u/FrighteningCrow

So, it's been almost half a year since I've started having PNES. And now, I have issues grabbing anything and developed tics and tremors in my right hand. I'm on my fourth freaking referral to a neurologist that specializes in PNES and FND but they haven't called me yet. Personally I'm doing fine and just going along with it but I'm needing support. Because I don't know how much longer I can take without blowing my lid. Is it always this hard going into a neurologist???????

I HAVE A GI APPOINTMENT!!!! Next month, I'll be able to talk to a gastroenterologist about what's happening and hopefully figuring it out. I am very limited in what my body can handle and I'm starting to rapidly loose weight. I take two bites of any solid food and feel like I'm full. But I have been forcing myself through it just to eat SOMETHING. And protein shakes with almond/soy milk are a staple in my diet. But im hoping I can get an answer quickly!

I know this is one of the subs I can talk about this to even though this might not be "ablism" per se.

I was recently talking to my older sister (who I have very low contact with) about stuff going on in her life and she asked me about mine.

I have been having some hard times getting into a GI specialist (win! I have an appointment) and a neurologist. For the neurologist it's been nearly half a year experiencing PNES or psychogenic non epileptic seizures daily and I have been denied by all three and the fourth one still hasn't called to set it up.

But my sister went on and on about how "big pharma is poisoning us" and "you should stop your medication immediately."

Thing is, I have been diagnosed with HEDS and fibromyalgia and my pcp thinks there might be POTS and FND and I think I possibly have gastroparisis. My medication helps me with my pain and helps me sleep without three hours of pain management. Then, she said that I should stop doing the thing that is getting me nutrients (I drink protein shakes because I have one hell of a time with eating solid food and barely able to get ANYTHING in my stomach without having neausea and dry heaving and rapidly losing weight) and said I should try drinking smoothies with all these ingredients I HAVE NOT BEEN ABLE TO EAT instead.

And as much as I love my support group, she is definitely one of the ones that exhausts me because she won't listen to the fact that there are things I simply cannot do or can't eat and says that I'm making excuses while simply telling her that I just.... can't. If I'm in my wheelchair or with my cane she says I'm being dramatic. And I know I don't owe anyone an explanation but it's like... please can we stop commenting on how I'm "letting myself go" when I am doing everything in my power to stay healthy and despite my pain, doing the things I have to do???? I'm exhausted having to tell people that I'm sick and have a lot more to worry about then their options of "eat healthy" and "do yoga" or "have you tried taking vitamins to cure your pain disorder?"

So. I'm completely no contact with most of my two families. I am adopted and some is a consciouschoice... some is because of deaths and stuff. One of my brother's wife thinks it's chill just to tell my family everything even though i want nothing to do with them. And my oldest sister gives them every tiny detail.

Well, yesterday, I was at my doctor's office and I vaugly heard a voice that sounded like my adoptive mother so I turned to look and saw her and my Gmail on her side.

All the memories came rushing back. The time I was seven and she called me a wh*** After seeing me talking to a family friend's boy about play dates. The times my knees subluxated and she yanked them in without any medical intervention. The times she would call me fat or undesirable.... the times that were probably SA.... my grandmother making fun of my clothing.... the time they all laughed when a cousin's partner raised his hand to hit me. All of it. And im still having those memories. It sucks. Anyone know what kind of stuff helps them calm down or in a sense forget the memories?

So five months ago, I started having unexplained daily seizure like activity. I went to the ER and my PCP for them and have tried to fully figure things out. My pcp sent three referrals so far to different places. I am currently waiting on one that deals in PNES or FND, since we don't know which one it is.

My symptoms are pretty scary and thats where the content warning is. I'm really shaky a lot, my head gets really fuzzy and I start twitching after a few moments. We ruled out epilepsy because I don't behave the way most do with the postictus states.

However, I am just waiting on referrals and not fully sure how to navigate my day to day life while these happen. And I haven't met people with things like this or know if my situation is common or not.

Hi! I'm 26 female and I'm hoping to find siblings, aunties, uncles, and even open to grandparents too.

I love to read books and listen to music. I'm getting back into my writing and I have a puppy. I love to help people and love to be a friend. I'm a hopeless romantic and want to romanticize my life and be whimsical but also i like to look like I cant be ruffled by anything. I like to dance and watch movies and i want to act and model. I also want to make people happy and give them hope.

I am chronically ill and sometimes feel like I need sleep or won't answer much on flare days and I work for a little of the week. I want to draw but I've never really been good at it. I sew and like audiobooks and tiktoks and making something of myself.

Idk just thought I'd try posting instead of lurking.

I had a bad experience when I was 18 regarding my first boyfriend. He took advantage of me and the fact that I ran away from another abusive household. Sexually abused me a lot.

