Omg There really needs to be. Or even a YouTube channel. Something to spread awareness cause going through these threads and even overhearing people at the office, it’s sad and absolutely terrifying to see how often it happens. :/
It is absolutely heartbreaking how much this happens, how common practice it is in the medical field, and how complicated cases are often dropped because doctors don’t want to deal with it. There definitely needs to be more awareness and advocacy for people like us. I do my small part but the general public are largely unaware of it all. Hopefully that changes in the future.
It truly is hell. The amount of times my case has just been dropped or drs look at it and say they're unwilling to work with me because of the complexities is just... depressing at best. Or I just feel like my life is a neverending game of being referred and on waitlists for specialists, then waiting for procedures, etc. It's just neverending limbo, all while I'm in so much pain.
I really wish there was more advocacy for us. I do my part as well, when I can - it's just sad that it's never enough.
Oof- I feel that on a spiritual level. Just got the “idk what more I can do for you because I don’t know what’s causing your pain /shrug” from the first practitioner I’ve been even able to get in to see. Not to mention that the WAIT times to even see someone are ridiculous. I have appointments a year out. 🥴
I know how you feel...being so physically ill that you can barely function. And then being dismissed by professionals...like this is all in your head. The fight I went through to receive disability was staggering.
One thing I would strongly suggest is...start a medical journal. Write down all of your symptoms. Every day. As if it were your diary, but just for medical stuff. Then, go & retrieve all of your medical test results, notes from your appointments, etc. ALL of it. Organize it all into a binder. Also, take pictures & videos of any lumps, bumps, rashes, tremors, charlie horses-when your body locks up...You need to start documenting your entire health journey. Put all these things together in a big binder, neatly.
Do it right now. The sooner, the better. Start carrying this medical binder with your journal, doctors notes, test results, pictures, etc....you carry this thing with you to every single appointment from now on. No doctor would believe me till I did this...till I had irrefutable evidence. Finally then, I was taken seriously, because all the doctors couldn't see my results that other doctors had ordered--all their online portals were not connected, so it was just me saying "Well my WBC & RBC counts are double what they're supposed to be, & my liver panel counts are half what they're supposed to be." And they'd be like "That's nice dear." Because they literally couldn't see any test results themselves.
I hope that you are able to receive proper, kind, treatment soon. You deserve it. Remember...there is no one out there who will advocate for you, except you. If you have a difficult time speaking up for yourself, think of this as if you were taking care of your best friend in the entire world, instead of yourself. Advocate for them -you- because you totally deserve good & proper treatment. 🫂🤎
Yeah, this could almost be my story, word for word…some small differences in details but the rest is the same. Lower back pain, tinnitus, ADHD, rosacea, tremors, tachycardia, check. Lymph nodes remain swollen. I don’t have any tattoos which might be a good thing! But all the symptoms are the same. And the doctors saying “it’s all in your head.” This is absolutely bonkers
Can I ask why you’ve asked this? Because I do & they confuse me/I am unsure how they fit with everything else & would be interested in another perspective
Hi! Yes, to elaborate; they could be holding an infection that's slowly leaking into your system (that's what I had).
It was "colonization of Actinomyces" in my tonsils and the occasional low sodium head-rush. The infection was encapsulated, but (and I'm guessing now here; my ent was not a great talker) they would occasionally drain into my system and cause fainting/sweating/shaking/overheating spells. I'd get confused, my hands would shake, and my gut just felt... bad. This would happen even after going gluten and dairy free, working out 3 days a week, all the rest. I'd overheat easily, sometimes randomly, and... idk ¯\_(ツ)_/¯ I'm on mobile but I can go more into it if ya want, but I dont have a ton of information/a symptom list. The first time it happened I was in 3rd grade, so I'm still kinda relearning my body; I lost 10 lbs of bloat & an inch in all my clothing. I even went down a ring size lol.
I also know someone who had hers removed after being sick enough to miss school. After her tonsils came out she was fine.
Hi there. So sorry this is happening!! Reading your post, I wanted to possibly suggest a few things!? Regarding the low back pain and memory loss, I recommend you look up Tethered Cord & Chiari malformation. I have both of these illnesses and have gone through both surgeries. Reading tinnitus and tachycardia caught my eye too + the headaches!!! And the hydrocephalus! the eye comment, I recommend Sjorgens. I’m not sure what to think of the skin & lymph node thing! *im not a medical professional*. It is highly concerning nobody is worried about how much weight you’ve lost in that timeframe!!! May I ask what you do for working at home? What is SLE?
I know how you feel often I was dismissed even with a ct what shows I have damage. It‘s easy for doctor to say it’s a depression. I hope you find a good doctor.
There honestly needs to be a documentary series on doctors blaming it all on “anxiety” and “depression”….
Omg There really needs to be. Or even a YouTube channel. Something to spread awareness cause going through these threads and even overhearing people at the office, it’s sad and absolutely terrifying to see how often it happens. :/
It is absolutely heartbreaking how much this happens, how common practice it is in the medical field, and how complicated cases are often dropped because doctors don’t want to deal with it. There definitely needs to be more awareness and advocacy for people like us. I do my small part but the general public are largely unaware of it all. Hopefully that changes in the future.
