I’m 16 and due to the covid 19 i can’t go to the hospitals and it’s frustrating because i know something’s wrong with me but everyone seems to think i’m normal & and i’m over exaggerating but there’s not one day i don’t wake up to feeling something in my body bothering me especial my legs feeling numb and stomach feeling bloated. i’m happy i’m not the only one🤞🏿. thank you for sharing your story
OMG. Your story really means so much to me. I'm at the part of your story where I feel like I'm crazy and I'm randomly crying because I know something's wrong with me and all of my test keep coming back normal. My doctors are starting to treat me like I'm a hypochondriac. I've already been diagnosed with fibromyalgia but I constantly have abdominal pain, I'm always way more fatigued than other people I know that have fibromyalgia, and I constantly feel like my joints are dislocating and popping back in. I'm always in so much pain that I want to cry but all my doctors just say I have fibromyalgia and I need to live with it. I know that there's more to it than that.
Ugh. Im so sorry you have to live this way. I want you to know you arent alone!!!! I am with you. We will fight for you!!! Thanks for sharing your story!
Theresa, have you ever looked into EDS? (Ehlers Danlos Syndrome) with your pain and joint issues, as well as your digestive issues (common comorbidity with EDS is gastroparesis and other GI conditions) it might be a good fit. It can be really hard to get a diagnosis but it might be worth exploring
@@adelequinn3334 I was tested a while ago but I didn't have very strong markers. I did start eating gluten-free which has helped with digestive issues, but not the pain. My father has it so I'm about to get the genetic test to see if I have the gene, and if I do, I'm probably going to go off the gf diet and get tested again.
Hi Aimme. You sound just like me. I'm 71 now. But I had Endometreosis at 32. I had a Hysterectomy and haven't been well since. I have seen every one, done every thing, spent thousands. And desperate just like you. I feel for you. You look so well. I was told I have CFS 35 years ago. I have had every test saw every Doctor. I had breast cancer, now I have Fibromyalgia. I tested positive for Methane Sibo. Antibiotics did nothing. Saw private Doctors, took natural things. Every diet possible, but I'm still ill. I wish you so much luck. I do hope one day things will sort there selves out for you. I beleave it's all hormonal in origins. Mine all started with my Hysterectomy. I had HRT for over 20 years, it caused breast Cancer. Sending you love. X
I love how positive you are about it all 😁 my symptoms started 9 years ago I was passing out and couldn't breath and kept getting extreme migraines. I had loads of blood work and other tests and everything came up fine, after 3 years of trying to find a physical illness they put it down to mental illness and I was telling all my therapists that it was not in my head. Two years after therapy and still fainting multiple times a day the doctors redid all my physical tests again and the only thing that they found was a slightly over active thyroid which the doctors said would go away on its own. I started loosing weight and becoming really depressed at this point. I was still having therapy but the doctors dismissed any physical problems. Then after I left school my symptoms became better, I believe it's because I wasn't forcing my body to do things as much.I went to college and I was still passing out but I had got used to it and it wasn't as frequent then I got a job as a carer in a residential home two years ago and I absolutely loved it and then all of a sudden I was passing out and having panic attacks and I couldn't get out of bed so my doctors prescribed some antidepressants and my body couldn't handle it and I ended up going to hospital. My manager was really understanding and she let me take time off work, I think tried to return but I couldn't physically or mentally do it. I then got referred to a paychatrist who put me on so many meds for mental illnesses, they even put me in a psychiatric ward for a night as they believed it was in my head. I then got stuck in my home for 8 months and I lived alone so I was struggling and I became scared of going outside just incase I passed out and I felt so horrible all the time. I kept on to the doctors as I knew it wasn't in my head so they did a 48 hour ECG then referred me for a tilt table test. Then I can back positive for POTS just in July last year and I was so relieved as I knew it wasn't in my head, I still struggle alot with it sometimes I have yet to try compression socks,some days are better than others I also thing I have some other underlying conditions but any extra symptoms I have my cardiologist puts it down to POTS which I do not believe and clearly I know my own body :) Thank you for reading,I hope to be like you one day
Ugh. Yes! That sounds exactly like my story! People telling me its all in my head! We are in this together!!! Thanks so much for sharing your story with me. You got this!
