bad news - they were wrong, no diagnosis still

[@sifrabakker3332]

This is really relatable. I have multiple diagnoses but not like a full syndrome, so every time I need to tell someone what I have it’s like. “So do you want it in difficult terms and be bored for 30 minutes or do I tell you that I have a heart condition an disabled hand and that I’m legally blind with an touch of allergies.

[@kimberlykrupke5715]

Hi all I feel just like Jo at the moment. I saw a new doctor on 3/24. I've been sick since the Fall of 2012. I have never been given one diagnosis I felt confident in. My new doctor is starting at the beginning. She does agree with me that the final diagnosis is going to be Silicone Implant illness. Just like you Jo all I want is a DIAGNOSIS. I so enjoy watching your videos. I feel even more related to your issue.
Keep the peace with your body and be good to yourself.

[@rosewiththorns4669]

Very true. I know i have gastroperesis and ibs but treat come back normal but i still get stomach and gi issues. You know what you're experiencing. Do take it seriously. Hugs and prayers

[@peachxtaehyung]

I'm so sorry that this wasn't the right diagnose... But I'm also glad they're wanting to be sure that they have the right diagnose for you

[@user-fy2zn8bg5j]

Do dress warmly...LAYERS OF Clothing.recommend Thermal NASA Portable Heater.invwnted by NASA employee..

[@peachxtaehyung]

@@user-fy2zn8bg5j ????

[@veroniquemichel6820]

I have received lots of false diagnosis. It took 25 years to get an Elhers Danlos Syndrome diagnosis. I'm in a wheelchair but now I know why! Finally!

[@juhaa4180]

❗️Jo needs to see this, bring it up folks❗️
I think you've seen it if you scrolled through the comments but it seems very likely to the people concerned that you might have EDS (Ehlers danlos syndrome) which is a connective tissue disorder that causes many of the symptoms you talked about. You should try and talk about it to a rheumatologist who might know about it. You could also have other conditions, but EDS has a lot of comorbidities so it wouldn't be unlikely that you have EDS and some thing(s) else. It is way more common than people think since it's considered a "rare disease" but could be touching almost 1 or 2% of the population. It is also very frequently misdiagnosed as fibromyalgia for example but as many other physical or psychological illnesses too. So (as an EDS patient) I would suggest you to look up for this a bit and then bring it up to your doctor, or one you feel confident with, the best would be a rheumatologist, an orthopedist or even a dermatologist since the syndrome has (in many cases) skin symptoms. Wish you could luck in your research, stay strong, much love.
Sorry if I've made any mistake I'm not a native speaker :)

[@unelicorneenvrai...8091]

Yes I think she should bring it up

[@lifewithkirsten7670]

I have eds as well and it does seem like that may be the answer

[@joh9318]

I was also thinking about mentioning EDS. Also curious if she's ever had a standing MRI to look for chiari malformation (brain stem shenanigans that are more common with EDS). It's not the most satisfying diagnosis, since it's a syndrome and the root cause is frequently unknown, but Jo's experiences sound so much like my own. I didn't start down the path toward diagnosis until a physical therapist used me to demonstrate hypermobility to her interns, because no doctor had ever noticed or commented on how unusual my range of motion is.

[@gabrielstone8548]

I have hEDS. I thought as soon as I saw Jo's video a month ago I thought it could be one of the 13 types of EDS or the multitudes of subcategories that are out there. Again getting this diagnosed is SOOOOO hard. No one ever actually knows what it is.

[@mado11373]

I was thinking the same thing!! Remember that hypermobility and flexibility are NOT the same. I didn’t think i could have EDS because I’m not flexible due to tight muscles BUT i have VERY hypermobile joints!

[@KaylaNatalie]

Thank you so much for talking about this. I was undiagnosed with endometriosis (a reproductive disease) for years and it makes it better with an actual title on it. I’m also 99% sure I have ADHD but wasn’t diagnosed as a kid and now as an adult finally coming to terms with the fact that I don’t have a diagnosis but have all the symptoms sucks. Being undiagnosed is hard because people look down upon that and don’t take it as seriously as when you have a diagnosis

[@sabrinahaake8195]

Thank you for commenting. This makes me feel seen. I have ADHD and endometriosis! Both are so often overlooked and misunderstood. Both got diagnosed last year at the age of 20 and I was so relieved and simultaneously felt like I was hit by a bus.

[@17andtravelling]

I have endo too. Well, we don't know for sure and they won't do the surgery to see if I do or not because it's easier for them not to. A diagnosis to help explain why I'm screaming in pain in the fetal position while vomiting would seriously help me. Right now people think I'm overdramatic and that I should just deal with it "like every other woman"

[@kristelfae5054]

@@17andtravelling worth persisting if you can find a endo specialist excision surgeon. Endo sucks! Hugs ❤️

[@kristelfae5054]

It's harder but possible to get diagnosed with ADHD as an adult, but self identifying among neuro diverse communities is also okay 👌

[@chronischgeheilt]

I'm 34. I'm in 'mental health world' since childhood, more severely suffering since about 10 years, myself thinking of adhd for about half a yr/yr now. got my adhd appointment on the 7th (yay! :)) . We'll see. I'm saying this to encourage you to keep on it. Collect (write down in one place) your assumed symptoms whenever you recognize them and try to find a place to get diagnosed. If it is adhd, proper medication and coaching could change a lot. Hardest Task is probably finding somebody competent enough to diagnose adults...

[@InariKitsune42]

I don't like sharing often. I have Multiple Autoimmune Syndrome. I recently found your channel. This story brought me to tears. I feel for your frustration. I've felt that too. I may be crying but it's because you're being strong. My body is changing again. They are trying to figure out what else is going on inside me. I was feeling a bit weak and disheartened. This was cathartic and I am reminded that I will get through this. I can keep being strong too. Thank you for sharing. This meant a lot.

[@matildaGin777]

There is a show called Diagnosis where group of doctors research and diagnose the most undiagnosible cases. I'm not sure if it will have season this year or it already has but I know that you can try and have a look and apply. I watched few shows it is pretty amazing as they involve doctors from different countries as best specialists in specific fields. You never know

[@melissacoviello2886]

You aren’t wrong about wanting a diagnosis, but also I’m glad the doctor is willing to give you the answer you don’t want. I’m glad they want to keep looking to make sure that’s what you have.

