neuro

Dealing with Ehlers-Danlos Syndrome (EDS) and other chronic muscle and joint conditions has taught me a lot about how the body works under stress. One key takeaway is that when muscles are overworked or injured, they tighten up as a defense mechanism. This process takes up a lot of energy, so to conserve resources, the body smartly creates scar tissue to bind everything in place. It’s a clever form of resource management, designed to prioritize immediate survival needs. But the trade-off? Long-term function gets compromised.

One of the most important things I’ve learned is that getting those tight, restricted tissues moving again is the critical first step in recovery. Over the past decade, tools like foam rollers and massage balls have become mainstream. But while they’re great for some people, they don’t always work for bendy bodies. Our muscles overlap differently, and areas like joints require special care. Plus, when you add issues like Mast Cell Activation Syndrome (MCAS), dysautonomia, and fragile lymphatic systems into the mix, direct compression often does more harm than good for many of us.

For people with hypermobility, it’s all about balancing the release of bound-up tissue and restoring healthy function—without irritating the body further. Once the soft tissues regain mobility and inflammation calms down, the body stops compensating and is ready to rebuild strength and proper function and with even better body-mind awareness. Proprioception (the body's ability to know where it is in space, e.g. how you can touch your nose with your eyes closed) can improve, and daily tasks can start to become less burdensome.

It's all incremental though, hypermobile bodies deserve and need gentle progress.

I'm so thankful to the Muscle and Joint Clinic for their diverse and gentle approach to healing. Focused shockwave therapy brings instant relief to my tired muscles and red light therapy down regulates my nervous system. Getting myself into the rest and digest mode has been so vital to my healing.

While my symptoms can flare up in sudden and unpredictable ways, my recovery time is dramatically shortened. I most recently had a migraine with a brainstem aura that had me 1. worried I was having a stroke and 2. asleep for close to twelve hours and sensitive to light for more. I was worried about what that much bed rest would do to my recovery. Luckily, I have some more wiggle room when it comes to full bed rest. My strength and function have been rebuilt enough that I get a day off from physical therapy. A year ago, one day off would cause a cascade of debilitating subluxations and autonomic dysfunction. So while these days feel scary and like there's no end in sight, I'm sitting at my desk two days later amazed that I'm back at 80% function, and not the 20% I would be a year ago.

I’ve focused here on the physical aspects, there's also the emotional layers of healing. Underneath a lot of this body pain, there's definitely the younger version of me, ignored by doctors, teachers, and even childhood friends. I also have to look after her and remind her to not minimize the pain, to acknowledge it, talk about it, and seek the treatment I know I deserve.

#EhlersDanlosSociety #EDS #POTS #HypermobilitySyndrome #DegenerativeDiscDisease #AutonomicDysfunction #ADHD #neuro #Fibromyalgia #MastCellActivationDisorder #MentalHealth

I tell people that I’m neurodivergent. #neuro

Hi everyone, I’m seeking advice and coping tips. I’m a first year college student at 25. I’m really struggling to handle the stress load. I am Autistic and I hyper focus really bad, and I will over analyze every little thing . I can’t stop taking one assignment and turning into a really over analyzed or over studied task. I take it all to the extreme and don’t accomplish other tasks I need to do. I also panic really bad over tests, and will make myself sick with anxiety thinking about a test I have to do and then mess up bad on the rest because I’m so anxious.

I also don’t have a therapist because my last one did something really bad and traumatic and I had to leave her. So. I don’t have that support either.

How do you all/did you cope with school? Especially those that are autistic or have adhd? How do you function when your brain doesn’t want to?

Hello my name is Levi I have a chronic illness I live with everyday I try to make the best of each day but sometimes it wears on you a lot. I’m also transgender female to male pronouns he/his

A common symptom of #Depression is losing interest in things you once enjoyed. But what if you don’t even remember things that were once enjoyed? Under treatment I was asked to describe a safe place to imagine or somewhere that makes me happy. I had no clue. I tried to make something up, but it apparently was obvious that it wasn’t effective. It was in prep for EMDR, treatment that I had been looking forward to for sometime. But after that occurrence I couldn’t go back. It just caused me more anxiety for not being able to have a place I can call safe and enjoyable. I was embarrassed and felt like I failed. I even asked my husband what I like to do that’s fun. He admitted he couldn’t think of anything.

It adds to the stress that I will likely never feel happy. I had a short taste years ago of what it may feel like to be #neuro -typical. I first agreed to try meds while in college. Prior I had tried, at the insistence of my mother, a homeopath doctor. In the end they told my mom I was too unstable and needed meds. WoW. So I ended up on Wellbutrin. I’ll never forget that moment in time, I was walking down the road after class, headed to my vehicle when I suddenly stopped. It was as if the windows were opened and the cloud cleared out. My words exactly were “whoa, I feel okay”. I found myself getting through tasks with more ease and less self-distractions. I was in shock when I sat and finished my homework from beginning to end without getting up. In fact it wasn’t until then that I realized what I did before. (randomly get up, look in a cabinet or refrigerator or do some other small task). But all good things come to an end I guess. I suddenly fell into a deep depression. I swore off meds at that time.

