Your story sounds a lot like my Ehlers Danlos syndrome (EDS) journey. For quite some time, I had been misdiagnosed as having Fibromyalgia, but my EDS diagnosis replaced the Fibromyalgia diagnosis. EDS is a differential diagnosis that disqualified me for having a Fibromyalgia diagnosis, due to the specific diagnostic criteria of Fibromyalgia. After decades of doctors often not taking me seriously, the EDS diagnosis finally got me taken more serious and grated me access to much better overall healthcare.
I have also had terrible experiences in the medical system and have been gaslit and talked down to condescendingly.... so I know your struggle. You are not alone in your medical trauma, and thank you for sharing because it does help raise awareness.
Thank you for sharing your story sweet girl! And for prayers for your viewers! Valuable information for those of us wondering if this is what’s going on with us too 💕
@@B3l0v3d05 Classical type Ehlers Danlos syndrome. There are 13 different types of EDS. Classical is the second-most common type, if I remember correctly. Hypermobile type I know for sure is the most common type of EDS.
Thank you so much for sharing your story. I'm a zebra and was just diagnosed this year. I decided to create a TH-cam channel to document my journey and help others. Sending you many positive vibes and strength. I know it's far from easy. 🩷🦓
Story of my life. I'm currently looking to get my diagnosis at 34 yrs old. I spent my entire life in pain, all over body pain, nauseous, allergies, and so much more. I work myself so hard then I'm down for a day . Anxiety is high , top that off with audhd symptoms I'm just a genetic masterpiece 😊
it's so awful what that has done to ppl 🙁 I'm so sorry for what you've been through. I pray you find healing n relief 💜🙏 my illnesses werent brought on from that but I have a lot of chronic auto immune diseases that I've been dealing w for many years n I know what it's like to be living a lot of life from bed. i really hope n pray u find healing soon! 💗
My daughter 14 y old having the exact same thing happening to her. I pray she doesn’t get misdiagnosed she’s got an appointment for cardiologist finally after 1 year of This. She’s got a referral to neurologist which is taking forever I hope this gets treated properly. I originally thought chronic fatigue but she may have both. Pots and chronic fatigue syndrome. My poor baby isn’t herself anymore. What teen wants to miss out on life?
Oh wow, this hurts my heart so much! also I can relate so much as well. Chronic Fatigue Syndrome was my first diagnosis and then the rest came after. It's such a hard slog with waiting lists and appointments. I can imagine this is so hard for you as her mum. Sending love to you both and hope you're both hanging in there
Reporting that nurse would've been good, because that situation was potentially a malpractice or medical negligence situation. That clinic needs to know that the nurse was outside her scope of practice by telling you that wasn't an asthma attack, when it actually was an asthma attack. My daughter had similar health issues, and I would accompany her on doctor visits to help advocate for her. I highly recommend people have an advocate to accompany them during their medical appointments. A family member who spends a lot of time with you in your daily life is also very helpful, since they can provide information and first-hand witness accounts of your medical issues that you might forget to tell the doctor.
yes totally I agree, it was so long ago now though that I have no idea who the nurse was. Young women are particularly vulnerable to being gaslit so I hope that sharing my content will help future patients :)
I also have dysautonomia, and suffered with POTS for about 6 months in 2022. I was equally frustrated with the mainstream medical system. Luckily I found a functional chiropractic neurologist, who diagnosed me, and knew how to treat me with physical/neuro therapy and without any medications. A few months later I was POTS free. I still have some dysautonomia symptoms, but they're a lot milder and I've been improving little by little, but noticeably each month or so. I highly recommend to look into functional neurology or even just brain retraining, as these are ways to help calm and rebalance the autonomic nervous system and many people fully recover or at least get a lot better, without any medications and their side effects.
Where are you located? I saw a functional neurologist and I had mild improvements and we came to a plateau. He basically felt I needed more help from another source such as naturopathic doctor and supplements... I saw the functional neurologist for about 2.5 months. It's extremely expensive and I can't afford to keep going as I was previously but I wonder if maybe 2 times a month would help? How long did you go for and do you still go?
@@MissMoMoCita SF Bay Area. I went twice a week for 2 months, then once a week for a while after that. I gradually cut that down to once a month over the last year. I still go now and then when symptoms flare up, but not regularly. My functional neurology docs know a lot about helpful supplements and recommended several during my initial treatment. Try the FLCCC long covid page for supplement suggestions. Many of them are specifically helpful for dysautonomia. If you're hitting a plateau, you might need to focus on more basic things like more sleep (that was the most helpful single thing in my recovery, though the other things were also very helpful). Also, food sensitivities can sometimes play a role, so you might want to cut out gluten, dairy, and soy for a while and see if that helps.
