Anyone giving a thumbs down on a health update vlog really needs to consider their motivation. This is Sophie's channel. Where she shares what her life is like. Until you deal with a debilitating chronic illness, you have no idea how it colors every aspect of life. I come here to watch Sophie do a lot of different things I enjoy. Travel, her declutter series, always searching for products that are cruelty-free, and all the other fun content. She discusses taboo subjects, inclusivity, ethics and respect. So as Sophie asked, if you take the time to watch the video and feel the need to hit that button, take a second to explain yourself. Otherwise, it's impossible for Sophie to not take it personally. It's hurtful and helps no one. If you can't explain your dislike rationally, perhaps just stop the video, move along and back away from the keyboard! 🤷
Also, some people literally see the subject of a video and thumb it down without even watching it. -_- (And sometimes these people come in droves, for some reason.)
So happy you are getting the help you need now. I'm still in the process, been diagnosed with possible chronic pain on top of my cfs and still waiting to see a neurologist. It's so tough going to appointment after appointment seeming to not get anywhere but when they listen and have an idea of what it is it's such a relief. Makes you feel like you are actually ill and it isn't just in your head
havent wathced this whole vid yet cause i really need to go to bed now, BUT feel the urge to say that i really really appreciate you´re openness about your health and life. i really love your style. honest, human and with humour all though it is about serious stuff. i can relate so much to your symptoms and feelings and how it all impacts life. love you and am so grateful for your sharings! and would love to see more of your health-related videos. there are always some ppl that do shitty and random stuff on the internet, so i think we all can practice to give a f.. to alot of that.. and stay true to our selves and our inspiration. big
I’m so pleased that you now have the correct diagnosis. It’s affirming to have a Specialist confirm you have a recognised condition. My GP is lovely, but now that I have the CFS diagnosis, she isn’t willing to refer me for a MRI. Every new or bizarre symptom I mention, I’m told it’s all part of CFS.....
I have the same thing. That is the problem when every little new issue you get potentially could just be a symptom. But then again it may not be. The problem is that many of the symptoms are so broad that they could be symptoms of many things, so those have to be ruled out.
Your relief is visible, an no wonder! Such a long wait, and still more discoveries to come. Glad for you, that you have got to this milestone. Hopefully more things will now fall into place and make sense. xx
Thank you. Even though a big moment, like you say I feel there's more to come with all this. But still a big step and validation it's worth pushing on. xx
I think one of main issues with misdiagnosis is that GPs don't have the time to sit through all your notes and put all the dots together. They probably just see a snapshot of it before you walk in and then they have 10-15 minutes to listen to you then it's on to the next patient. It's a shame that we can't all get in-depth examinations of our health as who knows how may people have undiagnosed conditions they don't know about! I'm glad you have your diagnosis now. It's a shame about the having children part but at the end of the day your health is the most important. Having a 7 Ib baby inside of your body will put so much strain on your pelvis so it's probably a good thing the doctor told you to consider it carefully. There's always adoption, fostering or surrogacy so there are other options out there if you really want to pursue motherhood. My IBS has made me realise I can't have children due to my symptoms but I've learnt to accept it :)
I am so pleased to hear you have finally getting a diagnosis I know what a relief it can be, I got mine last year after them thinking it was CFS as PPMS sadly there isn't anything available for me at the moment unless I have pots of money and my mobility is very badly affected but at least I know what it is, take care Soph xx
Happy that you finally have a correct diagnosis! I’ve been following the journey for a while so it’s good to see you finally getting somewhere. Thanks for sharing these types of videos. It gives hope that people out there can get the correct diagnosis. These types of videos are helpful, especially if people might have similar symptoms so anyone giving it a thumbs down should realise if it’s not for them, it might help someone else! Hope you’re okay x
Thank you for doing this video Sophie, you've got me all fired up to pursue a diagnosis. Just about all the things you mentioned I have also, even the weird ones like a dislocating cracking painful jaw which my doctor wouldn't refer me for as he said they would inject my jaw which would be horrific! I have a daughter and whilst I was pregnant my hips, pelvis and back would dislocate a lot, I knew that was happening to my body but when I told people including the doctor they dismissed everything to pregnancy. After I had my daughter all of my GI issues got worse and my hip was terrible. I know that pregnancy can be more difficult and complex with EDS mine was but I was completely oblivious really just miserable! I think my daughter has EDS too, she had to wear splints on her legs as a child because she was so hypermobile. However I would not let that out you of having children, 'what ifs' could stop you doing everything! Also bollocks! To those giving you a thumbs down for talking about health, disability and chronic illness, I've discovered some people don't like you talking about these things at all ever! You should also now think about going for pip again x
I'm so pleased you've got a diagnosis at last. You've been through so much to get to this point. Is there much that can be done treatment wise with EDS?
