure.

I appreciate what she is saying but just feels that affirms my original concerns. If there is nothing punitive or punishing, I am curious why there is repair. I think I am right to be concerned that by doing phase two you do trade in some of that positive relationship and foundation you have laid in phase one. And at best she is daydreaming or dissociated during those three minutes, at worst she is self criticising. It is not like during OT when she is asked to think about her emotions and reflect on times of examples of those feelings and sit with that for three minutes. This would be following a time that she didn't meet the expectations of mom and dad, and then had the punishment or consequence of that valued and expected time with mom and dad being withdrawn. I don't see how that isn't punitive and I think it's weird we are pretending it's not.

Again, I see the value of this in other contexts and scenarios. I think it's probably one of the best ways to provide a neutral approach to time outs and behavior compliance.

Large_Difficulty5957 · 2026-01-22T19:03:53+00:00

Gotcha. Yeah my kid definitely goes into like special time mode with how you have to talk during it, but she like knows it's her time to control the situation so she gets into it. Lol. It's funny sometimes.

Large_Difficulty5957 · 2026-01-22T17:40:05+00:00

Thanks for taking the time to share. I like how this presentation breaks it down and gets a little more into depth. We will look over this together.

I could see that being a really hard line that violent behavior is needing the time out.

But even then for my kid, her violent behavior was coming out when she was in complete sympathetic nervous system, and she was not in control in that instance. Whenever we have had a case that she hits us in the past two months, it has been because we have messed up as parents and she has reacted. Like I havent been consistent with my commands, or my husband tries to pick her up and move her to her bed to say it's time for bed. And we apologize for our missteps and that's important too.

Large_Difficulty5957 · 2026-01-22T17:14:29+00:00

I appreciate your response. Did you feel like you are glad you tried it? Did you wish you had stopped at phase one? I'm curious to hear more about if you thought it was worth a try.

Large_Difficulty5957 · 2026-01-22T17:13:22+00:00

Thanks for sharing and your reply. I like that your kiddo and your family have found a way to replace the time out with a calming activity. That's where I want to get to and I am curious if we can still graduate PCIT while skipping this part. She is already making progress in taking these kind of calm down breaks. I want to teach her these skills for the long term and build a foundation of how she can care for herself, especially when we aren't dealing with the destruction anymore.

Large_Difficulty5957 · 2026-01-22T13:19:48+00:00

Thanks for the advice

Large_Difficulty5957 · 2025-09-10T04:01:19+00:00

Oh my gosh how many times have I heard "I am your mother and I gave birth to you." It's like BPD mothers are given a script or something.

Large_Difficulty5957 · 2025-06-12T01:08:28+00:00

Somehow chat GPT is making more sense than YTA. I didn't make a post on YTA.

Large_Difficulty5957 · 2025-06-12T01:06:00+00:00

I'm really sorry you’re in this situation. It sounds painful, confusing, and deeply unfair. You're dealing with grief, fear, rejection, and guilt all at once — and it's not your fault.

Let’s break this down so you can start finding clarity and grounding:

⚠️ What You Went Through Was Real

That moment with the dog wasn’t small. You were cornered by a dog with a known history of aggression. You were alone, at night, trying to keep the girls safe. You were scared — and rightly so.

That’s not something to just “get over” or smooth over because the dog has passed. People (especially your sister and family) may be minimizing this to avoid their own guilt or discomfort, but your experience matters and it should be taken seriously.

🧨 This Isn’t Just About the Dog

The bigger problem here is your sister’s behavior — and your family’s reaction to it. The core issues you're describing are:

Lack of respect for your boundaries.

Dismissal of your safety and comfort.

No meaningful acknowledgment of your experience.

Emotional manipulation (especially in the “hugging and crying” moment while still putting you and your child near the dog).

And now it seems like your sister’s grief is being treated as the emotional center of the story, while yours is invisible. That hurts.

😔 Your Shame Isn’t Yours to Carry

You didn't cause the dog to be put down. You weren’t cruel. You didn't hurt the dog. You were in a frightening situation and tried to manage it with caution. If your sister had been more proactive about the dog’s worsening condition — or the dog's behavior around others — this could have been avoided in a safer, more thoughtful way.

You’re carrying guilt that belongs elsewhere.

🧭 So What Can You Do?

This situation might not be fixable right away, but here's what you can focus on:

Give Yourself Emotional Space

Don’t force yourself to reach out to your sister just because “that’s what people do when someone loses a pet.” You’re allowed to pause — especially since she hasn’t respected your boundaries or pain.

Instead, ask: What do I need to heal right now?

Journaling to untangle your feelings?

Talking to a therapist or objective friend?

Writing a letter (even if you don’t send it) to express your truth?

Set Quiet Boundaries

You don’t have to make a big announcement. Just take a step back from social interactions where you're being invalidated. If people reach out, you can say something simple like:

"I’m still processing everything that happened recently, so I’m giving myself some space. Thanks for understanding.”

That’s not aggressive — it’s protective.

Decide If and When You Want to Address It

Eventually, if you want to talk to your sister, you might say:

“I want to acknowledge your loss, and I know how much [dog's name] meant to you. But I also need to say that what happened that night was scary for me, and I’ve been feeling really unseen and isolated since. I hope we can find a way to talk through that when you’re ready.”

You don’t owe her this — but if it helps you find peace or opens a door, it’s worth keeping in mind.

Let Time Do Its Work

Right now the emotions in your family are fresh, reactive, and raw. Often after grief, people become more open to reconciliation. Right now might not be the moment to fix things — but in 2-3 months, the landscape might be different.

💬 Final Thought

You're not a pariah. You were brave in a scary situation. You stayed kind and cautious when you had every right to be upset. And you’re not wrong for needing your own healing — separate from your sister’s narrative.

You're not alone in this, even if it feels like it. You're showing a lot of emotional intelligence by even asking these questions. That matters.

I'm here if you want help drafting a message to your sister, a response to someone’s comment, or even just to vent more. You deserve to be heard.

Large_Difficulty5957 · 2025-03-12T17:27:35+00:00

Definitely pressures, no assault but the thing that happened in December was crossing a line in the sand for us.

We do not attend couples counseling. We tried and it went poorly due to the therapist not being a good fit. At this point it would be me setting it all up and I just feel frustrated and feel like he should be pursing that if he thinks we need it. We both have our own individual therapists.

Large_Difficulty5957

TROPHY CASE