Your videos helped me realize I have POTS and start seriously pursuing a diagnosis. I’ve now been diagnosed with POTS, MCAS, and EDS among other things. 3 of my siblings have also been diagnosed now with POTS and EDS, and one of them is likely getting an MCAS diagnosis this summer. I also wondered for a while if I truly belonged in the EDS or HSD camps. This video is so well-expressed. Thanks for all you do :)
Ime hypomobile.all.over stretchy skin in places but not fragile heal in keyloids. Have all your diagnosis and fybromyalgia.and get checked for Asperger's ADHD OCD for which at 43 I have them to my mum has severe ms hypomobilty to
@@musicnojutsu7394 do you have much pain sure I have add to but not ADHD never been hypoactive from birth no energy.had CFS pots.now it's more fybromyalgia where is your constant pain mine shoulders armpits constant neurologist says it's migraine with no headache
Your channel says Journey. This tells me you were on a journey. By watching your videos, we are trying to decide if the knowledge you gained is beneficial for us. I dont know i have anything. Im on this journey because symptoms i have been ignoring as MY issues are showing up in my young child and as im getting older im feeling more symptoms that are harder to ignore😢. Im grateful for your videos. Too many of my family members have suffered from an unknown boogey man and im determined to figure it out. Thank you for your transparency. I get out of breath during convetsations too. Its weird its even hard to talk.
I’m so glad you decided to make the video in the end! It’s true that what connects us all as a community is the fact that we’re chronically ill. It’s just nice to know that we’re not alone, regardless of the diagnosis! Xx 💕
I have been fighting so long for the diagnosis, that I have known/thought to be true in myself for so long (hEDS and pots as well as probably MCAS that isn't yet diagnosed by a medical proffessional) that it is so easy to start doubting yourself, doubting your sanity, doubting even the symptomes.... to start believing that it's all in your head... If a random person was to go into a doctors appointement with a couple of symptomes and were told it was cancer or diabetes, they wouldn't doubt that doctor! but for those of us that have been suffering for ages, that have been searching for our diagnosis for years; it's so much harder to accept the validation of either our auto-diagnosis or our search for something wrong with us! What's hard for me at the moment, having been diagnosed at the age of nearly 40, is that when I take the recommendations for treating a patient with hEDS to a specialist (dentist, anaestists...) that they actually take that in to account even though I could have gone in with the same condition a couple of years ago but that without a diagnosis no one would have taken me seriously... and that I could have had a bad reaction.... Love, light and spoons to all; whether your diagnosis, symptomes or life story is the same as mine or not!
I know exactly what you mean, I know I was diagnosed in my 20s, but 20+ years is still a long time of those sorts of experiences, I’m so glad you finally have some answers now & are finally able to learn what stuff works for you & what’s problematic, etc 💗 Although even with my diagnoses, I’ve only recently started to speak up to doctors, nurses & HCAs about some things- a few years ago, I went to a procedure that needed local anaesthetic with my friend & I had to warn her that it doesn’t work on me so my eyes would be watering a lot, but not to worry about it or react to it & she found it really hard to watch, knowing I felt everything & watching my eyes water so much These days, I’ve found my voice & just let the person doing the procedure know & they’re usually happy to accommodate it. The thing is though, I think if someone without a diagnosis said they don’t respond well to local & may need more, I’m sure most health professionals would be accommodating to them too, it’s just that when we’re undiagnosed, we feel like we can’t speak up for ourselves, as even we don’t understand our own issues, let alone expecting others to 😌
@@GeorginasJourney in France, where I live, there is a huge document that has been created for "how to deal with a "non-vascular EDS " patient". Each medical specialist has a section so now at each medical appointment I print of the relevant parts and hand it over as soon as I mention EDS ... However pots is a lot less know and there is (as far as I know) nothing to give medical health providers to help them treat us appropriately... I'm having a gastrostomy and a fibroscopie under general anesthesia (as is often the case in France) on Thursday and it will be my first general anesthesia... I have no idea if there are recommendations to give to the anaesthetist for pots but I hope he won't freak out when he sees that with 20mg of propranolol morning and evening my resting (lying down) heart rate is about 46 BPM....
