My Weird / Undiagnosed Symptoms! | Chronic illness
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- Опубліковано 2 кві 2020
- My Weird / Undiagnosed Symptoms! | Chronic illness
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I have Ehlers Danlos Syndrome / Hypermobility Spectrum Disorder, autonomic dysfunction- including Postural Orthostatic Tachycardia Syndrome and myalgic encephalomyelitis.
I'm a full time university student
I'm also a wheelchair and catheter user
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I don’t get the dry mouth thing anymore & haven’t done in months :)
I'm happy for you! Did you ever find out what was causing it?
Thank you for making your videos, I most likely have EDS I'm not diagnosed yet. Trying to find a dr that will listen and can actually help is quite a journey sadly. Your videos have helped me realise I'm not alone and realise some of the weird symptoms I never heard anybody talk about and I would never think to relate them my joints could actually be EDS. I'm thinking about maybe starting a channel to record my journey to a diagnoses (& more probably) would you recommend it? :)
@@LovexKillsxYou thanks! Nope, it just stopped! I understand, it took me 6 years to get a diagnosis myself, hence the name of my channel- Georgina’s Journey! I hope you can get some answers soon 😊 Yeah, if you want to do it, you should give it a go :)
@@GeorginasJourney Thank you so much for your answer and your time, keep doing what you do, you rock girl!
@@LovexKillsxYou It took me around 4 years to get a diagnosis they said I have hyper mobility syndrome but if I get another symptom it would be EDS. I have a few symptoms but not enough for it to be EDS. I had to tell my GP I had muscle problems and they did the beighton scale on me so I got referred to rheumatology. I also have many other issues with me that they are searching for currently. How are you doing now?
@@ppytook Thank you for your reply! Happy to hear you are getting along in your search. I have finally found a GP that listens to me and actually wants to help. She gave me a refferal for genetic testing but it all depends on if the genetic team feels I'm worth their time. I have been rejected by them last year, trying again now. Trying to be hopefull but it's just hard to get shut down so often while you know something isn't right. I have been struggeling with my body & trying to find a diagnose since 2010, actively sinds 2012 as I ended up on crutches the docters couldn't ignore me anymore. Hopefully I have more luck in 2021. Goodluck on your search & take care of yourself!
Love this video! I have EDS, Gastroparesis, MCAS etc. and can definitely relate to some of those!
The hiccup wretches oh my goodness yes - definitely seems to be gastroparesis or acid reflux related for me.
The dry mouth too! I think this might be to do with autonomic dysfunction and adrenaline release.
As for the eating so frequently I also have this and know a few others with EDS who do also. I think I read somewhere that there are theories about having a damaged vagus nerve meaning that signals regarding feeling full and needing food etc can be impaired and malfunction. Something to do with neurotransmitters too and the brain stomach connection. Something along those lines anyway, I'm no scientist haha.
(P.s. we have the same name!)
Georgie Windsor hi Georgie (great name!) All of that was so helpful, thank you! I’m sorry you’re going through a lot of this too, but I feel slightly better knowing I’m not the only one dealing with so many strange symptoms haha
@@GeorginasJourney Having our conditions can be quite the journey of discovery and I definitely struggle with some other strange ones outside of the ones you mentioned too so you're not alone in that at all. But gosh can't it be confusing. This was such a creative video idea though and I really enjoyed it, along with all of your other 😊 You really are a ray of sunshine for us fellow zebras!
Georgie Windsor thank you so much! This video & the last one were actually my viewers’ ideas! :)
I love this video. Living with a chronic illness is definitely not easy. Stay strong! You are beautiful!!❤️❤️
Grace' M thank you so much Grace! I just subscribed to your channel by the way! Excited to catch up on your videos!
Georgina's Journey Thank you so much!❤️
Periodically I get crazy symptoms as well. Then they either go away or I simply stop noticing them. I suspect it's the latter. I think this is the result of a sensitized nervous system. The "symptoms" may actually never remit. It may be that the nervous system calms enough to not be aware of them.
That’s interesting! I haven’t had many symptoms disappear, just the dry mouth one
I've had some symptoms go over the decades like constant blurred vision for one then something else comes over
Proprioception is what having awareness of body parts is called! Just in case it’ll help you google it :)
Ella Hushka thanks! I learnt that word a long time ago and completely forgot it somehow!
Many thanks, I have been researching "chronic fatigue syndrome medication" for a while now, and I think this has helped. Ever heard of - Diyadelyn Ziyily Idea - (should be on google have a look )?
It is a good one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the headache. Ive heard some great things about it and my m8 got amazing success with it.