I just found your channel by searching cfs into youtube...and instantly by looking at you before you even opened your mouth to speak I thought you have EDS! I had CFS for 15 years then EDS classic diagnoses but had to see dr outwait and dr hakim for diagnoses as nhs said it was anxiety.
Hi David! Thank you for leaving a comment. May I ask what hinted to EDS from your point of view, visually. It’s be interesting to know. It’s hard not to feel doubtful about diagnoses you get when they’ve been wrong before! X
@@SophieEggleton anyone with cfs diagnoses who are slim prominent features thin nose fingers etc I feel cross over to hypermobility, or and eds. I'm no doctor so don't listen to me! It's just you look like me and I have eds classic. It means nothing really as you get very large people with eds too so my theory means nothing lol. I had to see Dr outhwaite and Dr hakim for eds classic diagnosis as nhs rheumatologist said anxiety I had. I hope you are well ❤️
Sophie it was very brave of you to post this and you deserve utter respect ❤️. You've always come across to me as a genuinely lovely and strong person, considering life seems to have thrown a lot your way! Keep going and don't change! Also I actually work in healthcare assisting nurses and find anything like this interesting.
Hi Sophie, I am really glad you finally got a diagnosis, I have EDS hypermobility type although not being tested for the others, I had CFS 9 years until diagnosis, I have 2 kids, first pregnancy at age 33 was okay no major issues except I did have premature rupture of membranes which is common in EDS at 35 weeks, my son was fine though, did have issues with very long labour, I dont know if he has EDS, he had a hernia and had an op for it but quite healthy, my other son was overdue at 42 weeks and then emergency C section, I had issues with anaesthetic and spinal block only 3rd one worked, he has autism, but quite high functioning , it has been hard though, there is growing evidence of a link between EDS and autism esp hypermobility type, my autistic son is hypermobile and has had some issue but not that severe he is 11 and in a specialist school, both sons have anxiety which is common in EDS, tbh i am glad I did not know I had it, but it has and continues to be tough, I have chronic illness and a son with special needs, but he is very high functioning, I would suggest adoption, or maybe just have 1 child and see how it goes after genetic tests have ruled anything out, I did have back pain with second and they said after that birth that if I had a third I would have an elective C section as I had issues with the babies coming out basically lol! I dont know how old you are? My partner has some traits of autism, whereas I dont think your partner does, so I think you may well be fine, its a hard decision, kids are amazing though, you would be an amazing mother, definitely have kids, its just how and when etc, I do think knowing is better and you can get proper advice and monitoring etc
Just want to add I have several friends who have EDs all have several kids though there is a very high incidence of autism but generally higher functioning type, they did have some issues with pregnancy and birth like I did but not insurmountable, its quite a lottery though, but sometimes in life you have to take a chancex
I need to consider seeing someone, since I have CFS and was diagnosed with severe bilateral nerve damage and bone deterioration (they say it’s Degenerative Disk Disease). Though the anesthesia worked with my son, however when I went into labor with my daughter 4 years later, the anesthesiologist tried 3 times to get the epidural to “take” and it just wouldn’t work. I felt a slight warm spot in the area, but it didn’t numb anything and he was both mortified and mystified. I always thought my flexibility was normal as a child, but I’m 32 and now all kinds of stuff is going wrong related to this.
Hello I am now really scared because of the Video and your comment. I am also tired all the time... But not other symptoms. No pain and stuff, also able to sleep, no hypermobility. Could it be Ehlers?!
I feel as though I know so many people with EDS and POTS, which are both "extremely rare conditions"?! I totally agree with those who say they are fairly common conditions but widely underdiagnosed. Those I know who went to doctors, even certain kinds of specialists, (note: the patients were *all women*) were totally dismissed for years and years. If these were more accepted conditions, maybe the doctors would know more about your subset! I'm just annoyed with that. Interesting to hear about, though I am sorry about the pain and exhaustion of course. :( But seriously, what a freaking relief to have some sort of diagnosis after so much gaslighting by doctors as well as friends and family...
I completely agree. I just think it’s often being misdiagnosed as, anxiety, or IBS or cfs, and a whole host of other illnesses. I just don’t know what needs to happen to make the gps realise this is something they need to know about and be up to research on. How many times do they need to miss the diagnosis for years on end before they go right, I needed broaden my understanding so I can spot this next time. I guess while idiots are still writing articles in big papers about women people hysyerical or these illnesses being in our heads progress is going to hindered in terms of research and greater understanding! But thank you, you’re so right. What a relief at last!
