Here is Shelby's GoFundMe! It explains in further detail everything we're talking about: gofund.me/32fcfe3b

@janina8559

2 жыл бұрын

Have they checked her for Lyme Disease?

@Shockwaveo

2 жыл бұрын

juice fasting can cure many things

@BabyGirlRaven

2 жыл бұрын

@@janina8559 Yes if you were listening closely you would’ve heard him talk about when she was tested for Lyme disease

@janina8559

2 жыл бұрын

Made the comment before I watched to the end.

@redinabloogs8477

2 жыл бұрын

@@Shockwaveo i know u mean well BUt this kind of comment is a slap in the face to chronically ill people...u wouldn't tell some who just lost a leg to juice fast in hopes it will grow back...its insulting...please stop saying this to people. thank you.

My BF had autoimmune encephalitis. Sounds very similar. IVIG and long term prednisone cured him. It took him 2 years to get diagnosed. He got diagnosed in Houston at Memorial Hermann in the med center. He is better but it took another 2 years to get back to normal. There is hope once they figure out what’s wrong. BTW, he tested positive for the Lgi1 antibody. Very rare condition. 🙏🏻🙏🏻🙏🏻

@lunarmoth8361

2 жыл бұрын

Genuine question, honestly. How can he be on long term Prednisone without getting bone disease? My husband has Crohns disease and Prednisone helps the symptoms alot but the Dr wont leave him on them long term because of the affects it has on your bones. I would love for him to have something constantly to help. TY

@lolitaalmostgrown

2 жыл бұрын

@@lunarmoth8361 my ex has Crohn’s and he had to take a large amount of extra calcium and he also had a sublingual D spray so his Vit D wouldn’t get low. Then we had him on about a 3k or so calorie diet every day, sometimes closer to 5k, because his absorption was so bad. But he became healthy on Remicade. Remicade is a lifelong commitment, or at least until you have been in remission

@lolitaalmostgrown

2 жыл бұрын

I had a blood IG test today, there’s an IgG, IgA, and an IgM. It was back within 2 hours normal. I’m waiting on an SPEP now.

@dsmyth9940

2 жыл бұрын

@@lunarmoth8361 anyone on LT steroids you have yo take folic acid and get yearly dexa scans

@destineybaines8758

2 жыл бұрын

@@lunarmoth8361 was going i wwto

Hi Shelby. I’ve had chronic mysterious symptoms for almost 30 years. I’ve done plenty of “crazy” things to manage my symptoms. I confessed some of my methods to one of my doctors, expecting her to be annoyed. She said, “sometimes you just have to do what gets you through the day”. It made me feel a lot better.

Thank you for this! I'm dealing with late stage, inoperable lung, lymph and adrenal cancer. My quality of life has diminished to the point of everything's a struggle...including getting dressed. I've been sick my entire life. Was born with a rare lymphatic birth defect; had my 1st surgery at 6 months of age. Life has not been easy. I knew I was getting worse because of how I felt and doing simple tasks became difficult. The doctors didn't believe me. The frustration of dealing with the medical community is real. The chronic pain and inability to do simple things is frustrating to say the least. I'm babbling...just wanted to say thank you for this. It made me feel not so alone in my struggles. I relate to you both so much. Chronic illness is a hard road to walk.

@natalielawrence8809

Жыл бұрын

All my love to you. You are simply amazing. It couldn't have been easy to even write the beautiful comment you wrote- what a beautiful heart you have. Sending you ALL my love 💘

@BrokenInTheBox

Жыл бұрын

@@natalielawrence8809 thank you, Natalie. I'm still hanging in there. I hope you are well. Thank you for the beautiful comment. I love you too.

@natalielawrence8809

Жыл бұрын

@@BrokenInTheBox - That's so great that you are hanging in there. I can't even imagine how much harder things would be for you- in the midst of a global pandemic.. and all that brings. I hope to see you again in the good old comment's section. I 💘 You 👑

@aquariusrizing

Жыл бұрын

@@BrokenInTheBox I was just holding you in the light, and here you are. ✨️ Blessings.

@emilyeah

Жыл бұрын

Sending so much love healing light 🌬✨️⭕️🔥🙏🏼🎶🌳

This stressed me out so bad! Doctors saying everything is depression and anxiety. My gosh! Let’s get to work!! Prayer to you sweet girl!

@karenhernke281

Жыл бұрын

It's the truth. No doctors will ever believe that Lymes disease is real. That is why it's not covered under insurance. I also have Lymes disease for 28 years 20 years misdiagnosed sadly.

I work at Mayo Clinic in Minnesota and believe they would be willing to help you, we watch videos like this all of the time and we have panels of doctors and MD'S who find out the causes. I wish you the best of luck, my friend.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this!

This sounds like my story with my 33 years long journey with Lyme disease. I went mis diagnosed for 13 years damaging my bladder, bowel, kidneys, adrenals, spine, brain and heart. Your neuro symptoms are identical to mine. Brain shocks, Burning, Dizziness, headaches... At age 26 I had a spinal cord stimulator implanted for the organ damage pain and it went wrong. Just like you, I needed blood patches. They then proceeded to inject my Lyme positive blood into my epidural space. 3 years later I woke up with excruciating back pain. Due to the stimulator they couldnt do an mri so I went in for a CT Myelogram. The first time student went through my cord several times. I felt as if I was struck by lightening. Two days later I was paralyzed from the waist down and spent two months in the hospital. Turned out that the blood patch from several years prior caused a horrific disease called Adhesive Arachnoiditis. I spent the next 8 years completely bed ridden and fighting for my life physically and mentally. The levels of pain made me not want to wake up. I myself looked into assisted suicide. Ketamine infusions helped me regain some life back. I then went off of traditional meds and started LDN and MMJ. I fought hard with alternative treatments and some how I am living a semi normal life again. I cant express how much I relate to your heartbreaking story. Hang in there. Sending so much love and strength to you

@TheKatarinaGiselle

2 жыл бұрын

I have chronic Lyme's (not diagnosed officially, but I've had it since I was 7 and I've pretty much been positive about it since 8 was 19, although when it happened I just knew right away and my mom wgonwas a nurse at the time didn't really do anything about it because things were so different back then) I knew for CERTAIN that I had it once I got Morgellons around 5yrs ago (I had that about 90% cleared for most of the time now which is amazing) I have pods and hashimotos and several other things, but I believe everything stems from the Lyme. I wish I could find good doctors near me to help because I truly suck at getting myaelf better with no income and being a lower class (basically homeless) and right now I don't even have a primary care physician. Many doctor's have caused me trauma over the last 7yrs seeking help so I kinda stopped seeking it the last 3.

@AGirlandaGermanShepherd

Жыл бұрын

I have chronic Lyme Disease. Took a year to diagnosed. Had severe Bells Palsy, Meniere's Disease, Anxiety ++

@reverie2000

Жыл бұрын

@@TheKatarinaGiselle I am so sorry that you too had to suffer so many years with unidentified diagnosis. I also have pots and SVT from the lyme. MCAS as well.

@reverie2000

Жыл бұрын

@@TheKatarinaGiselle for a while Iived in a trailer struggled to make ends meet while paying insane amounts of money to doctors for treatment. My heart goes out to you. It can get better I promise ❤️

@reverie2000

Жыл бұрын

@@AGirlandaGermanShepherd So sorry to hear that. i had bells Palsy in the right side of my face. Luckily with treatment, its got mostly better. The right side still sits a little lower and my lips dont line up which my husband thinks is cute and unique so thats good lol. Have you veen able to find a good help?

My name is Cynthia. Your symptoms are identical to mine. I was in a car accident in 1994. 10 days after my symptoms began brain fog, electrical shocks in my brain (I call them the jolts), migraine headaches, heart racing and extreme body pain. After 2 years of getting no answers, I was helped tremendously by the neurology unit at Yale New Haven Hospital in CT. I found out I had an injury to my brain stem. I’ve been on meds ever since. They truly control my pain. Call them Shelby. I truly wish you well.

@janetatum8966

2 жыл бұрын

That accident could have caused Craniocervical Instability (CCI) and/or Atlanto-Axial Instability (AAI). It sounds like ME/CFS caused by a traumatic injury...which is one method of onset. Check out Jeff Wood of MEchanical Basis's story. And Jennifer Brea. Neurosurgery to fix their cranial settling and laxity gave them their lives back. Just mentioning b/c numbing/coping with meds may not be the total solution long-term. Dr. Paolo Bolognese is super familiar/an expert at CCI and AAI...both from hEDS/EDS/connective tissue laxity, and traumatic accident causes.

@cynthiakirschner4363

2 жыл бұрын

@Pops I take Methadone, which is a Class 2 narcotic. Despite public stigma, methadone is primarily used for pain control more than drug addiction alternative. It gave me back my life!

@cynthiakirschner4363

2 жыл бұрын

@Pops the neuro team tried many different drugs. Even morphine didn’t help. But when they put me on methadone, it was like I was me again! Methadone is a neural transmitter interrupter, so it stopped the endless pain response from firing in my brain. I still feel normal pain, if I cut myself etc., but the constant burning, stabbing pain is gone as long as I take my meds.

@cynthiakirschner4363

2 жыл бұрын

FYI, I am monitored by a pain specialist monthly.

@MichiaMakes

2 жыл бұрын

@@cynthiakirschner4363 thank you for sharing! I’ve been treated for my pain for nearly 15 years. They tried everything including epidurals, 35 injections in the head every 3 months, 12 spinal injections a month, oxycodone, etc. The team at UC as brought up methadone as an alternative and I’ve been considering the option. Thank you for sharing your experience.

I'm in tears. I have all the same issues. Diagnosed with pots, was bedridden, the brain fog, the dream like feeling, the pain, the brain lesions. Mine started in the summer of 2009. I've got to a point where I am stable and not getting any worse. It's not fun. I'm a shell of who I once was. My short term memory is shot, I get frustrated that I can't think properly or find words. Feel free to reach out to me. I don't have answers but I'm here if you want to talk to a fellow mystery illness suffer.