[@amammaof2]

I also have fibromyalgia. Took me years to get diagnosed. It’s hard because it changes everyday. I’m sorry you have to deal with this condition. A diagnosis also gives you a community of people who ‘get’ you. It’s a key to belonging somewhere instead of feeling like an untethered balloon floating everywhere. It gives you an understanding yourself and I agree, it’s a license to start doing the self care that is easy to skip when you just don’t know a name for what you have. So welcome to the club. Glad to have you but wish you didn’t have to be here dealing with it.
The good news, is there is a lot of interest growing in research of fibro. Some promising new advances are being pursued. I hope one day it’s at least more treatable, even if not curable. Stay well Jo. Gentle hugs!

[@redsorgum]

I’m a guy with fibro, I’m expected to man up and deal with it. I often fake that I’m not disabled. Fibromyalgia, the gift that keeps on giving.

[@sabrinahaake8195]

Thank you for posting this.
I tell people who don't get being relieved about a diagnosis : having horrible symptoms that you know the reason for is a hell of a lot less scary than not knowing why you are experiencing the same symptoms.
Hope this comes across. English is not my first language 😅

[@17andtravelling]

Yep, totally! I have loads of symptoms of autism in girls, but people say "isn't it easier without a diagnosis so people don't label you?" but really I just need the confirmation that I'm not crazy and also have access to support only available after a diagnosis.

[@sabrinahaake8195]

@@17andtravelling yes!
I have ADHD and I labeled my self and other people labeled me. And ADHD is definitely the kindest label of them all! Living without label is an illusion. A diagnosis is a very helpful label

[@Catlily5]

It is good to have a diagnosis for mental illness but also take them with a grain of salt. They don't know much about the brain yet. I have been diagnosed with 15 different mental illnesses (not all at the same time). The symptoms for various mental illnesses overlap a lot and can be difficult to sort out.

[@kyaevus4850]

I hate, absolutely DESPISE, that you're going through this. Its sucks so damn hard. But, thank you so, so much for sharing this. Its so hard to find chronically ill influencers who don't have a diagnosis. And being willing to tell people what you're going through is huge for all of us who feel unrepresented and are tired of hearing "well, your tests are normal". So thank you

[@colleenshaw1607]

Can relate

[@Lizwhynot]

Much agreed. Jo does so much between trauma talk and footless Jo. Not sure which channel this is because mobile hides that while typing but. This is important for everyone. I hope she gets back even a fraction of the help she puts into these channels.

[@AprilHoney]

It took 30 years to get a diagnosis. I was literally told for years that the reason my feet stopped working and I got dizzy and fatigued was because I had anxiety. Finally one doctor listened and I had a hereditary motor and sensory neuropathy that was diagnosed in a single blood test. It took 30 years just to finally find someone willing to treat me like a person and not a hypochondriac. By the time i was diagnosed I couldn’t even walk anymore and was in constant pain.

I just wanted to tell you I’m sorry that happened to you. Are you ok?

[@kristelfae5054]

That's so so long! My Aunty has this same condition, and I know without treatment she'd be unable to walk. I'm so angry this happened to you. Glad you finally got your diagnosis.

[@AprilHoney]

@ I am. There’s no cure so I’m in a wheelchair but at least the doctors give me pain meds instead of anxiety pills now.

[@AprilHoney]

@@kristelfae5054 Thank you. It’s validating no matter how bad it is to actually know. When I stopped being able to stand or lift my feet it’s good to know there’s a reason that isn’t anxiety. Medical gaslighting is horrible on women

[@lacychambers4947]

I’ve receive a false diagnosis of conversion disorder as well. It ended up being a life threatening thing and I could have died. I’m sorry you went through that as well.

[@RoanLee0408]

I can fully relate to this. I’ve been dealing with chronic pain since junior high but no doctor has ever fully listened or believed me. I finally found a doctor who was willing to treat me for fibromyalgia but has refused to give me an actual diagnosis. I truly hope you and your doctors are able to sort out what is truly going on. I know this pain and I hope at least for you it gets better by a diagnosis and treatment

[@MissLiss1215]

I’m going through this right now with trying to get a mental health diagnosis! It’s so hard when I don’t quite fit the criteria for one specific thing. I know that it won’t magically cure me or anything, but being someone who’s been struggling since young childhood I just want to be able to put a name to the chaos.

[@gailterry3134]

Yes!!! this is me, too! Too many "Well it sounds like this, so let's treat that", but nothing definitive. Depression, anxiety, bipolar 2, ADHD, Complex-PTSD, and Autism Spectrum Disorder. I actually got an official dx for CPTSD...at my testing for ASD. I hope someday both of us can finally get the correct dx.

[@Catlily5]

I have been diagnosed with 15 different mental illnesses (not all at once) and Autism. The problem is that they just don't understand the brain very well. All they have is lists with lots of overlapping symptoms. It is frustrating.

[@SamirCCat]

A lot of us are not the typical case and then it's almost impossible getting the right diagnosis. I'm so tired of hearing "features of" instead of actual diagnoses.
On wednesday I'll get my final result of the ADHD assessment, at 33 years of age after waiting for 1,5 years. I was sucidal a few weeks ago because of this, I hope I will cope if I don't get the diagnosis. I have bipolar type 2, anxiety, self-harm and post-eating disorder struggles. And very likely GAD, but no diagnosis yet. I hate with ADHD that these two people have my entire life in their hands, and if they decide it I will never get to try ADHD medications that COULD revolutionise my life. It's SO scary and definitive! No wonder I want my mom to come with me!

[@faith3070]

My MIL has Fibro & it took her a long time to get diagnosed. I have PCOS & IBS, so it took me years to get diagnosed. It's really hard to find a Dr who will listen to women. I currently have a mysterious sleep problem that I hope gets figured out soon.

[@laura121684]

I have PCOS, IBS and Fibro. It is absolutely a nightmare to find doctors who will listen. Thankfully, I have a pretty great doctor right now, but I have had to go through a lot of awful docs to find a good one.

[@catienoble3191]

Check out Jessica Kelgren-Fozard's recent video about how medicine has always been sexist, I found it very interesting and informative and it kinda fits with your experience

[@stephanieabutler]

YES!!!!!!! It's spot on!!!!

