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Ataxia and EDS
I have an unknown type of ataxia, thought to be genetic. I have many gastrointestinal problems and autoimmune problems with heart racing and body slowness. Many of my problems sound much like EDS symptoms. My neice has type 3 EDS. is it possible for me to have both EDS and ataxia, and can EDS cause neurological
I have an unknown type of ataxia, thought to be genetic. I have many gastrointestinal problems and autoimmune problems with heart racing and body slowness. Many of my problems sound much like EDS symptoms. My neice has type 3 EDS. is it possible for me to have both EDS and ataxia, and can EDS cause neurological
pennypoop
in
Ehlers-Danlos Support UK
9 years ago
Just diagnosed
Hi, I've just been diagnosed with hypermobility EDS type 3 .... Which goes some way to explain my very poor healing after surgery. There was some concern about heart valves. Both the consultant and my gp could hear an abnormality. Is this a normal thing with EDS? Suzysheep
Hi, I've just been diagnosed with hypermobility EDS type 3 .... Which goes some way to explain my very poor healing after surgery. There was some concern about heart valves. Both the consultant and my gp could hear an abnormality. Is this a normal thing with EDS? Suzysheep
Suzysheep
in
Ehlers-Danlos Support UK
9 years ago
Hughes, Sjogrens and Ehlers Danlos Syndrome
Hi, Just wondered if anyone else has been diagnosed with Ehlers-Danlos Syndrome (inheritable connective tissue disorder) along with their Hughes, Sjorgrens etc? I just wondered as those with EDS tend to metabolize drugs more rapidly, so wondered how others might cope with what appears to be quicker
Hi, Just wondered if anyone else has been diagnosed with Ehlers-Danlos Syndrome (inheritable connective tissue disorder) along with their Hughes, Sjorgrens etc? I just wondered as those with EDS tend to metabolize drugs more rapidly, so wondered how others might cope with what appears to be quicker
floss112
in
Hughes Syndrome APS Forum
9 years ago
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Warfarin and burns.
Burned my wrist last week on an oven shelf and, despite doing all the obvious things, healing has been a problem. A pharmacist told me yesterday that warfarin is to blame. Has anyone else experienced similarly? Was told not to use creams but an ointment ( Germolene ) instead, though all three local
Burned my wrist last week on an oven shelf and, despite doing all the obvious things, healing has been a problem. A pharmacist told me yesterday that warfarin is to blame. Has anyone else experienced similarly? Was told not to use creams but an ointment ( Germolene ) instead, though all three local
Penny_08
in
AF Association
10 years ago
Where all my bendy people at?
Who else is hypermobile (either through EDS or BJHS)? What problems do you have on a regular basis (either through running or not)? What help can we offer to newbie hypermobile runners? In short: Where all my bendy people at?
Who else is hypermobile (either through EDS or BJHS)? What problems do you have on a regular basis (either through running or not)? What help can we offer to newbie hypermobile runners? In short: Where all my bendy people at?
hose1975
Graduate
in
Couch to 5K
10 years ago
Does anyone have EDS and Parkinson's?
I have had EDS/hypermobility syndrome since 2001. And now I am experiencing many of the symptoms of Parkinson's, including internal tremors (which are mainly around my loosest joints), stiffness and rigidity, head/neck aches, a leg that feels disconnected and drags sometimes, losing facial expressions
I have had EDS/hypermobility syndrome since 2001. And now I am experiencing many of the symptoms of Parkinson's, including internal tremors (which are mainly around my loosest joints), stiffness and rigidity, head/neck aches, a leg that feels disconnected and drags sometimes, losing facial expressions
earthdweller
in
Ehlers-Danlos Support UK
10 years ago
Hypermobility and ra
I have been trying to find anything on the Internet about having both conditions and maybe I can find someone one here... my rhumy concentrates on the ra and brushes off the hypermobility. Saying that I can't do anything and it'll always be painful. I find it hard sometimes distinguishing pain between
I have been trying to find anything on the Internet about having both conditions and maybe I can find someone one here... my rhumy concentrates on the ra and brushes off the hypermobility. Saying that I can't do anything and it'll always be painful. I find it hard sometimes distinguishing pain between
lolly_mitchell
in
NRAS
10 years ago
joint pain but no tenderness - possible?
Is it possible to get joint pain without tenderness? i can feel a pain emanating from my finger joints/wrists (which lasts a few seconds, sometimes a few minutes and then goes away) but when i palpate it, squeeze it, press down on the joint I can't seem to locate the pain or feel any tenderness in the
Is it possible to get joint pain without tenderness? i can feel a pain emanating from my finger joints/wrists (which lasts a few seconds, sometimes a few minutes and then goes away) but when i palpate it, squeeze it, press down on the joint I can't seem to locate the pain or feel any tenderness in the
brendala
in
NRAS
10 years ago
Does anyone else suffer from ITCHING? I have R A and inject methotrexate. I get the most dreadful in various place,often on my shoulder
Blades . It is so bad it is really painful.. Sometimes Savlon helps it lasts for a couple of hours or longer.tonight it is driving me mad on the tops of both arms and on my left shoulder blade. I believe it is a side effect of MTX. I daren't scratch it makes it worse. Don't know how to relieve it.
