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Thank you for this. I have HSD and suspected HEDS awaiting diagnosis. I have chronic pain. I'm currently my neck and shoulder muscles are stiff and spasming, My hip is stiff and sore and I'm awaiting knee surgery for a torn ligament in a previously dislocated knee. I'm 37 and my mobility is affected. I got engaged last year and cant imagine being in a place to plan my wedding. I wonder is it a flare? Awaiting rheumatology in Ireland. Its like a vicious cycle I try to exercise for strength and hurt myself. I don't find it easy to open up about it I have ADHD and I'm not a great communicator. This makes me feel less alone.

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I have HSD diagnosis but likely HEDS. I really struggle with the mental side of things, I don't present "bad enough" to some people and I start to question myself but because of this I over exert myself and although my pain tolerance is relatively high I end up burning myself out, I become depressed and very angry towards others and all my energy completely disappears so I just stop taking care of myself. I'm constantly in this cycle of feeling the need to keep up, sometimes I think I do and can block out the pain which negatively impacts my mental health, thankfully I haven't experienced a dislocation but I have a few joints I can subluxate on queue without pain but my biggest struggle is the weakness and floppiness of my spine and legs, brushing my teeth, showering and doing dishes as well as cleaning absolutely kills me so I constantly take breaks unless I push myself through to burn out.

Girl, you are sooo beautiful ❤

Love and prayers you wayyy..❤

Thank you for sharing this. It kills me sometimes that there isn’t a better representation of what it is like to live with Adrenal Insufficiency out there. I appreciate you sharing your symptoms with the world. I’ve thought about doing it for a couple years now but haven’t been able to bring myself to do so. Much love to you from a fellow spoonie. 🫶🏼

❤ I'm so happy that you had these 2 positive experiences Jen, that is so good and inspiring 😍 Darkness and silence are lush 🥰 "Socially done" - best quote ever! Love the photo of you there and the outfit, x I really enjoyed the movie "Inside Out 2" at the cinema and I really loved the character for one of the new emotions "anxiety" and am so grateful that I didn't get anxious 🙏 Love you Jen 🩷

I’ve just found your videos regarding Addison’s. I finally have a doctor listening to me. Five years ago I had a CT scan revealing tumors on both adrenals. Nothing was done nor was I told it could be why I was feeling so sick. They all said it was my long ago diagnosed Hashimoto Thyroiditis. But finally a doctor heard me as I’ve been literally debilitated since February. I can’t get out of bed some days due to the heavy feeling in my limbs, brain fog, muscle and joint pain, hair loss, and so much more. I’m waiting on an appointment with an endocrinologist. My doctor said that she was going to ask for an appointment within the next week as she’s concerned about my wellbeing. Yet, I still fear I’ll hear it’s only my thyroid or it’s all in my head. I’ve been told that regarding my symptoms for nearly 30 years. Thank you for your content.

I think you are amazing! Doing what you did despite how difficult it was, continue making yourself proud.

Such a hard road you are on. I have secondary adrenal insufficiency due to a pituitary tumor. Tumor was diagnosed then a few months later i ended up in the emergency department where they discovered how low my cortisol was. I have never felt that bad in my life (age 70). Had the tumor removed in 2018 and just had a second surgery 2 weeks ago since tumor grew back. So have been on the adrenal insufficiency path over 5 years now. Sending all the positive energy i can you way from the west coast USA.

Thank you for bringing awareness to this important topic! I am in the process of trying to see if I have Addison’s. I have almost all of your symptoms and honestly feel like I’m dying. It’s been 2 months of begging doctors to take me seriously. I’m barely hanging on. I did have a cortisol test this morning but it was a 43 which is high! I’m so confused as all of my symptoms align with adrenal insufficiency. 🤷🏻‍♀️ I’m so thankful for you sharing your story, thank you!