That document sounds great, is it only available in French? I hope your surgery goes as smoothly as possible, I’ll be thinking of you 💗 The anaesthetist may already be aware of everything from reading your notes from the pre op assessment :) but athletes and really healthy people can have a hr in the 40s, so they may not be too concerned, either way this sort of thing is partly what the pro op assessment is for so that they can make a suitable plan for you if they need to :)
Your videos have been extremely informative and helpful to many, me included, I think I found you via Izzy pre my dx and you should be very proud of pointing even one person in the right direction to whatever dx.
This was a really fascinating video! Thank you for making it. I know a lot of people who have similar symptoms to me but from different causes, but I haven't really thought about it in this way
Thank you for sharing this. I found your videos B4 my hEDS diagnosis. I was diagnosed last year at the hypermobility clinic in London. They were really helpful as I was unsure if I really had this condition at the time even though my identical twin sister was diagnosed in 2014. Thank you so much for continuing to share your story. Xxx
Most of my diagnoses have little to no representation in general but the amount of symptom overlap I have with some prominent conditions is what makes the content about how to navigate the world useful. I love seeing how people live their disabled lives and would love having disabled friends to share these experiences with; social media is a way for me to connect to people who see life through a similar lens as me.
This video came at a good time for me. I’m going to start going to a CFS specialist (via video chat) and we just had a brief phone call. Within 2 minutes of the call she asked if I had POTS or EDS. I am only diagnosed with CFS, but I have symptoms of both POTS and EDS. My mom has a heart defect so we always thought that’s what I had. I thought you had to have the symptom of passing out to have POTS, which I guess isn’t true. I’ve struggled a little bit with the thought of what if I don’t have CFS? And was shocked when that thought bothered me. My life revolves around having CFS,and I feel like I would be a square one and no longer belong in the CFS community if that was true. The chances of me not actually having CFS is very small, but you talking about relating to each other based on symptoms and experiences makes me feel better. I have found your POTS and EDS videos helpful in questioning if I have them so they definitely have given something to consider with my doctor.❤
That’s great news that you get to see a CFS specialist! Yay! And you could have both CFS & Pots for example! I’ll send a video to you about how to test for pots which will give you a good indication of whether you could have it 😊
How To Test For POTS At Home ua-cam.com/video/S7wtrrOgSW8/v-deo.html (this won’t give a diagnosis, but can give a good idea about whether it could be pots ☺️
@@GeorginasJourney thanks I appreciate it! I don’t know if my bloodwork will indicate if I have POTS if that’s a thing? I had a bunch of weird blood tests done and for some reason they haven’t come back yet. I am becoming more and more convinced I have POTS, I have all of the symptoms besides passing out. It’s difficult because when you have a weird symptom (because nothing is known about CFS) you think it’s just CFS causing problems when it could be another illness.🤪 I’ll keep you posted on what I find out. Regardless if I have POTS or not, I’m going to watch some of your videos on the subject. I always feel faint or dizzy like I’m going to pass out. So your videos are going to be helpful on managing those POTS like symptoms.
@@ruby3200 sorry to jump in but your experience sounds like mine. I was referred for a tilt table test but despite a table being available there is currently noone trained to use it. I was diagnosed as having Orthostatic hypotension along with my ME/CFS. I don't and have never fainted. I manage symptoms by drinking electrolyte solution. And wearing compression socks or stockings. Definitely speak to doctor and ask for a referral. Btw although my POTSy symptoms are managed I still very much have ME 😬
@@escott696 No thanks for commenting this. Any possible chronic issues that people think are a possibility I like to hear. For all I know I could have many other chronic illnesses with my CFS. I could have Orthostatic hypotension. However I have something wrong with my heart. It could be an inherited heart defect (a defect where instead of having circuit a b and c in order, the heart goes a b b a etc. This leads to a high heart rate because the heart is trying to keep up. If that makes sense?) but because I feel so light headed and get dizzy upon standing, on top of obvious heart issues I am leaning towards POTS. You never know till you get tested! 🤷♀️ I hope you can get tested soon.
i have only gotten a clinical diagnosis because my genetice testing is a year out and this not exactly fear but worry of fbeing told that i done have eds whound break my heart thank you this has hlped me re think hiw i feal abou the diagnosixe
Ah bless you, I understand this worry! Genetic testing actually can’t diagnose hEDS though, so if you are genetics test comes back negative, it could still be hEDS or HSD!