Beta blockers were no good for me, either. They can help certain people with their POTS, but not all. There's a wide array of POTS medications, and it all comes down to a patient and doctor working with each other to find which medication or medication addresses the individual patient best. Ivabradine is often used in patients who can't tolerate beta blockers. Guanfacine/Clonidine helped me most, since I have hyperadrenergic POTS and this type of medication prevents adrenal surges and calms the sympathetic nervous system (fight or flight response). There are several other medication types that can treat POTS as well. Definitely don't give up if the first one or two doesn't work! Wearing compression calf sleeves like the marathon runners wear can help a bit. Saline infusions during the hot months of the year can help some people, but not all - this is another thing that needs to be discussed with a person's doctor.
POTS was my first symptom of my Ehlers Danlos syndrome (EDS), and is very common in EDS patients. EDS is notorious for causing fatigue and post-exertional malaise as well. POTS also aggravates and amplifies the fatigue and malaise.
@@B3l0v3d05 The effects of my EDS cause nervous system dysregulation, too. Both sympathetic and parasympathetic nervous systems are affected by my EDS.
Thanks for sharing with such clarity, I'm sure this is super helpful to anyone who is unwell regularly
Thank you so much! I hope it helps others
You and I both. The doctor just gives me vitamins for the fatigue, but no amount of sleep or anything fixes this.
Same with me. It's really frustrating
Your story sounds a lot like my Ehlers Danlos syndrome (EDS) journey. For quite some time, I had been misdiagnosed as having Fibromyalgia, but my EDS diagnosis replaced the Fibromyalgia diagnosis. EDS is a differential diagnosis that disqualified me for having a Fibromyalgia diagnosis, due to the specific diagnostic criteria of Fibromyalgia. After decades of doctors often not taking me seriously, the EDS diagnosis finally got me taken more serious and grated me access to much better overall healthcare.
I was also going to say this reminds me of EDS as well!
Magnesium, Vitamin C and fish oil has made a huge difference for me.. I really feel horrible if I miss a dose 💕👍🏽
I have a similar story from being a super athletic kid to suddenly sick as a teen x
I have also had terrible experiences in the medical system and have been gaslit and talked down to condescendingly.... so I know your struggle. You are not alone in your medical trauma, and thank you for sharing because it does help raise awareness.
I'm so sorry you've experienced this 😔
Thank you for sharing your story! As someone who is in the process of being diagnosed with POTS as well, this helped a lot.
@@emilymccrary3911 you are welcome ♥️
Thank you for sharing your story sweet girl! And for prayers for your viewers! Valuable information for those of us wondering if this is what’s going on with us too 💕
Thank you so much, I am so very glad that the information has been helpful for you!! keep hanging in there!
My Neurologist did the” poor man’s Tilt- table “ test on me and that how I got Dx with POTS. I also have Asthma and cEDS.
May I ask, what is cEDS?
@@B3l0v3d05 Classical type Ehlers Danlos syndrome. There are 13 different types of EDS. Classical is the second-most common type, if I remember correctly. Hypermobile type I know for sure is the most common type of EDS.
Thank you for sharing this. It is brave to share your story.
Keep up the great work. 👍
Thank you so much, I really appreciate that!
Thank you so much for sharing your story. I'm a zebra and was just diagnosed this year. I decided to create a TH-cam channel to document my journey and help others. Sending you many positive vibes and strength. I know it's far from easy. 🩷🦓
Hi! I'm relating so much to your story. Thank you so much for sharing it!
@@mellyawkward thank you so much
You articulated everything so well, thank you for this video and wishing you all the best!
@@izzydianaa thank you so much! Wishing you the best as well
@@iammellbell I also wanna say you are glowing in this video! Xx
Story of my life. I'm currently looking to get my diagnosis at 34 yrs old. I spent my entire life in pain, all over body pain, nauseous, allergies, and so much more. I work myself so hard then I'm down for a day . Anxiety is high , top that off with audhd symptoms I'm just a genetic masterpiece 😊
I'm so sorry to hear that :( I definitely have the tendency to work myself too hard as well. I hope you're hanging in there
Thank you)
Tell us in the next videos what helped the cure.
I will share more in detail in future videos as I am improving :)
Me too!!! got sick after H P V needle. bedridden and severe illness going on 5 years now
@@kristileemaiellachoreo that was it for me too :( I'm so sorry you've experienced it :(
@@iammellbell I had a feeling, you too
it's so awful what that has done to ppl 🙁 I'm so sorry for what you've been through. I pray you find healing n relief 💜🙏
my illnesses werent brought on from that but I have a lot of chronic auto immune diseases that I've been dealing w for many years n I know what it's like to be living a lot of life from bed. i really hope n pray u find healing soon! 💗
Have you had the prolotherapy yet?