I dont know anything about EDS, never even heard of it, but I have seen one of your previous vlogs about CFS/ME. I was just wondering, have you actually been diagnosed with CFS/ME? I've been trying to get a diagnosis for almost 30 years but as you know, its not easy.
You should look into it online if you can. It’s amazing how many people are misdiagnosed with cfs/me and it turns out they actually have Eds, Lyme, fibromyalgia etc. As you will know by now a lot of doctors aren’t hugely knowledgeable about these overlapping illnesses and don’t always do the required testing to eliminate and whittle down the possible. I had a doctor diagnose cfs in that we did lots of tests etc and discounted lots of other things and she said said ‘ I think it’s just cfs, but there’s nothing I can do for you’ or something to that effect. Being diagnosed by specialist at the hospital as having Eds and pots I feel a bit more confident about this one. Although chronic fatigue is part of this too. I hope you get a cemented diagnosis soon. Keep pushing x
@@SophieEggleton I first showed symptoms of fatigue when I was 9 years old. I knew back then that there was something not right. I didn't have half the energy of all the other kids and I just wanted to shut my eyes all day and fall asleep. The GP looked at me and said 'you're fine, its just part of growing up'. I felt so lost because I knew he was wrong and I was ill, but at nine years old what can you do? I spent my school days in a haze falling asleep in class, branded as being lazy and feeling isolated always in a brain fog of discomfort that no one else had an inkling about. I never excelled academically but managed to scrape a B in English GCSE. I flunked college for three years, only turning up to get my mark. Since then I've spent my whole life living in this secret agony of fatigue being outcast by medical professionals. I've actually lost my will with the NHS, specialists and getting fixed. I just live a day at a time in a nihilistic bubble of misery. What even happens if you get diagnosed? There's no cure. There'll be no benefits. I can still get up in a morning and my symptoms aren't often visible to the outside world. To the average Joe I'm just a tired man. Society doesn't understand that sleep doesn't regenerate me. On a good day I can go to sleep and wake up feeling even worse whether I've had 9 hours or 4 hours. My body continually aches and my mind runs this loop of depression and anxious thoughts, a process that can't be broken. I've hit a really low point recently, hence the above rant. You seem like you're coping with things the best one can. I guess I should keep pushing for a diagnosis but part of me just feels 'whats the point?'
So glad you've finally got a diagnosis i hate waiting I've now been diagnosed with so many things over the past eight years at fifteen I had one diagnosis now I have eight different diagnosis thanks to different consultants in the areas my rheumatologist i used to have used to pay more attention to the book id been reading in the waiting room than my health now my new one has given me a nurse, an emergency hotline and medication making my life better the NHS can be so draining over the years so true 💖
Glad you got some answers. Do your siblings have any of your symptoms? My cousin and his wife found out they likely won't be having kids due to health reasons. So instead they got a dog. It isn't the end of the world not having kids either, and they can be very hard work. But you never know what is around the corner and how things will turn out. These types of issues are not something that healthy people can relate to unless they have been though it, so they are often not sympathetic and can treat affected people as hypercondriacs, and this can be one of the hardest things with living with these types of invisible illnesses.
I"M SO HAPPY FOR YOU TO FINALLY GET A DIAGNOSIS! I remember thinking it ages ago when you were mentioning hypermobility! In terms of children/parenting, if you haven't already, I'd recommend following When Tania Talks - ru-vid.com
Hey Soph I'm so glad you've finally got your diagnosis I've been following your progress for a while now. Just a question did you get referred to specialist from your gp. My gp is lovely but think she's hit a brick wall. I think I have Potts and eds aswell as my CFS. Would like to find a specialist that would take me on private if need be. Chuffed for you though even if it's a bit of a double negative and the start of a long journey. Just to say I have had two children and two c sections after a failed natural delivery the first time and don't have to many complications now xx
Yes my order of progress was taking the information my private osteopath gave me (her theories about what was going on). Tell my gp, who was then pushed to consider my medical history then started to see there was something worth exploring. She referred me to rheumatologist. He said he didn't think I had but booked me in for MRI, pediatrist and lots of bloods. Went to see pediatrist and told him what the rheumalogist said and he pulled a face and looked over some things and encouraged me not to see that specialist again but his testing was very outdated. Thought I was gonna to get same specialist to go over my bloods and MRI and it turned out to be another guy who was happy to disagree with the other specialist. So I'd say even if you get a no from the first specialist don't necessarily give up! Good to hear that you don't have many complications now, I guess you just hope for the best and look after yourself best you can knowing the conditions you have x
Dear Sophie, I have EDS, POTS, MCAD, and CFS. I am currently pregnant. I want to message you privately so we can chat and do all I can to help you. Is your e-mail posted anywhere or would it be best to message you on Instagram?