I thought I misheard it about ifs. :D There was a period when I was wondering if I have some kind of EDS. I was a bit frustrated at the time that it didn't pan out, now I'm happy I don't have it. :) You guys go through a lot. I'm happy to report that after somewhat remediating the mold at my home at least the SIBO is gone. So today I was remediating some more at a balcony and at the end of the day I kind of lightly vomited in the mask, fun times! :D
My sister in law has been sick recently, she has been throwing up and we are waiting for the doctor apt. I thought about SIBO, was vomiting a main symptom for you? Thank you!
@@elle7856 Hi Elle! I'm sorry to hear that, wishing her a speedy recovery! For me the main symptoms of SIBO was bloating all the time. I've been sensitive to inhaling any kind of dust or mold at home or foul smells for years, it makes me close to vomiting. Actually I've had an acute erosive gastritis bouts in 2013, 2014 and 2016 when life got tough thanks to the university, one night in 2013 I was vomiting nearly every 15 minutes all night, my doc prescribed me some drugs that improved my state at the time, but it didn't help with the chronic symptoms. It can be many things. Experimenting with my diet and reducing the level of stress to normal levels helped me at the time. Recently I've figured out the air conditioner in my room makes the room smell kind of moldy, and I've lived there for nearly 10 years, since I moved to another room it's just better. My main problem is ME/CFS and chronic mold exposure can do that. Also I think a Herx reaction can make you sick. The doc may order endoscopy among other labs to see what's going on. I think of SIBO as a chronic condition and of vomiting as an acute problem. Take care!
Going to get my histamine checked as linked with eds Asperger's ADHD fybromyalgia OCD and mcas also mcas causes fybromyalgia so I've found form for mcas checklist and just doing haemecremotosis test as linked same hope this helps others
The link is actually EDS causes MCAS, a lot of people with fibromyalgia actually have EDS and are misdiagnosed, or they have both, but it’s the EDS causing the MCAS, not the fibromyalgia. Since you suspect MCAS and EDS, a histamine test is a good idea
@@GeorginasJourney yes I have Asperger's to this is why my mum has severe ms we have to find everything out ourselves little late at 43 my son as Asperger's OCD a d hypomobility to.have you found any relief with your pain great channel
@@GeorginasJourney yes I have Asperger's to this is why my mum has severe ms we have to find everything out ourselves little late at 43 my son as Asperger's OCD a d hypomobility to.have you found any relief with your pain great channel
@@GeorginasJourney also upper cervical I've seen says it's my jaw causing my pain upper body even though I have no jaw pain nowadays but I did 20 years ago
@@Truerealism747 hi again, yeah, it’s so hard figuring this all out on our own, isn’t it! Took me many years too! So the research mostly says that either EDS or HSD (can be either) are the big conditions that can cause all of those other things, definitely MCAS, chronic pain, jaw pain & upper cervical pain. There’s a strong link between EDS/HSD and autism spectrum disorder too, where ASD is very common in people with eds & hsd! I use braces and supports for my painful joints & I use buscopan for stomach cramps & tummy aches and that sort of pain
They don't no if I have hsd or eds in UK do heal in keyloids stretchy skin on elbows I don't bruise easily hypomobility all over with Asperger's which points to eds
Have you had a look over the 2017 hEDS criteria? It won’t diagnose you, but for your own curiosity about how you compare to the hEDS criteria, it could be worth a read
I would probably pass the joint mobility part. I definitely have problems with the way I scar. I have some of the dental problems. I have TMJ. I have had pain every morning for months sometimes. It gradually fades. A lot of the things listed on it I don't know. It seems like a doctor needs to evaluate.
Yeah, that’s right, you would need a doctor for a proper evaluation! As I said, it’s helpful to look at for your own curiosity, but you wouldn’t be able to diagnose yourself from it.