Stefany Sanchez my Instagram account is ‘Georginas_journey’ - send me the information you’re talking about as I’d love to look into it more :)
Listening to all these people share their experiences about their chronic illnesses has made me realize that suffer many symptoms that are abnormal in healthy people. I'm in the process of finding a PCP so I can finally figured this out and am grateful for every shared experience so I can find the vocabulary and baseline for my experiences.
Aliece Fatin I hope you get some answers! Although a lot of the things written here & my own experiences aren’t necessarily major things that will lead to a diagnosis, which is why this video is called undiagnosed symptoms, as a lot of them are more like annoyances rather than indicating something bigger. I do have a video for undiagnosed people which you might find helpful though, it was fairly recent if you look on my channel (maybe 3-4 videos ago) :)
Hi Georgina! Thanks so much for sharing your journey. I am undiagnosed currently, yet I firmly believe I have been suffering from hEDS for all 38 years of my life in part thanks to you and a few other EDS patients who first brought this syndrome to my attention. It was like someone stuck a mirror in my tvs place when I first came across a video explaining what EDS was. I wanted to suggest to you that while you are waiting for a doctor to review these new symptoms with you that you purchase some night time braces for your wrists and give wearing them while you sleep a tryout to see if that doesn’t help to ward off the peripheral neuropathy symptoms you are experiencing in your hands/fingers/thumbs. There is a good chance that while you are sleeping you are likely curling your hands and wrists up awkwardly and possibly even laying on top of them putting your weight on your then awkwardly positioned joints. This can lead to pinching your delicate nerves leading to damage you were not even aware you were inflicting on yourself. I’ve been through this myself so my condolences! You’re certainly correct that when it’s nerve pain you will “just know”. Hopefully with even a few days of trying this tip out while you sleep each night it will begin to deliver you some rather immediate relief for you. Best wishes to you! 🫶🏻
I have totally different weird and undiagnosed symptoms but it’s still comforting to hear that others deal with this type of frustration as well and that I al not alone. I wish there was more western medicine and beyond could do for us.
I know they don’t advise it, but if doctors can’t find what’s wrong, I find myself just trying to research it myself, even just to find out what it is/what’s causing it. I hope you can get answers one day!
I have EDS, Pots and undiagnosed gastrointestinal issues. And I also have to eat very frequently, but it's not as bad as you, I'm getting really dizzy and I'm dissociating, I've always attached it to my Pots.
Spoonie Timelordy that sounds horrible, I’m sorry you’re dealing with that! Oh that’s interesting, what made you think it was POTS related? For me, I know that food makes it better & the dizziness isn’t associated with tachycardia or my posture in these instances so it definitely isn’t POTS related for me!
@@GeorginasJourney I've associated it with pots because it's the same symptoms and when eating salt it get better, but you're right it's not really posture related either soooooo yeah, I associated it with pots by default but it might not be the cause.
Spoonie Timelordy that makes sense! :) Sounds like yours could be POTS related then!
I have POTS and, most likely, chronic fatigue as well and also get extreme dry mouth and chapped lips, many times lasting for months at a time and then it just fades. I think it's connected to digestion
Mariam Al-Enezi it could be for you, a lot of the time people present with similar symptoms but with different causes! Mine definitely seems to be a form of autonomic dysfunction (which I am already diagnosed with & have a severe form of) or autonomic neuropathy
I have POTS, hEDS, and migraines. Definitely agree with the dry mouth. Something weird I experience is what I think is precordial catch syndrome. Not diagnosed but symptoms seem to fit exactly. Out of nowhere I'll get excruciating chest pain on the right, almost like someone is stabbing a knife into my chest. The pain won't go away unless I try to breathe deeply, which hurts so much more! Then eventually there's like a popping and suddenly the pain goes away and I can finally catch my breath. I've had an echo and heart monitor testing so I know nothing internally is going wrong. Just the most painful/weird thing ever. Also feels differently to dislocating a rib.
I also can have my legs and hands fall asleep super easily. Like if I sit in an L shape, my legs fall asleep instantly. My pinky fingers and ring fingers also fall asleep at odd times too. I'll be asleep and wake up with pins and needles! So strange.
Elise Wynn oh gosh that sounds so horrible! I just looked up the condition & you’re right that it sounds exactly like it! I wonder if pain meds that they usually prescribe for costochondritis would be helpful since it’s for chest pain as well. I’m so surprised by how many people have been saying they get the dry mouth thing- really seems like it’s a dysautonomia or EDS thing from how many of us have it!
