SmugZobug

16 y/o artist! ~ Chronically ill and online

[smugzobug]

New undiagnosed spoonie here. I suffer from all kinds of symptoms.. neurological, gastrointestinal, musculoskeletal.. literally everything. I’m nervous I’m making it up in my head.

If anyone wants to try to play doctor go ahead.. esp if you have similar symptoms to mine and you’re diagnosed -

All Possible Ailments

Background:

16 y/o 160lb female with precocious puberty and short stature (4’11). Started developing breasts at 7 y/o, started menstrual cycle at 9 y/o. Suffered from heavy menstrual bleeding, ovarian cysts, and an enlarged uterus before prescribed birth control. Diagnosed with asthma and allergies to cats, dogs, horses, beef, pork, lamb, walnut & pecan trees. Has always been sick as a child due to preexisting conditions but caught the flu and strep back to back 5+ months ago and never got better. Many labs have been done & most come back completely normal. I made this document in hopes of finding out what’s wrong, because something is really wrong.

All Symptoms: Greatest —> Least Bothersome

Severe Fatigue

General feeling of malaise and extreme discomfort

Trouble walking for 20+ minutes

Trouble standing for long

Pre-syncope symptoms after standing (sometimes)

Joint pain (commonly in knees, ankles, toes, and wrists/knuckles)

Extremely sensitive to sound - will cry

Hot flashes (especially when doing any psychical activity) and always sweating

Joints feel unstable, making it harder to walk

Urinating and having fecal leakage without feeling or realizing it

Brain fog, trouble remembering some things

Heat intolerance

Excessive sleepiness

Excessive weight gain despite decreased appetite

Extreme muscle soreness after overdoing it (sometimes delayed muscle pain)

Headaches & Migraines

Back & hips start to hurt after standing for so long

Thrashing, kicking, and crying in sleep (I once called someone in my contacts list two times in my sleep, and I’m not even friends with her anymore)

Constant switch between constipation & diarrhea (sometimes both)

Horribly painful abdominal cramps before having to defecate

Anal bleeding: bright red blood after bowel movement, sometimes a concerning amount & prolonged without pain

Extreme bloating after eating (sometimes to where breathing is a task or painful - less common now due to my decreased appetite)

Nauseous after eating

Easy Bruising

Purple/pink, wide stretch marks from rapid weight gain

*I’ve been told that since my symptoms are multi-systemic that it’s likely I have more than one condition afflicting me.

Edit: Tests that have been done:

The basic tests : vitamin levels and stuff - only vitamin D is low

ANA - neg

CRP - high

Full thyroid panel - clear

Full hormone panel - clear, except there’s little to no estrogen in my body & I had high cortisol

UC - neg

CT of abdomen (looking for kidney stones) - clear

MRI (of my brain) - no results yet

I went to the hospital once and they took a lot of blood from me and everything came back clear, not sure what they tested but it was about every common-ish thing probably. They just told me I had post-viral fatigue syndrome. 🙄

What I think might be wrong :

Cushing’s Syndrome

HSD

hEDS

POTS

GI Dysmobility

Narcolepsy

SIBO

IBS

Pelvic Floor Weakness

Pelvic Prolapse

+ Probably more Im just not thinking about

Im very desperate for any answers. Even if your opinion isn’t professional I’d greatly appreciate it. Also, if you know of any accommodations that could make my life easier please share. 🙏 I’m currently homebound from school and I have to do PT. My girlfriend misses when we could do things and go out places. I can’t even walk without pain during/after and extreme discomfort. 💔

[smugzobug]

So I got pyloric botox for my gastroparesis 3 days ago.

It doesn’t immediately show improvement (it takes 1-2 weeks to see if it even works at all)

My throat was really sore though because they intubated me and put this thing in my throat so I wouldn’t aspirate because I’m at higher risk due to my gastroparesis.

Not a horrible surgery though and no abnormal pain in my stomach from the injections.

