Undiagnosed

#MitochondrialDisease #Undiagnosed #RareDisease

Hello everyone. I have been seeking for answers my whole life and just learned about mito and sounds very possible. Here are my symptoms:

-significant fatigue that often has my body feeling extremely heavy. Sometimes to the point of not being able to move/will have trouble breathing. Rest helps a bit.

-muscle pain, spasms, twitching, and tightness.

-muscle fatigue/weakness(?)

-poor growth (due mainly to growth hormone defeciency) and a lot of trouble eating & gaining weight. Dx of gastroparesis and IBS as well.

-had an EMG done as a teen that was abnormal but inconclusive as the tech couldn't interpret the signals.

-Visual blindspots

-Orthostatic intolerance

-Probably more to add but cant think of them. I recently had to invest in forearm crutches and while I try to avoid them, do use them on worse days.

Hi, my name is spoonie_cowboy. I'm undiagnosed and am suffering with debilitating fatigue as well as other symptoms such as widespread chronic pain (probably centralized), nausea, high heart rate, congestion, and severe period pain. I have been fighting for a diagnosis for the fatigue for over a year and for other issues for 2+ years. Looking for ways to manage mental health when I am so physically tired all the time + ideas on how to manage my time to get a diagnosis faster. Although I have many resources in place, such as therapy, caregiving, patient advocacy, etc, I am just too tired to get all the testing I need and I have to wait months for appointments sometimes. Looking for support, ideas, community, etc! Hope to give and receive support from the chronically ill community!

#MightyTogether #Depression #Undiagnosed #Anxiety

I've often had joints feel wrong, or out of place, but I can't tell if it's 'normal' pains or if the joint actually has come out of place.

I've been in pain so long, paired with poor memory, that I can't really tell how severe my pain is anymore. i think of it in terms of texture (sharp, aching etc) and how distracting it is, rather than intensity.

how do you know if you've actually dislocated/subluxed a joint?

#Undiagnosed #EhlersDanlosSyndrome #ChronicPain

Has anyone had a Radiofrequency Ablation procedure for back pain? I have had two medial branch blocks done and I was unsure if those helped.

Hello Mightys, first I want to thank everyone for the suggestions and support I got on my post!

Secondly for some reason my previous attempt at a post didn’t go through so now I have to retype everything.

The past few showers and days have all been the same exhausting and irritating experience;

Nausea, Dizziness, Faintness, Shaking, Tremors, Winded, Fast Heartbeat, and Exhaustion.

I have to repeatedly sit down every minute while attempting to shower which is very unpleasant as there is nowhere to sit and I end up sitting on the shower floor and it’s very uncomfortable.

Those who suggested a shower stool, I am looking into it and can see how helpful it would be; it would make me not dread showering and make the task overall easier for my chronically ill body.

I did finally reach out to a doctor and got back from them, I will see them soon.

I didn’t mention or suggest PoTS though I know it was mentioned previously, I’m just too shy to be that direct, but I will be seen and likely go through a test that should make it see if anything indicates that.

I will keep all you informed and share how things go. 🦋

#ChronicIllness #CrohnsDisease #InflammatoryBowelDiseaseIBD #AutismSpectrumDisorder #ADHD #Undiagnosed #PTSD

The past few showers have all been the same irritating experience;

• Nausea
• Dizziness
• Faintness
• Shaking
• Tremors
• Difficulty breathing / Winded
• Fast heartbeat rate
• Exhaustion

I have to sit down so much, which I hate because not only do I not want to have to sit down every minute, I have to sit on the shower floor as there is nowhere to sit which makes me feel uncomfortable.

After a shower I desperately need to rest as I can’t stand for even for a minute when I finish, it’s like a workout for my chronically ill body.

I can’t really stand for long in general and the shower makes it so much worse.

I did try to change the temperature of the water to something cooler but it didn’t change much.

For all of you that suggested a shower stool, I am looking into it now and I can see why it would help me significantly as I wouldn’t dread showering as much.

I know some people were mentioning PoTS, I have been looking into that as well, I’m not diagnosed though I do have all the symptoms except for fainting. But I do get really close to fainting.

I did finally talk to a doctor about it, I didn’t mention PoTS as a possibility because I’m just too shy to be that direct.

But I will see a doctor soon.🦋

#ChronicIllness #Undiagnosed

Has anyone else been told that their diagnosis for fibromyalgia is temporary and that you probably have RA or Lupus but they can’t diagnose you yet because you don’t have every symptoms yet and the bloodwork doesn’t support it?