Have you checked digestive issues for the pain and breathing? Bc I've had issues where I feel like I'm choking or can't breathe but it turns out to be gas and if I burp, it gets better. My dad has also had really bad stomach issues and felt like he was having a heart attack, but it was his stomach
I have so many weird undiagnosed things that I forget it’s not normal! Eating sugar gives me a fever, I get random nystagmus (uncontrollable eye movement), when I first wake up I can’t contract my muscles like making a fist, and other random things. I really don’t understand the human body! 😂
Fiona M completely relate to this! I forget that stuff isn’t normal all the time too!! I feel like I understand the human body pretty well...just not my body 😂😂
Small fiber neuropathy can occur in both the autonomic nerves causes many forms of POTS and autonomic disfunction as well as sensory neurons. That is a possible explanation for your nerve pain tends to start in the hands and feet. But I would definitely ask your doctor about it.
Thank you for this! I'll ask when I'm next able to :)
Dysautonomia can cause all the nerve issues. I have the same problem where I have to eat constantly too.
Sophie Amarant that was my initial thoughts about it!
Hi Georgina 👋
Thanks for sharing. Hope you find some answers to these weird symptoms.
Return2Basics24 thank you so much!
Not a doctor and don't know what you have,but I understand nerve pain very well. Your doctor can give you a block, a needle, to stop the nerve pain. It can last for months and is simple,literally just a shot that blocks the nerves in that area from over acting.
And add b vitamins to your diet,long term it helps dull nerve pain
@@NervesofNoodles thank you for this! I’m going to ask about it!
I have epilepsy, pots and in the process of getting diagnosed with hEDS. Myoclonus jerks are a type of epileptic seizure, they aren’t always non-epileptic. Just thought I’d make you aware :)
Daisy Kelly thanks. I know myoclonic jerks can be epileptic, but hypnic jerks or myoclonic jerks that happen only while falling asleep (which is what I was talking about) are non-epileptic in 99% of cases- with the phrase ‘while falling asleep’ being significant here & in what I was talking about in the video. In these instances it would actually more commonly be classed as non-epileptic phenomena (or common physiological phenomena) and not a seizure. I researched this heavily beforehand and double checked with a family friend who is a doctor so as to give the right information- sorry for the misunderstanding if I didn’t stress the part about falling asleep enough. Myoclonic jerks in general though, can of course be a form of an epileptic seizure
Georgina's Journey don’t apologise, I didn’t know whether you knew so just thought I’d let you know, I hope you can find out what all these are!
Daisy Kelly thank you! In hindsight, I should have made it more clear what I meant & I appreciate you telling me as I would want to be told if there was something I didn’t know or had got wrong!
I have POTS as well, and I have those kinds of nerve pains in my feet. It really sucks, but I've started using a TENS unit since I can't take pain relievers. It is doing wonders for migraines, nerve pain, and even cramps. I hope you're doing well and best wishes!:)
Faith H I’m so happy to hear you’ve found something that helps! :)
Hope you see this, since I’ve just found you...I have dysautonomia anyhow...but
I get the weird hand nerve pain and burning, I have it in my hands but mostly in my feet.
I drop everything with my right hand.
EXCESSIVE DRY mouth!!! You panic when you can’t swallow.
Trouble swallowing, I choke a LOT!
Finger tremors
Bad eye days! Some days I have great vision days, but sometimes I can’t see to drive.
Sometimes my legs disappear...yep if I’m sitting and get up I feel coldness in my legs and then they go GONE! I feel like I will drop.
I can’t look straight up, or I will drop...
Possibly look into FND, most of that can’t be explained by dysautonomia
Originally, I also had to eat every few hours or I'd go into presyncopy as well. When I was 1st diagnosed, they did a b4 & after food test and diagnosed me w/hyperinsulin, but haven't repeated the same test and haven't picked anything up through normal blood sugar tests. I still feel weird if I have too much sugar; if you haven't already, try cutting it out if your diet, as well as a lot of processed foods. I also have had weird and mixed diagnosed/undiagnosed stomach issues, so these help curb those as well and help me deal w/my POTS more
Mariam Al-Enezi thats really interesting, thank you! I’ll look into it more & am already trying to cut down on processed foods, but haven’t cut sugary pr processed foods out entirely yet!
Those myoclonic jerks are more likely from not sleeping well. I used to get them a lot before I was diagnosed with sleep apnea and got my CPAP machine. I know sleep apnea is a lot more likely in connective tissue disorders.
I definitely don't find presyncope worse that actually passing out! When I pass out badly, I wake up and can't see, feel, etc. When I am first coming to I feel my body shaking. For a long time they said all these weird things were seizures until they found out it was actually from POTS/connective tissue disorders. I always wondered if other people ever pass out like this🤔. Sometimes I just pass out then wake up without all these weird things. Luckily, my medicine is keeping me to only blacking out now. It's so much better. Took years though. I went from walking only 15-20ft to walking miles. Definitely possible to make improvements! Just keep advocating! You're doing great dealing with all your medical issues.