Thank you so much for replying!! I didnt even see this, I have standard compression socks but I have yet to try the good socks!! I need to get them on prescription as I'm on the UK and I can't find no where here to get them from 🙂
Aimee, your story aligns almost exactly with mine. It's almost like you're telling my story. It's surreal. I'm still going through getting a diagnosis. My naturopathic doctor just took blood and my ANA tested positive. Still no diagnosis.
How did you keep going with your life even though these symptoms were taking over your life? It feels like I don't have the right to feel so bad because it's not diagnosed or anything deathly, which is silly. My quality of life has dropped drastically within the last year and a half and my doctor thinks its going to be an autoimmune disease of some sort but everything I've been tested for has been ruled out like Celiac and Crohns. I was searching on youtube just to see if anyone has a similar experience to my own and hoping get some motivation to keep going and trying despite how bad life is right now and you were one of the only personalities that popped up. Thanks for posting your experience because I feel so alone right now in my situation.
Aimee I think you are so amazing! I can only imagine how hard it has been to go so long without answers but you are always so positive and such a great example!
You have such a great attitude for all that you’ve been through! I was recently diagnosed with fibro and chronic fatigue though this has been going on a few years. I managed to get married while in a severe fibro flare up. Never knew fatigue could be so debilitating through all of this. All the while getting off a bunch of meds in the last two years (mental health) to try to get pregnant. I am getting tested for pots soon. Your story is so uplifting. I really want to be a mom and to feel my best. Take it one day at a time. Thank you for sharing! Wishing you and your family all the best!
New subscriber, here. My name is Caren. I'm 55, and I also have Hashimotos, fibromyalgia, cfs/me, IBS, yada yada. I'll be watching your other videos soon. I'm actually unemployed and on disability thanks to my fatigue and chronic pain. And I live alone, with pets at least (birds and cats). My son and daughter are both in their 20s and on their own. Thanks for sharing your story. I'll likely comment on more of your videos as I watch them. 💜
Welcome to the chronic fam! Thanks for sharing your story with me. I am so sorry you are going through so much. You are amazing. Keep fighting! Feel free to share with me any topics you'd like me to discuss in future videos! :)
Hi I'm tom I seen your channel I decided to subscribe to your channel. I can completely relate to your story. I have small fiber neuropathy and fibromyalgia and ibs brain fog sometimes I'm glad I'm not alone I started having symptoms September 2005 I was diagnosed in 2008 so I have had these conditions that long I have had up and downs just like you. But I didn't feel completely happy until December 2015 I just started thinking positive and that have helped me I know what u mean having pain flare ups. But I wouldn't trade my life for anyone else because I believe God choose me they say god don't give to much that you can handle and I'm 40 years old. I believe God had it happen for a reason to see your channel I feel like you a new friend family because I know I'm not alone god bless
I cant tell you how similar your story sounds to mine only I cant get a real diagnosis. The best I was given was "you have IBS, we dont know what's wrong with you" and was left like that. 10 years of all these invasive tests and procedures all for nothing. Dont really know what else to do. Started in 2011 when I first started college at age 19. I've dropped out several times, quit my job and put my entire life on hold. I've changed my diet SO many times, taken a chemical cocktail of pharmaceutical medications and natural supplements for little to no relief. So many doctors, 0 answers other than "IBS". I turn 29 in July and it's been the worst 10 years of my life with little relief. I'm lost and severely depressed
This was a really informative video! Im sorry you have gone through so much. I'm super excited you at least have your daughter tho! You make me wonder if soemthing is going on with me! For the past 3 years I've had a major appetite problem and just dont feel healthy. But idk I never bring it up to my doctor cause I'm just paranoid!
I hope you figure out your medical mystery someday! Its hard because doctors dont always take your symptoms seriously.. you have to keep bugging them until you get answers!!
Have you heard of Aimee McNew? She's my friend and text buddy for my own miscarriage/fertility issues. Anyway, she has Hashimoto's and wrote a book on it called The Everything Guide to Hashimoto's.
I know the feeling😭something is wrong and they tell you everything is fine 😡😡😡😡😡😡😡😡😡😡😡😡and its NOT fine🤬 then you keep repeating yourself to everyone and they don’t here you. All I feel like doing is cussing at them and tell them go back to school and relearn your shit!!!!!!!!!!!!!!!!!!!!!!🤦♀️
Thanks so much for the info! Ive been tested for lymes a few times and all neg. Plus ive never been anywhere where lymes is common.. So glad to finally have answers!!!
