You give me a lot of hope! I'm 20, with a few chronical illnesses, and it's incredibly hard. You have a family, a house, a job, babies... while having all of those issues! You give me so much hope ❤
It’s really scary listening to people that our stories are really similar and yet we feel so stinking alone in it all. I’ve had migraines and pain since I was 10. No one believed me then. Got married young and then got in a bad car accident at 19. Got a depo shot and didn’t have a period for almost 2 years. Got pregnant and almost lost my daughter because my hormones weren’t right. Then we moved and I got bit by a diamondback rattlesnake and my pain BLEW up. Don’t know if it was the bite or the anti venom. Two years later they told me it was black mold allergy and fibro. But things just keep getting worse. Getting others to believe me has been impossible other than my partner. I know I have anxiety and medical ptsd and have given up all hope of a diagnosis at this point. I’m just in pain and limbo. Recently got Covid and now I’m having even more issues. But sadly refuse to try any new docs after everything I have been through. Sadly people think we want to be sick or just want attention and I want neither. I just want to know what is wrong so I know what I am fighting. Instead I feel like I battle the boogie man everyday!!!!
Ugh. I'm SO sorry you are struggling. You have overcome so much!! It's not fair that you have had all these trials. 😥 People who don't live this way don't understand. I totally understand that feeling of hearing others similar stories but still feeling alone! That's why I started a community and we do live calls. It's a place to talk to each other and uplift each other as we struggle through this chronic illness trial. Here's a link if you want to join us. 😊 aimeeesther.podia.com/community
The symptoms from my Ehlers Danlos syndrome - especially the fatigue and brain fog - started to really hit me when I got a microplasmic pneumonia when I was in 6th grade. It got worse when I had some sort of viral infection similar to mono in 10th grade.
Dealing with a lot of the same issues: had my gallbladder removed earlier this year, fibromyalgia (dubious about this diagnosis), IBS for most of my life, GERD, a kidney stone earlier this year, neuropathy that comes and goes.
It's really interesting hearing you talk about not having problems regarding endometriosis since your hysterectomy. Endo is a full body disease and doesn't have a cure so some symptoms could still relate back to that. I adore your videos and I'm learning so much. I also have multiple chronic illnesses, but endo kicks my butt the most.
I have talked to people that had Sibo for 30 years and got rid of it. I have had Sibo over 22 years you need to find the root cause of the Sibo if you can.
Mine unfortunately is inherited my mom has polymyalgia, fibromyalgia, some weird autoimmune disease. My sister has fibro, and psoriatic arthritis, my aunt has Ms.
I think that for me it is a mix as well. I have had so many mental health problems for years with not many physical problems. Then I got very physically sick.
Somewhat of my story is similar to yours, I’ve been battling migraines since I was 16 it doesn’t help that my mom died of liver cancer around the same time my migraines started. I was raped at 17 and I never dealt with any of the trauma from either one I just went to school and went to work after, to try and help my dad with anything I could but mostly I just paid for all of my needs food, clothes etc. My twin sister couldn’t cope after the loss of our mother and she stayed in a mental hospital for a while so I had to be the stronger one I collected all her schoolwork and brought it to the hospital once a week for months. After the rape happened I still struggled everyday to go on but I did, I graduated and moved away I carry all the pain and emotions still but it’s in different forms like CFS and fibromyalgia and chronic migraines it never really leaves you.