[@kimwilding8444]

That's literally what UA-cam suggested for me next 😆

[@colleenshaw1607]

Man, i hope both of my girl crushes collab... 😍

[@pear7777]

There's a movement in the NL that states exactly this, male and female bodies differ, and lots of medication doesn't work for female bodies the same way as for male bodies, or has strange side effects. Diagnoses can vary.

[@matthewharris-levesque5809]

The system may be sexist as well, but all of this is common experience for anyone, of any gender, so pointing to sexism (or racism or any ism) is counterproductive. The system is just crap. And this is the same in Canada.. and likely in all health care systems. I see it as a problem where only "fully healthy" people make it thru the system into a position of being a diagnostician. And they just cannot understand the experience from a patient's perspective.

[@redrosewolfess8527]

This is super relatable to me - I finally met a primary care doctor recently myself who sat down and was like 'I looked at your file in its entirety' and i just almost cried

[@draiocht0]

I also have fibromyalgia, and every single symptom and feeling you described in this video is one that I relate wholeheartedly to. Even though I have a diagnosis, I'm barely 21 and I wish with every fiber of my being that I could be normal and work full time and complete a college education. I always feel like my mind and body are rotting away. The good days make me feel like I can conquer the world but a bad day makes me want to give up on everything. Thank you for sharing this video, and I hope you find the right diagnosis soon. ❤

[@jenniferharter]

Thank you for posting this video, it's incredibly accurate. I have a weird mix of diagnosed chronic illnesses and then a whole subset of symptoms that we're working to find a proper diagnosis for, but the most frustrating place to be is the "almost diagnosed" space. It's like you don't know how to treat / handle your own body because without a diagnosis you could be doing more harm than good. You lack a sense of identity and security when no one can tell you what's wrong.

[@clairej81]

Currently watching this from my bed its Saturday afternoon and my body has hit its wall. I understand this jo as my journey is ongoing with my next rheumatology on Friday for more tests to be told they don't know yet again. I'm 40 now and I just want to feel normal 😕

[@madaian369]

I felt nearly breathless watching this video, it was like you were speaking my thoughts exactly.
I'll have my first assessment for autism on Monday. I'm 25 and have always felt "off", and I first started suspecting ASD when I was 17. I only let myself really look into taking care of myself with that possibility in mind a year ago, when my psychologist suggested it might be worth looking into. I still don't feel like I'm "allowed" to speak of myself as someone on the spectrum because I don't have a diagnosis, even though all the signs are there. I'm terrified of the thought that the new psych will just go "that's not it" and leave me hanging, or that I'm somehow damaged beyond repair. Like you, I know how bonkers that sounds, but I just can't help the feeling.
But how you spoke of respect regarding self care really resonated with me. I've been trying to tell myself that it's unfair to measure myself against standards that weren't made for people like me in the first place. Looking into ASD has let me understand why I sometimes feel or act in certain ways, it has given me language to describe my experiences and the resources to start taking care of myself, so I can respect my brain and body.
Thank you Jo

[@trishalenon6395]

My mom was diagnosed with fibromyalgia recently and it has helped her learn how to take better care of herself. I hope you find the answers you need Jo ❤️

[@erictaylor5462]

Just because it's all "in your head" it doesn't mean it isn't real.
I'm having the same problems getting a solid diagnosis, and my problem is all in my head. They are called brain tumors.

[@colleenshaw1607]

Good point. Also, hope immunotherapy advances more because of the pandemic so people like you have better therapy options. Fun fact, i used to be an uber driver and had one of the developers for an immunotherapy vaccine that treated an otherwise untreatable aggressive pediatric brain tumor. This was about 3 years ago. I hope they built on it for other brain tumors and make it available for a wider age group

[@AnnikatheAmputee]

I haven't even watched the video yet, but can we talk about how the before ad was FOR PROSTHETICS for Martin Bionics?!?!?

[@ash_rock]

I watched it all the way through because it was so cool to see!!!

[@annalouks]

I got a Priest talking about hell for over 9 minutes. 😬

[@colleenshaw1607]

@@annalouks I'm a premium member so i never thought I'd have ad FOMO

[@russellstare6610]

I saw the MB ad and wondering if insurance would approve that instead of the socket which is waiting for me to test if my stump would heal up.

[@skibunny1000]

It really sucks that you're going through this. As a Physiatry resident who has done quite a lot of Rheumatology as part of my training, I hope maybe I can provide some perspective that's helpful for you. It doesn't sound like your doctor was wrong about the diagnosis of Fibromyalgia, and as you go through the rest of the tests, it wouldn't be wrong for you to continue to live your life the same way that you did last month when you were completely certain that you had it, because you probably do. He's merely being a good doctor, and making sure that he doesn't just stop looking, and let something else that COULD be cured go undetected. For what it's worth, it doesn't sound like he was saying "everything that I see is normal and all your symptoms might be in your head, but let's go back to back to the drawing board", but rather "I still believe that we have the answer, but don't want to just write that label on your chart and walk away until I'm 100% confident that there's nothing else to find." Doesn't change the fact that all the feelings that you've expressed in this video are valid, and that it must be so incredibly frustrating to still not have a concrete conclusion to this long chapter in your life. But I do think you'll have a diagnosis sooner than you think, Jo, and that it will probably be exactly the one that you've been coming to accept for the past month. Sending you all the good vibes!

[@borountree4539]

Exactly. And thank you for saying this. I found Jo's video as frustrating as her search for an answer because it feels like she is too focused on the wrong part of what the doctor said.

[@kristelfae5054]

But it is better for the Dr not to give a likely diagnosis and then not give it... So many in the medical profession keep telling me oh but it doesn't really matter what label we give it as long as we are treating the collection of symptoms... Um no it matters!

[@skibunny1000]

@@kristelfae5054 Absolutely. I agree that labels matter for so many different reasons. It just sounds like in Jo's case, what the doctor was saying to her didn't seem to change all that much between her first and second visit. But it looks like there was a discrepancy in the way the doctor communicated the message, even though his opinion on the diagnosis actually seems about the same both times (highly likely fibromyalgia, but progressively ruling other things out). Doctors are human, and we don't always do perfectly at conveying what we want to say. It just massively sucks that he caused Jo such distress, and I hope that communication issues like this aren't a common theme in his interactions with his patients, because there's no doubt that doctors being poor communicators messes with patient wellbeing.