This sounds similar to me! I am still undiagnosed however currently I suspect Lupus, Crohns, Mast Cell Activation Disorder, POTS, Scleroderma or EDS type 3....hopefully answers will come soon
I think you felt horrible after blood treatment because you had bacterial die off that released endotoxins. I am not a dr. Just an EMT but I was misdiagnosed w just Lyme. And dr missed bart. For years ll sort of weird symptoms. Fast forward 2016 get bit. Diagnosis. Lyme bart bab. And chronic bart you should really look into Lyme bart. Does your child have any issues? Tics, neurological issues, unexplained rashes etc. I’m happy the socks work but there I still believe the underlying cause is bacteria causing Hashimoto and pots maybe I am wrong but hope you look into it. Do you ever wake up w pains in sole of feet? If so that is classic bart symptom.
Dr told me bacteria die off could maybe make me feel that way but none of my symptoms changed after that so we know that it didnt do a thing unfortunatley. All it did was make my POTS much worse. I had to quit my job soon after.
I only get pain in my feet when i stand too long without compression socks on and my blood starts to pool. My daughter has a couple food allergies but shes completely healthy!! My chronic illnesses dont cause any issues to my babies but increased risk of early miscarriage. Im 13 weeks pregnant with a baby boy right now!😊😊
I have hips, low back and knee pain doctors says it is all okey...thyroid problem and vericoses veins...I have 26...I feel like a shit ...and I think I am crazy because they dont see ilness lol blood tests is perfect and rendgen are okey...crazy
I’m 16 and due to the covid 19 i can’t go to the hospitals and it’s frustrating because i know something’s wrong with me but everyone seems to think i’m normal & and i’m over exaggerating but there’s not one day i don’t wake up to feeling something in my body bothering me especial my legs feeling numb and stomach feeling bloated. i’m happy i’m not the only one🤞🏿. thank you for sharing your story
Wishing you the best!! Keep me updated!
OMG. Your story really means so much to me. I'm at the part of your story where I feel like I'm crazy and I'm randomly crying because I know something's wrong with me and all of my test keep coming back normal. My doctors are starting to treat me like I'm a hypochondriac. I've already been diagnosed with fibromyalgia but I constantly have abdominal pain, I'm always way more fatigued than other people I know that have fibromyalgia, and I constantly feel like my joints are dislocating and popping back in. I'm always in so much pain that I want to cry but all my doctors just say I have fibromyalgia and I need to live with it. I know that there's more to it than that.
Ugh. Im so sorry you have to live this way. I want you to know you arent alone!!!! I am with you. We will fight for you!!! Thanks for sharing your story!
Theresa, have you ever looked into EDS? (Ehlers Danlos Syndrome) with your pain and joint issues, as well as your digestive issues (common comorbidity with EDS is gastroparesis and other GI conditions) it might be a good fit. It can be really hard to get a diagnosis but it might be worth exploring
Lupus?
Have you been tested for Coeliac disease??
@@adelequinn3334 I was tested a while ago but I didn't have very strong markers. I did start eating gluten-free which has helped with digestive issues, but not the pain. My father has it so I'm about to get the genetic test to see if I have the gene, and if I do, I'm probably going to go off the gf diet and get tested again.