I say all this because I want to know if anyone else has seasonal PTSD attacks. Right up until August I start having tactile hallucinations of him hitting me and having nightmares about the biggest attack, where he threatened and actually started abusing me because he went through my phone (I was not cheating but he thought I was with a close friend)

I know this can be triggering and I apologize but I know that it'll get worse if I don't say anything. I have intrusive thoughts around men and I can't seem to get out of it and all i want to do is bedrot but if I do that the memories will take over and I'll be a mess. I've been keeping it quiet for my partner, who is incredibly sweet and supportive, but sometimes I can't hide my flinching from frustration or the intrusive thoughts about my attacks.

I just would like a little support or some kind words. I dont want the thoughts to overtake my life and mind.

I have to rant about this to people who feel the same. Or who has had a similar experience

I went to get a second opinion because My pcp wasn't doing the best job of getting everything figured out. Specifically Neurology and GI.

So I went to a doctor a little closer to me and he was great and very thorough and also incredibly kind.... he did give me a bogus diagnosis with my GI issues. He locked on only one of the symptoms I've stated and gave me the Diagnosis of IBS-C.... when only two of my symptoms match.

I'm not sure if maybe I said it wrong or if I gave him a wrong impression, as i try to be as concise as possible.

I'm so annoyed at doctors' appointments. I have had an incredibly disabling condition that started three months ago. I got a referral for a specialist nineteen days ago. And then another one from a different doctor to the same kind of specialist in a different city. And then I had to call one more specialist in a DIFFERENT CITY to see if they could get me in because this condition can be life threatening if left untreated. And this condition has been giving me daily symptoms. I tried being nice and no hate to the doctors but what the heck???? I have been BEGGING to be seen for something that can hurt me and no one is doing anything about it! Ive had to start thinking of working from home because I am feeling horrible and I only work four days out of the week and cant even do two six hour shifts. I either get sent home or have to call out. I hate it. And I know this is what a lot of people go through in the medical system and I feel like its horrible we cant be just listened to about pain or issues that need help immediately.

So, I'm experiencing the fact that I may not be able to work traditionally with my health. And im wondering what other people who are in the "too sick to work but not sick enough for Disability" slot are doing for working from home. My only option so far is creating an Etsy shop with things like rice bags, totes, and easier to open Keychains with cute patterns that match people's aestheics. But I want to know what others do to get a few more ideas.

I went to a different doctor than my PCP because I needed to get things rolling a tiny bit faster and don't mind having multiple appointments in the works.

I've been having a huge time eating for about three or so weeks, and my PCP hadn't gotten anything in for my GI issues.

And while I think the doctor I went to is great and thorough, he said he thinks it's IBS-clear (im chronically constipated)

But the thing is.... a chronically ill friend of mine doesn't think so, and neither does my Bf's Dad, who is a surgeon. Both of them, when I told them my symptoms, immediately said that IBS was a bogus diagnosis. Thankfully, I did get a referral in to a GI specialist.

Though now im trying to find easy foods I dont have to chew and substitutes so I dont have as much pain and I can at least get tiny bits of food that are easier to digest while I'm waiting for a call back for the specialists. And I figured that I'd ask here if anyone has some good meal ideas.

I've been having a huge issue recently. For about two or so weeks, I haven't been able to eat because of incredibly intense nausea. And believe me, I've tried to eat or at least get a protein shake in my system, even if I get intense nausea and horrible pain after.

I wanted to ask if there are any super easy foods that I dont have to chew or that won't make me super sick that anybody has to share? I need ideas for however long this goes on for. I have a loose pescetarian diet and eat chicken as well. But I can't keep up with just zofran and protein shakes.

So, my biggest thing was that if I felt the strong urge to drink alcohol, that was Dionysus's energy. I've been working with him very closely for a few years now. But now, im on a medication that is strictly about not drinking alcohol and I've never been much of a drinker, but I'd like a nice glass of wine now and again.... is there a way to get around this? Or am I overthinking it? I still feel when he's trying to speak to me, and unfortunately, I don't have my tarot cards with me. When that urge comes, what's a good alternative?

I lived in a house where medical stuff was basically banned from discussion.

I have HEDS and fibromyalgia, and recently, I've been having MASSIVE issues with eating and keeping food down without the help of nausea medications. Looking it up, it sounds like Gastroparisis. I learned that both fibromyalgia and HEDS can have it as a comorbidity. I've been dropping weight and having issues gaining it back. A lot of the symptoms I've had from a young age. Like constipation, or going weeks to months without having a BM (that has been my norm for years), nausea, and though I don't vomit often, And idk if I have acid reflux, I still have issues eating most things even though I try to eat. It's hard for me to swallow anything that isn't basically soup or liquid, and it's been getting worse over the last few weeks because I have been noticing it more often since I have been pursuing diagnoses.

