#fibro has me getting weak in the knees (literally)

[thelocalweird]

I have to do some tasks that require me standing up but my fibromyalgia is flaring up in my leg again and SHIT! it hurts more with every step

[justcaytlin]

How It's Going

So I figured it would be worthwhile to talk a bit about all the procedures and stuff I've been undergoing. Keep y'all in the loop, as t'were.

Background

To start, the reason I've been in and out of doctors so much lately is that I have fibromyalgia, which means my nervous system thinks every stimulus should be reported with Pain. Are you excited? Pain. Cold? Pain. Tired? Pain. Digesting? Pain! And it's always pain in weird areas. Did you use your wrist too much while you were drawing? Enjoy your left foot hurting, buddy. Or your knee. Or your temple. Quite literally, I did not know that people could be Not In Pain until a conversation with my husband a few years ago.

(Note: Fibromyalgia is not a disease so much as a bucket of symptoms with a variety of causes. One person's fibro may be very different from another's; this is how mine works.)

Generally, after years of hunting down med combos and enforcing lifestyle changes (regular sleep schedule, eating well, maintaining a schedule, etc) I had been sitting at a respectable 4/10 pain scale day-to-day, which is pretty mild all things considered.

Pain is easy to deal with. Unfortunately, fibromyalgia also comes with brainfog, where you can't remember things, and everything slips your mind constantly, and you feel like a sieve and you constantly worry you have early onset dementia. It also comes with chronic fatigue, much like when you have the flu. So you get up to do something and it feels like all of the energy drains out of your muscles and you feel heavy and slow and like you want to lay down just to get enough energy to move again.

As an example, showering has been very hard on me. Usually after a shower -- a quick shower! Or even when using my shower stool! -- I am shaking and weak for up to an hour afterwards.

Reason for Going

In the last six months or so, both the brainfog and the fatigue were getting increasingly bad, so that I could barely do anything at all. I was falling behind on a lot of work-related things, I couldn't help my husband with chores or food prep hardly at all, I couldn't even deal with the energy sap of seeing people very often.

Finally, my friend was going to a research institute nearby for Ketamine-Assisted Psychotherapy. And I thought, man, I've been wanting to try ketamine treatment for years. I've heard it works wonders on chronic pain. I should try it.

So I did a lot of research, and I dove in.

Phase 1

I contacted the institute about their ketamine infusion therapy, which is geared toward chronic pain relief. Ketamine's underlying functions are still not completely understood, but in layman's terms, it seems to give the nervous system a chance to reset and relax, undoing a lot of that sensitivity that makes fibro so hard. This sounded amazing and like it's exactly what I need.

So I went through several intake and screening appointments. I was approved, but both doctors recommended that I was a perfect candidate for KAP -- Ketamine-Assisted Psychotherapy. After all, my fibro is almost guaranteed to have come from trauma: when your flight system is active 24/7 for almost a decade, it makes some fundamental changes to the wiring. Plus, I've been diving deep in therapy for the last couple of years, and it's helped a bit on the pain side as well.

But I wasn't certain the ketamine would work on me -- there's never a guarantee -- so I wanted to stick with what I signed up for, for now.

I went in for my appointment, got the IV in, laid down, and was whisked away into a nice little trip for an hour and a half or so. Sounds smeared together. I felt out of my body, yet in it. Time smeared and collapsed in on itself. I felt disrupted, but gently and kindly, taken away into another timeline. I saw lots of shapes and patterns -- subtly, on the back of the eyelids.

I went home after that, and I rested. And the next day, my pain was reduced. It felt like there was a little bit of a cushion between the pain and my senses. My energy was back! I went from "maybe I can stand long enough to cut up a tomato for dinner, I'm not sure" to "okay I've cleaned two rooms, we should be good for guests now." I wasn't 100% by any means. I still fatigue early in tasks, I still felt pain. But it's like the clock turned back months or even years. Holy shit!

Phase 2

I decided that if I was going to do this, I was going to go all in. Therapy had worked wonders before; I was gonna switch to KAP like they suggested. The doctor also suggested I try a Stellate Ganglion Block, wherein they bathe your nerves with anesthetic, which gives your sympathetic nervous system a *direct* vacation. I signed up for that too.

Unfortunately, switching to KAP meant that I needed to undergo more screenings and intakes. And the Ganglion Block also required more screenings and intakes. So my actual healing journey was put on hold for two weeks as I attended more doctor appointments.