That's interesting, I hadn't thought of that before, so thanks for letting me know!
Most people's bodies will be completely 'off' when they wake up after fainting, to the extent that many end up vomiting, so although really horrible for you, that sounds like a pretty normal response. I'm always dizzy and shaky afterwards too and my vision and balance is affected, but the pre-syncope is always SO much worse than all of that for me. I'm glad you're doing better these days! My fainting is also controlled by medication now which has made a big difference- like you, I'll still come close to it, but I very rarely fully pass out anymore!
@@GeorginasJourney that's good to know! Glad you aren't really fainting any more either, but wish that the pre-syncope wasn't as terrible!
Elizabeth Wheeler thanks Elizabeth! Hope you’re doing okay today :)
@@GeorginasJourney Thanks! You too! Just stuck at home again. I'm in rural America so Covid-19 hasn't really affected us yet. Hope you are safe in your area.
I suffer from so many conditions as well (: It all started when I got tmj which was when I was 11 and now I’m 21. I’ve been in and out the hospital my entire life due to my weird symptoms I get almost all over my body. So I was diagnosed with acid reflux and IBS D :( but it’s not a for sure. I also struggle with pelvic pain and back pain. There’s so much actually it’s quite upsetting! I’m glad that I found this video because lately I’ve been feeling so down :( it’s so relieving to hear someone that understands!
Corinta Rivera these are just my undiagnosed symptoms, I talk more about my diagnosed conditions and related symptoms (which is also quite a lot) & hospital stuff in other videos, which you might also like :)
Very interesting, thank you for sharing! Ps. you are very pretty, I love your hair and eyebrows.
Thank you so much!
I get weird hiccups too but usually people think I can't breath because it sounds like a prolonged gasp or something.
Oh that's interesting! It could be respiratory- related for you! Mine don't sound like that at all haha
Amen to a big chunk of this, wow
Maria Klippert thanks!
God bless you and heal you! Amen!
Thank you! 😊
The myoclonic jerk before going to sleep is a normal thing I get that and and for me it's a good sign that I'm more relaxed. I wonder if the hiccups that you mention could be connected to needing to eat every 2 hours. My stomach symptoms have improved a lot since I have stopped snacking. When you do have your snacks you should have very light ones without any fat in them so that it's easier for your stomach to digest them The sensitivity to light could be connected to to exposure to fluorescent lights and computer screens which have a flicker that we can't see but which can stimulate the brain.
Yeah, I said in the video it’s normal and that most people experience it at least once. And no, I shouldn’t just have light snacks because I’ll faint. Everyone is different, what works for you wont necessarily work for someone else.
The dry mouth could be medications if you are on any. Medications for lots of things quite commonly cause a dry mouth, for me it feels like I stuffed a couple cotton balls in my mouth. Staying hydrated is the only thing that helps me, it doesn't rid of it but lessons it. Some people use artificial saliva but I hate the stuff.
Kirsten Corbett I don’t have it constantly & haven’t had it happen in quite a few months actually :) I’m glad you’ve found something that helps you though!
lymphocytic hypophysitis! Get an mri! Also get checked for Arnold Chiara malfomation!!!! Mri mri mri. And an endo!!
Ground Food I’m from the UK so I can’t just get tests, the doctors decide what tests you have and they won’t give me one!
For 2 months straight I’ve been dealing with weakness muscle clenching blurry vision and loss of thought and confusion, anxiety makes it all worse, all my brain scans came back normal, blood panels, they tested my chest with an X-ray for white lesions trying to rule out MS. But I have another mri on wed to see if my spinal fluid is dispersing properly in my body. It’s very scary not knowing or never knowing for that matter what’s wrong with me.
Good luck with your MRI! Hope you can get answers soon! And I understand, I was undiagnosed for 6 years.
I have gastroparesis and IBS and I my orthopedist suspects I have hEDS but I’m not officially diagnosed. I randomly get these things I call hiccup burp-like hybrids. Happens multiple times in a row and are very loud. No clue what it is but it sounded kinda similar to what you were describing at the beginning of the video. It’s embarrassing for me because it’s so loud. It’s a very loud hiccup and I have no control over it. I’m not sure if it’s the same or not but sounded familiar to me. I also have times where I don’t know if I’m going to be sick, burp, or hiccup. I’m so intune with my body most of the time but there are times I’m not sure.
