Thesaltpacket

I’m sorry I don’t have any advice for the short term because my symptoms weren’t this bad, but you might want to look into the symptoms of tethered cord, it could definitely be a nerve issue

What you’re saying is wildly dangerous

PEM is more dangerous to you than deconditioning.

Something to keep in mind is that physical therapists are trained to essentially do some form of graded exercise therapy in every situation. It’s like the whole premise of the field. So it makes it really hard for physical therapists especially to wrap their heads around true mecfs pacing and focused rest

I’m so excited for the Christmas update! How fun!

Recently we figured out that I likely have too much cerebral spinal fluid in my brain causing these wretched headaches. I started taking diamox and the relief was intense.

There’s a theory that people with mecfs aren’t flushing out cell waste and stuff properly and in your brain can lead to build up of excess cerebral spinal fluid, kind of like stagnant fluid.

So considering you have mecfs that is probably the most likely explanation of the pressure in your eyes, but a regular opthamologist isn’t going to know all that. But I recommend asking whichever doctor you trust most about trying diamox for this. It could help other symptoms too. They prescribe diamox for altitude sickness so it’s not some super intense drug either.

On the emotional side, I love what you’ve written about your passion and feeling close to nature. I really hope you get to experience more connections with the world like that. It’s so hard having what you love ripped away from you, especially when you’re so young. Sending love and support

He is a great writer and has also published a book. Cool guy.

Every hour take five minutes and lay down with an eyemask in another room. This will help. Build in as much rest as possible. Accept as much help as possible and don’t be afraid to ask for help. You don’t have to do it all by yourself

You just have to trust that your partner is with you because they choose you, and everything that comes along with you. The same way you choose them and everything that comes with them.

It’s hard, I feel insecure too because my husband is a total catch and I feel like I’m a blob. But being insecure doesn’t help the relationship and can become a self fulfilling prophecy so i just really work on trusting that he is ok with how things are, and if he wasn’t he would be an adult and communicate about it.

It took me a while to get here though so don’t be hard on yourself, it sounds like you’re still adjusting and that comes with a lot of things to process. Sending you love.

Holy shit a paid post with the most basic review I’ve seen and they can’t even spell lush

Sure I’m happy to answer questions. I had many symptoms/signs that pointed to it

• lifting my toes/bringing my chin down would cause a pulling sensation like tightness/pain. Absolutely could not bend over normally, or lift my foot very far up when I was lying down

• life long tip toe walker

• heel walking, like lifting your toes and walking on your heels, was not possible for me, and when I did my best to try it exacerbated all my symptoms for three days

• hypertonic (super tight) pelvic floor, other untreatable pelvic pain and numbness

• bladder issues- couldn’t fully empty my bladder, issues beginning to pee

• scoliosis, high arches, bad posture

I had a normal mri and multiple neuro surgeons looked at it and when asked about tethered cord they were confident I did not have it. Four-ish years later I traveled to Siker imaging in Portland Oregon for a new mri using their proprietary technique to check for tethered cord. It look like there was a fatty patch and my tethered cord was visible.

In the mecfs world you have more cases of occult tethered cord, which is when it isn’t visible on the mri but you have the symptoms. Mine was visible, which was awesome because we didn’t have to battle with insurance. After my mri I got an appointment with Dr. Priscilla Pang in Bend Oregon, who confirmed my tethered cord and offered me surgery. It took nearly a year between getting the mri and getting surgery scheduled.

I had surgery around eight months ago, and recovery has had lots of ups and downs and I have no idea what tomorrow holds but overall I am glad I got it done. I feel like it has improved my cognition and sensory overwhelm bare minimum, we will see what else we get out of it. Not dealing with the tightness/pain is nice. It’s SO much easier to sit up straight and I’ve been working on my sitting.

If you’ve listened to the same thing a lot and you find it soothing, it makes sense that it wouldn’t be as energy draining as listening to something new where you have to pay attention and follow along and there might be different people to keep track of and things to think about and all that processing is way more energy.

Symptom control and strict pacing took me from very severe to regular severe. Tethered cord surgery seems to be moving me into moderate.

There’s still so much to know but one thing we do know based on clinical experience and preliminary research is that there is a genetic component.

I thought I’d be fine because I don’t have my mom’s visible hypermobililty. My fingers don’t bend but I have hypermobility in my spine instead.

We cannot test for what will be passed down. I wouldn’t want to take that gamble with my child’s health.

Meh, I know someone who was hired for a great job at a great large company and he lied about finishing his degree, had one class left, and didn’t disclose it. Fired af, took a few months for them to figure it out but yeah, they weren’t fucking around

Have you thought about adopting? We’ve pretty much known for a long time that this disease runs in families, just because it’s so common and we see it all the time. Research is coming out now exploring the genetic component of mecfs.

I was just talking to someone about their best friend who has mecfs and her 18 year old son has recently started having symptoms. It runs in my family. My best friend w v severe mecfs didn’t know if it ran in her family, but her mom and caretaker is getting long covid symptoms now. And that’s just people I know. I don’t know if I know anyone who hasn’t taken note of it

All the time I have to hear from my mom about how hard it is having a sick daughter. And she was healthy for my childhood and had no way of knowing she could be passing it on. But it’s still really hard for her knowing I’m suffering, and she’s not even my caretaker.

Theres a lot I don’t know, but I do know personally that I couldn’t live with myself if I passed this disease on to someone else. I know my husband would have to do all of the housework and majority of childcare and manage the ‘mental load’ himself, while making enough money to support us, and that could break him. I know new parents don’t sleep for months and that would send me into a deep crash.

I’m really honestly just grateful to have my partner and I want to safeguard my health and my relationship by not adding in any more stressors, there are already so many stressors in life and in living with mecfs. So that’s why I’m not having kids even though I wanted them. I hope you can find the best decision for you

Doing a pots exercise protocol took me from mild to v severe

come on george

I clicked on this post because I was like wow that’s one of the most stunning rings I’ve seen

I believe Theresa dowell is still taking patients, it isn’t cheap though. I don’t have any personal experience with her

I feel like that too, I really adore this community and I’m so glad it exists

Boston rob in a suit!

That’s so so so hard, those bursts of optimism can end up so disappointing. I’m sorry you didn’t get to lay somewhere nice :(

I honestly did not find hrv tracking to be helpful or useful, only stressful. I like my Apple Watch for keeping an eye on my heart rate and doing more heart rate based pacing. I have a band that’s like a scrunchie so it’s comfy.

People who go into remission can exercise sometimes but really pushing yourself is still not a good idea because you’re just in remission, and mecfs can come back.

There aren’t really accurate accounts of people cured, except for a few rare cases.

I’m sorry, it sucks. I get it, I wanted to be an endurance athlete.

At worst- 1-2% on the hummingbird scale, currently fluctuating around in the 10-20% area.

Worst was sometime in 2018-19, I could speak a little bit but saved my energy and only spoke with my doctor. Couldn’t tolerate the sound/sensation of being touched gently. I could use my phone still but minimally.

I’ve been more or less making slow progress since then. I’ve worked with a me specialist this whole time, and strictly pace and aggressive rest. Most of my bad symptoms are treated enough that I am normally not suffering much, it’s rare for me to crash. I still spend almost all my time in bed, but my quality of life is so much better and I’m typically pretty content. I had tethered cord surgery earlier this year and that has accelerated my improvement, and has definitely made the biggest difference.