Really sorry to hear you've gone through so many horrible things. Have you looked into limbic retraining , somatic work, IFS etc? I was sexually abused as a little kid, abused in various forms for 20+ years, medical trauma since age 2 etc. Resulted in a ton of nervous system dysregulation, isolation, auto immune diseases, CPTSD, and body dysfunction. From all my research over the past 15 years I've boiled most of our symptoms down to the body trying to communicate with us, nervous system dysregulation, limbic issues, cell danger, chronic stress and sympathetic activation, shutdown / freeze etc. As well as lack of micro nutrients and environmental toxicity. I see so many who figure out the root causes, make changes and then everything just melts away. I.e move through past events without going into dorsal vagal / freeze. It's complex, but I believe we all have the capacity to heal without meds. Especially chronic long driven issues. Wishing you all the best. Be well ❤️🙏🏻
One of my doctors states that treating my endometriosis it was chronic pain from age 14 into 39 and then suddenly I was pain-free for six months, and then I had all my health conditions, full-blown fibromyalgia, chronic fatigue syndrome in the rest history they said that they think because I was in a constant state of chronic distress fighter flight in the pain that once there was no more pain, my body freaked out, and Reverted back to signaling me that I’m in danger. I don’t regret doing the surgery because it did free me from that but now I’m dealing with all of this and I definitely had fibromyalgia for like at least nine years before but it was like just creeping on, and the surgery seemed to push it over the edge, not even the surgery but the lack of chronic pain
For me it started after a progesterone shot. It wasn't the cause, it was the triggering event that caused reactivation in latent viruses and neurological disfunction. I think that chronic conditions always have underlying emotional trauma mixed with physical predisposition and environmental/pathogenic reasons as well. Trauma doesn't have to be something that happened to you, it can also be stuff that should have happened but never did. I hope you find your reason soon and work through it 🙂
I agree with you on emotional trauma/stress almost always being one of the causes of chronic illness. But it is never the only one, you also still need bad genetics, infections etc. Like you said it's always multiple factors... Which makes it so incredibly complex and frustrating to deal with :/
I think the underlying cause for chronic diseases is genetic, especially when coupled with neurodivergence. I was given fluoroquinolone in 2015, at 26 yo (not in the US). one year later, its administration was radically restricted because of severe adverse effect in certain population groups, but I guess my doctor didn't know? she was young, she was giving me a second antibiotic in a row and just asked, 'do you have any chronic illnesses?' and the rest is history. as a result of her decision, I learnt about all the illnesses I had and was hospitalised with acute EBV and arthritis. I wish she had just been honest and asked me if I wanted to try a risky antibiotic, because God knows I would have said no. today, after having dealt with the grief, I know it could have been any other event - my genetic cards were kind of dealt, and maybe I would never be able to escape the chronic illnesses throughout my life anyway, or would only have a slim chance of doing so (I did identify borderline MCAS symptoms before that immune crush). I am autistic and I also had severe burnouts that could have contributed to my immune system overdrive as well. I am now on my journey to amend that.
I have those weird foot bumps too! They are called Piezogenic papules. I saw somewhere that many people who have Ehler’s Danlos syndrome have those bumps so maybe it’s an autoimmune thing? I don’t have Ehler’s Danlos. But I do have Mast Cell Activation Syndrome and POTS. Mine was started when I caught Covid in July of 2020. (Before the vaccine existed) My immunologist says many people who have long Covid have Mast Cell Activation Syndrome and POTS. I think anything that gets your immune system revved up can cause these auto immune issues in some people who are maybe predisposed like we are? Stress definitely flares my MCAS. Although Cromolyn and Monteleukast have been able to help a lot with the flares for me. I am sorry you’re going through this at such a young age. Before I found my doctor I have now, I was told I was having panic attacks (which was really just my POTS) and that there wasn’t anything I was allergic to so they didn’t know what my lips, tongue, and throat were swelling up every day. I had every test from ANA to a bone marrow biopsy. If anyone is going through this, don’t stop until you find a doctor that can help you.
@@DulcimeristHowever, they are one of the indicators on the test for Ehler’s Danlos syndrome as well because of connective tissue disorder that makes it more likely for the layer to herniate through the dermis.
@@Oogieone Exactly. I have hypermobile type Ehlers Danlos syndrome, and I've had the papules for as ling as I can remember. I had always thought they were normal, until I got diagnosed.
@@Catlily5 Push really hard on the bottom of your heel. You could stand with all of your weight on your heel and reach your camera down there to take a photo of it, which might work better.
I also wonder if people with PTSD are more likely to have autoimmune diseases because neurodivergent people are more likely to have PTSD (not least because of very vivid sensory processing and more traumatic experiences than an average neurotypical person).
I have a question for you...I have had multiple surges in my life but several years back I had my gallbladder out and I have not been able to eat normal since. Do you struggle with this? I take supplements and stomach enzymes and still get horrible pain. If you have any suggestions I would love to hear them. I have ibs as well. Diagnosed with the as a kid. Diagnosed with fibro as a kid too. Had a hysterectomy and oopherectomy at 35 and gained 40 pounds from the estrogen therapy. I have weightloss resistence now that I am older. Have you had any weight fluctuations from hormones and if so have you found anything that works for that. You look very in shape but I just wondered if you had any advice on that ? Thank you.
Yes I have been looking into EDS and I am 90% sure I have it. Working on a diagnosis! :) (I recorded this video before I started looking into EDS but I did do a video last week when I tested myself for it on camera)
Pots is connected to SIBO. SIBO is a MOTILITY ISSUE not a BACTERIA ISSUE. Stimulate motility in the small bowel. Ginger extract and artichoke extract in the morning on an empty stomach. MOTILITY PRO. Use magnesium to stimulate the large bowel to keep it moving.
