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Gutted
Hi all had my first appointment yesterday with the lymphoedema nurse yesterday he was lovely.When I asked him if I had it he said yes I was gutted.As I had myself convinced that I didn't have it my left leg is a bit bigger than the right and it's right up to my tummy I thought it was just below my legs
Hi all had my first appointment yesterday with the lymphoedema nurse yesterday he was lovely.When I asked him if I had it he said yes I was gutted.As I had myself convinced that I didn't have it my left leg is a bit bigger than the right and it's right up to my tummy I thought it was just below my legs
lizmurphy61
in
LSN
8 years ago
hi I am new here :)
hi I was just wondering I was diagnosed with hypermobility syndrome at 17 but have recently been re-diagnosed with Ehlers-Danlos syndrome, I had never heard of it before and it hasn't been really explained to me properly as of yet but aren't the same thing basically
hi I was just wondering I was diagnosed with hypermobility syndrome at 17 but have recently been re-diagnosed with Ehlers-Danlos syndrome, I had never heard of it before and it hasn't been really explained to me properly as of yet but aren't the same thing basically
Hidden
in
Ehlers-Danlos Support UK
8 years ago
First Aid for bleeding. Part 2: New gauzes and powders
There is a whole range now of gauzes which do not have to be removed: they dissolve. Does anyone know which ones are the best? I have chosen to carry in my briefcase something that is cheap, individually wrapped for travelling. I would use it as my first line of attack, then stuff on top the less sterile
There is a whole range now of gauzes which do not have to be removed: they dissolve. Does anyone know which ones are the best? I have chosen to carry in my briefcase something that is cheap, individually wrapped for travelling. I would use it as my first line of attack, then stuff on top the less sterile
ILowe
in
AF Association
8 years ago
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Fertility treatment/egg freezing and Ehlers Danlos/POTS syndromes- anyone out there with same story?
Hi there I am new to the forum. Have Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome, syncope and for the last 3 years been through hell. Finally getting some answers but it's been tough. With everything that happened the last few years (falling ill, loosing my job, having to
Hi there I am new to the forum. Have Ehlers Danlos Syndrome type 3, Postural Orthostatic Tachycardia Syndrome, syncope and for the last 3 years been through hell. Finally getting some answers but it's been tough. With everything that happened the last few years (falling ill, loosing my job, having to
Jennyfromtheblock
in
Fertility Network UK
8 years ago
Has anyone with EDS had fertility treatment/issues with pregnancy?
Hi there I am new to the forum. Have EDS type 3, POTS, syncope and for the last 3 years been through hell. Finally getting some answers but it's been tough. With everything that happened the last few years (falling ill, loosing my job, having to relocate back to my mum's in rural middle of nowhere I
Hi there I am new to the forum. Have EDS type 3, POTS, syncope and for the last 3 years been through hell. Finally getting some answers but it's been tough. With everything that happened the last few years (falling ill, loosing my job, having to relocate back to my mum's in rural middle of nowhere I
Jennyfromtheblock
in
Ehlers-Danlos Support UK
8 years ago
RA or Psoriatic arthritis?
Hi All, I am looking for your expert opinion please. I have had intermittent small joint pain and back/pelvis pain for about 10 years. My blood work has always come back negative. My aunt has had RA for the past 20 years and has suffered badly with it. About a year ago my GP ran some more bloods as my
Hi All, I am looking for your expert opinion please. I have had intermittent small joint pain and back/pelvis pain for about 10 years. My blood work has always come back negative. My aunt has had RA for the past 20 years and has suffered badly with it. About a year ago my GP ran some more bloods as my
Katt
in
NRAS
8 years ago
Hypermobility sucks!
i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help
i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help
Archerchick
in
Foggy's "Invisible Illness" Support
8 years ago
Hypermobility sucks!
i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help
i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help
Archerchick
in
Action on Pain
8 years ago
Hypermobility sucks! Someone help!
So i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help!!
So i suffer from Joint hypermobility syndrome where all of my joints constantly click and give way. At the moment i am struggling withthe pain and i really need some help. I cant keep taking tablets because I'mbecoming immune to them. Someone help!!
Archerchick
in
Pain Concern
8 years ago
Warning to all with an autoimmune disease, I have Lupus and Sjögren's. I also have Ehlers Danlos syndrome and am going for genetic testing.
Hi folks just a word of warning if you have SS or Lupus RA or PsA and are 'double Jointed' hyper mobile. Please tell your consultants, GP and dentist. Never assume your pain is autoimmune related if your hyper mobile. I have Ehlers Danlos too and don't let any consultant do to you what they have due
Hi folks just a word of warning if you have SS or Lupus RA or PsA and are 'double Jointed' hyper mobile. Please tell your consultants, GP and dentist. Never assume your pain is autoimmune related if your hyper mobile. I have Ehlers Danlos too and don't let any consultant do to you what they have due
Pam-EDS
in
LUPUS UK
8 years ago
Lupus EDS POTS SjS
I'm 69 and Still awaiting a complete diagnosis of my type of EDS but I'm getting there! I am determined to get this for my sons dead and alive. I was finally diagnosed with Sjögren's but it wasn't it was Lupus from age 3. I said to my consultant ophthalmologist i was born with an umbilical hernia a lazy
I'm 69 and Still awaiting a complete diagnosis of my type of EDS but I'm getting there! I am determined to get this for my sons dead and alive. I was finally diagnosed with Sjögren's but it wasn't it was Lupus from age 3. I said to my consultant ophthalmologist i was born with an umbilical hernia a lazy
Robin1974
in
Endometriosis UK
8 years ago
Sore and stiff joints
After years of being misdiagnosed! 50yrs of stiff muscles and sore joints, Joint Hyper-mobility now diagnosed! Would like to hear if you have this too,
After years of being misdiagnosed! 50yrs of stiff muscles and sore joints, Joint Hyper-mobility now diagnosed! Would like to hear if you have this too,
marahmoo
in
Ehlers-Danlos Support UK
8 years ago
EDS? Where do I go to get diagnosed? PS I'm new to this forum.
