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Fibromyalgia #Undiagnosed #Fibromyalgia #ChronicPain

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?

18 reactions 10 comments

June 10th, 2024

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

28 reactions 5 comments

I'm new here!

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

5 reactions 2 comments

Faint itchy burning marks on skin - Undiagnosed

I would love to hear if anyone has experienced similar symptoms or may know what could be causing these.

Key symptoms: faint, subtle outline marks (ie more like a hollow ring, than a filled in disc), pigment coloured, flat not raised, hard to see, which tend to appear after I get an itchy, prickly, burning, sensitisation in a specific spot, followed by a spreading heat sensation, like something blooming on the skin, in that spot. My face and neck are most affected, but I get these point specific sensations head to toe. I also get more generalised persistent itching, burning and pain, as well as pins and needles in hands and feet. Altogether the symptoms, the pain and the lack of effective treatment have been really distressing and have impacted on my quality of life.

It started over 3 months ago. My son developed this first, and was visually diagnosed by GP with tinea, a fungal skin infection. I got it next, and was diagnosed by GP, visually and based an my son, with tinea, however topical and oral antifungals did not help, and the symptoms /progression were not typical of a tinea infection - spread head to toe in a few days, not red or raised or flakey skin, just flat pigment coloured marks, of assorted oval or roundish shapes. My partner got it next. We all had the marks and itchiness, but I am the only one to experience persistent burning, heat and ongoing pain, and many itchy marks still popping up. Two dermatologists found no sign of fungal infection (2 and 4 weeks in) and a third dermatologist described the set of symptoms as unusual, they don’t fit with any common conditions, and the marks are barely visible (and don’t photograph well), while the sensations are significant.

My son and partner get the occasional mark still pop up, but thank goodness, it is only mildly itchy for them. When symptoms started no testing was done, a subsequent skin swab 2 months in and blood tests have not shown anything. Oral antihistamines, and topical and oral corticosteroids also made not impact.

If you have any ideas of what might be causing this, I would love to hear from you!

#Undiagnosed #Skin #itchy #Burning #faint

4 reactions 2 comments

April 30th, 2024 Review + Thoughts

A bit anxious as my day was very stressful because I had to take care of things medically related which exhausted me.

Advocating for my health is always a bit hard for me which is to be expected for my age I believe while I try and figure out what is wrong with me and who I need to see.

Which unfortunately is a difficult task.

Having to make appointments for multiple doctors and having to go and see new ones for a list of health issues and symptoms that never gets answered because there is nothing they can visibly see which is another pain of having an invisible illness.

Symptoms that don’t make sense to most doctors so I have to go to different doctors for them to also not know what is going on.

And then I wait a month only to have to wait for another more.

And then I have to get bloodwork done and/or imaging via x-ray or ultrasound.

Particularly with my kidney problem where I have too much calcium but with perfectly functioning kidneys that actually work better than most.

And I find it very depressing and overwhelming.

I can’t do anything fun because all the money goes to the doctor.

But then again I probably wouldn’t have had fun anyway due to the pain and chronic illness.

I’m not sure, this all just feels hopeless and a lost cause.

#MentalHealth #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #ChronicIllness #ChronicPain #CrohnsDisease #InflammatoryBowelDiseaseIBD #Undiagnosed

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Undiagnosed Disease Day

Today is Undiagnosed Disease Day, and I want to acknowledge the journey so many of us are on to get a diagnosis and treatment for the conditions that bring us here!

Fourteen years ago, I suffered a sudden onset of chronic symptoms and visited doctor after doctor. Preliminary tests showed that I was “a perfectly healthy young woman” and I began to wonder--not about the limits of diagnostic medicine, I first wondered about myself.

Was I imagining my ailments? My debilitating fatigue, dizziness, and joint pain certainly felt real. Maybe I was making too much of my issues? But like a lot of people, I was raised to push through pain, fatigue, and sickness, and I’d never before let minor illnesses stand in my way. However, now I couldn’t even keep up with my reduced work schedule.