They don't no if I have hsd or eds in UK do heal in keyloids stretchy skin on elbows I don't bruise easily hypomobility all over with Asperger's which points to eds
@@GeorginasJourney same for fybromyalgia diagnosis to nerolgist says my chronic shoulders armpit pain is migraine with no headache then we suffer more sycosomatic to I've read with Asperger's ADHD hypomobility so I do not no what's causing my pain have you tryed hypomobility clinic in London
@@Truerealism747I'm no doctor, but could that be Thoracic Outlet Syndrome and/or foraminal stenosis in the cervical spine? (Thought of it because I have foraminal stenosis causing shoulder/arm pain--and also numbness--and have been referred to neurosurgery for ACDF to get the disc herniations and bone spurs out of the way of my spinal cord and arm nerves. I have hEDS.)
![Are Ehlers-Danlos Syndrome & Fibromyalgia Connected? [CC]](http://i.ytimg.com/vi/FaCxMUTWgKc/mqdefault.jpg)
![ОРБАН приехал к ПУТИНУ и "отчитался" о поездке в Киев 😁 [Пародия]](http://i.ytimg.com/vi/_0ukDovOWq8/mqdefault.jpg)
Your videos helped me realize I have POTS and start seriously pursuing a diagnosis. I’ve now been diagnosed with POTS, MCAS, and EDS among other things. 3 of my siblings have also been diagnosed now with POTS and EDS, and one of them is likely getting an MCAS diagnosis this summer. I also wondered for a while if I truly belonged in the EDS or HSD camps. This video is so well-expressed. Thanks for all you do :)
Ime hypomobile.all.over stretchy skin in places but not fragile heal in keyloids. Have all your diagnosis and fybromyalgia.and get checked for Asperger's ADHD OCD for which at 43 I have them to my mum has severe ms hypomobilty to
@@Truerealism747I also have Asperger’s/ADHD/OCD! I have both the physical trifecta and the mental trifecta, haha
@@musicnojutsu7394 do you have much pain sure I have add to but not ADHD never been hypoactive from birth no energy.had CFS pots.now it's more fybromyalgia where is your constant pain mine shoulders armpits constant neurologist says it's migraine with no headache
Do you have pain symptoms I had pots 2006 18 months but nowadays it ispain what is main symptom
Yes EXACTLY honey. You said it perfectly. We all are searching. Doesnt matter about labels
🫶🏽
Your channel says Journey. This tells me you were on a journey. By watching your videos, we are trying to decide if the knowledge you gained is beneficial for us. I dont know i have anything. Im on this journey because symptoms i have been ignoring as MY issues are showing up in my young child and as im getting older im feeling more symptoms that are harder to ignore😢. Im grateful for your videos. Too many of my family members have suffered from an unknown boogey man and im determined to figure it out.
Thank you for your transparency. I get out of breath during convetsations too. Its weird its even hard to talk.
I’m so glad you decided to make the video in the end! It’s true that what connects us all as a community is the fact that we’re chronically ill. It’s just nice to know that we’re not alone, regardless of the diagnosis! Xx 💕
Thank you ☺️ & absolutely, so many of us powering through together 💪🏽💗 xx
It's your journey so everything you've been through and shared is valid either way imo
Yes! ☺️
I have been fighting so long for the diagnosis, that I have known/thought to be true in myself for so long (hEDS and pots as well as probably MCAS that isn't yet diagnosed by a medical proffessional) that it is so easy to start doubting yourself, doubting your sanity, doubting even the symptomes.... to start believing that it's all in your head... If a random person was to go into a doctors appointement with a couple of symptomes and were told it was cancer or diabetes, they wouldn't doubt that doctor! but for those of us that have been suffering for ages, that have been searching for our diagnosis for years; it's so much harder to accept the validation of either our auto-diagnosis or our search for something wrong with us!
What's hard for me at the moment, having been diagnosed at the age of nearly 40, is that when I take the recommendations for treating a patient with hEDS to a specialist (dentist, anaestists...) that they actually take that in to account even though I could have gone in with the same condition a couple of years ago but that without a diagnosis no one would have taken me seriously... and that I could have had a bad reaction....