I’ll update you guys on if it works or not. I don’t feel a difference so far. Let’s hope it helps and I can move on to more permanent/long lasting treatments.

[isuggestlandback]

If you ever wondered why they call tattoos and piercings "unprofessional" and "unsophisticated"

Source: Lainey Molnar

[smugzobug]

Just got diagnosed with POTS. I’m really happy but also like idk.. why did it take so long? At least it’s on my chart now.

Here’s a drawing I made representing it.

[smugzobug]

I got a shower chair very recently and I’m going to be getting a cane + manual wheelchair (not custom but hospital kind)

While that’s amazing, I feel like I’m dying.

My body really has been trying to be normal for a long time but now it’s giving up. I can’t barely walk anymore despite being the strongest I’ve ever been. I was delirious last night (my family believe it’s because I’m not eating or drinking enough because I’m sleeping like 24/7 now) and I couldn’t do anything but lay there. I was so weak I couldn’t pick up my phone.

Right now I still feel weak but since I forced myself to eat and drink water I feel better. It just hurts when I do and I hate it. I guess this is because of my FND but I feel like I have 2 left hands and feet.

I hope my mom comes to terms with my disability soon and buys my cane and wheelchair because i’m at the point where I cannot go out and I’m bedridden.

I always think it cannot get worse but it does.

[smugzobug]

ive only learnt about this recently but maybe look into lipedema, it could give you some answers on the weight stuff :)

If I have lipedema I’m not sure how useful it would be to get a diagnosis since it would just be stage 1 for me. Thank you a lot! ❤️

[smugzobug]

Today I was diagnosed with Functional Tic Disorder which is apart of FND.

Any advice from people with FND?

Should I get a mobility aid?

[smugzobug]

I had a nice little trip the the ER yesterday. 😭😭

They think I have Functional Tic Disorder after consulting a pediatric neurologist and discharged me the same day. Without performing an EEG or any MRI + CT… I don’t know if that’s a red flag but I do live in a health desert so they probably didn’t want to “waste” resources on me.

This is how it happened:

I had a really weird episode where I couldn’t walk properly. My legs were shaking a lot, especially when my knees weren’t locked, and they felt like they were giving out or jerking. It was both legs. When I stood still or tried to walk slowly and carefully, it was worse.

But the strange part is that when I walked faster, it completely went away. I was even able to run normally for a second when I needed to, and the shaking stopped during that. It also got a little better when I distracted myself like counting, but fast walking helped the most.

I don’t feel especially fatigued during it—instead I feel kind of jittery or energized. This started a few hours after I exerted myself and had a episode of low blood sugar, and I had a couple days before this where I had dizziness, vision changes, and headaches.

It continued the next day when I woke up. It progressed and was full-body jerking, like tics. I will attach a video of it, and image of what the evil student doctor did to me.

This is what the pediatric neurologist wrote after the conversation with the ER physician:

Call from [the hospital I was at] ED about Zoey and abnormal movements that are described as tic-like, non-rhythmic jerking of all extremities, which are out of phase and briefly suppressible. There is also jerking of the trunk and head. This occurred following recent scope and then again this weekend. Her mentation is at her baseline and is not impaired, and she can communicate through these. There is no reported history of tics in discussion with the ED. When walking, she has frequent jerking movements so that the ED provider follows behind with her hand nearby.

A/P: Zoey is having patterned, non-rhythmic movements of her extremities, head, and trunk with preserved awareness, which, by report, are most suggestive of functional tic like disorder, given their sudden onset at 16 years of age without a history of tics. With this phenomenology, no medication changes are recommended, but she may benefit from psychotherapy. For further investigation, family is instructed to video the events for review. Family or personal history of tics can also be queried. She has an upcoming appointment with [My Neurologist] in 9 days to concretize plan.

Has this happened to anyone else before?

[smugzobug]

I did a full active stand test with my mom and here’s the results.