I just turned 27 and I have both endometriosis and PCOS. I’m so tired of hormones being out of whack and it’s really taking a toll on my physical and emotional wellbeing 😔 especially since we’ve been trying for baby number 2. I’m just so exhausted.
Do you have chronic fatigue syndrome? I'm confused because you say chronic fatigue but not sure if that's caused by your other illnesses or if it is actually me cfs
Don’t call me out on holding in my emotions like that Aimee!😖😅😂 I know a lot of people online who got sick from emotional trauma and holding in emotions(which is exactly what I do to this day)😂. I had issues when I was young too, I’ve always had stomach issues probably from digestive and bacterial problems we’ve found, I had seizures when I was young, and I had bad heart palpitations that we thought was an inherited heart condition but was my POTS. I thought it was normal to be on a treadmill and feel like you are gonna black out. I went to a new physical therapist last week, and she is also trained in phycology. My fight/flight is on high I have so much fear at bedtime I actually go to my parents terrified as if I was 5 years old, it’s crazy. She’s trying to help on that. The problem is she wants me to visualize I’m safe and that just makes me panic more.😵💫 An interesting thing she talked about was my lymphatic system. She could tell my lymphatic system was all backed up with guck and did a massage to release it, and it obviously helped because that night I broke down in tears for no reason and had bumps on my skin showing my body was releasing something. She told me that all of her patients who have EDS and POTS either have EDS from family or they have ADHD and EDS and I thought of you. Thought I’d share that interesting information.😊
You give me a lot of hope! I'm 20, with a few chronical illnesses, and it's incredibly hard.
You have a family, a house, a job, babies... while having all of those issues! You give me so much hope ❤
It’s really scary listening to people that our stories are really similar and yet we feel so stinking alone in it all. I’ve had migraines and pain since I was 10. No one believed me then. Got married young and then got in a bad car accident at 19. Got a depo shot and didn’t have a period for almost 2 years. Got pregnant and almost lost my daughter because my hormones weren’t right. Then we moved and I got bit by a diamondback rattlesnake and my pain BLEW up. Don’t know if it was the bite or the anti venom. Two years later they told me it was black mold allergy and fibro. But things just keep getting worse. Getting others to believe me has been impossible other than my partner. I know I have anxiety and medical ptsd and have given up all hope of a diagnosis at this point. I’m just in pain and limbo. Recently got Covid and now I’m having even more issues. But sadly refuse to try any new docs after everything I have been through. Sadly people think we want to be sick or just want attention and I want neither. I just want to know what is wrong so I know what I am fighting. Instead I feel like I battle the boogie man everyday!!!!
Ugh. I'm SO sorry you are struggling. You have overcome so much!! It's not fair that you have had all these trials. 😥 People who don't live this way don't understand.
I totally understand that feeling of hearing others similar stories but still feeling alone! That's why I started a community and we do live calls. It's a place to talk to each other and uplift each other as we struggle through this chronic illness trial.
Here's a link if you want to join us. 😊 aimeeesther.podia.com/community
The symptoms from my Ehlers Danlos syndrome - especially the fatigue and brain fog - started to really hit me when I got a microplasmic pneumonia when I was in 6th grade. It got worse when I had some sort of viral infection similar to mono in 10th grade.
Dealing with a lot of the same issues: had my gallbladder removed earlier this year, fibromyalgia (dubious about this diagnosis), IBS for most of my life, GERD, a kidney stone earlier this year, neuropathy that comes and goes.
It's really interesting hearing you talk about not having problems regarding endometriosis since your hysterectomy. Endo is a full body disease and doesn't have a cure so some symptoms could still relate back to that. I adore your videos and I'm learning so much. I also have multiple chronic illnesses, but endo kicks my butt the most.
I have talked to people that had Sibo for 30 years and got rid of it. I have had Sibo over 22 years you need to find the root cause of the Sibo if you can.
Mine unfortunately is inherited my mom has polymyalgia, fibromyalgia, some weird autoimmune disease. My sister has fibro, and psoriatic arthritis, my aunt has Ms.
I think that for me it is a mix as well. I have had so many mental health problems for years with not many physical problems. Then I got very physically sick.