Laundrey1 it does sound pretty similar! I have the same thing where I can’t always tell if it’ll be a hiccup or like an acid reflux thing and cause stomach acid to come up...so disgusting but when it happens unexpectedly I have to run to the bathroom to spit it out- but it’s only a tiny bit and there’s no nausea associated with it like when you’re actually being sick 😅
This happens to me too with the hiccup noises like it’s in between a hiccup and like saying the word ‘errr’ for me. It happens every time I eat or drink something. I have many undiagnosed stomach issues and have had them for years now always in and out of hospital. Just hoping I get somewhere soon with the specialists. Glad to know im not the only one that does this!!! It’s embarrassing when your in a public place and you sometimes don’t even know it’s about it happen it just happens out of no where 😅
THE HICCUP HEAVE YES I DO THAT AS WELL 😅❤️
haha, glad we're not the only one!
Thank you for sharing - hope you can get some answers. Your channel helps me not feel so alone! #SpoonieLife
Dermatillomaniac thanks! I’m happy to hear that :)
Like a year ago some of my toes also went through a period of time in which i didn't feel the skin as if they were under anesthesia and the sensation was non stop. I went to the doctor and i was in another country, she told me to set a date to the neurologist and i was very afraid...
When i came back to my country i went to a physio and he told me not to worry, that it was related to the nerves and that i would regain the sense. It gave me lots of calm and after some months my toes indeed started going back to normal.
The cause in me was a damage after walking excesively. I am also hypermobile, but i am still not diagnosed for EDS, so perhaps i don't have EDS and the problem has a very different root in u. Anyway, i am sure you'll find the cause :) and they'll go back to normal too if they didn't already!!
it may be helpful to read the 2017 criteria for hEDS if you think you may have it
Hi Georgie! I get hiccups when my neck is misaligned, could that be causing your hiccup/heaves too?
Ooooh... this explains my hichup. Thank you ❤️
Penelope Polins née Meyer that’s interesting Penny! I hope you’re not dealing with it too often though, sounds uncomfortable 😬 I don’t really have any neck pain, so I don’t think that’s the case for me thankfully!
I cant cope with mine my parents think I'm faking it. I tell myself that wanting a night sleep is unacceptable i dont exefcise and I eat just enough. I have vague symptoms 18 years and doctors won't do sleep study. Im 7 stone 5 and often throw up after my training but it was decide dc already.
Sonicz Forever I’m so sorry to hear this, can you get a second opinion from another doctor? I was under 7 stone when I was at my most ill, but things can get better- I have a video on being undiagnosed (about 4 videos back from my most recent), which I also think could be really helpful for you
I get a lot of finger and thumb pain and tingling and hiccups I don’t get loads but when I do they can last alllll day like yesterday and I’ve got sensitive eyes to love caps and over glassses
ilovebrean sounds like we have a lot of overlap in our symptoms!
Hi Georgina! I have generalised HSD like you too and I had no idea what the weird leg kicking thing was called. I also have extreme light sensitivity and it gives me blurred vision and pre-syncope also. I just wear sunglasses outside and leave the lights very dim all the time. I feel like a vampire 😂
I did a tilt table test for POTs and it came back unconfirmed by the cardiologist. He just said I have orthostatic hypotension with orthostatic tachycardia but have been thinking about getting a second opinion since my symptoms started returning 4 months ago and are getting worse again after a couple of years managing with just salt tablets and increased water consumption. It's not enough anymore for some reason.
I hope you figure out whats going on with your hands. I've been getting nerve pain in my neck lately too and it accompanies muscle spasms. Are you getting spasms in your hand also?
Rhiannon Bell Hi Rhiannon! Sorry you deal with the light sensitivity too- it’s such a difficult symptom, isn’t it! I’m surprised by how many of us seem to be dealing with it though, so you’re definitely not alone in that!
That does sound like it would be worth getting a second opinion if you can! There are a few treatment options for POTS (mainly meds if you’re from the UK) so it’s worth getting a diagnosis so you can access treatment to feel better! And that sounds so horrible about your neck, but I know a lot of people with HSD experience the same thing! But no, I don’t think I do experience spasms with the pain and numbness in my hand
@@GeorginasJourney Georgina's Journey Georgina's Journey hey! Thanks for the quick reply :) I think my light sensitivity has been worse lately and I'm not sure if it's to do with central sensitisation syndrome or HSD.
I'm from Australia but I'm sure we have many of the same drugs available as in the UK. I did do a trial on fludrocortisone which worked really well but my new doctor kept pushing me against it. I'm thinking I'll go in again this week though, as I have been worried about fainting in the shower lately since I'm getting pre-syncope/blackouts almost everytime I stand now.
I'm also just watching your other video on dealing with worsening health and I wanted to say thank you for being so vulnerable and sharing what you do to help yourself. Its a blessing to not feel alone. The cyclical vomiting sounds awful to deal with so I'm so sorry you are going through that lately.