But the thing is, I don't want to spiral and go into a research rabbithole about it because then if I bring it up to my doctor (or a new one) then I don't want to sound like I'm a hypochondriac. My doctor at the moment hasn't looked into any other things besides treating my fibromyalgia and has refused to order tests for anything else. I got a rhumitologist because he was sure about the fibromyalgia, and that's how I also got the HEDS diagnosis.

How can I stop myself from spiraling out?

And is there a way to bring my symptoms up to a doctor without it sounding like I'm looking for a specific diagnosis or like I'm sure of what's going on?

(Also I am not asking about the symptoms as those are things I have to talk to a doctor about. I have a medical journal that I write everything in.)

I lived in a house where medical stuff was basically banned from discussion.

I have HEDS and fibromyalgia, and recently, I've been having MASSIVE issues with eating and keeping food down without the help of nausea medications. Looking it up, it sounds like Gastroparisis. I learned that both fibromyalgia and HEDS can have it as a comorbidity. I've been dropping weight and having issues gaining it back. A lot of the symptoms I've had from a young age. Like constipation, or going weeks to months without having a BM (that has been my norm for years), nausea, and though I don't vomit often, And idk if I have acid reflux, I still have issues eating most things even though I try to eat. It's hard for me to swallow anything that isn't basically soup or liquid, and it's been getting worse over the last few weeks because I have been noticing it more often since I have been pursuing diagnoses.

But the thing is, I don't want to spiral and go into a research rabbithole about it because then if I bring it up to my doctor (or a new one) then I don't want to sound like I'm a hypochondriac. My doctor at the moment hasn't looked into any other things besides treating my fibromyalgia and has refused to order tests for anything else. I got a rhumitologist because he was sure about the fibromyalgia, and that's how I also got the HEDS diagnosis.

How can I stop myself from spiraling out?

And is there a way to bring my symptoms up to a doctor without it sounding like I'm looking for a specific diagnosis or like I'm sure of what's going on?

(TRIGGER WARNING)

When I was a teen, I had a bad habit of SH. I would write things my adopted mother would say on my body (fat, stupid, slow, etc.) and would do it where they wouldn't find it. It was a way of coping with the onslaught of emotional abuse that had escalated around the time my older adopted brother went to college.

After a few instances, my adopted mother would bring me into her bedroom and lock the door and force me to take my clothes off so she could check and see if I had hurt myself. And I stopped due to the shame I felt from it.

Another time, when I was sixteen, I had gotten a new pair of jeans and she told me I looked like a boy (I had short hair and my clothes were always baggy) and she grabbed at the baggy spot by the zipper.

And she would force me and my sister to kiss her on the mouth when we were younger and never locked the door when she showered. My mind is so muddled that I dont know if this is a type of abuse, but I know it's not "normal" behavior.

I'm an estranged daughter and just need some kind support..

I've been doing really well recently, but I feel like it's prudent to say that I have had countless doctors' appointments and diagnoses. Im feeling really bad and sick today and trying to do a little self care. But I've been having issues with my health. I feel really tired, and I have been doing my best just to get through the week. And I just need a little support or encouragement when I'm feeling down and exhausted.

I don't know how to word everything, but I was told this is the place to go.

I'm feeling really tired today. I'm (26f) an estranged daughter and looking for someone to just tell me they're proud of me.

I have a steady job, and I'm adopting a puppy next month. But I've been going to doctor appointments and am really tired due to some chronic illnesses. And im tired but still try to go to work and keep up with the housework.

I'm not sure how to word everything, but I haven't had a father figure say that they're proud of me for years.

I'm (26f) not fully sure how to say all this.

I'm adopted, and I've basically cut off all forms of parents. Both bio mom and adopted mom and dad. I'll be honest I DID NOT see the good side of the system. I still talk with my adopted siblings from time to time, but I cut off my eldest adopted sister.

I try to explain that the parents that they had was not the same as mine. I was the youngest and experienced a lot of neglect or outrageous abuse (mainly emotional and mental). I was told I wasn't good enough for the family, that I was a burden, and multiple times, my adopted mother would say she wished she didn't take me and only took my sister. Or say that I was lucky that she didn't take me back to the agency. But my siblings still say that I should try talking to my adoptive parents. And the thing is I had tried for years. And every time, it's clear that they haven't changed a thing.

The thing is.... sometimes when it's really hard, or when something hits and I can't deal with it... I still want my mom or dad so I can call them and get love and support. But I know they wouldn't do that. Its been over three years since I last spoke to them (I went to my adopted brother's wedding and only said hi) and sometimes I still find myself wishing that they weren't the way they are. That they'd call and we'd have a good conversation. But I know that wouldn't happen. And those times... I don't know how to react.