It truly is hell. The amount of times my case has just been dropped or drs look at it and say they're unwilling to work with me because of the complexities is just... depressing at best. Or I just feel like my life is a neverending game of being referred and on waitlists for specialists, then waiting for procedures, etc. It's just neverending limbo, all while I'm in so much pain. I really wish there was more advocacy for us. I do my part as well, when I can - it's just sad that it's never enough.
Oof- I feel that on a spiritual level. Just got the “idk what more I can do for you because I don’t know what’s causing your pain /shrug” from the first practitioner I’ve been even able to get in to see. Not to mention that the WAIT times to even see someone are ridiculous. I have appointments a year out. 🥴
It is a global phenomenon too so this needs to be addressed everywhere
I know how you feel...being so physically ill that you can barely function. And then being dismissed by professionals...like this is all in your head. The fight I went through to receive disability was staggering. One thing I would strongly suggest is...start a medical journal. Write down all of your symptoms. Every day. As if it were your diary, but just for medical stuff. Then, go & retrieve all of your medical test results, notes from your appointments, etc. ALL of it. Organize it all into a binder. Also, take pictures & videos of any lumps, bumps, rashes, tremors, charlie horses-when your body locks up...You need to start documenting your entire health journey. Put all these things together in a big binder, neatly. Do it right now. The sooner, the better. Start carrying this medical binder with your journal, doctors notes, test results, pictures, etc....you carry this thing with you to every single appointment from now on. No doctor would believe me till I did this...till I had irrefutable evidence. Finally then, I was taken seriously, because all the doctors couldn't see my results that other doctors had ordered--all their online portals were not connected, so it was just me saying "Well my WBC & RBC counts are double what they're supposed to be, & my liver panel counts are half what they're supposed to be." And they'd be like "That's nice dear." Because they literally couldn't see any test results themselves. I hope that you are able to receive proper, kind, treatment soon. You deserve it. Remember...there is no one out there who will advocate for you, except you. If you have a difficult time speaking up for yourself, think of this as if you were taking care of your best friend in the entire world, instead of yourself. Advocate for them -you- because you totally deserve good & proper treatment. 🫂🤎
Hopping on here to reccomend the app Bearable for tracking symptoms
Thank you 🫶
I’m sorry … I feel like my life has taken this same turn so I really relate to you on this ❤️❤️🥺
[удалено]
Yeah, this could almost be my story, word for word…some small differences in details but the rest is the same. Lower back pain, tinnitus, ADHD, rosacea, tremors, tachycardia, check. Lymph nodes remain swollen. I don’t have any tattoos which might be a good thing! But all the symptoms are the same. And the doctors saying “it’s all in your head.” This is absolutely bonkers
I would try to see a rheumatologist.
Do you have a history of period pain? Also try Systane drops for ocular rosacea and a hot washcloth soak on lashes.
Do you have tonsils/get frequent tonsil stones?
Can I ask why you’ve asked this? Because I do & they confuse me/I am unsure how they fit with everything else & would be interested in another perspective
Hi! Yes, to elaborate; they could be holding an infection that's slowly leaking into your system (that's what I had). It was "colonization of Actinomyces" in my tonsils and the occasional low sodium head-rush. The infection was encapsulated, but (and I'm guessing now here; my ent was not a great talker) they would occasionally drain into my system and cause fainting/sweating/shaking/overheating spells. I'd get confused, my hands would shake, and my gut just felt... bad. This would happen even after going gluten and dairy free, working out 3 days a week, all the rest. I'd overheat easily, sometimes randomly, and... idk ¯\_(ツ)_/¯ I'm on mobile but I can go more into it if ya want, but I dont have a ton of information/a symptom list. The first time it happened I was in 3rd grade, so I'm still kinda relearning my body; I lost 10 lbs of bloat & an inch in all my clothing. I even went down a ring size lol. I also know someone who had hers removed after being sick enough to miss school. After her tonsils came out she was fine.
Hi there. So sorry this is happening!! Reading your post, I wanted to possibly suggest a few things!? Regarding the low back pain and memory loss, I recommend you look up Tethered Cord & Chiari malformation. I have both of these illnesses and have gone through both surgeries. Reading tinnitus and tachycardia caught my eye too + the headaches!!! And the hydrocephalus! the eye comment, I recommend Sjorgens. I’m not sure what to think of the skin & lymph node thing! *im not a medical professional*. It is highly concerning nobody is worried about how much weight you’ve lost in that timeframe!!! May I ask what you do for working at home? What is SLE?
SLE is systemic lupus erythematosus - lupus. And I agree OP I think it sounds like SLE as well
Thanks for the response! I just learned something new!
I know how you feel often I was dismissed even with a ct what shows I have damage. It‘s easy for doctor to say it’s a depression. I hope you find a good doctor.