[@GK-we6gi]

I'm so glad that you're talking about this! Thank you. I've been struggling with not having a diagnosis myself for a while now. I'm 99% certain that I have ADHD (possibly with a few touches of maybe APD, RSD, depression,SAD - all disorders that are fairly common in people with ADHD) and hopefully I will soon have to courage to talk with my mother and my doctor about it but because I know and understand the stigma and doubt around "self-diagnosis" and because I really don't have an official diagnosis it's really hard to talk about my struggles regarding this. It would be so much easier to say that I struggle with ADHD than to list all my symptoms because it's an actual condition and not just laziness/too much screen time/disinterest/etc. It isolates your even more because your struggle is never taken seriously and you have no word for what you're experiencing.
I hope you can soon get a proper diagnosis and all the best ❤️

[@beyedoc]

-autonomic dysfunction/dysautonomia - sympathetic nervous system overdrive essentially. Fibromyalgia is related
-EDS (possibly the overarching genetic issue)
-Mast cell activation disorder
-chronic fatigue syndrome/myalgic encephalopathy
-venous insufficiency
You sound a lot like a lot of the patients I see and a lot like me. I HIGHLY RECOMMEND getting in touch with a doctor I met who has truly changed my life. He will do a complimentary phone consultation, or I'm happy to talk to you about my story and my recent VECTTOR therapy that is controlling and reversing my illnesses.
💜Brandi

[@maddiestanley4647]

Oh Jo, I've commented this a few times but I think I said it on your last video about the presumptive diagnosis - I have fibro and I relate so much to the struggle you've gone through. For me as well it was years of tests coming back normal, nobody finding anything, and just that general feeling of "something is wrong with me but there's nothing wrong with me" which really does feel so awful. I was finally diagnosed nearly six years ago when I happened to be sent to a rheumatologist when we were trying to diagnose what felt like an acute injury at the time (but turned out to be a massive flare). Having that label, that Thing to look up and see yourself in and that shorthand to explain what's going on to doctors--it's all so real and I understand exactly what you're saying. It was such a relief to be diagnosed. Yes, I grieved--I'm still grieving, still mourning the fact that I'm saddled with this uncurable mess for the rest of my life, that I have a body that doesn't function the way it's supposed to, that there's no escape from it--but at the end of the day the diagnosis brought me relief. I'm STILL learning how to be kinder to myself and my body, still learning how to survive from day to day. I get caught up a lot in "am I using this as an excuse?" and I'm trying to get better at practicing acceptance and owning that this is my situation and I need to make that space for myself to heal whenever I need it. It's a really really tough diagnosis to cope with, but I also can't imagine having that diagnosis pulled back like you have. I think at the fundamental level, being essentially diagnosed with a body that isn't working the way others do, is important no matter what. And that's kind of what a fibro diagnosis is, even if it ends up being something else. You still now get to be treated for it, and the thing is that fibro doesn't really HAVE a set treatment plan and it's really about testing different things to improve your quality of life. And that's why even if it's wrong, it still has the potential to get you the help you need. Anyway, I feel your pain (literally, I do!) and know first hand how exhausting it is, so hang in there ❤️

[@chronicallyfabulous88]

Ugh...I relate to all of this so goddamn much. I got my Ehlers-Danlos Syndrome diagnosis at 17yo -- that is, after 17yrs of going from specialist to specialist, desperately seeking answers as to why I was always so sick and in so much pain, and always getting injured.
Since then, I've also been diagnosed with Fibromyalgia, Dysautonomia (presenting mostly as Postural Orthostatic Tachycardia Syndrome and Gastroparesis), Chronic Migraine Syndrome and Food Protein Induced Enterocolitis Syndrome.
I'm so, so sorry for everything you've been through and continue to endure, Jo 💜 I know what it means to have a name for what ails you and to be able to formulate a plan to manage it, going forward.
One thing I really wanted to add is that I'm so glad to hear that your rheumatologist is ruling everything else out, first. More often than not, Fibromyalgia occurs secondary to some other, underlying medical condition. For example, a lot of people are diagnosed with Fibromyalgia, only to learn years later that they also have an Ehlers-Danlos Syndrome (which I also encourage you to look into), or an autoimmune disorder. While Fibromyalgia can and does occur independently, it's much more common for it to occur alongside something else. So ruling out other conditions (especially connective tissue disorders) is really important.
I really, truly hope you get the answers you need and deserve asap, hun 💜
Also, if you do look into EDS, it's important to keep in mind that our bodies stiffen up over time, so if you were hypermobile as a kid/teen, that absolutely still counts, even if you're nowhere near as flexible now. I have severe hEDS (the hypermobility type of EDS) and I'm very stiff and creaky, but my joints still sublux and dislocate, anyway. The body tightens muscles to try and hold everything together.

[@jennifercicconekraemer903]

Hi Jo. I completely understand your frustration because I've been going through the exact same thing for years with a lupus diagnosis. I've been following you for a while and I relate so much to so many of the things you talk about, but this more than everything else is spot on how I feel about this whole ordeal. The only things I can suggest are to not give up getting a firm diagnosis and keep treating yourself like you've already been given that confirmed diagnosis because it will help you feel better.

[@heidibaltom8138]

Litterally last week someone said to me "do you have Fibromyalgia" after i told them everything hurt and everything else. Not a doc just a friend. So as soon as you explained in the begining what was going on thats what i thought. But im so sorry you dont actually have a diagnosis. I know how it feels i had a diagnosis of MS then got that taken away because one thing wasnt right and im still left in limbo

[@jodil1209]

I had the same thing happen. I was so happy to find out what was going on. My doctor said you have MS and had me go to a neurologist that said you don't have enough lesions on your brain. So after a zillion tests they said that I have fibro.

[@heidibaltom8138]

@@jodil1209 I havnt been diagnosed with Fibro but a couple of people said maybe i should go to the docs.
Yes i was happy too which sounds strange but it made me feel like i wasnt making it up. I had a couple of leisons but the lumbar puncture didnt show up anything. Now i have to go back and tell them i think i have Fibro.