Hi. I'm back yet again to vent. But this time, I'm not looking for any advice. I just need a place where someone, even just one person will hear me. Where I can put my emotions into words. Or at least try to. I'm not the best at words so I'll just do my best.
Today is the 10th of June. It is the 4th year anniversary of the day that I got really really sick and never got better. Even though, it had been building up for over a month when the symptoms had started and for the past fews days, it had gotten alot worse but this was the day it got really really really bad. And I experienced every single one of these symptoms that now are a daily second to second chore. Second nature. The hell that I live in constantly now. The new normal. That is why I associate this day with the death of my formal self. This is the day that brought me here. This is the day that killed me. Because I will never ever ever, no matter how much I try, ever be who I used to be before the summer of 2020. And honestly, I know what I'm about to say is really weird, but it annoys me so much how because of the circumstances I'm in, I can't even grieve this day properly. After my board exams, I had lab work at school so I had to go and practice for those at school which was extremely physically painful and hellish and it ended up being completely useless anyway because they weren't making us actually do the practice, it was mostly just having to go up and down the school stairs again and again and again for no reason and having to listen to my classmates' invasive and personal and often insulting and hurtful questions and comments about my condition. And now it's the time of the lab exams, today was the first one. I studied excessively for this and perfected it in every way. But when I got there, I realised I just wasted all my time and energy on nothing and was stressing about nothing because they were all cheating from their phones and the teachers did not care. I spent so many of my spoons on nothing. That really frustrated me. Along with how I'm practically becoming a full on bullying victim at this point. It was hell. And then on the way back, I slipped and fell and Injured my ankle and leg. My legs are already in pain 24/7 so I think I might honestly have a breakdown at this point. I haven't studied well at all for tomorrow's exam. I'm honestly really worried. I just hope it's just like how it was today but I don't know. What really has disheartened me in a way that I cannot describes is just how much effort I put into these board exams. Wasting my entire year, only for them to go absolutely horrible. In a way that I'm just praying to even pass. It really really really disheartened me. Genuinely. I don't wanna work hard ever again in my life honestly. But anyways, I really wish that I had the time and energy today, to just cry my heart out. Because my heart is filled to it's core with emotions but I am too exhausted physically to cry. Honestly, this June 10th was so so so different from all the other ones I've had. This time, it's in a different house than the one that I got sick in. And that hurts so much. I cannot tell you how much it hurts me to let go of that house. I just moved out a week ago in the midst of my exams. Actually, it hasn't even been a week. And this time, in starting to feel the feeling that keeps me alive fading. It's not as strong anymore. That strong feeling of nostalgia. I still remember so well, that summer, all those sleepless nights. When I would get up from my room after crying for an hour, and go to that bedroom that is so memorable, where everyone else was asleep and I would try to sleep there and just end up crying for hours and hours until the sun came up and I finally decided that I should stop starving myself and go to eat something. The next summer, where I was hit with the fact that it's been a whole year and it just won't end. When I realised, yeah, it's not gonna end. I feel so dead inside, so so numb, I remember that feeling of aliveness and I miss it so so much. That hope. The way that the world actually looked colourful. It feels like my vision actually physically changed. Like it's so grey now. So monotone. But it wasn't this way. The world looked alive. It looked normal. It looks grey now and feels like a wilted flower. Every single day, I'm still in the same pain that took over my being on the 10th of June 2020. And I cannot believe that I survived these 4 years. I really can't. It doesn't feel like I have. It feels like I died and this is all a dream before my last breath. It doesn't feel real. These past 3 years have not felt real at all. That first year felt like the realest thing that has ever happened but the rest has feel like a fever dream. I definitely went insane somewhere along the way. I feel confused by everything now. I feel like nothing makes sense anymore. And I never know what I'm doing. Even now, I have no idea what I have just wrote. It probably all sounds stupid. This little rant of mine. I've still got a whole summer left. To cry. But I don't know why. It just feels like it'll be my last summer. I'm probably wrong but it just feels like that. I'm scared, really really scared for my future because I don't wanna live like this any longer. But I've been saying this for years now and nothing has changed (at least not in a good way) and I know that this pain isn't going away any time soon, that I will continue on like this for a while. Everyday just reminding myself that I'll get to sleep at the end of the day or at least at some point. Only living for sleep. Sleep. A state where no pain can be felt and no thoughts can reach you. So blissful. Except for the horrific nightmares and that sleep where you keep waking up every 5 minutes. Haven't been able to get much sleep at all these days because of school but hopefully the exams will end this week. I'm sorry if none of this made sense or if it sounded cringey. I'm just really tired of pretending like everything has happened to me and that continues to make me suffer and will continue to do so, doesn't exist. I'm done with not talking about it. I don't mention it at all in real life. I don't know how I don't. I never complain about what happened to me. I haven't in like 3 years. And if I make even the slightest complain about my health, all I get are eye rolls in response. By the same people who have no shame in complaining about their small aches and pains in front of someone who should be in a hospital and not having to live a life with no accommodations. I just wait everyday for the day, where these illnesses do something to me that makes everyone have to take it seriously. This something could be death or something else. I don't really know. But to some degree, I know that slow torture is written in my fate. And invalidation too. So that day won't come. I'm sleep deprived so I should probably go to sleep now since I have to wake up really early for school tomorrow. Again, I know this whole rant made no sense and I should probably stop wasting people's times by using this app like a diary but I just want, anyone at all to know the pain I'm. If you actually read this whole thing, then you deserve a pat on back at least. Probably even an award honestly. Good job. And I'm really sorry for wasting this much of your time. I will try to go to sleep and then survive tomorrow and go to school with this broken ankle on top of the entire rest of this broken ached vessel that I exist in. I wanna say alot more, there's alot more things coming in my mind right now that bother me everyday of my life but I'm too exhausted right now so I'll leave that for another day. Thank you so much for reading this and goodbye for now.
#Fibromyalgia #ChronicIllness #MentalHealth #ChronicPain #Depression #Undiagnosed

Hi, my name is lani. I'm here because i have been dealing with chronic pain for a while and recentlt worse. My gi doctors suspect gastroparesis and my ANA test came back as positive and my doctor was suspecting lupus and similar illnesses<3 i="" feel="" so="" alone="" lately="" and="" have="" no="" one="" to="" talk="" found="" this="" site🩷="" #ChronicPain #ChronicIllness #Undiagnosed