God bless you Jenn...i woke up with a bit of golden glow to my skin with vililigo on my cheeks i also have Asperger's and am on the spectrum which can be a double edged sword im 42 and lije yourself i lived with this and my body found ways to cope and adjust but still leaves yo in bad shape despite relaxation in life...take care my fellow adesonian

Im trying to get a diagnosis wven though I have hyperpigmentation and every other illness associated with this sickness

I too get very (!) “fuzzy” logic/thinking during a crisis! I’ve learned I cannot trust my mind during an episode. Unfortunately I can sound quite convincing to relatives and friends saying I’m ok when I definitely not ok.

Do you have MCAS too? MCAS/EDS/POTS often go together per NORD. I have all three and weirdly have Secondary Adrenal Insufficiency as well. I’m finding more people who have all 4.

Me too. Bad one today.

My son and I have EDS,pots,ASD,and possible addisons,I ha ve dry mouth so much,spending a fortune on zylimelts,from Amazon,for it!

I can relate to many things you mentioned. I have been diagnosed since 12/1999 after many years of being unwell. The one thing you said at the end is key “take one day at a time” . It’s a lot to manage and sometimes one moment at a time is needed. ❤ Your videos are helping others ❤️

My 10 year old is currently in the hospital, had a crisis. I’m waiting on my bloodwork to come back. We have both been suffering for years with no answers. Logging is a great idea! It’s something I was doing before the diagnosis because we couldn’t figure out what was wrong with us. One thing the nurse said to us when explaining the med dosage was that emotional stress won’t affect it. That made no sense to me so I’m very glad you mentioned that in the video and I’ll have to ask more about that. Both my son and I deal with anxiety. God bless you on your journey, life is so extremely difficult in this broken world, I just cling to faith in Jesus and a much better life after this one ❤

Do a raw vegan diet

Go Carnivore so healing! Check out dr Berry and Dr Chaffe also dr baker

My daughter-in-law was finally diagnosed when she had an adrenal crisis. She almost died... She suffered for years with undiagnosed Addisons...her symptoms had been diagnosed as Migraine...her chronic illness affected her and my son's marriage which ended in divorce. B/c it got worse gradually he believed she was lazy, taking advantage of him b/c he ended up doing all the cooking, cleaning, shopping, etc while she ended up laying on the sofa all day watching TV, video, or sleeping/napping. She blamed him for the way she felt. I always knew something was wrong medically but she'd seen doctors and had been given a diagnosis and she was so tired, I'd assume, that she didn't have the energy to deal with anything. The sad thing is there were clues going way back to her 20's/30's/40's...she'd bee tested for TB multiple times and told they were false positives...that history is the thing that pointed the doctors caring for her in the hospital in the right direction b/c often the destruction to the adrenal glands is due to TB. She's gotten her life back tog and is doing much better now. It is sad though that the marriage was destroyed b/c of the illness going undetected for so long. She will always be my dil in spite of the marriage ending. I miss our history and good times tog as a family. I too have a chronic illness (vestibular migraine) and totally understand how difficult life is living with such.

Hi there how

My daughter-in-law was diagnosed not long ago with Addisons'...she suffered for a long time, having no idea what was wrong with her...she had an adrenal crisis that put her in the hospital and that's when the doctors finally figured out what was going on with her. I've read it can take decades to get a diagnosis b/c symptoms don't usually develop until 90% of the adrenal cortex has been damaged. She's doing much better now that she is on meds but it's still hard for her..she's in her mid-fifties...has suffered for a long time...people thought she was lazy, unmotivated etc...over the years she'd had a lot of positive tests for TB..was told they were false positives...when she was in hosp. with the crisis and told they were going to test her for TB she told them she'd been tested over the years but they were false positives...the doctor smiled b/c that's when he knew he was on the right track. She is learning as she's living with her disease. I understand how hard it is b/c I've had undiagnosed vestibular migraine for decades..I'm 74 and only found out 2 years ago what had been wrong with me since I was a young child. I'm no exception...I personally know 2 other people with VM and there are millions like us. All the best to you in your journey. Perhaps you can help others by sharing it here.