Hi Aimme. You sound just like me. I'm 71 now. But I had Endometreosis at 32. I had a Hysterectomy and haven't been well since. I have seen every one, done every thing, spent thousands. And desperate just like you. I feel for you. You look so well. I was told I have CFS 35 years ago. I have had every test saw every Doctor. I had breast cancer, now I have Fibromyalgia. I tested positive for Methane Sibo. Antibiotics did nothing. Saw private Doctors, took natural things. Every diet possible, but I'm still ill. I wish you so much luck. I do hope one day things will sort there selves out for you. I beleave it's all hormonal in origins. Mine all started with my Hysterectomy. I had HRT for over 20 years, it caused breast Cancer. Sending you love. X
I love how positive you are about it all 😁 my symptoms started 9 years ago I was passing out and couldn't breath and kept getting extreme migraines. I had loads of blood work and other tests and everything came up fine, after 3 years of trying to find a physical illness they put it down to mental illness and I was telling all my therapists that it was not in my head. Two years after therapy and still fainting multiple times a day the doctors redid all my physical tests again and the only thing that they found was a slightly over active thyroid which the doctors said would go away on its own. I started loosing weight and becoming really depressed at this point. I was still having therapy but the doctors dismissed any physical problems. Then after I left school my symptoms became better, I believe it's because I wasn't forcing my body to do things as much.I went to college and I was still passing out but I had got used to it and it wasn't as frequent then I got a job as a carer in a residential home two years ago and I absolutely loved it and then all of a sudden I was passing out and having panic attacks and I couldn't get out of bed so my doctors prescribed some antidepressants and my body couldn't handle it and I ended up going to hospital. My manager was really understanding and she let me take time off work, I think tried to return but I couldn't physically or mentally do it. I then got referred to a paychatrist who put me on so many meds for mental illnesses, they even put me in a psychiatric ward for a night as they believed it was in my head. I then got stuck in my home for 8 months and I lived alone so I was struggling and I became scared of going outside just incase I passed out and I felt so horrible all the time. I kept on to the doctors as I knew it wasn't in my head so they did a 48 hour ECG then referred me for a tilt table test. Then I can back positive for POTS just in July last year and I was so relieved as I knew it wasn't in my head, I still struggle alot with it sometimes I have yet to try compression socks,some days are better than others I also thing I have some other underlying conditions but any extra symptoms I have my cardiologist puts it down to POTS which I do not believe and clearly I know my own body :) Thank you for reading,I hope to be like you one day
Ugh. Yes! That sounds exactly like my story! People telling me its all in my head! We are in this together!!! Thanks so much for sharing your story with me. You got this!
Also try socks ASAP!!! THEY HAVE CHANGED MY LIFE!!! 😊😊😊
Thank you so much for replying!! I didnt even see this, I have standard compression socks but I have yet to try the good socks!! I need to get them on prescription as I'm on the UK and I can't find no where here to get them from 🙂
Aimee, your story aligns almost exactly with mine. It's almost like you're telling my story. It's surreal. I'm still going through getting a diagnosis. My naturopathic doctor just took blood and my ANA tested positive. Still no diagnosis.
Yup! That sounds like me! I felt like it was all in my head. But it's not. Your pain is REAL. KEEP FIGHTING! Don't stop until you have answers!!!
With all the stuff you go through your so positive !!
I try! :)
How did you keep going with your life even though these symptoms were taking over your life? It feels like I don't have the right to feel so bad because it's not diagnosed or anything deathly, which is silly. My quality of life has dropped drastically within the last year and a half and my doctor thinks its going to be an autoimmune disease of some sort but everything I've been tested for has been ruled out like Celiac and Crohns. I was searching on youtube just to see if anyone has a similar experience to my own and hoping get some motivation to keep going and trying despite how bad life is right now and you were one of the only personalities that popped up. Thanks for posting your experience because I feel so alone right now in my situation.
Aimee I think you are so amazing! I can only imagine how hard it has been to go so long without answers but you are always so positive and such a great example!
Thanks girl ❤❤
You have such a great attitude for all that you’ve been through! I was recently diagnosed with fibro and chronic fatigue though this has been going on a few years. I managed to get married while in a severe fibro flare up. Never knew fatigue could be so debilitating through all of this. All the while getting off a bunch of meds in the last two years (mental health) to try to get pregnant. I am getting tested for pots soon. Your story is so uplifting. I really want to be a mom and to feel my best. Take it one day at a time. Thank you for sharing! Wishing you and your family all the best!
New subscriber, here. My name is Caren. I'm 55, and I also have Hashimotos, fibromyalgia, cfs/me, IBS, yada yada. I'll be watching your other videos soon. I'm actually unemployed and on disability thanks to my fatigue and chronic pain. And I live alone, with pets at least (birds and cats). My son and daughter are both in their 20s and on their own.
Thanks for sharing your story. I'll likely comment on more of your videos as I watch them. 💜
Welcome to the chronic fam! Thanks for sharing your story with me. I am so sorry you are going through so much. You are amazing. Keep fighting!