Rhiannon Bell Hope it goes well if you decide to go in again! A shower stool could be worth considering, even though I’m on medication for POTS, showers are still too dangerous for me without it! Been an absolute game changer to have a shower without being at risk of fainting and it’s stopped me feeling quite so I’ll afterwards!
Thank you, I’m glad it’s helped you feel slightly better about it all, we’re all in this together 💪🏽 x
Small fiber neuropathy and EDS are related. I think I have both but don't have diagnosis .
Can you get a phone consultation with a doctor to see if you can get a referral
@@GeorginasJourney
Well ,here in Serbia this is a litle bit harder, but I will try
@@GeorginasJourney
I am sorry on my English
psiw agy oh sorry, your English is great I didn’t realise you weren’t from an English speaking country, my mistake!
psiw agy your English is great!
Have you ever heard Dr. Brooke Goldner? You might want to check her out. She has many videos on UA-cam.
Alesha Bracco which videos in particular did you mean? I’ve just had a look at her channel and her videos don’t seem relevant to me or my illnesses
Wondering if you found the reason of sun/ light spot yet? I have it. I don’t know what it is.I have MCAS, EDS, Dysautonomia and Gastroparesis
I still don’t know!
I don't get that hiccup heave. I do know that when I'm about to get a hiccup, my breathing first becomes irregular giving me a chance to counteract it. I do that by controlling my breathing consciously until the hiccup tendency disappears.
Bert Visscher I’m happy you’ve found what works for you!
Your hand / thumb issue could be Carpel tunnel syndrome it causes bad pain as well
MisWheezy thanks!
Hi Georgina :) tnx for all the tips. I have some kind of epilepsy that affects my autonomic system. So it's like dysautonomia... since it's medication resistant, i can't control it unless i go for the surgery that i try not to. Therefore i need to cope with the symptoms. You mentioned eating every 2hr. I have the same challenge. I want to know what do you eat? How do you manage repetitive food boredom? Tnx alot💜
Hi! I’m on a restricted diet due to my conditions, so food does get repetitive sometimes- some examples of snacks I have are chia seed pudding, porridge, oatcakes, crisps, chips, nuts, baked potato, toast (a lot of these things you can add different toppings to taste & to fit your dietary restrictions ☺️), pitta bread & veggies with hummus 😋 cereal bars, microwaveable rice packets
I try to eat easy stuff like that for snacks otherwise I’d be cooking all day long haha 😂
@@GeorginasJourney thank you sweetie 💜 my diet is restricted too. I have *allergy* and intolerance to dairy products. gluten also triggers my seizures indirectly. And im also vegetarian. Good ideas. Specially baked potatoes and hummus. I'm going to make them today. Make a "what i eat in a day" video pls :) we need inspiration. I'm always eating 🦫☺
I have had the dry mouth so bad for years and it will make me unable to talk and my teeth have rotted below the gums. Even my throat dries and feels like it is sticking together. I understand and water doesn’t help.
I think there may be a medication that can make you produce saliva although I don’t know much about it, but it may be worth googling! So sorry you’ve had such a tough time with this
the eating thing could be a hormone problem? i get the same thing! i feel like im always hungry its frustrating when i dont want to eat haha. mine is due to thyroid hormones.
Rachael Cook I’ve had the basic thyroid test at the doctors and that didn’t show anything!
@@GeorginasJourney Ah okay! at least you've had it tested. Mine doesn't always show up on the normal tests. It started happening when i had thyroiditis once and now even though my thyroid test say its fine i get the symptom still of always needing to eat big meals often!! but idk it could be another hormone or even just your metabolism. i have POTS too and sometimes i think its because our hr is so high its using up the food quick hahaha
Rachael Cook yeah, I have wondered before if it’s a thyroid or hormone problem that the standard test doesn’t test for or something! Not knowing is so annoying as you can’t do anything about it :/ I used to think that, although I’ve put on a lot of weight and it still happens so I don’t think it’s metabolism related anymore or pots causing me to use that much more energy, before I gained all of the weight, I was certain it was that though!
How do you cope with disappointment with doctors. Its made it hard to get care. I'm questioning all symptoms now. I don't know if i have dust allergy. I tried to get sleep study and I was devastated by what I was told. I was feeling extremely sleep deprived and losing my appetite. I'm living in a flat that I hate but I can't move safely as I'm too frail. I was told that I only required 5 hours sleep and I was refreshed. I paid privately and got bloods. Doctor was unsympathetic and now I feel I shouldn't go to bed. Tgat indeed could explain my insomnia but 5 hours is a but weird i run 12km a day as i hate noise and sound (autism) I've a miserable quality of life I've had one suspected fit so am very cautious about what I take. I was advised not to take my night meds anymore and that means no sleep. I'm 35 and just 7.5 stone running is the only thing that helps. I will never trust another doctor again.