Hi Liz how are you doing today and how is my day today is my birthday

Hi there how are so

Hello and my wifee has addison too. I just figured out when it's hot... aka the summer... go to the urgent care and ask for saltine bag before the storm comes but pay attention to your body because it will give you alot of signs before dehydration comes...thanks for your story and stay strong

Do u happen to have Ehlers Danlos Syndrome???? Or dysautonomia???

thank you Jeninifer, beautifully put into the words I could not find. A fellow Addison. impossible to advocate for oneself in a crisis. I wish you love, peace and happiness always and will check in from time to time. big hugs

I'm so glad you shared this. Thank you so much! It sounds like such a harrowing experience. I'm glad you're okay. You're a brave one.

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Thank you for sharing this. I have complex heath problems in addition to Addison’s. It is overwhelming at times. Being ok with not-knowing, it is something I am trying to get comfortable with.

Love you❤❤. Let's zoom soon. I'm still getting knee replacement two under control. All is good g as it should. I'm sorry you had this experience.

I wish I could hug you, it's important that you're sharing this important information 🧡 x

I injured my shoulder and had that exact same headache, when I felt nausea with it I realized I needed to updose, probably because of the injury? It is so hard to know- you don’t want to overuse the steroids and you really don’t want to underuse them. I wish we had a sensor like diabetics do. ❤❤ I am glad you are recovering!

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Thank you for this, so much! You just made sense of something that I've been dealing with for 40 years. My doctor gave me almost no information, and none of my research has been as informative about the way this actually impacts us. ❤

Jennifer, did you have a brain MRI. I have secondary adrenal insuffiency called hypopituitarism.

I have the same case! Have a great week from across the way.

Thanks from a recently diagnosed Secondary Adrenal Insufficiency sufferer. 😊

Are you working now

Thank you for this video, Jen. I now have a better grasp of how you traverse the challenges that you encounter. Being so conscious of the more minute aspects of your daily life, as opposed to the way so many of us just let things happen without much thought, is something I'm absolutely not familiar with. I now understand much more. At this point in my own life, I am finding that I need to be much more aware of those minute aspects. Aging seems to mandate that. Thank you again. ❤

This gives me a greater idea of what you are going through. Dealing with chronic pain is hard to explain to someone who doesn't experience it every day. Bone deep pain IS a thing. Know you are always outJennifer, regardless of any mental or medical problems. You're so talented that I'm always in awe. ❤ Your 'family' across the ocean.

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I am 50 and have HEDS. I am in remission from severe migraine and POTS. I no longer have migraines often. I went into remission from them when I stopped my high stress job. I have also gone into remission with fasting and prayer. I consumed bone broth in the fast. I broke my spine at 16 from EDS so I understand what it is to be young and frail and young and strong. I guess my best advice is to push yourself within very adaptable boundaries. Pace well. I am currently struggling with ankle subluxations so cannot walk the distances I could a few months ago. So I try to get in a pool. I try my best to focus on what I can do. Ie I can drive bc I don’t have migraines. So I’m very grateful. I pray that you can find comfort in the love and support of others.

I dont know if this will help any one but these are the items that have helped me and my HEDS: Low dose Naltrexone, Edibles right before bed, drinking tons of water with salt pills, compression socks (they make cute ones now), heat pads, having a stool I can take into the shower, and most importantly pacing pacing pacing!!!!

I have HEDS too. For me it starts with the fatigue. Often I think I just need coffee or that I need to eat a bit better. I usually keep going which leads to me pushing mast my limits. This leads me to getting even more tired to the point that I crash. At that point I cannot think straight, I cant do simple things like write an email coherently or make a shopping list. It feels like doing small tasks like washing the dishes takes too much effort. My whole body feels like its on fire. Wearing tight clothing or bras feels painful. My throat hurts and I usually get worse IBS.

Love and hugs from across the pond. Give yourself a bit of grace.

Thank you so much for this video. I have been dealing with Addison’s for a couple of years now and am going through the exact same things you discussed at the end of your video. Self esteem is in the toilet. My face is puffy. I’m just exhausted and I feel stupid to worry about that when the steroids are what keeps us alive yet I still feel all of those feelings that you discussed.