Love, light and spoons to all; whether your diagnosis, symptomes or life story is the same as mine or not!
I know exactly what you mean, I know I was diagnosed in my 20s, but 20+ years is still a long time of those sorts of experiences, I’m so glad you finally have some answers now & are finally able to learn what stuff works for you & what’s problematic, etc 💗
Although even with my diagnoses, I’ve only recently started to speak up to doctors, nurses & HCAs about some things- a few years ago, I went to a procedure that needed local anaesthetic with my friend & I had to warn her that it doesn’t work on me so my eyes would be watering a lot, but not to worry about it or react to it & she found it really hard to watch, knowing I felt everything & watching my eyes water so much
These days, I’ve found my voice & just let the person doing the procedure know & they’re usually happy to accommodate it. The thing is though, I think if someone without a diagnosis said they don’t respond well to local & may need more, I’m sure most health professionals would be accommodating to them too, it’s just that when we’re undiagnosed, we feel like we can’t speak up for ourselves, as even we don’t understand our own issues, let alone expecting others to 😌
@@GeorginasJourney in France, where I live, there is a huge document that has been created for "how to deal with a "non-vascular EDS " patient". Each medical specialist has a section so now at each medical appointment I print of the relevant parts and hand it over as soon as I mention EDS ...
However pots is a lot less know and there is (as far as I know) nothing to give medical health providers to help them treat us appropriately... I'm having a gastrostomy and a fibroscopie under general anesthesia (as is often the case in France) on Thursday and it will be my first general anesthesia... I have no idea if there are recommendations to give to the anaesthetist for pots but I hope he won't freak out when he sees that with 20mg of propranolol morning and evening my resting (lying down) heart rate is about 46 BPM....
This is WHY I am doing my digging because my family has suffered and now my 9 year old is suffering
That document sounds great, is it only available in French?
I hope your surgery goes as smoothly as possible, I’ll be thinking of you 💗
The anaesthetist may already be aware of everything from reading your notes from the pre op assessment :) but athletes and really healthy people can have a hr in the 40s, so they may not be too concerned, either way this sort of thing is partly what the pro op assessment is for so that they can make a suitable plan for you if they need to :)
Only 3 min in, have to pause and come back…, but raises so many thoughts and questions….looking fed to finishing this.
Thanks for making time to watch my video, Kat ☺️
Glad to hear you feel more secure about your diagnosis. I've found that being content (no matter the circumstance) is so incredibly important.
Thanks so much! That’s so true! Ps, hope you managed to get some rest after all the driving you’ve had to do lately with picking up Raelynns meds!
Thank you for sharing your story with us. Hugs and prayers.❤
Thank you so much! 💕
Your videos have been extremely informative and helpful to many, me included, I think I found you via Izzy pre my dx and you should be very proud of pointing even one person in the right direction to whatever dx.
Thank you so, so much ☺️
Great to hear from you Georgina!:) Best wishes to you from Minnesota!
☺️
Love you Darling! God bless you!
😊☺️❤️
This was a really fascinating video! Thank you for making it. I know a lot of people who have similar symptoms to me but from different causes, but I haven't really thought about it in this way
Thank you ☺️ and you’re welcome, I’m glad it was interesting ☺️
Thank you for sharing this. I found your videos B4 my hEDS diagnosis. I was diagnosed last year at the hypermobility clinic in London. They were really helpful as I was unsure if I really had this condition at the time even though my identical twin sister was diagnosed in 2014. Thank you so much for continuing to share your story. Xxx
Thank you ☺️ Glad you’re both diagnosed now! Hope you’re both as okay as you can be xx
Most of my diagnoses have little to no representation in general but the amount of symptom overlap I have with some prominent conditions is what makes the content about how to navigate the world useful. I love seeing how people live their disabled lives and would love having disabled friends to share these experiences with; social media is a way for me to connect to people who see life through a similar lens as me.