Somewhat of my story is similar to yours, I’ve been battling migraines since I was 16 it doesn’t help that my mom died of liver cancer around the same time my migraines started. I was raped at 17 and I never dealt with any of the trauma from either one I just went to school and went to work after, to try and help my dad with anything I could but mostly I just paid for all of my needs food, clothes etc. My twin sister couldn’t cope after the loss of our mother and she stayed in a mental hospital for a while so I had to be the stronger one I collected all her schoolwork and brought it to the hospital once a week for months. After the rape happened I still struggled everyday to go on but I did, I graduated and moved away I carry all the pain and emotions still but it’s in different forms like CFS and fibromyalgia and chronic migraines it never really leaves you.
Really sorry to hear you've gone through so many horrible things.
Have you looked into limbic retraining , somatic work, IFS etc?
I was sexually abused as a little kid, abused in various forms for 20+ years, medical trauma since age 2 etc. Resulted in a ton of nervous system dysregulation, isolation, auto immune diseases, CPTSD, and body dysfunction.
From all my research over the past 15 years I've boiled most of our symptoms down to the body trying to communicate with us, nervous system dysregulation, limbic issues, cell danger, chronic stress and sympathetic activation, shutdown / freeze etc. As well as lack of micro nutrients and environmental toxicity.
I see so many who figure out the root causes, make changes and then everything just melts away. I.e move through past events without going into dorsal vagal / freeze.
It's complex, but I believe we all have the capacity to heal without meds. Especially chronic long driven issues.
Wishing you all the best. Be well ❤️🙏🏻
One of my doctors states that treating my endometriosis it was chronic pain from age 14 into 39 and then suddenly I was pain-free for six months, and then I had all my health conditions, full-blown fibromyalgia, chronic fatigue syndrome in the rest history they said that they think because I was in a constant state of chronic distress fighter flight in the pain that once there was no more pain, my body freaked out, and Reverted back to signaling me that I’m in danger. I don’t regret doing the surgery because it did free me from that but now I’m dealing with all of this and I definitely had fibromyalgia for like at least nine years before but it was like just creeping on, and the surgery seemed to push it over the edge, not even the surgery but the lack of chronic pain
So interesting and similar with me
For me it started after a progesterone shot. It wasn't the cause, it was the triggering event that caused reactivation in latent viruses and neurological disfunction.
I think that chronic conditions always have underlying emotional trauma mixed with physical predisposition and environmental/pathogenic reasons as well.
Trauma doesn't have to be something that happened to you, it can also be stuff that should have happened but never did. I hope you find your reason soon and work through it 🙂
I agree with you on emotional trauma/stress almost always being one of the causes of chronic illness. But it is never the only one, you also still need bad genetics, infections etc. Like you said it's always multiple factors... Which makes it so incredibly complex and frustrating to deal with :/
I also experienced more emotional trauma from things I was never given (neglect) than stuff that was actively done to me.
I think the underlying cause for chronic diseases is genetic, especially when coupled with neurodivergence. I was given fluoroquinolone in 2015, at 26 yo (not in the US). one year later, its administration was radically restricted because of severe adverse effect in certain population groups, but I guess my doctor didn't know?
she was young, she was giving me a second antibiotic in a row and just asked, 'do you have any chronic illnesses?' and the rest is history. as a result of her decision, I learnt about all the illnesses I had and was hospitalised with acute EBV and arthritis. I wish she had just been honest and asked me if I wanted to try a risky antibiotic, because God knows I would have said no.
today, after having dealt with the grief, I know it could have been any other event - my genetic cards were kind of dealt, and maybe I would never be able to escape the chronic illnesses throughout my life anyway, or would only have a slim chance of doing so (I did identify borderline MCAS symptoms before that immune crush). I am autistic and I also had severe burnouts that could have contributed to my immune system overdrive as well. I am now on my journey to amend that.
I have those weird foot bumps too! They are called Piezogenic papules. I saw somewhere that many people who have Ehler’s Danlos syndrome have those bumps so maybe it’s an autoimmune thing? I don’t have Ehler’s Danlos. But I do have Mast Cell Activation Syndrome and POTS. Mine was started when I caught Covid in July of 2020. (Before the vaccine existed) My immunologist says many people who have long Covid have Mast Cell Activation Syndrome and POTS. I think anything that gets your immune system revved up can cause these auto immune issues in some people who are maybe predisposed like we are? Stress definitely flares my MCAS. Although Cromolyn and Monteleukast have been able to help a lot with the flares for me. I am sorry you’re going through this at such a young age. Before I found my doctor I have now, I was told I was having panic attacks (which was really just my POTS) and that there wasn’t anything I was allergic to so they didn’t know what my lips, tongue, and throat were swelling up every day. I had every test from ANA to a bone marrow biopsy. If anyone is going through this, don’t stop until you find a doctor that can help you.