From the BP machine:

laying for 10 minutes: 114/81 pulse 81

—Standing for 10 minutes—

104/82 pulse 99

116/90 pulse 116

123/96 pulse 124

105/63 pulse 105

119/102 pulse 127

From my continuous heart rate monitor:

7:59:24 PM - 24s - 86 delta - 140 (first initial spike)

8:07:54 PM - 10s - 113 delta - 130

8:08:09 PM - 25s - 113 delta - 133

8:15:29 PM - 5s - 119 delta - 130

8:16:18 PM - 41s - 118 delta - 135

So where’s my diagnosis? 🥹

[crippled-peeper]

“If you don’t want ableist harassment you should explain yourself more carefully” “if you don’t want ableist harassment you should not complain about how ableds talk about you and treat you” “if you don’t want ableist harassment you should calmly educate people”

what if… and this is REALLY crazy… you left us alone because we’re PEOPLE…

[smugzobug]

The hardest thing about having a chronic illness isn’t being sick.

It’s the world not being made for people like you.

It’s people, even family not understanding or dismissing your suffering.

It’s ableism.

I would be able to cope so much better with my illness if it didn’t change how people look at me completely.

[smugzobug]

I just got diagnosed with gastroparesis.

51% of food left in my stomach after 4 hours.

This is a very bittersweet feeling.

[remingtongoespunk]

As a chronically ill person, I feel as though my perception of death is different than most.

I have gone to the ER numerous times due to suspected heart attacks/problems. Each time, the doctors found nothing. More often than not, chalked it up to musculoskeletal pain - the same pain affecting the rest of my body on a regular basis.

When death comes, I will be both more prepared and less prepared than most. More prepared in the sense I have been ill for as long as I can remember, and understand the possible pain one could feel when dying. Less prepared, in that I will not know when something is fatally wrong. The chronicity of my illness makes most acute issues difficult to determine. For this, I have always been petrified of death.

One of these days, it will be a heart attack, or a stroke, or whatever else could possibly go wrong. And I might not know. I might believe this is just what living feels like.

I might believe dying is what living feels like.

[smugzobug]

I might believe dying is what living feels like sincerely hits where it hurts.

[smugzobug]

I have like no quality of life anymore.

Is this POTS?

[smugzobug]

I have no idea how to tell if I’m sick or just flared up.

[smugzobug]

I did an aggressive bowel clean out as advised by my gastroenterologist.

I drank a whole bottle of magnesium cirate, took a laxative pill, and drank 64 ounces of gatorade with 6 cap fulls of miralax in it.

In theory, I should’ve felt relief but honestly I just feel worse. She said she’d do more tests for me if it didn’t work out.

So I guess next I’m getting a gastric emptying test.

Honestly it’s so bad anymore that eating is just a complete hassle and it hurts me afterwards without fail. It’s like I’m constantly nauseous too. I feel like a balloon. I’m so miserable.

Is there anything else besides gastroparesis that can cause this?

[smugzobug]

I had a really, really bad and painful episode today.

So I went to physical therapy and they have me doing this thing called circuit training which is basically doing a lot of workouts with no break. They give you a little break like a minute or 30 seconds but after that you continue. It’s supposed to help build your endurance.

They had me doing squats, walking up stairs, marching in place, swing this dumbbell to and fro, do bridges… I swear each time I thought it would truly be the time I kissed the floor. I know this sounds stupid and silly but I was too nervous to tell them it was too much.

Near the end my muscles actually started to give out and i was failing at doing them so she let me stop but by that point it was too late. I had gotten to my car and felt so nauseous even though I hadn’t ate. I was in just pain too: and not in a specific spot or anything. It just felt like I was so exhausted and drained that it was geniunely painful.

I felt horrible like so bad. Worst pain in my life and it wasn’t even something I could describe. My grandma of course didn’t believe me. I was just crying and i don’t even know why I just couldn’t help it. I searched it up and apparently it was my autonomic nervous system shutting down.

Has anyone else ever experienced this?