That all sounds really difficult, I’m sorry you’re having such a tough time :( Tests only test for certain things so even if the test comes back normal, it just means that what they tested for is normal and there may be something else going on. Can you see a GP type doctor and perhaps start from scratch and tell them your main symptoms or that you’re not sure what to do? And do you have a social worker at all? It sounds like it could be helpful to have someone advocating for you and to help and advise you
Numb feet memory loss nausea 24/7headaches ear ache
Can you get an MRI for the headaches?
Sorry you're dealing with chronic illness and POTS. I know first-hand how chronic illness can affect one's life. My wife is slowly recovering after years of chronic illness & POTS by doing DNRS exercises (see RetrainingTheBrain.com --> Success Stories tab). This has been a game changer for us. Helpful UA-cam videos by others dealing with chronic illness but found recovery through DNRS exercises include Mandy Meehan & Sarah Panther. The 14-hr DNRS dvd set was a great resource.
Honda Fan DNRS doesn’t work on genetic conditions, since POTS is caused by a genetic connective tissue disorder for me, it won’t work. I did buy and try it before I knew my pots was caused by that though and it didn’t work (as my blood vessels are too stretchy which DNRS can’t fix).
Get your active b12 checked and b12 serum test done
tattoochef Done I had the b12 test done that they do in the UK and it came back good :) I can’t afford to go privately, and since that test indicated my b12 levels are good, I feel fairly confident that my levels are okay
If you dont mind me asking what was your leval as so.e people are b12 deficient in normal range between 200 and 900 just all your symptoms come under b12 deficiency and folate deficiency and there good person to listen to called sally m pochalok she a american nurse she wrote book called could it be b12 an undiagnosed epidemic also a documentary she in
I have peripheral neuropathy as well, my hands ache and go numb when I'm sleeping and it's difficult to type
danielgartin6993 I’m sorry you struggle with that! I can use a keyboard still, but struggle with typing on touch screen keypads due to the reduced sensation!
I get that thing where I go into pre-syncope if I don’t eat every couple of hours!! Does anyone know what this is? It’s really annoying and horrible!
Charlotte Beaumont sorry you deal with this too Charlotte! I’ll keep you updated if I find out any more about it!
Georgina's Journey thank you 😊
Sorry this is so late but the not knowing where your hands are sounds like disturbed proprioception which is an EDS/HSD thing actually! Not sure why it's just affecting your hands though. Also extreme dry mouth especially if your eyes are also dry could be a sign of Sjorgen's (i can't spell it properly
Riley Hartmann my poor proprioception doesn’t just affect my hands, it is my whole body, which is why my physiotherapist has to position me herself when I do my exercises. But with my hands it’s especially bad
@@GeorginasJourney Ah, that makes sense. In that case it's very likely EDS-related, unless it seems to have gotten worse over time.
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The need to eat every 2 hours without abnormal blood sugar!! Yes!! So strange!
I have no idea what causes it but it's so frustrating!
@@GeorginasJourney I go through phases where I have to do this too, and my blood sugar is always fine when it happens too. But for a few months at a time, I'll have to eat every 2-3 hours, and then it'll go away for a few months and back and forth. It's so strange!
I hope you’re doing well with this social distancing and being grounded by the government. I do have some of the same symptoms as you.
My nerve pain is just like you describe, but it affects my legs and feet too, especially in my hips and knees. I also get a feeling like some one is pouring hot water down my legs or arms. (I’ve been taking high doses of gabapentin for it but not everyone can take it).
I can also identify with an extreme dry mouth, like no saliva at all and water doesn’t help, it’s really bad for your teeth (and you can’t talk properly). My dentist has prescribed artificial saliva for it, and there are specialist mouthwashes that you can buy. I was told it was a side affect the pain meds that I take.
My eyesight has never been normal (I’m registered blind) and the light blindness you describe is very real. I can’t buy things in shops like pubs and cafes because of the amount of lights or reflections behind the counter means that I can’t tell if people are there at all. Going into shops, or coming out of shops is hard because my eyes take a while to adjust, there’s no way I could quickly pop into a shop to buy something. It makes it so hard to watch tv that I haven’t had one for years, and I use a mobile phone with the brightness set on minimum.
(All these new corona rules are a nightmare for us blind people, I would love to know if anyone has any advice.)
I’m also really sensitive to sound too and don’t like any kind of amplified or loud music, (but I like ordinary singing!), and I can tell when things are left on, I have an induction hob and can tell when it’s on standby!
I’ve also got a horrible weird pain in my chest, it feels like someone is sitting on me or crushing my rib cage. I’ve had all sorts of checkups for it and it’s not my heart, aorta, lungs, or ribs, but I don’t know what’s causing it and it’s not like ordinary rib pain.