I was diagnosed with fibromyalgia in 2008. For the last year or more I've been putting the puzzle pieces together and am wondering if I have EDS hyper mobility. I can't stand for too long, my hips click as I walk and I can bend in most of the ways on the EDS chart. I mentioned it to my primary care
I was diagnosed with fibromyalgia in 2008. For the last year or more I've been putting the puzzle pieces together and am wondering if I have EDS hyper mobility. I can't stand for too long, my hips click as I walk and I can bend in most of the ways on the EDS chart. I mentioned it to my primary care
vfriend
in
Ehlers-Danlos Support UK
8 years ago
Seeking Diagnosis
Hi, I am 29 and currently in discussion with my GP about possible diagnosis of EDS HT. I have hypermobile joints which in and of itself has just been one of those things but I also have uterine prolapse, which for someone my age who hasn't had children is very unusual according to my doctor. I get quite
Hi, I am 29 and currently in discussion with my GP about possible diagnosis of EDS HT. I have hypermobile joints which in and of itself has just been one of those things but I also have uterine prolapse, which for someone my age who hasn't had children is very unusual according to my doctor. I get quite
Canna_Lily
in
Ehlers-Danlos Support UK
8 years ago
rethink fibro
About 18 months there was a study that showed those diagnosed with fibro fit the diagnostic criterium for hypermobility ehlers danlos syndrome here is the diagnostic criterium http://www.ednf.org/nosology
About 18 months there was a study that showed those diagnosed with fibro fit the diagnostic criterium for hypermobility ehlers danlos syndrome here is the diagnostic criterium http://www.ednf.org/nosology
rightmerca
in
Fibromyalgia Action UK
9 years ago
please someone help me
hi so I posted on here abut 5 days ago now explaining how me and my partner had sex for the first time around 4 months ago unprotected as I'm on a contraceptive pill we don't see any need to use condoms and I hd tests before I slept with him I'm 18 ad ive had only 2 other sexual partners both had to
hi so I posted on here abut 5 days ago now explaining how me and my partner had sex for the first time around 4 months ago unprotected as I'm on a contraceptive pill we don't see any need to use condoms and I hd tests before I slept with him I'm 18 ad ive had only 2 other sexual partners both had to
helpme2308
in
BASHH
9 years ago
Anyone with Joint hypermoblilty syndrome
i am only 16 and i have had this all my life. starting to hurt my wrist too...anyone to reply to me http://www.nhs.uk/conditions/joint-hypermobility/Pages/Introduction.aspx what NHS has too say about it
i am only 16 and i have had this all my life. starting to hurt my wrist too...anyone to reply to me http://www.nhs.uk/conditions/joint-hypermobility/Pages/Introduction.aspx what NHS has too say about it
stefaniex
in
Fibromyalgia Action UK
9 years ago
Eds and eyes!
Just a quickie everyone - I've just found out I need surgery on my eyes for small retinal holes and a build up of fluid. As the eye is made up of 80% collagen I wondered if there was a link to my eds. anyone else experience of this? The consultant didn't have much experience of eds but knew there were
Just a quickie everyone - I've just found out I need surgery on my eyes for small retinal holes and a build up of fluid. As the eye is made up of 80% collagen I wondered if there was a link to my eds. anyone else experience of this? The consultant didn't have much experience of eds but knew there were
Fhfay
in
Ehlers-Danlos Support UK
9 years ago
Hypermobility
Most people would see this as a positive as most people don't have the extreme pain and other symptoms that come with it. I just wanted to raise awareness for the negative sides of Hypermobility and Hypermobility Syndrome, as many people would just see the positives of being 'stretchy'. Stretchy isn't
Most people would see this as a positive as most people don't have the extreme pain and other symptoms that come with it. I just wanted to raise awareness for the negative sides of Hypermobility and Hypermobility Syndrome, as many people would just see the positives of being 'stretchy'. Stretchy isn't
Stretchygirl
in
Foggy's "Invisible Illness" Support
9 years ago
Feel This Pain: Ehlers-Danlos
Much more than just a "stretchy skin" disease, Ehlers-Danlos is a very painful syndrome with very real consequences for those who have it. #EhlersDanlos #dontpunishpain #GivePainAVoice https://youtu.be/TZRXlRd4Kgs Image Credits: "Ehlers-Danlos syndrome4" by Piotr Dołżonek - see below. Licensed under
Much more than just a "stretchy skin" disease, Ehlers-Danlos is a very painful syndrome with very real consequences for those who have it. #EhlersDanlos #dontpunishpain #GivePainAVoice https://youtu.be/TZRXlRd4Kgs Image Credits: "Ehlers-Danlos syndrome4" by Piotr Dołżonek - see below. Licensed under
Hidden
in
LUPUS UK
9 years ago
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