Finally, I was able to do my first KAP appointment. You basically go into an office and get set up in a reclining chair full of blankets and pillows. They give you a special eyemask that is raised, so you can keep your eyes open if you want, but it'll be completely blacked out. You wear headphones with music playing. The doctor/therapist stays in the room with you, and if you happen to say anything during your trip, they record it. But otherwise the purpose is just you laying back and letting the medicine do its work. A nurse comes in and administers the ketamine -- for KAP it's intramuscular injection instead of IV. And then in 2-5 minutes, you'll take off. I think for me it was 1-2 minutes.

Ketamine is weird, man. The main *feeling* I take away each time is that I've jumped timelines. The person I was going in is not the same person coming out. It's always a benign feeling (so far?) but it takes you so completely out of your body, your self. Who you are dissolves for a while. It's wild. There's a big chunk of time I don't remember, and then I remember wondering who I was, what I was, what I was doing, where I was. Not fearfully, just, "huh, I should probably know this, huh". Then there was a lot of beautiful imagery of dancing in nature, vibing to the music, twirling in leaves and on lakes. Lots of imagery that is, like, hand-picked to be something I'd paint from scratch. There was some spiritual stuff too, but that's personal.

After a while, I was a tree. I had this feeling that even though part of me had rotted (the good kind of rot, somehow), I was providing lots of ecosystems for others. There was this overwhelming feeling of even though there may not be a reason for something (having fibro), we can still find meaning in it. That was valuable.

The other feeling that's still echoing through me right now is the feeling of being a seed. Like, I'm currently in incubation. There's a transformation coming but right now I'm storing all of my energy and taking in the change.

As I started coming out of it, there were two amusing things.

I could still feel parts of my body as being a tree. I was fully cognizant at this point that I was me, on ketamine, in a doctor's chair, but I was waiting out the rest of my body feeling like My Body again. Like, okay, my body ends at the elbow there, but the rest is branches. Better wait til I feel my fingers again.

I was wondering what I was supposed to do when I came around? We hadn't discussed this. Do I say something? Do I pull off my mask? Do I make a grand announcement? What if I just lay here for hours and avoid this confrontation entirely? What if I was under way longer than anyone else? #social anxiety lol What I ultimately did was I listened to the music and visualized things until it felt like the "soundtrack" was winding down and I could pick out a "credits" song. When the credits song ended, I made myself pull off my mask, and the doctor greeted me.

(One good thing about therapy, medication, and experience with social anxiety is you can feel those thoughts, but also go 'bro it'll be fine lol' and your system largely believes you.)

Anyway, after, the doctor asked me some questions about how I was feeling, what I saw or felt or experienced, etc. She took notes, then let me lay there alone for about twenty minutes to come more fully back to myself. Then she helped me waddle to the bathroom (ketamine messes with your inner ear like crazy) and took me downstairs to meet up with my friend for the ride home.

A week later, I had another appointment with the doctor to integrate everything, talk about everything I experienced or said in the sober light of day.

Phase 3

After that, I got the first Stellate Ganglion Block done. It's done in two phases, your right side and your left side. I wrote about this experience already, but I will say now, a week out from it, that this was a fucking miracle. The KAP and the IV helped a lot with energy and such but the block took my ambient pain from like a 3 to a 1-2. I genuinely wonder if this is what normal people feel like most of the time?

I can tell there's a difference between my right side (that had it done) and the left side (which hasn't been done yet). The left is far more sensitive. But, for example, my sciatic nerves are extremely sensitive to the touch, and generally if I press on them a little bit, I will legit want to cry. (I have very high pain tolerance; i would call pushing on them like an 8.5 on the scale, where 10 is when I was at the hospital for a kidney stone, screaming and crying and thrashing while I was waiting for pain meds :') )

They still hurt, but my right one is more like a 6 instead! That's HUGE. That means I can actually tolerate it long enough to roll out my nerve with the foam roller.

I'm getting my second block done tomorrow. I can't wait to see how it feels after.

Phase 4

After this week, my appointments should slow down a lot. My KAP appointments are two weeks apart, to give ample time to reflect and integrate and let my malleable brain resolidify. The downside is this is slower than I expected -- I thought it would be 1 a week -- and so I'm not positive I'll be back off hiatus on my birthday. It depends on how the next week or so goes.

Right now, I've just been hanging onto the bumper of a car speeding down Appointments Highway and I have barely had time to gather my energy enough to think about much else (besides D&D apparently lmao). By the time I'm done with KAP I will have knocked out some 20 appointments or so in a month and a half. Considering in the past I had to restrict doc appointments to 1/week due to how exhausting and hard they are for me, That Is A Lot.