Fingers crossed that I don’t get the same food issue as you, as I would really struggle with having to eat every two hours because chewing hurts too much.
Sorry for the long comment, I’m kinda lonely sometimes.
billieblue Sheepie gosh you’re dealing with a lot, I’m sorry to hear all of that. Sounds like we have a fair amount of overlap in our symptoms though. And you don’t need to apologise, I enjoy reading your comments :)
Have you gotten tested for spinocerebellar ataxia atrophy?
Thina Garrett no, I haven’t! I’ve never heard of that!
You should, POTS is part of it. My dad has it and I think it would be a little benefit for you to look into with a neurologist.
Thina Garrett thanks, but from my initial research, I don’t think I have it to be honest. I have POTS caused by EDS, so that isn’t an unknown for me and I’m not looking for something to explain it since I already know the cause. Which symptoms in particular made you think I could have it, if you don’t mind me asking?
It wasn't from this video, it was from some of the other one's I have watched of yours and some other UA-camrs
Thina Garrett okay, I still don’t think I have it as my symptoms and stuff fit better with my current diagnosis of HSD/EDS & a lot of chronic illness youtubers also have EDS, although I don’t really see how that’s relevant here
I have had really bad stomach problems where I have really dad stomach pains every day and I’m not sure what’s causing it. I don’t really feel nauseous and there is nothing wrong with my poo if anyone has any idea what’s wrong with me?
probably best to speak to your doctor about it! They can ask more questions about the type of pain and where it's coming from (as it could be a number of things!) and run some tests for you!
It could be a stomach ulcer
Like with me i get numbness and pain in my hands and wrists
danielgartin6993 I’m sorry you deal with that
@@GeorginasJourney Avril Lavigne deals with it as well, She had a nasty case of Lyme disease
danielgartin6993 I knew she had Lyme disease, but I didn’t know she had that symptom from it
@@GeorginasJourney She was so upset, if you listen to her single "Head Above Water" you'll understand, I think she's a beautiful young woman
danielgartin6993 ok
God bless you girl 🙏. I am so sorry for what you are going through 🥺. It breaks my heart and I am praying for you. I want to connect with you, do you have Instagram?
Thank you! And I’m pleased you found my Instagram, thanks so much for your kind message on there!
@@GeorginasJourney Thank you, so am I 🙏
@@GeorginasJourney please respond on Instagram, I sent you a message I think on Saturday over the weekend I'd like to talk to you I have a few questions I could use your help God bless you thank you 🙏
Do u have Instagram because I’d really like to chat with you about symptoms!!
Leena Elliz Yes! My Instagram is @georginas_journey :)
Georgina's Journey yes thank youuu! I’ve just followed you :))
Leena Elliz I’ll have a look now!
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Many thanks, I have been researching "chronic fatigue syndrome medication" for a while now, and I think this has helped. Ever heard of - Diyadelyn Ziyily Idea - (should be on google have a look )?
It is a good one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the headache. Ive heard some great things about it and my m8 got amazing success with it.
send me more info on instagram so I can read more about it :)
Love your video!! Please check our my channel 🥰 new video up about chronic pain
Amy Wilson thanks! Just had a look as I always love finding new channels to watch, but it says your channel has no videos and no subscribers?
Hey! Sorry its this channel LOL 😆
The eating issues/glucose symptoms I have this and they don't know why. There is something called - postprandial hypoglycemia - Sugar is in the normal range, but classic low sugar symptoms that food resolves. I have the same symptoms, the feeling of spaciness, dizziness/fainty feeling of death..or black outs..
Danny Chapman hypoglycaemia is low blood sugar levels, so if your in range, I don’t think you can have it. I’m sorry you’re experiencing that though
@@GeorginasJourney I've caught a low 60 once and 70s- but meters aren't accurate so someone in the 60s might be in the 50s. Also, if your sugar drops to fast - you can feel that drop even if it's not below normal - - I just had a continuous glucose meter check for 14 days - so we will see what the results are. I do share this one area of symptoms with you - and the same resolution is eating when the symptoms come on, so I eat every few hours to help keep them away. If I figure it out, I'll let you know.
Danny Chapman okay, thank you! Hope you can get it figured out! It’s definitely not postprandial hypoglycaemia for me though, as I feel best after eating, it’s after that 1 or 2 hour mark that I start to have problems!
@@GeorginasJourney There is also a free documentary here on youtube called "Super Juice" me - 8 chronically ill patients take part and all improve to various levels - one guy was on 52 pills per day, he left the program on 2. I also have pre-syncope if I eat to much sugar to fast - It feels like a super rush to the brain and I feel like I'm going to drop dead or blackout.