😊
This video came at a good time for me. I’m going to start going to a CFS specialist (via video chat) and we just had a brief phone call. Within 2 minutes of the call she asked if I had POTS or EDS. I am only diagnosed with CFS, but I have symptoms of both POTS and EDS. My mom has a heart defect so we always thought that’s what I had. I thought you had to have the symptom of passing out to have POTS, which I guess isn’t true. I’ve struggled a little bit with the thought of what if I don’t have CFS? And was shocked when that thought bothered me. My life revolves around having CFS,and I feel like I would be a square one and no longer belong in the CFS community if that was true. The chances of me not actually having CFS is very small, but you talking about relating to each other based on symptoms and experiences makes me feel better. I have found your POTS and EDS videos helpful in questioning if I have them so they definitely have given something to consider with my doctor.❤
That’s great news that you get to see a CFS specialist! Yay! And you could have both CFS & Pots for example! I’ll send a video to you about how to test for pots which will give you a good indication of whether you could have it 😊
How To Test For POTS At Home
ua-cam.com/video/S7wtrrOgSW8/v-deo.html (this won’t give a diagnosis, but can give a good idea about whether it could be pots ☺️
@@GeorginasJourney thanks I appreciate it! I don’t know if my bloodwork will indicate if I have POTS if that’s a thing? I had a bunch of weird blood tests done and for some reason they haven’t come back yet. I am becoming more and more convinced I have POTS, I have all of the symptoms besides passing out. It’s difficult because when you have a weird symptom (because nothing is known about CFS) you think it’s just CFS causing problems when it could be another illness.🤪 I’ll keep you posted on what I find out. Regardless if I have POTS or not, I’m going to watch some of your videos on the subject. I always feel faint or dizzy like I’m going to pass out. So your videos are going to be helpful on managing those POTS like symptoms.
@@ruby3200 sorry to jump in but your experience sounds like mine.
I was referred for a tilt table test but despite a table being available there is currently noone trained to use it.
I was diagnosed as having Orthostatic hypotension along with my ME/CFS.
I don't and have never fainted.
I manage symptoms by drinking electrolyte solution. And wearing compression socks or stockings.
Definitely speak to doctor and ask for a referral.
Btw although my POTSy symptoms are managed I still very much have ME 😬
@@escott696 No thanks for commenting this. Any possible chronic issues that people think are a possibility I like to hear. For all I know I could have many other chronic illnesses with my CFS. I could have Orthostatic hypotension. However I have something wrong with my heart. It could be an inherited heart defect (a defect where instead of having circuit a b and c in order, the heart goes a b b a etc. This leads to a high heart rate because the heart is trying to keep up. If that makes sense?) but because I feel so light headed and get dizzy upon standing, on top of obvious heart issues I am leaning towards POTS. You never know till you get tested! 🤷♀️ I hope you can get tested soon.
i have only gotten a clinical diagnosis because my genetice testing is a year out and this not exactly fear but worry of fbeing told that i done have eds whound break my heart thank you this has hlped me re think hiw i feal abou the diagnosixe
Ah bless you, I understand this worry! Genetic testing actually can’t diagnose hEDS though, so if you are genetics test comes back negative, it could still be hEDS or HSD!
I miss you to cutie pie 😘😘😘😘🌹🌹🌹❤️❤️❤️❤️
Nice to see you again Karl! ☺️
I thought I misheard it about ifs. :D
There was a period when I was wondering if I have some kind of EDS. I was a bit frustrated at the time that it didn't pan out, now I'm happy I don't have it. :) You guys go through a lot.
I'm happy to report that after somewhat remediating the mold at my home at least the SIBO is gone.
So today I was remediating some more at a balcony and at the end of the day I kind of lightly vomited in the mask, fun times! :D
My sister in law has been sick recently, she has been throwing up and we are waiting for the doctor apt. I thought about SIBO, was vomiting a main symptom for you? Thank you!
@@elle7856 Hi Elle! I'm sorry to hear that, wishing her a speedy recovery!
For me the main symptoms of SIBO was bloating all the time. I've been sensitive to inhaling any kind of dust or mold at home or foul smells for years, it makes me close to vomiting.
Actually I've had an acute erosive gastritis bouts in 2013, 2014 and 2016 when life got tough thanks to the university, one night in 2013 I was vomiting nearly every 15 minutes all night, my doc prescribed me some drugs that improved my state at the time, but it didn't help with the chronic symptoms. It can be many things. Experimenting with my diet and reducing the level of stress to normal levels helped me at the time.