@MichiaMakes

2 жыл бұрын

Same. Same. I’ve lived with my issues for decades. I’ve spent months of my life in ICU, Cardiac ICU, in and out of differing levels of paralysis, years in physical therapy, over a decade with pain management team, etc. Most recently, I’ve been diagnosed with restrictive lung disease. There’s no treatment. There’s no cure. It’s caused by whatever this neuromuscular disease is that so many of us seem to have acquired, but still no doctor can diagnose. I wish you all the best and mostly, I wish you a better outcome than mine. I have 2-5 years left.

@gabrielleg.1347

2 жыл бұрын

Have you tried getting tested for Lyme disease and tick born co-infections from Igenix labs? Its the only lab that actually has accurate lyme disease tests. The ones traditonal doctors will give you show false negatives 60% of the time. I had all the same symptoms of you and fundraised for the money to do the tests and sure enough they came back positive for Lyme disease and bartonella and a couple of other tick born illnesses. I also found out I have mold illness (did a urine test through Great Plains lab) as well as parasites (Through Parawellness). Now that I am treating all of these things I am slowly getting better. Getting an ozone machine from Simiply03 and doing rectal insuffulations three times a week has also really helped. Have you seen a lyme literate naturopath? Traditional doctors can't help people like us.

@Kerry-ft2zf

2 жыл бұрын

I live with Morgellons disease so I understand

@amberlucille8445

2 жыл бұрын

@@MichiaMakesI'm so sorry 🥺 I wish I could hug you.

I have connective tissue disease which is lupus and other stuff combined. Took 10 yrs to get diagnosed. They always think we're crazy. It sucks

@emilychristie8660

2 жыл бұрын

♥️♥️🌹

@alksud197

2 жыл бұрын

I have an esophageal disorder that was undiagnosed for about 17. My heart goes out to you ❤️

@websurfer5772

2 жыл бұрын

I hate how we're all treated. It's ME/CFS and Fibro for me. People like Stephi and her friend Shelby are just Golden in my book.

@stardust8563

2 жыл бұрын

Sjogrens and connective tissue and rheumatoid for me just recently diagnosed

@kathymyers7279

2 жыл бұрын

Sam. To me a diagnosis would be like a cure on the happiness chart.

Stephi, you're such a good friend and person in general. Anyone would be lucky to have you in their lives.

@lorij9649

2 жыл бұрын

Yes! I second that!

@nicolesam2863

2 жыл бұрын

Agreed!

@websurfer5772

2 жыл бұрын

Yes, I'm so grateful that Stephi makes videos for us all and is real with us.

@james3440

2 жыл бұрын

How do you know? You only know what she shows you.

@websurfer5772

2 жыл бұрын

@@james3440 I don't need her to show anything more.

Stephi, if alcohol helps with movement and dampening of the symptoms it is absolutely a condition causing the central nervous system probably along with a co-morbidity causing inflammation. My first thought was Lyme disease absolutely but has she been checked for rheumatoid arthritis? That together with a post viral central nervous infection can cause long term side affects. The disassociation, the burning pain etc. there are meds out there that will help and not kill off your liver like alcohol does. High does of prescription painkillers may well have to be a reality otherwise she will end up in heroin when alcohol doesn’t do the job anymore. There are drugs like Valium or Xanax that will help with the symptoms, also antidepressants and antipsychotics- they aren’t just used for mental illness, they are used to treat pain in patients too. Try to encourage her to try some meds, even if she only cuts back on the drinking while trying them. I’m dealing with a similar situation myself and have been anti medication for a long time but It gets to a point that you have to either give in and try some stuff or suffer more. I hope she gets the help she needs and deserves. Peace and love ❤️

I have invisible chronic illnesses myself. So starting there I most definitely have the upmost empathy and sorrow and love for this woman. I KNOW what we go thru. One thing that caught my attention was when she said she'd been prescribed over 30 different meds but NEVER took any of them. I too have done that along my journey to figure out what's going on with me- BUT if we are seeking relief and a diagnosis the ONLY thing doctors can do when their backs are to the wall is TRY different meds to see if they help. I believe that more often than not the docs are trying to help and have good intentions. But we as sick people have to give things the old college try and find out thru trial and error if the doctors are on the right track in helping us. No judgement from me tho- please don't take it as such. I just know it can get very tiring for us to keep searching for help and not getting any but sometimes it's made worse by us not trying every avenue we can. All the love in the world Godspeed. 🧡🧡💛💛💛

Whoa. Shelby, I’m so sorry, and it’s eerie how similar our stories are. I’ve been an avid traveler, got sick overnight after returning from China, wheelchair bound, surviving on a feeding tube, botched spinal taps, no one believing me and spending years being told I was just seeking attention. Eventually, I was also diagnosed with POTS, and later EDS. The EDS did help explain some things, but I still think there are some unanswered questions. These things aren’t officially diagnosed, but we suspect I may have had Guillain-Barre when it hit overnight, and I also think I may have MCAS. I wish I had more answers for you, but if you want to connect, I’m here. It’s so hard for people to understand the struggle of not having answers, living in a body that you don’t know how to help, and then the medical system treating you terribly. You are an amazing woman. I’m living in a van now, and healthiest I’ve been in the past ten years, but I still deal with symptoms everyday. Sending all the love and good-as-possible vibes your way. 💚

just a thought to consider but I saw through social media years ago someone in Canada go through random intense illness and it ended up being mold related that she got from smoking moldy weed. It’s a shame what she’s going through, thank you for spotlighting this for her.

@emmiejean1

2 жыл бұрын

Lyme and mold go hand in hand.

@alys4570

2 жыл бұрын

A friend of mine was exposed to mold in hay of a barn she was working in. She has dealt with similar issues for years now. Long term prednisone helped some

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

I know too well what Shelby is saying and feeling. The worse part of chronic illness is people not understanding or listening. Over the past 3 years I have become chronically ill and bed ridden. Doctors won't give me anything for pain, which I am in daily at such a high level, yet pump me with crap that's not helping. I have lost all my friends and family never checks on me. People simply don't want to deal with you if you are sick. Hope Shelby gets the answers she seeks and gets well.

@KittyKerushi

2 жыл бұрын

Sending lots of love 💖💖 and I'm sure in time u will find the answers and help u need, don't let go of that dream, that need, keep thinking of it and try to have faith as best as u can. Everyone deserves answers and help if they seek it🌿

@vileling4945

2 жыл бұрын

Right there with you. It's very scary trying to navigate this screwed up medical field. I'm at the point where I'm too sick to be able to work and afford insurance, so I can't even see docs. Hoping things improve for us all 💜

@mygirldarby

2 жыл бұрын

I'm so furious at the way the government has harassed doctors and prevent them from treating their patient's pain. The DEA now receives notification any time a doctor prescribes strong pain medicine. This is crazy Do we really want the DEA to be in control of what we get for pain relief? It needs to stop. So many people are suffering. My mom had cancer and when she got a mastectomy they sent her home the same day of surgery with 8 pain pills. They refused to give her more. She was in so much agony and I was helpless and furious that they did that to her. Someone has to change these insane regulations. When a cancer patient cries in pain for days and is refused any pain relief, we have to change this. It's wrong.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

@precisiont5188

2 жыл бұрын

This is so true, people don't understand how bad it really is.

She is right, keep fighting. It took me many years to find out what was making me sick. I am broken hearted for you because I know what you are going through.

My 25 year old daughter has a mystery illness also, sometimes referred to as post viral complications. Some similar symptoms, POTS, rapid heart rate, extremely tired, dizziness upon standing, pain, feels like she can feel blood flowing through her legs, etc. She also has CRPS since age 15. We hear the depression and anxiety reference frequently too. Of course there's some depression and anxiety when your life is completely altered and you can't do the things you planned and want to do. Thanks for sharing your story. Will continue to follow your journey on your channel. Much love to you.

@shaycarter2602

2 жыл бұрын

What is CRPS?

@emmiejean1

2 жыл бұрын

I have late stage Lyme and CRPS. Chronic regional pain syndrome.

@marynieves7111

2 жыл бұрын

I was very sick also out of the blue. Back in 2009. My daughter was 11 months & I just wasn’t right. It took me two years many hospitals in different states, the Mayo Clinic in minn for a month a nursing home on a TPN feeding tube. They finally diagnosed whipple disease a malnutrition disease. Had too many symptoms to list. Very sick very skinny & very off feeling. After going through hell of 2 yrs of throwing up, wheelchair light hurt my eyes etc but then from the whipple disease I developed RSD CRPS in 2011. Been in wheelchair & mostly bed bound 13 yrs now. I wish you luck from one chronically ill person to another. But CRPS is a horrendous disease I’ve been dealing with for 11 yrs now. 🙏🏼💜

@karenburns9952

2 жыл бұрын

FollowYourDreams this sounds like symptoms from the vaccines.

@MzClementine

2 жыл бұрын

@FollowYourDreams please look into getting her oxalates her calcium oxalates tested. Please please look into Elliot Overton's channel EONutriton I actually like the specific bacteria to break down oxalate. I can't tell you the crazy issues I've had. Bad viral complications terrible immune system. I react anytime I'm ever injected. I stay far away from those. But please please please look into his work and yeah he's right. I'm 45. I have to eat a carnivore diet. / Keto extremely clean. No oxalates. My liver actually produces too many of them. It's crazy and I can't break them down.