In my SI joints and some superficial ligaments in my T spine yes, but not in my neck yet :)
My daughter 14 y old having the exact same thing happening to her. I pray she doesn’t get misdiagnosed she’s got an appointment for cardiologist finally after 1 year of This. She’s got a referral to neurologist which is taking forever I hope this gets treated properly. I originally thought chronic fatigue but she may have both. Pots and chronic fatigue syndrome. My poor baby isn’t herself anymore. What teen wants to miss out on life?
Oh wow, this hurts my heart so much! also I can relate so much as well. Chronic Fatigue Syndrome was my first diagnosis and then the rest came after. It's such a hard slog with waiting lists and appointments. I can imagine this is so hard for you as her mum. Sending love to you both and hope you're both hanging in there
What's "the thing that goes in your arm"?
Vaccination
Reporting that nurse would've been good, because that situation was potentially a malpractice or medical negligence situation. That clinic needs to know that the nurse was outside her scope of practice by telling you that wasn't an asthma attack, when it actually was an asthma attack.
My daughter had similar health issues, and I would accompany her on doctor visits to help advocate for her. I highly recommend people have an advocate to accompany them during their medical appointments. A family member who spends a lot of time with you in your daily life is also very helpful, since they can provide information and first-hand witness accounts of your medical issues that you might forget to tell the doctor.
yes totally I agree, it was so long ago now though that I have no idea who the nurse was. Young women are particularly vulnerable to being gaslit so I hope that sharing my content will help future patients :)
I also have dysautonomia, and suffered with POTS for about 6 months in 2022. I was equally frustrated with the mainstream medical system. Luckily I found a functional chiropractic neurologist, who diagnosed me, and knew how to treat me with physical/neuro therapy and without any medications. A few months later I was POTS free. I still have some dysautonomia symptoms, but they're a lot milder and I've been improving little by little, but noticeably each month or so. I highly recommend to look into functional neurology or even just brain retraining, as these are ways to help calm and rebalance the autonomic nervous system and many people fully recover or at least get a lot better, without any medications and their side effects.
Where are you located? I saw a functional neurologist and I had mild improvements and we came to a plateau. He basically felt I needed more help from another source such as naturopathic doctor and supplements... I saw the functional neurologist for about 2.5 months. It's extremely expensive and I can't afford to keep going as I was previously but I wonder if maybe 2 times a month would help? How long did you go for and do you still go?
@@MissMoMoCita SF Bay Area. I went twice a week for 2 months, then once a week for a while after that. I gradually cut that down to once a month over the last year. I still go now and then when symptoms flare up, but not regularly. My functional neurology docs know a lot about helpful supplements and recommended several during my initial treatment. Try the FLCCC long covid page for supplement suggestions. Many of them are specifically helpful for dysautonomia. If you're hitting a plateau, you might need to focus on more basic things like more sleep (that was the most helpful single thing in my recovery, though the other things were also very helpful). Also, food sensitivities can sometimes play a role, so you might want to cut out gluten, dairy, and soy for a while and see if that helps.
Beta blockers were no good for me, either. They can help certain people with their POTS, but not all. There's a wide array of POTS medications, and it all comes down to a patient and doctor working with each other to find which medication or medication addresses the individual patient best. Ivabradine is often used in patients who can't tolerate beta blockers. Guanfacine/Clonidine helped me most, since I have hyperadrenergic POTS and this type of medication prevents adrenal surges and calms the sympathetic nervous system (fight or flight response). There are several other medication types that can treat POTS as well. Definitely don't give up if the first one or two doesn't work!
Wearing compression calf sleeves like the marathon runners wear can help a bit. Saline infusions during the hot months of the year can help some people, but not all - this is another thing that needs to be discussed with a person's doctor.
Are you saying you have asthma And POTS?
@@daphnebrooke-fv3dw yes, the video is about my diagnosis story
I thought POTS is a symptom of MEcfs?
they can definetly go together and often CFS is a symptom of POTS but they can also be seperate from each other
@@iammellbell oh so the PEM is part of POTS too?
POTS was my first symptom of my Ehlers Danlos syndrome (EDS), and is very common in EDS patients. EDS is notorious for causing fatigue and post-exertional malaise as well. POTS also aggravates and amplifies the fatigue and malaise.
@@Dulcimerist nervous system dysregulation does all this too
@@B3l0v3d05 The effects of my EDS cause nervous system dysregulation, too. Both sympathetic and parasympathetic nervous systems are affected by my EDS.