Feel free to share with me any topics you'd like me to discuss in future videos! :)
Hi I'm tom I seen your channel I decided to subscribe to your channel. I can completely relate to your story. I have small fiber neuropathy and fibromyalgia and ibs brain fog sometimes I'm glad I'm not alone I started having symptoms September 2005 I was diagnosed in 2008 so I have had these conditions that long I have had up and downs just like you. But I didn't feel completely happy until December 2015 I just started thinking positive and that have helped me I know what u mean having pain flare ups. But I wouldn't trade my life for anyone else because I believe God choose me they say god don't give to much that you can handle and I'm 40 years old. I believe God had it happen for a reason to see your channel I feel like you a new friend family because I know I'm not alone god bless
I cant tell you how similar your story sounds to mine only I cant get a real diagnosis. The best I was given was "you have IBS, we dont know what's wrong with you" and was left like that. 10 years of all these invasive tests and procedures all for nothing. Dont really know what else to do. Started in 2011 when I first started college at age 19. I've dropped out several times, quit my job and put my entire life on hold. I've changed my diet SO many times, taken a chemical cocktail of pharmaceutical medications and natural supplements for little to no relief. So many doctors, 0 answers other than "IBS". I turn 29 in July and it's been the worst 10 years of my life with little relief. I'm lost and severely depressed
Hi. I just started my own channel to share my health story. I have many of the same diagnosis as you and a few of my own.
WELCOME!!! :) thanks for sharing your story!
Wow so many things! 😳 love your outfit and earrings!!
This was a really informative video! Im sorry you have gone through so much. I'm super excited you at least have your daughter tho! You make me wonder if soemthing is going on with me! For the past 3 years I've had a major appetite problem and just dont feel healthy. But idk I never bring it up to my doctor cause I'm just paranoid!
I hope you figure out your medical mystery someday! Its hard because doctors dont always take your symptoms seriously.. you have to keep bugging them until you get answers!!
@@Aimee_Esther that's so trueeee :(
We have so many same conditions we are almost twin in health
Have you heard of Aimee McNew? She's my friend and text buddy for my own miscarriage/fertility issues. Anyway, she has Hashimoto's and wrote a book on it called The Everything Guide to Hashimoto's.
I won't ever forget this hvs2 situation through Dr ado he make me great
Fry labs Igenix Galaxy labs. There is a cause for Hashimoto. Please look into Lyme and CI-infections. Bartonella .
I know the feeling😭something is wrong and they tell you everything is fine 😡😡😡😡😡😡😡😡😡😡😡😡and its NOT fine🤬 then you keep repeating yourself to everyone and they don’t here you. All I feel like doing is cussing at them and tell them go back to school and relearn your shit!!!!!!!!!!!!!!!!!!!!!!🤦♀️
I’m only half way thru video and I’m thinking Lyme disease. More specifically Bartonella.
Thanks so much for the info! Ive been tested for lymes a few times and all neg. Plus ive never been anywhere where lymes is common.. So glad to finally have answers!!!
You look like Candace from you Netflix.
I just looked her up haha. Never heard of her, but I'll take that as a compliment :). Now my hair is short and blonde though lol
I think pots is a symptoms
Very sorry about your miscarriages. I think Bartonella
This sounds similar to me! I am still undiagnosed however currently I suspect Lupus, Crohns, Mast Cell Activation Disorder, POTS, Scleroderma or EDS type 3....hopefully answers will come soon
I think you felt horrible after blood treatment because you had bacterial die off that released endotoxins. I am not a dr. Just an EMT but I was misdiagnosed w just Lyme. And dr missed bart. For years ll sort of weird symptoms. Fast forward 2016 get bit. Diagnosis. Lyme bart bab. And chronic bart you should really look into Lyme bart. Does your child have any issues? Tics, neurological issues, unexplained rashes etc.
I’m happy the socks work but there I still believe the underlying cause is bacteria causing Hashimoto and pots maybe I am wrong but hope you look into it. Do you ever wake up w pains in sole of feet? If so that is classic bart symptom.
Dr told me bacteria die off could maybe make me feel that way but none of my symptoms changed after that so we know that it didnt do a thing unfortunatley. All it did was make my POTS much worse. I had to quit my job soon after.
I only get pain in my feet when i stand too long without compression socks on and my blood starts to pool.
My daughter has a couple food allergies but shes completely healthy!! My chronic illnesses dont cause any issues to my babies but increased risk of early miscarriage. Im 13 weeks pregnant with a baby boy right now!😊😊
you got to get rid of the un diagnosed lyme disease, you need to be on antibiotics for 1 years
I don't have lyme disease but maybe this info could help someone out there who does.Thanks for sharing.
I have hips, low back and knee pain doctors says it is all okey...thyroid problem and vericoses veins...I have 26...I feel like a shit ...and I think I am crazy because they dont see ilness lol blood tests is perfect and rendgen are okey...crazy
UGH. SO sorry you have to deal with that! It can be so frustrating! :/ Keep me updated on how you are doing!