Shelby, my heart is just breaking for you. Sending so many healing vibes and prayers your way. This just sounds terrifying! I pray someone can find out a correct diagnosis and cure for you. So much love!! ❤🧡💛💚💙💜

I am in the exact same boat as this woman with having a mystery illness. I too am chronically ill and have had no answers except for “extremely severe IBS” (along with other health issues tying into it that get worse literally every two years) which is also just a symptom of something much bigger. I have been searching for answers for now more than 14 years and am constantly bed-bound whenever I have a flare-up which happens at least once a week now and last anyways from a couple of days to a couple of months. Now with everything that my Husband and I have had gone through since the middle of last December it is next to impossible to get into see Specialists and get numerous tests done as we live in a small town and all these Specialists are one to two hours away (in one direction) and with the medical insurance we have we still have to pay large amounts out of pocket. I have already had too many tests done to even count since this all started back in January 2002 and I am no closer to finding out what is wrong today than back then. As it stands now I have to be tested for a laundry list of things including but not limited to Gastroparesis, yet another endoscopy to check my duodenum, and a whole slew of other things. My point to this comment is that I know exactly what she’s going through because I’ve been going through it for almost a decade and a half. I am constantly sick and am sick to death of not having any answers. But at least she now stands a greater chance of getting the proper help and answers when she has the friends that she does and I am very happy for here and am very proud of Stephi for trying to help her through her channel. I too have said multiple times that it would probably be better if I had cancer. What I have is literally very slowly and very agonizingly killing me anyway. I cannot STAND not physically being able to have a job and work and contribute financially but with the way my health has rapidly declined I can’t. That is the most devastating part of it all. I LOVE working and for the past 4 & 1/2 years I have been unable to. That and Doctors not taking you seriously and thinking that it’s just anxiety and “it’s all in your head” and “you are doing nothing but drug seeking” and all the things that she is talking about. It is also impossible for me to be on most medications as I experience the slightest side effect from them. Even over the counter medications. So I CANNOT take 98% of what I am to be prescribed and am on the minimal amount as of right now. I am tired of continuing to fight. More than 14 with a mystery illness is far too long.

That's fu*king awful! No one has empathy for invisible illness. Hope your friend feels better soon!

@mazieswift1683

2 жыл бұрын

Amen

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

Ugh, I’m in a similar boat. Even though I’m now debilitated with pain most days, no one believes me because I have a history of anxiety. And once an issue becomes “chronic” it is no longer seen as an “emergency”, and therefore becomes even harder to get help. Regardless of the fact that I still don’t have answers or any sign of hope. I have fought for 3 years just to get tests that I’m still waiting for. And in relation to Stephi, I was also travelling and living out of my SUV as things progressed, so because I took advantage of my good days in that time, people don’t really believe I have bad days. Now that it’s becoming disabling, nobody will take me seriously. I don’t know what else to do now other than just try to build a community of people who can relate so that I feel less alone in this. You’re in my thoughts, Shelby. Stay strong

Donated and hope Shelby finds a Dr who can make sense of it. I'm in the UK and my friend has a form of autoimmune and chronic pain but it also causes seizures (non epileptic) We have a national health service but they couldn't find answers. She's now with private health care and only after that switch did they bring up the potential Lyhme disease. She has to be very careful with day to day living as she could have a seizure at any moment. It's really scary but thank you for no longer being a silent voice. People with undiagnosed illnesses still have illnesses and I'm sure you sharing will bring forward other voices. Much love and light

I know this won’t be of help, but I am so so sorry you’re going through all of this Shelby. I have fibromyalgia and doctors are currently searching for an answer to something going on in my body. They know it’s an autoimmune disease but just don’t know which one, and it is so frustrating, upsetting and at times, terrifying. I know I feel everyday “what if something awful happens because they don’t know what this is”. But I must say, chronic pain communities are some of the most wonderful, strong and supportive I have known. Any question is never too small and you will always find support and love, just as you did with Stephi ☺️ I do so hope you find an answer soon chick, so you can feel like you again and get back on track. One piece of advice that I tell myself (and my Mum, who I care for and also suffers from multiple chronic disorders), we’ve got to keep on keepin’ on. I know it’s silly but sometimes in the darkest times, it can help us 😍 take care, and please let us know how things are going! 🌻 Ps Stephi, I just adore you, you’re heart and soul are so pure for wanting to help your friend. Take care ❤️

Your friend is a blessing to listen to. I really enjoyed the fact you're outside. Considering she spent years without friends it was painting a very grim picture in my head. Her out in the grass gave a feeling of accomplishment. Like everythig is ok. Thank you for this video.

Hearing your story, knowing the struggle with disability especially when people can’t “see” it. My heart goes out to you. I miss so much of my “healthy” life - independence, adventure and just knowing that every morning I woke up I could get up and get dressed or get to the toilet without excruciating pain. Health really is a privilege. On a lighter note has anyone noticed how Olly stays close by to her, sensing her pain and anxiety. Dogs are so incredible.

Shelby I’m so sorry you have to go through this. I feel this 110% I’ve been suffering for years and my next step is getting testing for MS as it runs in my family it’s so hard :( thinking of you beautiful. ❤️🙏🏻

thanks for sharing your story Shelby, and Stephi for helping Shelby with such a beautiful friendship and the safe space to be vulnerable like this. i hope somebody can help. i have a friend with a tough circumstance of a mysterious sickness that appeared so suddenly. i am mentally ill with bipolar 2 and panic disorder and my panic attacks started overnight. i felt my body go through a portal, i felt this shift happen in my body and mind and then i had panic attacks daily for 6 months before finding the right medication. my life has been so profoundly affected by these things and i have all these side effects of organ damage from my meds. it is hard. not as hard as your stuff, Shelby, but anyways all my life, i am praying for you

March 23 , WAS WHEN MY WHOLE LIFE CHANGED TOO!! 2013 , I’ll never forget it! I have ALOT off the same symptoms AND issues when trying to get care! They always think your seeking drugs when all you want to feel normal!! THEY TELL ME THE SAME THINGS.. you just have depression! I’m NOT depressed but being sick and you not listening to me IS depressing! I DEFINITELY HAD THE DISCONNECT AND THE FEELING EVERYTHING I LOOKED AT WAS FAKE. Brain fog, dizziness, BODY PAIN ,panic attacks, weight loss…etc! I FINALLY FOUND OUT I HAD EBV which is a form of mono. I started reading a lot on what THE MEDICAL MEDIUM talked about and a lot of our diseases come from streptococcus! If anything check out his books! ❤❤❤❤

@niveskolec994

2 жыл бұрын

hope you're feeling better now! The 1st thing that popped into my mind was "The Medical Medium" and Epstein-Barrs Virus and the wide variety of symptoms that come with it...

@livealifefulfilled

2 жыл бұрын

Wow this should be bumped up to the top! Maybe she can dig deep into this!

@sarahnicole181

2 жыл бұрын

I had strep as a kid a lot. Then I got EBV as a young adult. I'm still sick a lot. What can you do about it?

@floridachickstinyadventures

2 жыл бұрын

@@niveskolec994 yea it’s been a struggle for years. I’ve just stopped trying to be normal again and accept this is my new life… I spend a lot of time doing my own thing and staying away from the things that get my nerves all rawled up.

@floridachickstinyadventures

2 жыл бұрын

@@sarahnicole181 yea I’ve seem to be sick all the time too if I over do it. Definitely don’t want to get my nerves in a stressed out situation then I’m definitely gonna be sick for the next couple days. I’ve tried everything and gone to every doctor and they all say I’m just fine. I got tired of hearing that when I felt the complete opposite. I live my life a lot slower then before . I’ve changed my whole life style. There is one thing that I’m not sure if this helped or not but I’m gonna keep doing it. It’s called oscillococcinum and it’s a homeopathic medicine that supposed to help with flu like symptoms which is what I feel like I have a lot of the times when I’m really rundown so I figured I’d give it a shot. I read on somebody’s review that they take a third of it every single day and they haven’t been sick for several years, that’s what I’m doing now and I’ve been for the most part 80% good. If I feel like I’m going to be extra sick I’ll take the recommended dosage. Great thing is it taste just like candy and you can chew it. You can buy it right off of Amazon

STEPHI is a great friend

This resonated with me so much, including the issues with people's perceptions of those with tattoos and piercings that live in chronic pain. I have had some issues since I was very little. It started escalating when I was 10 and in a car accident. It's like that hit to my back triggered something. I've dealt with people not believing me, even being treated like crap by doctors from 10 years old on. I stopped taking rx's or going to the doctor for 15 years because no one could help me. The ones that believed me had very few answers. After 15 years of steadily getting worse, I found myself crawling up the stairs one day just so I could feed my cats and by the end of the night I was in the emergency room screaming in pain. After that, I started going to doctors again. I've had some good ones, some condescending, and some that just made things worse (especially after another car wreck and the therapy that followed). My life was drastically changed when I had a bad reaction to new meds that basically made me schizophrenic. That almost ended me. I've done tons of research for years, but many of the tests are too expensive, doctors won't do them, and they say they'd treat me with the same meds even if I had this or that. One big problem is that I have many/all the symptoms for several different things, but the tests come up negative. One of my doctors said that he still thought that I had something that I tested negative for, because sometimes you can have it, but test negative. My thyroid doctor knows how weird I am, with conflicting test results that should be impossible. I got covid right before the initial lockdown and was sick for a month. Then a couple of months later I ended up with long-covid symptoms attacking me. Some things had just started to subside after almost 2 years and I got covid again. I am now dealing with more extreme symptoms again. Today, I got groceries delivered and had to power through bringing them all in and putting them away. I felt like I was dying by the end and had to collapse on the couch because I felt my feet and legs about to give, and was about to fall. I've been diagnosed with everything under the sun. Doctors haven't done as extensive testing as Shelby has had as far as spinal taps and things like that. They probably should have. I never wanted to be on 16 rx's again like I was when I was 14, but here I am, 32 years later with a drawer and cabinet full of pills that barely keep me functioning. I relate so much to Shelby, Stephi, and those whose comments I've read. After I collapsed today, I questioned myself about my future plans and if I could even pull them off, saying to myself that I am definitely going to need all the help I can get. I finally got through college after 7 years and am working on starting an animal sanctuary with my niece. Animals have always been my biggest comfort and are literally the reason I am still here today. I did rescue work for 6 years, then had to almost completely stop because of the constant pain, brain fog, lethargy, etc. I'm making plans to go out of town/state just to get tested for small fiber polyneuropathy because I have had no luck getting the test done anywhere near where I live. Maybe I will get some answers there and more effective treatment. Water helps me more than anything, just like Shelby. It always has. Unfortunately, I haven't been able to go swimming for some time and even taking a shower is a task. I tried the tub after 2 years and barely got out. People who are healthy take so much for granted. My heart goes out to all of those with chronic, invisible illnesses. We just have to try and live the best we can. 💜