[@francescoleman-williams911]

I really feel for you.... (I know the UK has a really different healthcare system but) this is how I was given my fibromyalgia diagnosis “yeah, it’s probably fibromyalgia, there’s nothing we can do... there’s probably a leaflet you can pick up in your way out...”. There was no leaflet I could pick up on my way out and I’d not been given all the exclusion tests I should have had....
So, I don’t quite fit the diagnosis but I live my life as if I kinda have it, looking after myself etc but feeling totally unsupported... this story is too common!

[@laneborden5663]

I’m sorry you didn’t get the concrete diagnosis you had hoped for, hopefully they will treat it that way and you will have some mental and physical relief ! You are amazing, positive, and a beacon of light and positivity in the world. whatever it is, it’s NOT JUST IN YOUR HEAD!

[@cindy7817]

I can so totally relate! My daughter was also NOT well, she spent all but a couple hours a day in bed. Stomach problems, migraines, inflammation to name a few. She was 19 with no answers. Her pediatrician literally refused me when I tried to make another appointment. They referred her on.. Finally we got some answers, and I can't describe the thankfulness we felt. She has SIBO, but another huge part of this is her corn intolerance. The allergy test was negative, no reliable test for intolerance, but she is intolerant. Corn intolerance is something most doctors are unfamiliar with. She also has stomach ulcers. Numerous doctors have told me she is unusual, and I'm so thankful for the 2 specialists that really care and are willing to treat her. Too many of the doctors and nutritionist we have seen had no answers.

[@aponce9306]

It was heartbreaking for me when you said that maybe calling it "devastating" sounds like too much for other people. Because I get that it comes from the fact that people end up treating this kind of situations like that. I just wanted to say that that feeling is totally valid for you and for anyone that has any kind of physical or mental health issue. Stay strong, I absolutely admire how you share this with the world. Hugs.

[@jadeb7367]

I completely understand your feelings about wanting a diagnosis. I was diagnosed with fibromyalgia last year and pots a couple of weeks ago. The sheer relief of having a name for what is wrong is so strong. I'm sorry you don't have your answers yet, but you will get there! Thank you for talking about these things and helping us all to understand we are not alone!

[@Vocalinds]

Your comments at around 7:00 about "it should work, nothing's wrong" really resonate with me from a mental health perspective as well. I have taken that attitude toward myself for years about various challenges I have, and have only very recently realized that no, something legitimately is wrong, and it's NOT just some moral failing on my part. ❤️

[@bparker111665]

Stay strong. It can be very, very frustrating, but you have to keep fighting because somewhere out there is an answer. I went through something similar in 2010 with a clotting issue that cost me my right leg. Prayers for an answer and peace of mind.

[@jeanieolahful]

I dealt with chronic hives from age 25-40. It was incredibly frustrating, annoying, and itchy, painful and uncomfortable. I finally found out, on my own, that I was sensitive to aspartame. I was able to confirm that others were having the same issue. I cut it out, and the break outs went away. I still continue to be grateful that I was able to find out the cause of my problem after 22 years. Others with the same issue don’t have the same cause. I am extremely lucky I got my answer.

[@megancooper6130]

I immediately thought fibromyalgia when you were describing your symptoms. I am in school to be a nurse practitioner in family medicine. Thank you for all your transparency! You are educating future healthcare providers. I pray you attain your definition of health, lovely Jo.

[@madisonbaldwin1551]

You really summed the range feelings that come with chronic illnesses and trying to find answers. You're not alone in any of those feelings. There wasn't a single thing you talked about that I haven't personally experienced as well. It's so hard trying to find the answers and in the mean time living without them. Even after getting a lot of my diagnosis' I have days where I think I should be able to do what normal people do because hearing "there's nothing wrong on the scans" and "all the tests came back normal" time and time again breads internalized ablism. You're so strong and this amazing community that you've built will be here even on the days you feel a little less strong!

[@allykiger9550]

I completely feel this. I have multiple conditions and it was a long process!! Doctors telling me all kinds of crazy things. The diagnosis has helped me soooo much. Hope things keep moving forward. Also just for others, they aren’t your doctor, and you can just tell them you have fibro as a shortening of “they think I have it and are treating me for it but a lot of my symptoms match etc”. Then as you get to know people more you can give the deeper explanation

[@kimberlyn8678]

Finally someone I can relate to. I've been having ankle problems to the point where I can't walk without a cane. Ive been to 5 or 6 different doctors and they're just like "its just swelling around your ankle, just sit and rest it"...but here's the kicker, resting has made it worse and it just makes me feel like "is this all in my head?". I'm sorry you haven't gotten the answer you were looking for. Prayers you'll find an answer soon.

[@rachellea.3728]

CRPS?

[@emory5957]

I'm so sorry to hear this. You aren't alone. I am going through something similar with searching for a diagnosis/diagnoses for all kinds of chronic symptoms. Like, I got excited when a neurologist said I might have epilepsy just because it was an answer! There isn't much that's as discouraging as thinking you have an answer and then being told that no, that's not actually it.

[@TheMsRavenBlack]

Hey Jo

[@charlottesinclair9354]

This is so relatable. After a few years of chronic pain I thought I had a diagnosis that could be solved w a minor surgery. It was weird but I was kind of happy, I could have one minor surgery and be done w the pain. Then the final test to confirm it came back clear, and so that specialist couldn't do any more. I have finally got a diagnosis of chronic post traumatic pain/peripheral nerve sensitisation, and finally knowing that there is nothing physically wrong causing my pain has honestly helped. All these years I have been going from one specialist to another finding out if it was a bone problem, structural, muscular, and so now knowing that even if exercise causes me pain, it isn't causing further damage is really helpful. I really hope even this not quite diagnosis can help you on your journey of piecing all your symptoms together

[@shayelea]

“If you can’t connect the issues, think connective tissues.”
I too received a Dx of fibromyalgia with an asterisk, because one thing just didn’t seem right - my doc said that fibro causes pain because of an overreaction to stimuli - essentially, the body overreacting to pain. I, on the other hand, strongly felt that I have a high tolerance for pain, simply because I’ve lived with it for so long.
Turns out I don’t have fibro, I have hypermobile Ehlers-Danlos Syndrome and POTS. POTS can make you feel like absolute garbage for no reason. EDS can cause chronic pain, headaches, slow healing from surgery or injury, and difficulty recovering from illness. Combined they can cause just about anything, seemingly at random with no easily identified origin.
I know other people have mentioned this already, but it’s almost impossible to get a doctor to come up with this option on their own. It’s obvious from some of your other videos that you’re hypermobile. And I think you mentioned previously that you’d had Chiari? Also really common with EDS. And if you can do low-impact exercise that totally helps with EDS and POTS.
The experiences and feelings you’ve detailed are so so so so familiar. It can be a hard Dx to pursue but for me everything fell into place.