But they're doing me some good. I'm incubating. I'm percolating. And soon I will sprout.

[weebsinstash]

How are you so awesome and wonderful? I have joint pain from fibromyalgia so my condolences to your hands T^T Your bnha shouta brought me here. Do you think All Might would be into receiving oral from his precious darling? Or would he be too scandalized?

Oh, thank you so much for the support ❤ and hope you feel better yourself, my mom has fibro and I know it can be rough :( on my end it's been... slightly rough recently, to be honest. we're still trying to find out exactly what's going on with me since my RA test came back negative, but my sed rate did come back elevated and I'm having a lot of arthritis symptoms and I mean like a L O T. The other day for work I had to take a bunch of ibuprofen before my shift fully started because curling my hand around/gripping/applying pressure with my tools literally made my hand feel like it's broken. I'm talking "I tried to spray febreeze on uniform and squeezing my hand made me cry out in pain" kind of sensitive, though thankfully it seems to be the worst in the morning, and it's the worst on my dominant hand so I can kind of switch off but they're both kind of sore. So yeah, trying to look into it and stay positive. I actually got a referral to a rheumatologist that I see today so hopefully he can help me out because the hand myalgia specifically has come on and intensified really quickly and we are lowkey approaching "im not even sure i can hold a job without being medicated" status if this turns out to be permanent

BUT ANYWAYS (sorry I'm answering this so weird, just kinda wanted to give a quick update on my situation)

I like my Toshis tender and sweet; I can easily see All Might getting embarrassed if you came on to him but would do nothing to "stop you". He's all flustered and hot under the collar as you start putting the moves on him, all "whatever are you doing my love 😳" and gently telling you you don't have to if you don't want to (or can't; he's a big boy to fit in your mouth) but when you finally get in his pants, he's hard as a rock and dying for you to touch him. He's just been SO overworked, and although he could never bring himself to burden you by making the request himself, it would be oh so lovely if he got just a little pampered himself for once 👉👈 suck his cock, fondle his balls, tell him he's handsome while you're wringing out an orgasm that leaves him weak and shaking in the knees. He's a simple man with simple needs, and you should really show your gratitude for all the hard work he does after all~. But, if you can't fit him in your mouth, even just giving him little licks and kisses to the tip and praise will still be enough to turn him into a cherry-red blushing mess. Just be sure to bat those pretty eyelashes up at him and be extra sweet and he'll be wrapped around your finger

[wanderlustyyg]

#Repost @chronicallyillgoddess (with @report.for.insta) ... Something that is commonly misunderstood is how extreme, widespread and intense endometriosis and adenomyosis pain is. I’ll be saying this till the day I die ‘NO, IT’S NOT JUST A BAD PERIOD!’ These diseases affects everyone differently but for majority it affects us everywhere. I have cross marked my body where I feel the pain the most, but it is quite literally my whole body. I’m so weak from the high intensity pain I can’t even move my arm or leg. I feel it in my head from migraines, it has been a main cause of my crippling depression, I feel it in my shoulders, my heart, my chest, of course my pelvis, I have 11/10 pain specifically on my right side and it radiates all the way down to my foot, my left side I still get extreme pain till my knees. I also suffer severe back pain and along with the pain comes crippling nausea, loss of appetite, irregular and extremely painful bowel and bladder movements, feelings of faint, not being able to stand up because I’m too weak, not being able to even hold my phone because the pain is excruciating, the extreme fatigue and brain fog, and the only thing I can confidently say takes or minimises the pain is heavy painkillers such as tramadol or endone but sometimes that’s not even enough. That is what real endo and adeno pain is like! It’s compared to child birth, some saying WORSE than childbirth, and I mean if that doesn’t explain how insane the pain is I don’t know what does. Never underestimate us when we say we are in pain. And it’s mostly every day. We truely are suffering and we need to be heard. We can’t go off relying on heavy opioids and birth control but unfortunately that’s all we have. And that’s not an opportunity to mention trying yoga or rubbing some kale oil on my stomach, because trust me we have tried everything, we WANT to get better! We just don’t have the treatment we deserve and that’s where spreading awareness comes around 💛🙌🏼 #endometriosis #adenomyosis #endo #adeno #ibs #chronic #chronicillness #chronicpain #nocure #oneinten #qendo #fibro #fibromyalgia #scoliosis #autoimmune #autoimmunedisease #painwarrior #endometriosisawareness #awarene https://www.instagram.com/p/B2HsuNeHH-I/?igshid=1lxbquj25gtme