I have a chronic illness too & can definitely relate to a lot of what you talked about. Unfortunately I'm only 22 but became sick at 21 & have "wasted" almost 2 years of my life being sick. Luckily however I've been very blessed to be finally starting to slowly feel more normal again & become more functional. I remember having to stop in the middle of my workouts that I used to easily, painlessly get thru, due to horrible stabbing pains & have to sit on the floor in pain & take a break. Then start crying hating my life asking why am I 22 & can't even fucking work out without this pain stopping me from getting anything done. Seen countless Drs, lived in & out of Drs offices & hospitals. I 100% relate to the feeling of longing to just be normal & do normal people things like be able to work a job again, go to the store, go out to eat, work out, socialize, etc... It's truly heartbreaking. Ik it's hard but keep your head up a cure will more than likely come or if you're like me you might start to eventually begin feeling better to the point it's more manageable or better yet some day goes away. Love y'all & praying for you babe! ❤️

My heartfelt prayers for your friend Stephi, that all the answers she needs to help her. I can understand, back in 2001 I woke up to numbness on my right side, thought I slept wrong, it progressed strangely in 3 days, nope I didn't sleep wrong, gone through series of labs, tests, MRIs, EEGs, EKGs, spinal taps, the doctors then couldn't find anything, my whole right side was completely numb and wasn't able to have any range of motion, it was liken my right side was dead. The doctors still couldn't find anything, but sent me to a Neurologist the specialized in MS because they still couldn't find anything, I too thought it could have been Lyme disease, couldn't work, needed help and help with answers, etc. Then suddenly, the MS specialist (gone thru 5 of them in 4, almost 5 yrs, due to both insurance changes, had to change doctors, etc) said it looks like RRMS (Relapsing Remitting Multiple Scelorosis, sorry if missed spelled) anyway, they put me on meds for it, the MS specialist says there was 2 spots on my brain "they found", I was always too an on the go active person, the meds they gave me made it worse, honestly, the one they changed me to from the other did worse, almost killed me, I quit taking that one immediately without doctors orders, that last MS Specialist said I need to continue because those spot on my brain progressed worse that eventually I'd be brain dead, I told him no I won't, since I stopped the meds, I was finally actually getting better than before, and eventually found another doctor a few years after I moved to TX to live and get to know my dad in 2007, around 2008-2009, this doctor I'd seen is a cardiologist and specialist, he seen my past medical records, including Al my past MRIs, etc he said due to the job I had at the time at one of the factories that dealt with chemicals that had a warning label that it can cause through time even if always using safety equipment can cause problems with the CNS (Central Nervous System) and even cardiac problems, and even artificial sweeteners in diet beverages and food, like aspartame, also through time can cause MS, heart attacks, strokes, high or low heart palputations, kidney failure, CNS issues, migraines, and more. So he did further testing, etc, new ones that is, he says it shows that I may have had a mini stroke to the right side due to the scaring to my brain in those few small places, he said they were not as bad as that last MS Specialist said it was, and these MS specialist were not right to begin with in they're diagnoses. Not to worry anymore, he said either the chemicals an or the aspartame in the diet beverages and food I would have consumed through time caused this, so I had changed my diet to healthy fresh foods and beverages and lots of drinking fresh water too. Since, I haven't had any relapses or problems. Maybe, it could have been something of sort similar you could consumed then when it happened, even certain seemingly healthy beverages and foods can cause something viral or bacterial into the body in various area, etc. FDA seems to always approve something that is actually not good for human consumption and vice versa. I've only been doing some research since this all began and maybe this can be of some help in some way for you in the midst of what you're going through. No promises, but big time heartfelt prayers for your your friend Stephi, I do hope for her and anyone going through this, that the solutions and answers will come soon. Sending lots of love hugs and prayers daily to you and all who are going through any major illnesses, known and unknown. 😔🙏🤗💖🤗💖

Shelby I worked as a NeuroSurgery Nurse and as I am sure you know there are unfortunately health conditions that are very rare or even unknown. I am really sorry for you not be believed or listened to. I have heard patients say how frustrating and scary it is that there are no answers to what is happening to them. And it seems some Doctors tend to blame and/or dismiss people because they don’t have answers. Stephi I am so glad you encouraged Shelby to tell her story. I pray that this helps find answers. Shelby you are incredibly brave as is anyone dealing with a significant chronic illness. I have chronic pain and people who have never experienced it have no clue of the depths you will go through to o feel better

Hi Stephi! Thank your for sharing your sweet friend’s story. I have so many of her same symptoms. I’ve been suffering since May of 2013. Mine also came on all of a sudden. I’ve seen at least 100 doctors and specialists all over the country. I’ve been dx’d with MS, Lupus, EDS, CFS, IBS, Fibro, etc., the list never ends, and there are never any worthwhile treatments. Doctors are just theorists and it’s infuriating. I just had spinal surgery for degenerative disc disease and spinal stenosis which I believe causes my skin burning that Shelby also spoke of. The surgery won’t help my symptoms, it’s just to slow down the degeneration. I’m always in pain, and now doctors won’t prescribe pain meds, and treat us like addicts. It feels very hopeless. I even moved to Colorado to take advantage of canna, thinking it would cure me. Well, I happen to be one of the unlucky few that canna has no effect on. It’s so hard having an invisible illness, and the next time a doctor tells me I’m too “young” or “vibrant looking” to be sick, I’m going to lose it. I too compare this mystery illness to cancer. Not that I would want cancer obviously, but I DO want the empathy and understanding that people give to those who suffer from illnesses like that. It’s soul crushing to not be taken seriously just because their skewed lab numbers often fall within what’s considered “normal,” which is ridiculous because everyone is an individual, and one may be on the very low end of normal, and therefore, overlooked. Doctors’ unwillingness to dive deeper is the most frustrating. Doesn’t seem their oaths mean much these days. I so wish I had an answer for Shelby. I can only offer solidarity. Please make other videos on her progress, not only because I truly hope she finds some answers, but her journey may help the masses of us who are tormented by unexplainable sickness. Most mornings when I wake up (when I’m lucky enough to fall asleep), my first thought is “I don’t want to be here anymore.” 💔

@LG-gj9mz

2 жыл бұрын

Bless you honey . I’ll be a bit more grateful in your honor. Prayers

Thank you so very much for sharing your story. I think we should all share our stories to spread awareness. It truly is a nightmare to walk through this terrible illness. You and I have similar stories. I have also been diagnosed with POTS, MECFS (chronic fatigue syndrome) and fibromyalgia. These syndromes tend to work together in so many cases. I worked as a nurse and fell ill overnight after a chiropractor neck adjustment. There are so many ways pots or Mecfs can be triggered, although a virus is often times the majority of cases. I’ve researched hundreds of recovery stories and the main theme for healing seems to be brain retraining and calming the nervous system. I’ve tried everything in the past five years with limited success. However, brain retraining has gotten me from wheelchair bound to grocery shopping and even traveling. Obviously, what works for one may not work for another person. I thought I might drop a few names of those people who have been very helpful in my healing journey. Just in case you or your viewers would like to check them out. Dan Neuffer with CFS unraveled is a genius when explaining what is happening in our body and how to get it straightened out. Jason Mctiernan with I can thrive. Toby Morrison with CFS health is another good one. Also, Alex Howard and Raelen Agle kzread.info All five of these people had pots and Mecfs and recovered. You are definitely a strong lady and you do an amazing job of describing what it’s like to walk through this. I pray that you find a treatment plan that works for you. It really is so individualized. Again, thanks for contributing to our community and for helping others feel validated. Big hugs to you guys!!

Love her honesty. Sending love light strength and hope her way. I hope someone on here can shed some more light on what’s she’s feeling

My heart is hurting for your friend. As someone who is also chronically ill and my autoimmune illness is also pretty much an invisible illness, I truly understand when people come at you with ignorance and the depression theory. I understand the feeling of dissociation and having constant brain fog. I wish with all my being that she will get help and answers soon. And Stephi, thank you for providing a chanhel that is a safe place for so many of us.

This was so brave, and so powerful. Thank you for opening up my eyes and sharing Shelby's story.

This video and your friend resonated with me so much. I got sick 9 years ago and was in the hospital for a week, never got better and since have been diagnosed with POTs, Myalgic Encephalomyelitis and Fibromyalgia after millions of tests. Thankfully we have the NHS, can’t imagine what it has been like for her having to pay for all these tests whilst also being so sick. The way your friend explained how she feels is just how I feel and I feel so sorry for her. I turn to drinking sometimes too. Hope she manages to find some answers soon, it’s a hard life. Sending love and light ♥️

@ellebelle6439

2 жыл бұрын

Yep I have been diagnosed with m.e 11 years now :( in the US not good insurance can't afford anymore doctors

Dear Shelby, I truly feel your troubles. I have full body pain everyday, I was diagnosed with Fibromyalgia years ago & than Celiac disease. Or Maybe even lyme disease. i know you area smart person & have already researched everything. I just wanted to mention these 3 things. Stephi knows all about feeling bad so she is a great friend to have. Keep the faith Shelby, Much Love💖

I have several questions: Where did she travel to before the wedding? Where were the ppl from who attended the wedding? Did anyone come from overseas? Was it an outdoor wedding? How often did she spend outside? It’s definitely a neuro virus. There are so many, it takes a while to diagnose these diseases.