[@lifewithkirsten7670]

I have eds gastroparesis and pots. Took forever to get diagnoses. Went 7 years trying to figure out what was wrong. I'm now 19 turning 20 and getting married next month. I'm lucky I got all of my diagnoses before 30 to 40 years of age but it still shouldn't have taken 7 years to diagnose. Doctors need to be taught more about rare illnesses. I personally have two confirmed types of eds and another we are still testing for.

[@shayelea]

@@lifewithkirsten7670 I was 38 before I got my Dx. Definitely should have happened sooner. Congrats on getting married!
Doctors are trained to focus on common problems, but when those don’t pan out, it’s a huge issue that most just give up instead of trying to find something less common that fits. Personally I don’t think EDS is actually all that rare, it’s just hard to diagnose because it affects every body system, when specialists are only trained to look at a single system.

[@lifewithkirsten7670]

@@shayelea heds is more common than they think. Its the other 12 to 13 types that are not common. The two confirmed for me are heds and arthrochalasia. The one we are currently looking into is periodontal eds which severely affects your teeth. My teeth are REALLY bad and with my gp and throwing up from it it just makes it worse. But I can't get any teeth removed because my connective tissues are so bad the risk of breaking my jaw is too high. So even tho I have a few teeth decayed into the gum line they don't want to remove them unless absolutely necessary

[@shayelea]

@@lifewithkirsten7670 yes agreed, HEDS being the one I suspect is common.

[@angelazaino5831]

I completely relate to this. Chronic pain is so frustrating and wanting to have a label resonates with me so much. I'm sorry you're going through this, I hope you get a diagnosis soon and the doctor keeps looking.

[@JuMixBoox]

I get you. Having a diagnosis, especially after spending your whole life as someone knowing they are different and something is wrong with them, but never being able to put a finger on it, is worth so much. For knowing your treatment, understanding your symptoms and yourself, finding a community, having a word to tell others even when they can't understand or even just know for yourself to validate your feelings, is so important. I have once sought out a diagnosis and remember how frustrated I was when, after all the struggle to get there, they just told me "You have tendencies of that." And that was it. I did get that diagnosis eventually and working on getting another one currently. I will definitely celebrate should I get it. Or another diagnosis better fit. Having identities and descriptors is important, and words and labels make that so much easier.

[@Judymontel]

I understand your crushing more-than-frustration. I hope you will think of this as a two word diagnosis as opposed to a one word diagnosis - presumed fibromyalgia is a diagnosis and should be treated the same as fibromyalgia. I'm glad your doctor isn't happy to latch on to a diagnosis for the sake of having one and will continue to look into other issues, whether they are complicating factors or clues to something else or, more likely, something further going on. You're a real hero! Hang in there! Your perseverance got you to this doctor, it got you thus far, despite way too many reasons to give up. Sending you hugs and strength!

[@meredithnavin1358]

I was diagnosed as an adult with ADHD and I relate to literally everything you just said.

[@imogenoliver]

I totally understand the needing a name for something feeling. I didn't realise how much I just needed to be told that I have something I always thought I had since I found out about it. I thought I had it but got confused with what my parents and psychologist thought. Having a name even though I'm only self diagnosed makes moat things so much clearer. I'm sorry the diagnosis isn't quite right yet but i hope so much that it can be diagnosed or a different diagnosis can be the right one. Love you 🥰.

[@sarahtries7357]

I had to pause around the 5-6 minute mark to let the idea that someone else out there *gets it* wash over me. Thank you so much for putting this out there and speaking from that place of intense frustration and the reality of living in a nonsensical body. Its absolutely maddening.

[@ColleenKellyWardle]

I am so sorry that you don't have answers. I know how validating *finally* having an answer is. It took me almost 3 years to get my Psoriatic Arthritis diagnosis. Along the way I was told that fibromyalgia was a diagnosis of exclusion, so since I had a diagnosis already, I wasn't also given that one. This is despite one of the medications for fibromyalgia working extremely well for me (he greatly helps the hit by a truck feeling for me). With answers and a diagnosis, it means a way forward and stopping the slef doubt (I had many of the same thoughts as you, it is in my head, I'm okay, I'm lazy). Hugs to you.

[@cookiemallet]

as someone who had searched for 8 years for a diagnosis for a health issue that literally put my life on hold, i really felt this video

[@curiousfirely]

*many hugs* Jo. The diagnosis journey and not knowing absolutely sucks. Thank you for sharing your frustration and positivity.

[@mandinixx]

I have fibromyalgia and hypothyroidism but all my life I've felt like I had something more and I finally may have figured it out, it's a rare disease and I am working now on getting a diagnosis. My doctor thankfully is supportive.

[@janedough1485]

Thank you for voicing what so many of us go thru including yourself

[@sarablackwolfdancer9359]

I should also add I feel you 100%. I'm usually shocked when anything at all shows up on a test. But then usually it's translated into something like "well it's mild so.... Yeah I get you.

[@alyssamccoy89]

Thank you for sharing. I’ve ridden the undiagnosed train myself and I know it’s frustrating and challenging. Wishing you the best of luck as you continue to look for answers. My fibromyalgia diagnosis didn’t cover all of the weird mystery symptoms but it did give me some tools to manage life a little more strategically.

[@svizerana]

I can relate so much. My husband as struggled with mental health for years, but I could never really talk about it, because, it wasn't "official". Then he had a burn out. It wasn't great, but finally I had a word that people could understand. And by talking about it, a friend put the idea out, that he could have ADHD. He hasn't been officially diagnosed with it, but we are very sure it is the case. And suddenly, I can connect with other people dealing with this. Have explanations for things that drove me crazy. I know now, it's not all in my head. Sometimes, labels really make a difference!
I hope you get better soon!

[@happydog4929]

Jo I luv you and I don't mean to be bad, but you have comedic timing.
Thanks for the video and I don't know how but I'm here with you.
lots of luv.