At the same time, I searched for diagnoses on my own. I scoured everything from patient forums to journal articles trying to figure out what was wrong and how to get better. Because many of my symptoms mirrored multiple sclerosis, I went through yet another round of expensive tests. Twice. When the neurologist gave me the results—no MS—I burst into tears. I’ll never forget the dismayed look on her face when she told me that most people would have the opposite reaction.

The thing so many people don’t understand is that a diagnosis, sometimes even a life-altering one, can come as a relief to patients who have been suffering from unexplained symptoms. It’s surprisingly common to have a poorly understood or undiagnosed illness. According to the Mayo Clinic, as many as 1 out of 13 people in the United States suffer from such conditions. A disease doesn’t need to have a name to derail your life. In fact, undiagnosed illnesses can take an even greater toll because these patients are dealing with the unknown, alongside doubt from doctors, employers, friends, and family.#

It’s never fun to be sick, but it’s a particular challenge to be sick and not know what’s wrong. The physical fallout is only exacerbated by self-doubt, outside skepticism, and the inability to actually heal by treating the root cause.

So on April 29, Undiagnosed Day, let’s give a shout-ou to everyone who continues looking for answers when others look away.

#Undiagnosed #ChronicIllness #Anxiety #MentalHealth

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Dealing with Mystery Minor Chronic Illness #ChronicFatigue #MentalHealth #ChronicIllness #Undiagnosed

October of 2016 was the beginning of a new normal for me, far before COVID-19 had started. It was a time of grief, sorrow, and bargaining. It was when I had obtained my mystery minor chronic illness. Mystery because I’ve had my tests done, and they all came out 100% fine. Minor because I am still able to carry out my day-to-day activities. And chronic because from one point forward, I had to deal with loss of energy and concentration for everyday of my life.

Countless times have I been told that nothing was wrong with me, and all of these are mere signs of anxiety. However, my change in physical appearance and internal sensation tells me otherwise. Drastically, I had become paler, weaker, and more tiresome. It was clear to me that something had changed. What it was - I was not certain for sure.

Dealing with mysteries can be unsettling because there is no definite answer. Not even science - the discipline which purports to know a lot of things - could tell me what I was facing. This had forced me to fight and cope using my own means. And for eight years, I have built a set of coping tips that I would like to share about today.

1. Gratitude

I keep a gratitude journal where I list things I am grateful for each day. This helps me focus on the positives despite the sea of negative feelings. In it, I list down all my blessings, however minor. It helps me realize I have a lot to be thankful for.

2. Exercise

With chronic fatigue, it may seem counterintuitive to exercise, but exercise helps release endorphins and maintains good chemical balance in the brain. Even simple walking can help lighten one’s mood, so I highly recommend this.

3. Friendships

Keeping close friends helps distract me from wallowing, as I shift my focus on others instead of just myself all the time. They also help me lower my feelings of anxiety whenever I rant to them. Just be careful not to rant too much because that will just bring the mood down.

4. Reframing

Self-blame is common with chronic illness, but we must realize that some things are beyond our control. Reframing thoughts can help shift our focus on things we can still do rather than things we cannot do.

5. Rest

After a day or some hours or some minutes of hard work, it can be rewarding to get some rest. Rest is the universal reset, which not only resets my energy levels, but also resets my mood.

6. Hobbies

Having hobbies are a great form of satisfaction because you can achieve small things during your free time, whether it is a new stuff toy you sewed or a new song you learned to play.

7. Moving Forward

My motto is “Keep moving forward.” This means that we mustn’t keep feelings of regret or other negativity from past experiences. Moving forward means that we forget about small things, and focus on things that build us and make us better people.

With all these tips, dealing with chronic illness has become easier and more manageable for me. It is never easy, but baby steps such as those listed above help me get through my day, week, month and year. I hope that even as cliche as all my tips sound, it can help reinforce the idea that these tips do work. I assure you that as long as you keep following these tips, and your own coping strategies, you are on track to be a much better self. A lot of times it is hard, but the silver lining is that we emerge stronger, braver, and more empathetic in the end.

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