@kaynuritdinov3055

2 жыл бұрын

Ur going in the right direction....

@shaycarter2602

2 жыл бұрын

What are the symptoms of Neuro viruses?

@taylorl.9875

2 жыл бұрын

Probably because no one believes them ..

@huertalapaz8359

2 жыл бұрын

Have you tried Lions Mane mushroom tincture , powder or fresh ? It builds new neuron pathways is not that expensive

@taylorl.9875

2 жыл бұрын

@@huertalapaz8359 mushrooms don’t do that

As someone who experienced 8 years of chronic pain and was wrongly diagnosed with multiple conditions, I feel for this girl. No judgement from me, you have to deal the best way you can. I remember taking a handful of pain medication knowing it was too much and too soon, thinking that it would kill or cure me and I didn't care which. Mine was thankfully resolved with surgery and I pray this sweet girl gets some real answers and relief.

I have MS, an autoimmune disease. Lesions on the brain (and spine) for me too 💓Stay strong friend❤️I pray they find a true diagnosis & better treatment for you. ❤️you’re doing better than you think!!!!!!

Oh gosh.... I'm crying. Shelby Shelby... wow. I've watched my daughter's struggled with CF/ME (MCAS) and honestly, her's seems a walk in the park comparatively. And yes, health is wealth and quality of life is everything. I think the frustration when it's an 'invisible' complex illness is this worst. And I really feel you in that frustration especially after watching my daughter have to sleep 3 days at a time and drag herself around in pain, with digestive issues and migraines daily. First, having someone who loves you and will care for you unconditionally could really help. We need to let people caretake us when we are in recovery if we can... just me being bossy and motherly and assuming that you might have a mum or dad or big sister or aunt or grandma or something? Let someone give you daily care so 100% of your energy can go into recovery. And love. You need tonnes and tonnes of love ♡ That done, we went through the traditional health care system in Australia and to my horror, my daughter (now 28yo) was dismissed by specialists denying that she was even ill 🤨 and just told to eat more vegetables 🤦‍♀️😑 Since then we took the financial plunge ($500/ visit) and went to a functional medical doctor and... wow. She listened and now a year in we are slowly getting to the bottom of things. It's a full time very expensive job, recovery. Specialized diet (removing food and additives that exacerbate the condition) blood tests and poop tests etc. Detox and gut biome repair, tonnes of supplements and a 6 week course of intravenous treatment because she wasn't absorbing nutrients etc etc. But! It's working. Next is a mould detox which requires infrared sauna 3x per week and even MORE supplements yadda yadda. One of the things we discovered is that she got Barmah Forest Virus from a mozi bite a few years ago. The thing is though, every 'body' is different and what it has decided to do in her body might not be what it does in someone else's. Also, Vaxxines with adjuvants as the activating ingredient are known to cause autoimmune issues so again, who knows what happened when or what combination of things were set off? If an adjuvant mistakes human material for invading material, the body will attack itself and voilà, chronic illness. Plus, when you DO get a virus, it can trigger off a self attacking response along with a virus attacking response. It's a real Russian roulette thing with jabs altering your immune system's response to things that you can't know until years later when you are exposed to a virus etc. Top of the list re Rx protocol for this is 3x weekly intravenous Vit C and Glutathione for about 6 weeks. It won't hurt anything but your pocket 🤷 Anyway, I hope this is validating and even helpful and not condescending or just more of what you already know. Shelby will need money, lots of it, to get to the bottom of things AND get better. I feel that a Functional Medical Doctor is the best place to start although I am so sorry re the scammers. A good way to know is if they outsource stuff meaning they aren't lining their pockets with your treatment. Our Dr outsources at least half if not more of the tests and treatment protocol AND... its working... step by step. Good luck lovely and ... of course you have to self medicate to survive. Fuck ignorant people 🤨 and big love to you ♡

@denamullen340

2 жыл бұрын

I’m just happy ppl like you exist. Your daughter is very lucky in the mom department.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

I feel so bad for her not finding answers to her pain. Prayers, hugs and donations definitely needed. Steph thank you for helping Shelby.

i don't have a mystery illness of sorts, but it took me 6 years of constantly changing doctors and BEGGING for tests and insisting i was doing the best i could for my health on my own to get taken seriously in terms of getting diagnosed with my chronic illness -- doctors kept telling me it was mental illness/delusion, poor diet, that because i'm a girl i experience all types of hormonal changes due to menstruation (as if i dont know in my fucking 20s what PMS is lmaooo)... they wanted to do everything except for their job. it was a nightmare. i'm only like 9 minutes in, but hearing shelby describe doctors discounting her as being depressed or whatever makes my heart sink. i hope she gets the help she deserves, thanks so much for letting her tell her story!

Much love to you Shelby...and to you Stephi for sticking by her side and for enduring your own health struggles. There is nothing worse than having your life whipped away overnight, replaced by 24/7 pain, isolation, invalidation and not knowing what the culprit is. Then tons of money and energy on doctors, some trying and many others seriously incompetent, offensive and your basic medical gaslighting. I've been in the same boat as you for 7 years. We're prob in alot of the same FB groups, working hard researching, invisibly hanging by a thread and ultimately never giving up. We have alot of the same crazy symptoms: overnight, starting as a virus. then feeling poisoned, shocked and wicked arrhythmia. Was your virus also respiratory? I feel a continuous electric buzzing shocking burning from my diaphragm up. esp in my chest, head and mouth. Like Im on fire. Lately, Im feeling mine was a chemical inhalation exposure - either environmental or (and I hate to think this, but) foul play, as I had just won a lawsuit. I think I had/have something like Chemical Pneumonia and my respiratory system got chemically burned. Does any of that resonate for you? Im glad you found something to help a bit. I was much worse before I started cannabis for sleep. In Solidarity. .

Hope they figure it out soon, to help her. She seems so sweet, like you Stephi! Your both wonderful women, and don't deserve to be in pain, good luck👍♥️🌷

Here is my way of trying to help. POTS is not just symptoms, but also signs. The difference is: A symptom is something that only a patient can report, like "I have a headache" or "I feel dizzy." A sign is something that can be measured by a test, like an elevated blood count, or a fever. POTS is a combination of signs and symptoms. The very name has a sign in it-Tachycardia-which, as you know, is an elevated heart rate. Sometimes, symptoms are the result of a sign, like nausea and lightheadedness (symptoms) can be caused by a drop in blood pressure (a sign). A good understanding of the difference between signs and symptoms can possibly help your conversations with doctors. I hope they get it figured out soon for you.

@theresedignard4267

2 жыл бұрын

Very well explained.

@bruiserqueen605

2 жыл бұрын

After watching the whole video I came here to say the same thing! This sounds very similar to dysautonomia too, as it has so many symptoms that range from mild to severe.

@chellebelle4296

2 жыл бұрын

With POTS it’s not about blood pressure drops.

@victor-charlesscafati

2 жыл бұрын

@@chellebelle4296 You are correct. I didn't say it was-the point of my post was explaining the difference between signs and symptoms, not commenting on POTS specifically. I used multiple examples of signs and symptoms that do not pertain to POTS as examples to illustrate my point.

I feel so bad for your friend. She explained herself very well. I really hope science does catch up and finds a diagnosis and the a cure 💜

I worked at Starbucks for a bit, and had always worked in the food service industry before my current job. And it's stories like these that remind me of how some people take things for granted. People would become irate if they either had to wait long for their coffee or if it wasn't made correctly. It's one thing to say something isn't made right and be nice about it, but some people would get so mad. And all the while I'm thinking "it's just coffee". There's so much to be greatful for that we take for granted, and then become entitled when we aren't greatful for what we have.

I hope this video gets to someone who can help Shelby. Good on you for using your platform to help someone you love. Sending support and prayers to Shelby!

OMG...I KNOW. It's hard not to cry everyday when you're going through this. Keeping depression away is impossible. I'm sorry to anyone who is ill but especially when you have no idea what you have & no one's helping you figure it out. Or worse, says it's in your head or they don't even believe you. I had an awful experience with an awful doctor who didn't believe what I was telling her. I don't think I have the same illness as you but ya never know. I have been going through it though for almost 4 years. I was fine & then I woke up not fine. It's soo true...you don't even care what they would say you have as long as you would know. Feels like asking for a miracle in itself. I also miss doing soo many things. I wish I could exercise. I never wanted to or liked it till this happened to me. If you're healthy, you're blessed. Please don't take it for granted. My skin burns constantly throughout my entire body. My husband can't even touch me most of the time. Did they say you have Fibromyalgia or COPD too. I do have Hypothyroidism & Hasimoto's disease...for sure. Had that for years before. Can't breathe cuz pressure & heart races when I wake up & other times. Migraines. The right side of my body has another pain also but I think it may be unrelated. But of course, I don't know. I also think I have nerve damage somewhere but no one's finding it. Gabapentin was the first thing that helped me in any way but still get exhausted easily & if I don't take it, I can't even walk 10 feet. I wake up & am paralyze lots of times. Feels like something with my muscles. Can't straighten my body. The pain is dibilitating. I would love to talk with you sometime cuz mine started the same way & at about the same time as yours...September 2018 for me. When I woke up gasping for air & couldn't move a single part of my body. Could barely use sound to get my husband's attention. I was fine & then overnight, I wasn't. This was one of the main reasons I wanted to start a KZread channel. To see if anyone could help me figure out my illness. I've felt really bad lately & haven't posted anything so far. You both are giving me strength & courage though so thank you. I hope we can all make it through these nightmare illnesses of ours Girls. Bless y'all. Peace & love Daisy.✌&❤🌼

Girl, you’ve been on a journey. I’m so proud of you that your still here and still fighting. Have you ever heard of FND? It’s almost like a central nervous system dysfunction. My mum has it and it was triggered by a virus. She literally woke up one morning when I was little and lost the use of her leg (she regained it, yay!). She fought for 18+ years for a diagnosis. Your story and symptoms are very similar to hers. Keep your chin up 🤍🙏.