[@nataliez.7506]

Jo, I am dealing with the same thing right now. My heart deeply goes out to you. I too suffer with chronic pain that repeatedly gets brushed off as "woman problems", hysteria, anxiety, stress, etc. I believe your pain and hope you find the answers you are looking for. Big hugs.

[@moony5814]

Your pain is valid Jo! I hope you find a word for how your feeling. ♥️

[@lisatowan4536]

I'll be praying that you can get an official diagnosis. I could relate 110% to this video. I've been there a few times. Doctors and people told me I was crazy, but I knew I was sick. Each time, I was told I was fine and further made to feel like I was crazy. It took them years to figure out that I had major issues going on each time.

[@gloriagilbert9403]

Ive been through this whole process, for a few years now because I wanted to make sure I got actually checked. At first some doctors told me terrible things about what causes fibro and dismissed my symptoms as probably just fibromyalgia.
The discrimination with fibro is so horrible , I finally saw a very nice rhumetologist who knows fibro is a neurological condition and knows it’s very real. Which is awesome with all the shit I’ve gotten from doctors over possibly having it.
There’s also a lack of understanding of the more complex symptoms and how to help the symptoms but I’m glad that you looked into it yourself. Self compassion and care is key to dealing with a chronic illness regardless of whether you have a diagnosis. I honestly used fibro online tips and tricks when I was undiagnosed because they’re really basic things you can do for yourself.

[@cyndikovacs8651]

Ugh! I know that must suck for you, Jo. Keep up your positive attitude. It will do wonders for you! I really hope that your doctor can give you the answers you deserve (and need)! I look forward to your next video!

[@hannahstorey1878]

I have hEDS and this all sounds like my history. Definitely would bring up EDS, I also have Chiari type 1 and a lot of times those two are connected. It took about 21 doctors as a young healthy looking/ in shape person before someone finally believed me it wasn't in my head and the pain is so real. I am sorry you are going through this. As a three time cancer survivor, CRPS, hEDS, and chirari fighter I am always here to chat!!

[@socksandpi1264]

I'm sorry you're dealing with this, it's incredibly frustrating.
I finally got a diagnosis after years of doctors accusing me of faking, or being brushed aside, even when it happened in front of them! The doctor who diagnosed me did so after just looking at me (she obviously did test a few things to figure out the specific type, and came back with three types). I cried in relief when she told me, because I finally knew what was wrong, why I was experiencing what was happening, I finally had treatment options.

[@SilverBunnyStudios]

I feel your pain. I went through the same thing, hundreds of doctors trying to figure out what was wrong with me and saying I was fine. Finally found out it was a tumor. I think needing a diagnosis is the difference between having a doctor treat a symptom, rather than the disease itself. You want the disease treated, not just a symptom! :( And also it allows you to tell people a concrete diagnosis, not just telling people yes I have a lot of pain. :(

[@strawberryheart372]

I'm struggling with the same thoughts as you, it's good to know I'm not alone 😊. I'm so sorry that you have to go through that, and I hope your situation improve as soon as possible ❤️

[@tonylucero5838]

Your journey has common experiences of many of us fellow amputees. We can always find inspiration and knowledge by sharing the good and bad. Keep your focus and take pride that your videos help us keep fighting.

[@corriemcclain7960]

ouch. relating so hard to this right now with trying to get an autism diagnoses. I know they're very different problems, but at least for me it's the same struggle of trying to explain and get someone to understand and take you seriously, the beating yourself up because it should work and no one understand why you can't do stuff. And then you think you have an answer and you start trying to stuff that supposed to help and it does... but none of it is official yet and it is just so frustrating.

[@TheMsOBSI]

I totally understand what you are saying about having a diagnosis. Having a name for it means you can get on with life. Even if it is something that can’t be treated or is hard to treat it at least lets you plan accordingly.

[@matthewharris-levesque5809]

Praise to you for putting into words these experiences.
This is so well presented - and will be of immense benefit to me when trying to explain my experiences to family - who are nominally aware of my experience, but not able to understand the depth of it.

[@BrandonWestfall]

Holy hell is this relatable.
I diagnosed myself with Kallmann Syndrome around 10 years ago. Essentially I cannot produce hormones, have anosmia (no sense of smell), and have issues regulating temperature.
I wasn't formally diagnosed until I went on The Doctors TV show two years later. It was such a relief just putting a name to the condition even if I had to wait another 4 years before I started treatment.
With that said, I deal with severe muscle spasms/cramps daily and still don't have an answer to what causes them. Most doctors are too interested in my other health issues to actually diagnose the issue. I also deal with pretty frequent migraines so I can relate on that level as well.
Hopefully you'll have some answers soon.

[@jennyk5811]

Sending big hugs from one chronically ill person to another! 💙

[@Savvy_lurker_14]

I grew up with one of my moms having fibromyalgia. So when I watched the video of you describing everything that was also my thought. It is so frustrating to have so much hope and then be so incredibly let down. I was diagnosed with hashimotos hypothyroidism when I was younger. I am tired all the bloody time. Doctors don’t wanna test me for everything it could be because they just assume it is my thyroid. I understand how frustrating this is. We are chronic pain and illness warriors. Love you Jo.

[@ande1592]

I relate to everything you’re describing so much. I feel the same unease of never truly feeling physically well but not knowing why. I do have a handful of different diagnoses, but no real explanation to a lot of other symptoms. Even for the more rare disease I have, it’s labeled as idiopathic. I have tons of medical tests backing up that there is something wrong, but often I’m told they don’t know why the things are happening. For the things that aren’t super serious they’re just kind of shrugged off. It would be nice to have a concrete explanation for things, but at this point it feels like it’s never going to happen. I hope you can get the answers you’re seeking soon because I know what it feels like to always be searching.

[@billssmithy7352]

My bride is 70, was finally diagnosed with fibromyalhia and chronic fatigue 20 years ago after decades of vague and confusing diagnosies. You now know what you can do to make you better.

[@Rheartsliterature17]

This is such a relatable experience and actually something I think that can happen with diagnosis too--you're not alone in that! When I first got diagnosed with my arthritis condition, at first it was an amazing experience of better understanding, but I felt like I went through a whole process of accepting and learning to live with it. It's kind of like the stages of grief, there can be different levels of acceptance and mental processing to go through that can affect how you feel about the diagnosis, especially related to that feeling of needing to "just be normal person." Even after 5 years of managing a diagnosis, I still have days where I beat myself for not being active enough, for not doing everything "right" to prevent the pain, or even not for just handling it better. Part of managing chronic pain is mental and sometimes it's just rough. Sending out all the good vibes as you work through that--and no you really aren't alone in that feeling.