The papules are from the herniation of fat through the dermis. It happens on the heels from the body weight being put on the heels.
@@DulcimeristHowever, they are one of the indicators on the test for Ehler’s Danlos syndrome as well because of connective tissue disorder that makes it more likely for the layer to herniate through the dermis.
@@Oogieone Exactly. I have hypermobile type Ehlers Danlos syndrome, and I've had the papules for as ling as I can remember. I had always thought they were normal, until I got diagnosed.
How can you see the papules on yourself? I have calluses from walking around barefoot and I can't tell.
@@Catlily5 Push really hard on the bottom of your heel. You could stand with all of your weight on your heel and reach your camera down there to take a photo of it, which might work better.
I also wonder if people with PTSD are more likely to have autoimmune diseases because neurodivergent people are more likely to have PTSD (not least because of very vivid sensory processing and more traumatic experiences than an average neurotypical person).
❤️❤️❤️
I have a question for you...I have had multiple surges in my life but several years back I had my gallbladder out and I have not been able to eat normal since. Do you struggle with this? I take supplements and stomach enzymes and still get horrible pain. If you have any suggestions I would love to hear them. I have ibs as well. Diagnosed with the as a kid. Diagnosed with fibro as a kid too. Had a hysterectomy and oopherectomy at 35 and gained 40 pounds from the estrogen therapy. I have weightloss resistence now that I am older. Have you had any weight fluctuations from hormones and if so have you found anything that works for that. You look very in shape but I just wondered if you had any advice on that ? Thank you.
Have you been checked for Sphincter of Oddi disfunction
@valentinaruseva7612 I had and endoscopy and they said all that was normal. Thanks.
@@amyschmier8090 Endoscopy can't diagnose this. It has to be ERCP (endoscopic retrograde cholangiopancreatography)
@@valentinaruseva7612 wow. I didn't know that. Thank you for your help!
I know I’m not a doctor but Love, those are all major symptoms of Ehlers Danlos Syndrome and I would highly recommend talking to your doctors about it
Yes I have been looking into EDS and I am 90% sure I have it. Working on a diagnosis! :) (I recorded this video before I started looking into EDS but I did do a video last week when I tested myself for it on camera)
Pots is connected to SIBO. SIBO is a MOTILITY ISSUE not a BACTERIA ISSUE.
Stimulate motility in the small bowel. Ginger extract and artichoke extract in the morning on an empty stomach. MOTILITY PRO.
Use magnesium to stimulate the large bowel to keep it moving.
I just turned 27 and I have both endometriosis and PCOS. I’m so tired of hormones being out of whack and it’s really taking a toll on my physical and emotional wellbeing 😔 especially since we’ve been trying for baby number 2. I’m just so exhausted.
Do you have chronic fatigue syndrome? I'm confused because you say chronic fatigue but not sure if that's caused by your other illnesses or if it is actually me cfs
Don’t call me out on holding in my emotions like that Aimee!😖😅😂
I know a lot of people online who got sick from emotional trauma and holding in emotions(which is exactly what I do to this day)😂.
I had issues when I was young too, I’ve always had stomach issues probably from digestive and bacterial problems we’ve found, I had seizures when I was young, and I had bad heart palpitations that we thought was an inherited heart condition but was my POTS. I thought it was normal to be on a treadmill and feel like you are gonna black out.
I went to a new physical therapist last week, and she is also trained in phycology. My fight/flight is on high I have so much fear at bedtime I actually go to my parents terrified as if I was 5 years old, it’s crazy. She’s trying to help on that. The problem is she wants me to visualize I’m safe and that just makes me panic more.😵💫
An interesting thing she talked about was my lymphatic system. She could tell my lymphatic system was all backed up with guck and did a massage to release it, and it obviously helped because that night I broke down in tears for no reason and had bumps on my skin showing my body was releasing something.
She told me that all of her patients who have EDS and POTS either have EDS from family or they have ADHD and EDS and I thought of you. Thought I’d share that interesting information.😊
Autism is common with EDS and POTS as well. Which makes sense because autism and ADHD are related.
@@Catlily5 I didn’t know that, interesting. Our brains,bodies, and emotions are so connected it’s crazy!
@@ruby3200 Definitely!