It sounds like Small Fiber Peripheral Neuropathy!! I was just diagnosed. My symptoms are yours. The burning, the POTS, the lightening in the head and that whooshing feeling in my brain. Now I use Medical Marijuana. It helps a lot with the pain.

@abigailh7715

2 жыл бұрын

What treatment is there? Looks like anti depressants is recommended..

@iwasfloyd

2 жыл бұрын

@@abigailh7715 it's more try and see and then try some more. I'm still waiting on a definitive word about what I should be taking.

@websurfer5772

2 жыл бұрын

I've got peripheral neuropathy now too along with other chronic illnesses. Yes, cannabis helps to a degree. So does Lidocaine/Ketamine cream which does not enter the bloodstream through the skin. All other drugs I've tried topically went right into my bloodstream causing horrific symptoms from just a dime-sized amount. I've found nothing else that works for me.

@iwasfloyd

2 жыл бұрын

@@websurfer5772 I use Lidocaine/Prilocaine cream. It helps a bit but it works better for me if I have a canna pill. It's a pill with THC/CBD in it. Well a capsule. It works to make me able to function. Do I get a lil high? Yes I do and I'm able to completely relax so my body isn't tensed up in pain constantly. I'm 60 and my kids are in their 30's, and they laugh at me when I talk about what dosage I use or how good a certain strain is. I'm a member of a cannabis club here in town, and most of the members are older like me. Growers and users. We also have a number of young people in the club who are learning how to grow and what to do. Most of the weed is grown for pain. And it works.

@lolitaalmostgrown

2 жыл бұрын

I take Tramadol. The cannabis just doesn’t cut the mustard, but I’m guessing these ladies have been introduced to MJ

This sounds like what I'm going through so much!I've been told lime, fibromyalgia,lupus, vitamin deficiencies, swelling on my brain...I'm in a wheelchair on bad days..I'm so sorry that your feeling this I know it's miserable...I still have no answers they just keep putting me on more meds... please if you find any answers share ..I'm desperately seeking answers too... sending light and love

Peace and prayers to you both. Hope she gets what she needs, and I hope your illness stays at bay Steph

I’ve been down with back for the last two weeks and your absolutely right, when your down you don’t realize how much you take for granted and appreciate your function.

Thank you Stephi for honoring your friend and thank you Shelby for being brave and telling your story. I have been sick all my life with ear nose and throat issues, I was told I'd grow out fo, I'm 46 and learned herbal remedies to use to help combat when I have those flare ups. I never felt right my whole life, I always hurt and was always told it was growing pains. I had a major back injury in 2004 that doctors say triggered my fibromyalgia into full force. I also found through bloodwork that I had a positive eastern barr virus at some point in my life. My symptoms Aneta as severe as Shelby has, but I do understand many parts like not being able to work a normal job and even exercising can be a daunting task because of what the days after a workout may look like due to triggering a flare up from too much activity. I'm proud of all of us who have daily challenges with our health as a lot don't even know the challenges we face everyday. Thank you again for being so vulnerable

Sounds like a tick borne infection. Took me 10 years to recoup. Monolaurin helped me a lot. I’m at 90% back to normal but damage was done to my heart and nervous system. Be careful treating it bc the treatment either with pharmaceuticals or natural can cause symptoms to be worse. I went into shock during treatment. Hope you get better!

I wish Shelby the best! She is incredibly strong and it was very informative hearing her perspective. Both of you offered some real wisdom in this video just by being yourselves. Im glad you didn't re-record it, this video is great!

“Health is a crown that the healthy wear on their heads but only the sick can see it” was a quote I came across Last October, when I was dying from inexplicable malnutrition. No one could understand or give an even remotely accurate/sensible diagnosis. So after three days and no answers, I checked myself out AMA, disgusted. Why was I throwing up everything I consumed, including ice chips? Why did everything hurt? Where had my usual, ever-present joy gone? Why was I no longer indefatigable. The symptoms are back & I’m terrified. I’m not going to the “pain, depression, bipolar, anxiety, hopelessness Olympics” with you, but I get it. And, I’m so sorry for what you endured & are still enduring. Truly.

Hi, I'm Tom and can relate. I have an autoimmune disease Rheumatoid arthritis and had it very bad for years. Pain, feverish joints, bedridden and helpless. I found a study in the late 90's were they filtered my blood removed bad things. 36 treatments and I felt 90% better. 15 years go by and I start loosing track of seconds nodding off basically. My RA starts coming back. Hallucinating can't take care of myself. All kinds of symptoms. Hospitalized 4 times over 2 years. 2 spinal taps, mri's , Ct scans X-rays blood work every morning. Stool and fluid samples never any diagnosis of anything. The last time they sent me to an old folks home to die I think. Ever hear of a Hoyer. It's machine that picks you up in a sling. That's how they transport you to take a shower. I was almost completely paralyzed. But every time being away from my home I slowly would get well enough to go home. Turns out a fine pinhole of water had been spraying out in the crawl space underneath my room and my bathroom. A layer of black mold was covering everything. I moved out and haven't had those symptoms again. Except my RA is back somewhat but manageable. The black mold apparently set my immune systems off. I hope you can figure out what is triggering your immune system. Thanks for reading. Tom

Ive had the same symptoms for 5 years!!!!! ive been diagnosesdwith fibromyalgia, severe anxiety and depression IBS, stress induced seizures etc. there are days where i cant think of any words or anything and i feel like im in a fever dream most days its awful. Im in constant full body pain, my doctor has given up on trying to figure out the root cause. alot of people just say im over reacting even when there are days where i just wish for death from the pain. i still dont know what is fully wrong with me. You are so brave for sharing your illness and i hope you find answers soon

@montyford1995

2 жыл бұрын

i also forgot to mention i have random heart palpitations even when sitting, i dissociate everyday all the time, the brain fog is so severe i have difficulties talking sometimes...its basically a new symptom everyday!! i was also active and was constantly on the go. i dont remember much from when it started but i remember waking up in pain one night and its just gotten worse sense. Ive been told to basically suck it up and i miss just being able to walk to my mailbox without almost collapsing...

@StitchinAintEasy

2 жыл бұрын

Have you talked to your dr about ME? I have been really sick for over a decade; I have been to the Mayo and more doctors than I can count. A lot of them told me it was all in my head. My new doctor diagnosed me with Eosinophilic Gastroenteritis. I was still having so many issues that were unrelated to the EG. My doctor finally diagnosed me with with myalgic encephalomyelitis or ME, as well as the EG. It’s a lot like chronic fatigue, but it has more to do with your immune system. It all made so much sense. I have been diagnosed with fibro, I have awful anxiety and I am in so much pain and I vomit so often I am bedridden. I don’t know if this will help at all or not. I’m so sorry that you are going through this. ❤️❤️❤️🌞🌞🌻🌻

@TheWaldHaven

2 жыл бұрын

I was also wondering if it was fibro x

@montyford1995

2 жыл бұрын

@@StitchinAintEasy I’ve been through a bunch of tests for different intestinal disorders and everything is negative besides a large intestinal infection which I’ve had for year :(

@StitchinAintEasy

2 жыл бұрын

@@montyford1995 I’m so sorry, sweetheart! I hope they get you figured out soon.

I was diagnosed with SLE LUPUS after 10+ yrs of fighting for a diagnosis. Has she seen a Rheumatologist ? It can cause organ damage as well as brain lesions and everything else she is explaining!!

Watched your video 3times cause couldn't believe what l saw/heared... l went trough the exact same stuff, couldn't walk lift my arms or use my hands from one day to the next. Over night- just like this!!! was quite athletic before walked and climbed mountains did all my runnings and errands with my bike. and then last August l literally became paralyzed/numb over night! couldn't feel my legs from hips all the way down to my toes, and IF there was a little bit of sensation it felt just like Shelby described- if someone had pushed poison into my veins and my ankles hurt like a horse was constantly kicking against them.... was brought to hospital (all kinds of examinations/ also including "lymbal punktion" the painful shit where they go into my spine with that long, nasty needle to pull out brain liquids... and they couldn't find anything. Came up with a lot of diagnoses (also Lyme/Boreolosis ) but nothing seemed to fit for my conditions!! after 4 month in wheelchair/ bed, an "army" of doctors and specialists they said it might be Guillain Barrè Syndrome. (Please look up yourself the symptoms and the illness, cause my medical English is way too bad to get it into the right terms!) got 7days treatment with Privigen (injections) one month brake and then a 2.round -- and it helped!! (at least for me) l'm still not back to normal, but at least l can walk on my own again and that HORRIBLE pain went down to very little... I should have gone to after care and physio therapy, but because I'm not vaccinated that wasn't allowed for me. I do "home treatment" with elektro-shock wave therapy (to help nerve and muscle system) and vitamin D3 in very high dosis (4000 I.E.) per day also helped a lot!! and as painful as it is, l push myself as often as possible to do yoga and pilates.... if there's something new l could tell you (Guillain Barrè Syndrome) please let me know and I will try my BEST to do a proper translation for all the medical stuff!! my thoughts are with your friend Shelby☀💚 send a lot of strength, hope and LOVE!! peace Stephie✌

You are a good friend Sorry for Shelby’s pain and suffering Hoping she gets the help she needs Live the doggy squeaking his ball So cute 🥰

Hope the doctors find answers to her illness she seems like an amazing beautiful person you are such a caring person love you stephi you are such a good person and a good friend to have

Thank you stephi for sharing shelby's story with us, she is the sweetest!! I know this will help bring more awareness to these kinds of issues.

Shelby, giving you a virtual hug! I really hope you find the help you need and deserve. Also thanks for calling out the privilege that is good health.