[@nicokelly6453]

I totally relate to these feelings, thanks for sharing. It's nice to know we're not alone.

[@AliAngelpie]

I'm sorry you've had a difficult time, but you are so worthy of recovery. You can get through this, you will get the help you need. You can do this, I believe in you

[@vizuallyblurredjewelsbaby2897]

I really relate to all you’ve said. Praying you get the relief and answers you need.

[@mikeandtaraoliver3709]

I agree with you about us feeling the need for a actual diagnosis. Doctors are high qualified and committed to helping their patients but they are not all seeing, all knowing and cannot be expected to diagnose disorders they cannot 100% prove. Perhaps we need to accept that if a diagnosis is not possible then as owners of the body we should rely on ourselves to do what feels right for our body. And move on.

[@annikala]

I understand this devastation. I wish I didn’t, but I do. The self doubt is crippling. Sending you so much love. And thanks for sharing all of this - it’s so amazing to have someone to relate to

[@Super-dupers]

I very much relate to this and it took me years to get my hEDS & POTS diagnoses' and finally have a name for what's been a cause of shame for years. It isn't my fault and that helps.

[@demiwees6622]

I'm so sorry that this wasn't the right diagnose. this is really relatable to me. I have been looking for a diagnosis myself for 8 years. Your video reveals exactly what makes it difficult not to have a diagnosis. Thank you

[@Zalmorpho]

Just like everyone else, I’m going to share. 2 years ago my body failed me hard core because of the stress of my mother passing away. After many, many doctor appointments & tests & biopsies they finally told me I have mixed connective tissue disease which, as it sounds, is a mix of usually 3 diff connective tissue diseases (Lupus, Ehlers Danlos & RA in my case). A lot of the same symptoms that you talk about I’ve experienced. I know it’s very often first & wrongly diagnosed as Fibromyalgia. It took up until about 3 months ago to get my diagnosis & after a lot of my own research I’ve had so many “aha!” moments when I think back over the years of weird stuff I’ve experienced. Oddly enough the sinus infections stopped a handful of years ago. Actually all sickness stopped. No colds, no flu, no “bugs”. I still haven’t figured that out. Now I just generally always feel kinda crappy. Sorry, this is getting away from me. Talk to your doc about the different connective tissue disorders but I really hope you get the definitive answers you need. Good luck to you. Big hug! (If you got this far....Sorry about the book)

[@samanthar4877]

It’s so frustrating to deal with Fibro. It’s a diagnosis of exclusion which really means it’s not diagnosed. It’s just we had no other answers. Have fibro amount other not yet diagnosed issues and I totally feel you on this! So many chronic pain people just live in this limbo of never knowing what’s wrong or really how to help yourself.

[@kathleenc.314]

Nearly everything you've expressed has been my experience as well. I've been sick for most of my life with little answers along the way (some confirmed diagnoses of anxiety, endometriosis, adenomyosis, depression, etc., after years and years, but still suffering with other stuff that is a mystery). I commented on your last video about being diagnosed with lyme disease, and as of a month or so later I've found that I was misdiagnosed. And now it might be fibromyalgia, but it's also not entirely confirmed at the moment (mostly because I'm waiting on being able to actually see my doctors again bc their schedules are so SLAMMED). That said, I also have found it so, so challenging to allow myself guilt-free space and time to recover when I'm deteriorating without an actual diagnosis. Thank you for talking about this!

[@maylee-jarvis7771]

Jo, ever since I first saw your videos I thought you were amazing and that has never changed. Here you are coping with all kinds of symptoms, in a PANDEMIC, and you go on making videos and caring about the world and other people. You're strong and courageous and kind, not to mention smart and wise and funny. I just wanted to send you love and encouragement.

[@crystalgolden9492]

I am so sorry you are going through this, and I know the frustration of not knowing whats wrong with you. I have been in chronic pain for 15 years, and its really freaking hard. I haven't even been able to start down the path of finding out what going on because of the US health system. I hope you get a final diagnosis because it really does help give you a sense of understanding and reason. Its sound like you found a good doctor and I hope you can figure out what it going on.

[@moisesbetech8383]

What you said in the last 3 minutes of your video makes a lot, lot of sense.
Acknowledge yourself Jo, even though there's no classification for your symptoms in this moment.
You should give you a hi-five for all the resilience you've got through all this time!
Send you a hug , internet friend.

[@crystalalpaca9859]

I was diagnosed with Fibromyalgia last year and I completely understand where you are coming from. It is amazing to have a medical professional tell you arent crazy ,there is something genuinely wrong. I felt relieved more than anything

[@kirstenornelas881]

Girl I'm so very sorry you're going through this. I feel your pain on a very real level. The doctors and specialists cannot for the life of them agree on adx for me and I'm sick, exhausted and tired of being in constant pain and constant sick. I also react, hives and water blisters on my skin after eating specific foods. I too have pain in my bones and joints but keep running into we think then but it can't be so frustrating

[@JackBrady]

I’m so sorry Jo that you’re having to go through this :(. I know it’s not the same but I had a really happy few days in between my first psychiatrist appointment and my second, when I thought I finally had a reason and validation for my struggles. With a diagnosis I felt like I had a chance to respect and like myself, only for that to be taken away a short time later when he said actually that wasn’t correct. It’s just crushing. I really hope the very best for you and the treatments for what is likely to be the fibromyalgia and that you can find that clarity and sureness again soon ❤️

[@gymnastic_queen6711]

I completely understand where youre coming from and im so sorry that you still don't have a diagnosis. I know how terrible it is to know that something is wrong but have countless doctors tell you that you're fine. Definitely stick with that rhumetologist, he seems willing to explore more diagnoses. And please keep taking care of yourself, however, that looks for you. Love you lots 💜

[@Lauchis]

For what it's worth, your description of pain (minus the migraines) sounds exactly like my friend describes hers, and she has fibromyalgia. I hope you can get your peace of mind with a diagnosis or whatever's closest to that ♥