Recently I've figured out the air conditioner in my room makes the room smell kind of moldy, and I've lived there for nearly 10 years, since I moved to another room it's just better. My main problem is ME/CFS and chronic mold exposure can do that.
Also I think a Herx reaction can make you sick. The doc may order endoscopy among other labs to see what's going on. I think of SIBO as a chronic condition and of vomiting as an acute problem.
Take care!
similar symptoms mean more than a similar diagnosis as far as relatability is concerned
Yeah, that’s one of the points I made 😊
Going to get my histamine checked as linked with eds Asperger's ADHD fybromyalgia OCD and mcas also mcas causes fybromyalgia so I've found form for mcas checklist and just doing haemecremotosis test as linked same hope this helps others
The link is actually EDS causes MCAS, a lot of people with fibromyalgia actually have EDS and are misdiagnosed, or they have both, but it’s the EDS causing the MCAS, not the fibromyalgia. Since you suspect MCAS and EDS, a histamine test is a good idea
@@GeorginasJourney yes I have Asperger's to this is why my mum has severe ms we have to find everything out ourselves little late at 43 my son as Asperger's OCD a d hypomobility to.have you found any relief with your pain great channel
@@GeorginasJourney yes I have Asperger's to this is why my mum has severe ms we have to find everything out ourselves little late at 43 my son as Asperger's OCD a d hypomobility to.have you found any relief with your pain great channel
@@GeorginasJourney also upper cervical I've seen says it's my jaw causing my pain upper body even though I have no jaw pain nowadays but I did 20 years ago
@@Truerealism747 hi again, yeah, it’s so hard figuring this all out on our own, isn’t it! Took me many years too! So the research mostly says that either EDS or HSD (can be either) are the big conditions that can cause all of those other things, definitely MCAS, chronic pain, jaw pain & upper cervical pain. There’s a strong link between EDS/HSD and autism spectrum disorder too, where ASD is very common in people with eds & hsd! I use braces and supports for my painful joints & I use buscopan for stomach cramps & tummy aches and that sort of pain
They don't no if I have hsd or eds in UK do heal in keyloids stretchy skin on elbows I don't bruise easily hypomobility all over with Asperger's which points to eds
Could also point to HSD though, or just hypermobility, it would depend what other symptoms you have as those ones are more signs than symptoms
What is the glove do ?
It’s a compression glove, they’re used for lots of things ☺️
I have POTS and the doctor said that I probably have EDS. But I don't know for sure. The POTS symptoms are worse for me.
Have you had a look over the 2017 hEDS criteria? It won’t diagnose you, but for your own curiosity about how you compare to the hEDS criteria, it could be worth a read
@@GeorginasJourneyThanks, I will look at that.
I would probably pass the joint mobility part. I definitely have problems with the way I scar. I have some of the dental problems. I have TMJ. I have had pain every morning for months sometimes. It gradually fades.
A lot of the things listed on it I don't know. It seems like a doctor needs to evaluate.
Yeah, that’s right, you would need a doctor for a proper evaluation! As I said, it’s helpful to look at for your own curiosity, but you wouldn’t be able to diagnose yourself from it.
@@GeorginasJourneyhow are you now
They don't no if I have hsd or eds in UK do heal in keyloids stretchy skin on elbows I don't bruise easily hypomobility all over with Asperger's which points to eds
I’m in the U.K. too, and found it’s quite common for doctors not to know which one it is for a person here
@@GeorginasJourney same for fybromyalgia diagnosis to nerolgist says my chronic shoulders armpit pain is migraine with no headache then we suffer more sycosomatic to I've read with Asperger's ADHD hypomobility so I do not no what's causing my pain have you tryed hypomobility clinic in London
@@Truerealism747I'm no doctor, but could that be Thoracic Outlet Syndrome and/or foraminal stenosis in the cervical spine? (Thought of it because I have foraminal stenosis causing shoulder/arm pain--and also numbness--and have been referred to neurosurgery for ACDF to get the disc herniations and bone spurs out of the way of my spinal cord and arm nerves. I have hEDS.)