I thank you for sharing your journey with this. Being so open and vulnerable about it. I am really hoping that you find some relief and answers soon. I too am struggling with mysterious pains and my nurse practitioner is getting better with listening to me. I too don't take anything for my symptoms. I am an addict in recovery. I have 7 years off of drugs and 10 years sober. My nurse practitioner flagged me so when i do go into hospital they don't give me anything as thry wouldn't listen to me. I suggest that you look into fibromyalgia, rheumatoid arthritis and complex regional pain syndrome. And I too strongly believe that you and many others will find answers. As my mantra has been since getting chronic pain is "knowledge of anything can give us power and possibilities " Much love and respect again for you too Stephi for giving this space for your friend get some support and help 💜💞💜 upwards and onwards

Prayers for Shelby🙏🏼💞 and love to both of you ❤️ You're amazing Stephi👏🏻

Have any of the doctors tested her for different parasitic infections? Sounds like a lot of the stories on Monsters Inside Me, especially having traveled so much & to warm climates. Some can be rare & hard to diagnose, wax & wane over & over, cause brain issues, etc. Or test for other viral infections, bacterial, fungal/mold, idk 💔 I wish success in recovery, beautiful human ❤️

@samanthajade6042

2 жыл бұрын

M R: I was thinking the same thing.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

I a similar (but a bit different) situation. Set in literally over night. Woke up one morning and I just wasn’t right. I was lucky in that my family doctor was amazing and referred me all over. I got told by two very good, very kind doctors that they didn’t know what was wrong with me and that sometimes this stuff just happens and they don’t know why. I can’t stress how non-dismissive this was. They believed me and were trying to help but unfortunately, they didn’t have an answer. It was frustrating to hear for sure. One of them told me to give it time. Treat the symptoms as best we can, monitor things, and see if it resolves. I can still remember that conversation and how frustrated and angry I was with it. I was lucky that, in my case, things seemed to settle. Mostly. Still a few odd things going on but for the most part, I’m okay and I’m off all the medication I was put on. I hope you’ve found some answers since this video was posted but if you haven’t, know you’re not alone. In my case we think it was a head injury of all things though I did also hear the same theory about a virus. I totally hear you on the Lyme thing because I went down that rabbit hole as well. It’s really hard to know what information to trust. Chronic Lyme is massively ignored by most doctors and that opens up the doors for people to scam you. I’ve seen a few peers from fb groups and stuff go down that rabbit hole, spend every penny they have, and still be sick.

A silent voice here. Have experienced the despair of sudden onset illness pain, suffering, brain fog and the ridiculous journey towards diagnosis and the hope of an answer so I could “fixit” and return to “me.” But it never happened like that. I’ve had the same judgment from others, both the medical community, friends and family, while I faded away trying to stay strong to fight for myself. I was finally diagnosed with the main culprits by pure accident but not before it has ravaged my body and mental health. BUT diagnosed at least. I’m so much older now though. I’m being treated now and have regained some inkling of a quality of life but this journey of judgment by others and my own self doubt that resulted have left scars that I’ll always have. I have one friend who believed me and believed IN me and that was enough to keep me trying to survive each day. I don’t hold resentment because I have learned that those emotions give the illness food to thrive. There is always the possibility of answers and healing and I hope that for you. You’re a beautiful soul and worthy of the fight. Unless someone is walking in your shoes they’ve no merit in their judgment. Peace and love always ✌️💜

OMG..what a beautiful soul.. I pray you find out something soon!

Shelby, I’m so sorry you’re going thru this. I think telling your story may help you find some results. It’s so true, if you’re suffering physically and mentally, life doesn’t seem worth it. For you to not even take something for pain, you’re a lot stronger than you think. I wish you a full recovery. I will say a prayer for you!

I'm so sorry you're experiencing this Shelby. I know you've already been through so much and have gotten SO many suggestions, but have you tried chiropractic? So often people see the videos on KZread and think that chiropractic is just a bunch of back and neck "cracking". But chiropractors actually are nervous system doctors. The specific adjustments are done in order to not just correct posture or back pain (stereotypical belief which is only partly true), but they are done in order to ensure that the nerves in the spine have a clear path so that communication between the brain and rest of the body is clear. There are chiropractors who specialize in helping people who may have POTS or Lyme or similar symptoms. Also, I'm sure that this intense life/health experience has come with a lot of emotional trauma so checkout Network Spinal Chiropractic as well (more of an energy work/ light touch chiropractic). Chiropractic may not be the answer for you and will not bring immediate relief, but as a recent graduate of chiropractic college, I know it is something that can possibly help you start moving in a healing direction. Sending you SO much love and hoping you are able to get answers and healing much sooner than later.

So sorry your friend is going through all of this. I am wishing her health, healing and a proper diagnosis so she can hopefully treat whatever the underlying issue is. I had undiagnosed Lymes for several years in my childhood which caused a lot of damage. Doctors said I was being dramatic, or was simply depressed. I eventually got diagnosed with lupus then it changes to MS. I woke up one day completely paralyzed and had to be rushed to a hospital. I got transferred to a special pediatric facility and after seeing dozens of doctors I finally got diagnosed with Lyme Disease. It’s insane how often it goes under doctor’s radar.

Ya! So true that the NOT KNOWING is the worst!!! Hugs to your friend and to you! ❤️❤️❤️❤️❤️❤️❤️

No-one should live in pain. I really hope your friend finds someone that can help. Sending positive vibes. ❤️ and thank you, you are a special person 😘😘

Wow !! I totally get you Shelby, hearing your story it could of been me, I went from a outgoing person loving life over night to be an agoraphobic in so much pain every day and continuing bouts of a fever & sickness , all drs put it down to anxiety and depression, I’m on enough meds to knock a horse out but nothing changed, big hugs to you. 20 years !! Later no change, they added vertigo and fibromyalgia but still no help, keep on fighting Shelby 1 day we will be listened to xx

I'm so sorry your friend is going through this. It sounds so awful😔 My 18 yr old cousin was diagnosed with POTS. She has a support dog that she trained to help her. I pray there is something that can cure this stuff eventually 🙏🏻

You are such a great friend Stephi. Overnight Shelby gets this sick after partying. I think she was poisoned. Good luck 🍀 I wish I was a doctor.

Beautiful interview stephi, there are no easy answers in life , sometimes the only way through it is to go through it

I’m so sorry you are dealing with POTS. I have Ehlers Danlos Syndrome and POTS is a comorbidity . It took several years to get diagnosed. It was a living hell. I hope you find help❤️🙏

Hi stephi. I’m from Australia I work in Intensive Care unit. We have a young 24 year old man that has been in hospital now for 2 years. He was a completely normal man. Then one evening he came into Emergency Department in a bad state. He is now paralysed and unable to use any of his limbs apart from his eyes to look up for yes and look down for no to communicate with people. It is incredibly sad to see him 5his way so young. He has a mysterious illness too,his brain from scans show that it seams to be slowly dying. Shelby I wish you all the best and all the happiness you can get from life and your incredible friend stephi. Please don’t give up I wish I could help you and be your fairy godmother. Peace to you and your future adventures. I have been watching you for a long time and wish I could meet you.

I admire the strength it takes to explain your story. It gets exhausting having to repeat it thousands of times. I sincerely hope they find what makes you feel comfortable in your body shelby.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

Hey Steph been following your journey for years, I wish your friend the best and I hope she's gets better :) stay strong girl

@emilychristie8660

2 жыл бұрын

♥️♥️♥️♥️♥️

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

I'm so sorry! This is scary! My sister went through something like this. She was fine and then she wasn't and none of the doctors took her serious or could find anything wrong. Finally they found an infection on her brain, meningitis. They said she's lucky to be alive. She needed spinal taps as well. She has Lyme's as well. Have you been checked for meningitis? I'm sure you have but figured I would mention it. I mean you sound so much like my sister ...it was heartbreaking watching her go thru all that and no one helping her!!! Also I have Lyme's I found the deer tick on me and got it and me tested and everything and I have never had any symptoms like that. Don't stop pushing because if we don't the doctor's sure won't!! God bless your friend, she's in my prayers!!! ✌🏼🧡

You are so brave, never once judged you! Everyone deals with pain in their own way and nobody but you know how you feel. We love you! Praying for healing and answers! ❤️❤️❤️❤️❤️❤️❤️

Hi Steph. I really hope that your friend finds an answer as to why she feels the way she does. Its so diffult to suffer from an unknown condition. I wish her the best.

@emilychristie8660

2 жыл бұрын

♥️♥️♥️♥️

@websurfer5772

2 жыл бұрын

Yes. Not knowing is definitely worse than any diagnosis.