Eventually I realized I needed meds and began chasing for that calmness again. Wellbutrin was attempted on a number of occassions. Along with everything else out there. My latest combo has been celexa and Wellbutrin. It seems to keep me most stable. (When I most recently reintroduced Wellbutrin into my regimen I was surprised to notice I wasn’t #skinpicking . But just as before, it was short-lived).

I don’t know whether to keep fighting for calmness or just accept the fact that this is it. I have accepted the fact I’ll always be on meds, although I don’t like it. I don’t want my kids on meds, but already I’ve heard from the kindergarten teacher my son needs to be evaluated. No matter my choice I will feel guilty, that’s just how my mind works. Sometimes I feel cursed. 💜♍️ #CheckInWithMe #Fatigue #ADHD #FunctioningDepression #Anxiety #stuckinmyhead

Wanted to share a self care habit: #Icebath
Several reasons I do it.
1. Inflammation / #neuro -inflammation I began #Icebath for injury recovery; now I’m reading #neuro -inflammation is a factor in depression/anxiety.
2. Taking charge of my care... Something I contribute to my own healing.
3. It’s a personal WIN. Depression has robbed me of any physical outlets. But I put my bare ass in icewater for 20 minutes, once or twice a week, it’s an accomplishment.
Just my two cents, maybe it could help someone else.
Roll Tide!

When the only word that fits is despair.

Despair. Loss of hope. Someone or something that causes hopelessness.
Hopelessness. Beyond optimism.
When your life as you know it, is taken from you.

When being you is no longer an option.
No longer viable.
No choices.
Chained to the idea of overcoming the unconquerable.

Your body and soul detach.
Your mind is the only part of you left.
Your heart clings to hope.
But it's hopeless.

A tear as you slip under this force committed to drowning you.
Acceptance as you are pulled under.

And despair.
True despair.

When the life you know, is no longer.

#Depression #ChronicIllness #brainstem #neuro

Okay, so I've been off work for about 2 weeks now for increasingly bad symptoms that I don't if they are related to fibro, MS (which I go start the process for testing with Neuro on Thursday), problems with med side effects or what. I've finally admitted to myself that I should take a leave of absence until I get some kind of diagnosis and get stabilized. Mind you, this is after being in denial for months that everything would get better and I wouldn't be calling off work sick at least once a week anymore. I realized that I have to go off work and on disability in order to not lose my job or put my patients at risk because I'm forgetting things and could hurt or kill someone. I love being a nurse and I love working together as part of a team, but it's just not fair to anyone if they're having to always check behind me or pick up the slack because I can't keep up. It doesn't help that I feel useless at home, too, because it seems like every movement causes such muscle fatigue that I'm nearly always shaking now. Or off balance. Or irritated because I can't remember what I was trying to say or the names of objects or medications. I feel like I'm losing parts if myself so rapidly in the past couple of weeks that I won't know who I am at the end of this. And the only actual diagnosis I have at this point is depression. How is that going to help with my disability claim? I'm the primary bread winner in our house. If I don't get disability, we don't eat. And my daughter is set to graduate high school this year, and her brother will be doing the same next year. I don't want to let my kids down and make them miss out on important memories. I guess what I'm trying to say is that I'm worried. About everything. And it's exhausting. Thanks for letting get this out. #neuro #Anxiety #Disability

In November and December I was admitted to hospital when I lost control of my own body.
To begin with, the doctors and nurses at hospital and my gp told me it was anxiety.... Until I ended up in a wheelchair...

Double vision, paralysis, couldn't hear or speak, numbness.... I eventually felt like I was just 1 single eye on a hospital bed.

A scan showed inflammation on my brain stem.
Things went from bad to worse, it got to the point that I felt ready to give up. I told my mum "by tomorrow I won't be able to speak anymore, so if this is permanent, I'm not doing it"
I came face to face with the possibility that I was going to lose my life, or at least my life the way I knew it.

From being pushed in a wheelchair, to walking up hills in my favourite rural spot, in just over a month, seems like a miracle, my life was handed back to me.
There's still a long road to full recovery and I'm not safe yet.

But I'm so thankful to the doctors and nurses who helped me.
In a strange way, I feel as though I've been given the chance to live with a new perspective.

And with this new outlook on life, I'm not looking back.

#brainhealth #brainstem #neuroscience #neuro #live #Life #itsnotanxiety #bepersistant

There is something about the world we live in that continues to bother me and I know I need to continue to speak out about it. Why is it that the society we live in continues to seek out and prize individuals who speak quickly, loudly, and aggressively? I'm so tired of feeling like I need to speak quicker, think quicker, and be different when the way I am is slow, methodical, and thoughtful..and I know I have great ideas and powerful points to bring to the table but why is there only one presentation of ideas that is prioritized over others...having to take a second to gather myself before thinking is important so I don't just ramble...Its also extremely triggering when someone tells me Im running out of time when I'm trying to articulate myself...especially when they know what I've gone through...Idk I'm just irritated and over it. Neuro-diversity is a beautiful and powerful thing...neuro-ableism is NOT...why do people keep trying to prioritize one type of thinking/speaking/processing over another...ugh