@robertwarbrick7560

2 жыл бұрын

Shelby is having "in my head"/headache symptoms, vision symptoms, emotional symptoms, and has a mass in her CT/MRI (all pituitary tumor signs/symptoms). PLEASE promote this response (like) so they can see this! TY ALL! Overview of pituitary tumor/symptoms: kzread.info/dash/bejne/lmZ8y8uSZ8jHZNo.html kzread.info/dash/bejne/fImJprGqaKfFcZc.html kzread.info/dash/bejne/oYWFl9KcmNipnZs.html kzread.info/dash/bejne/e4ef19yElJqTlto.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html kzread.info/dash/bejne/ZqSOxraIYLa3drw.html

I wish some day I could get in my stupid car and I will put my best friend cat in the front seat and come hang out in the park and find y’all. I know you don’t know me but I have been watching you for a while and now knowing your best friend I love y’all even more-some of the realest truest aliens I have discovered around this planet. We can literally talk about the exact same weird shit and do some exploring/ dancing /poi/ (then I’ll be too tired and need to sit down HA) so we can talk about saturn, when Bjork took apart her tv for MTV, fractals or just whatever….Etc etc etc Im so glad you guys found each other bc you seem to have a cosmic twinkle bond- (and I think you find those people everywhere you go that are the secret soul connections meant to meet you and vice versa) It’s honestly undeniable what the two of you have between you- I am so weepy that you found each other and happy. (Ps. Shelby, Just got out of my 4th “curls-in-ball and sits under the water in my bathtub session today”- bc it’s the place i go if I’m in duress. paint on the shower walls, and throw glow sticks in the bath water. Cry every time it wells up, when the water gets tepid add more hot for however many hours it takes. I once sat in there for no joke 8 hours. It was a very bad night lol. Add a Bathing suit and if people need you add a stool or extra seating for guests LOL- I’ve been known to sit in water for hours in times of great peril. **Unhinged underground bathtub crying rave parties 🎉🤖👽 💕)

Thank you for sharing your story. I’m praying for your healing. 🙏 [Medical Industry: one of the few professions where you can be wrong or not have the answer, and still get paid for it.] 🤔

I deal with the exact same thing as you described. But I have had several diagnoses. The main one being Ehlers-Danlos Syndrome which has caused literally countless comorbidities and an endless list of symptoms that for me started at birth. My mom was trucking me to doctors and therapists and hospitals in the mid 70s because I would just "zone out" I literally wasn't there. I have had severe narcolepsy since i was 3 years old with sleep paralysis that I have always and still do deal with every single day making reality and dreams melt together causing false memories and making it hard to know whats real and whats not. Brain fog and severe memory issues long and short term, and as of the past 12 years cognitive function and finding words has become really problematic. I used to be really assertive and well spoken. As a kid my dad called me a hypochondriac my entire life. He's dead now. Now the doctors say the same thing without using the same word. By age 6 I had Alice in Wonderland Syndrome with severe panic attacks that gave me a sense of medical dread like I was dying or being taken away from myself....aka dissociation which caused me to have agoraphobia (I had it from 6-8 years old), I saw my first psycologist when I was 6 and never stopped that trend ubtil I could make my own decisions. The agoraphobia went away but doesn't mean those experiences stopped happening, my parents moved us to the country in Colorado and we got horses which I got really into and it was therapeutic enough that leaving the house wasn't what triggered the panic attacks anymore and there werent crowds of people which was one of the things that would set them off. I had them well into my 20s. I call them panic attacks because I don't know what they were and they caused me to panic. My whole body would be washed with a strong wave of heat, burning front head to well....I don't know because I would start to panic as that made me feel like I was losing myself from the dissociation and the dreamlike Alice In Wonderland feeling. It was horrifying. I am still scared it could happen again at any time and I'm 48 and it hasn't happened in 20 years or more. But now I am bedbound, wheelchair bound, housebound. I CAN get to doctor appointments or pick up my prescriptions but that's it. I lost my really exciting social life in the punk community when I was 36 (I was involved with those friends since my teens). So you can imagine the feeling of going from being with them constantly to seeing none of them and not being believed by them. Having them turn their backs on you. Yup. I absolutely know what that feels like. I went through decades of trying to find a diagnosis. I was diagnosed with Ehlers-Danlos Syndrome 12 years ago and just went to a genetics doctor who won't test me for it and is saying I have "hypermobility spectrum disorder" and that POTS and gastroparesis and mast cell activation disorder all of which I also have, aren't comorbidities of EDS which is strange since we all (well the sickest EDS patients) have the trifecta of those. So then he tested me for something he said he doesn't really think I have called "adrenoleukodystrophy" and I'm waiting for the results. I just saw him 3 weeks ago. Sk you can imagine being validated FINALLY and believed (to an extent) by being diagnosed by a well renowned rheumatologist and then 12 years later having your diagnosis taken away by someone who won't even test you because the gene mutation for the type he had decided I had (or don't have? Or would have?) has yet to be found. My feeling is, you're testing me for something you don't think I have but not testing me for something your colleague diagnosed me with and all my doctors since agree with and the gene mutation is very close to being found and so why not have my blood on file to be tested. So now I'm on a spectrum when EDS is a spectrum disorder. It's so stupid. I hate doctors. I have such bad medical PTSD it's insane. I have pulled away from seeing doctors unless I absolutely have to. I'm sick of the BS. I feel terrible for everyone in this situation. And one thing that's extraordinary true is being a young woman with dreads and tattoos, now I'm an older woman without my dreads because my neck can hold them anymore and my cevical spine is deteriorating and needs to be fused now, with tattoos...women are just always going to be the hysterical or hormonal female with depression or anxiety made to eat terribly toxic medication to avoid taking an opiate for chronic pain that's so severe they want to die...so then we're drug seekers. Men aren't treated like this not this bad. They're the smart ones and don't go to the doctor (I'm being sarcastic, but it's kinda true). I REALLY hope the medical field gets their shit together and stops thinking everyone that looks like us or has a vagina is faking it. What for? To be treated like crap and gaslight and passed off to the local psychiatrist or made to go down a long line of years and years of doctors when they can barely get out if their bed on the floor because they can't face the light outside of the dark silence wearing earplugs to drown out noise and a t shirt wrapped around their eyes with ice packs everywhere? The work we have to do to just go to the doctor once is astronomical. Just putting my 5,000 pound wheelchair together it weighs that because I have no strength left) is too hard for me and I have to have my 77 year old mom take me to the doctor. It's always a wasted appointment just like the genetics doctor I saw 3 weeks ago I waited 4 years to see since he's the only one in the state who takes Medicaid. This is a PROBLEM. We are SICK. And when will there be a doctor willing to do their job and actually find out exactly what's wrong because we are not the only person with this...look at the comments here. And that's just the people who have happened to see one KZread video. Sorry this was so long. My heart goes out to ALL of you in this situation or a similar one. All the chronically ill people out there. We deserve validation which comes with being believed and having a diagnosis. I have an 18 year old daughter who has had 2 multi organ transplants and her symptoms are a million times worse than mine but many are the same ones. She has been on deaths doorstep since before she was born. She STILL doesn't have a diagnosis and has been seen in Norway, Sweden and America. Her genetic tissue, blood and muscle biopsies spinal taps and so on are all over the world. How can we be so alike and have my doctors saying it's not the same thing when they know nothing about her? That says something in my opinion. Something is wrong. And EGO has a lot to do with it.

Oh Shelby, you have been so brave . Thank you for bringing your story to us. My heart goes out to you. Keep searching. Don't give up. Steph please keep us up with what happens with Shelby. And Shelby, I'll keep you in my prayers and in my meditation. I suggest you maintain a spiritual exercise like meditation and yoga to help you find peace. 🙏🏻🕊💔🍄😵‍💫

Holy heck this is insane, Shelby I'm so so sorry you and my husband and grandma sound exactly the same); I am constantly searching and reading 📚 to find answers. My husband says things like he doesn't want to live like this idk why your with me.... it breaks my heart hearing him suffer. He was told its mono 😔 witch is horse shit. My grandma has fibermialga and then no answers. So they sit in there suffering day in and day out. Your a strong 2 beautiful souls. Healthcare should not cost anything period. Humans shouldn't suffer Like this. Many people cope by using man made poison that they can afford bc they make Healthcare unreachable. So sad! Sending all my love babes I wish I had more answers or advice. People are judgmental really they should be judging themselves bc we need ti support help and love one another. 💙 Sending my support 🙏 ❤ from Wasilla Alaska, Tschandra

I'm so sorry that you are going through this Shelby. Steph- you are a fantastic and truly beautiful friend and human. I'm an addict in recovery- and my beautiful Daughter, has Rheumatoid Athritis. I mention both- because my feeling is that addiction and an auto immune disorder may be relevant to you unfortunately Shelby. I truly understand the indescribable need for self medicating.. yet I also understand the damage, delusion, confusion and paradoxical pain- it causes. I wonder if you could find one specialist who understands the complexities of an undiagnosed/ misdiagnosed possible autoimmune disorder and also addiction- and you start from that growing perspective. The biggest problem with having both issues- is that they aren't friends to one another- infact, they are the most damaging of enemies. Some, if not most medications (combined with alcohol) are ineffective at best- deathly at worst. It sounds like you have inflammation.. and without consistent and specific medical oversight.. you won't know of any changes/new symptoms- and the alcohol too- can mask- but it can also inflame. It must be so inexplicably torturous to face each day without the understanding of what's happening to you- but maybe it is in that mystery- that also has to be your power. I guess what I'm trying to convey (poorly 🙄 I'm sorry)- is that if you can start with acceptance around not knowing- but focused on accepting the process of wanting to know- opposed to risking a state of 'never knowing' and therefore forever self medicating- you will be so much better in the long term. The sad truth/reality is, that it can take years for a diagnosis- self medicating will make that journey not just longer- but maybe impossible... because it becomes too overlapped and confusing. There are more effective pain medications and trials etc than alcohol. Emotional pain and physical pain are very linked- and alcohol doesn't actually help with pain- it just masks your perception of it.. True relief can come from the journey of diagnosis and medications and trials etc..the drinking unfortunately eliminates you from those long term benefits- and underneath the mask of alcohol your health is sadly going to end up worse. In the meantime you could maybe find support and pain relief through a Pain Management Clinic. I hope this doesn't seem harsh.. I just know in my heart that you can do this Shelby. I know you are so scared, exhausted and consumed with pain.. and the alcohol feels like your best friend. Addiction is a lie though- it's cunning and baffling in the most destructive of ways. If you do decide to stop drinking- don't do it abruptly- or without professional help.. and I really recommend AA. Sending you ALL my love. I would love to see you more on Steph's channel- you are so lovely, real, interesting and creative. I wish you all the best and I support you whatever approach you decide to take. I just know your potential and want to see you the healthiest, happiest and most productive you can be. Don't ever forget how strong and inspiring you are Shelby 💘

I'm so sorry you're going through this. I recently told a doctor about a seizure-like episode I had, and he suggested that maybe I was dreaming.