Blades . It is so bad it is really painful.. Sometimes Savlon helps it lasts for a couple of hours or longer.tonight it is driving me mad on the tops of both arms and on my left shoulder blade. I believe it is a side effect of MTX. I daren't scratch it makes it worse. Don't know how to relieve it.
Hidden
in
NRAS
10 years ago
Hi, is it possible to have more than one type of Eds?
I have three children , two of whom have numerous symptoms of different types of Eds . We are going to see the GP tomorrow - I am dreading it. Ideally I would like the children to be referred to a consultant with expertise as we have extensive family history of EDS going back three generations also
I have three children , two of whom have numerous symptoms of different types of Eds . We are going to see the GP tomorrow - I am dreading it. Ideally I would like the children to be referred to a consultant with expertise as we have extensive family history of EDS going back three generations also
Bubbins3
in
Ehlers-Danlos Support UK
10 years ago
Does anyone else have lupus and hypermobility syndrome?
Hi all :) I have had a variety of autoimmune diseases over the last ten years (I was diagnosed with MCTD originally but after four years I was told this had progressed into lupus alone). I did however feel glad I had a solid diagnosis and generally I have been reasonable well for a while now. However
Hi all :) I have had a variety of autoimmune diseases over the last ten years (I was diagnosed with MCTD originally but after four years I was told this had progressed into lupus alone). I did however feel glad I had a solid diagnosis and generally I have been reasonable well for a while now. However
stephaniemae
in
LUPUS UK
10 years ago
Does anybody have problems with there Dip and Pip joints feeling like there popping out?
I've noticed this before when I'm flaring. But it feels like the Dip joint (closest to nail) and pip (middle knuckle) just want to pop out and they crackle. This is without any pressure being put on the joint. I can feel the joint crack and move as if they are not stable. I have days where these joints
I've noticed this before when I'm flaring. But it feels like the Dip joint (closest to nail) and pip (middle knuckle) just want to pop out and they crackle. This is without any pressure being put on the joint. I can feel the joint crack and move as if they are not stable. I have days where these joints
Jo883
in
LUPUS UK
10 years ago
Anyone: have you been diagnosed with Achenbach syndrome (paroxysmal haematoma of fingers (& toes)) or Ehlers Danlos?
In September I posted a ? asking if anyone has what I called "tissue bleeds" in their fingers & toes, and I described my version of these. Basically, they don't start due to injury or friction necessarily. At first there is redness, swelling and burning pain, then the deep bleed is red & blue, leaving
In September I posted a ? asking if anyone has what I called "tissue bleeds" in their fingers & toes, and I described my version of these. Basically, they don't start due to injury or friction necessarily. At first there is redness, swelling and burning pain, then the deep bleed is red & blue, leaving
Barnclown
in
Scleroderma & Raynaud's UK (SRUK)
11 years ago
Just been diagnosed
I have got,amongst a raft of things, Ehlers Danlos syndrome, anyone else have it?
I have got,amongst a raft of things, Ehlers Danlos syndrome, anyone else have it?
RachaelLouisewithFibro
in
Fibromyalgia Action UK
11 years ago
Mashed up knee................
Well what a couple of days i have had.We went down to Cambridgeshire to see family and was having a lovely time until last night. Was out for a drink(no i don't drink) and i wanted to take some photos of Ely cathedral when i fell on some rough paving and footpath. In one respect i was lucky as i was
Well what a couple of days i have had.We went down to Cambridgeshire to see family and was having a lovely time until last night. Was out for a drink(no i don't drink) and i wanted to take some photos of Ely cathedral when i fell on some rough paving and footpath. In one respect i was lucky as i was
sylvi
in
NRAS
11 years ago
Can the non dominant side of the body be more affected in EDS and also is it a feature of EDS for feet to turn inwards ?
Hidden
in
Ehlers-Danlos Support UK
11 years ago
Do you ever wonder whether you have been misdiagnosed or have another illness running alongside EDS?
Hi all, just wondering whether any of you ever wonder whether you've been misdiagnosed or may have another illness running alongside your EDS. I ask as I have been diagnosed with Hypermobility Syndrome/EDS Hypermobility type (depending upon which Dr you speak to) but at the same time other women in
Hi all, just wondering whether any of you ever wonder whether you've been misdiagnosed or may have another illness running alongside your EDS. I ask as I have been diagnosed with Hypermobility Syndrome/EDS Hypermobility type (depending upon which Dr you speak to) but at the same time other women in
Springsong
in
Ehlers-Danlos Support UK
11 years ago
PODIATRY APPOINTMENT YESTERDAY
Well i got my podiatry appointment yesterday and they asked WHY had i not come sooner. hey I SAID I HAVE BEEN GOING TO THE DOCTORS ASKING FOR THIS FOR MONTHS and months. well the old toes seemed to be healing quite good i thought with me savlon cream i found that worked she tested my pulses feet
Well i got my podiatry appointment yesterday and they asked WHY had i not come sooner. hey I SAID I HAVE BEEN GOING TO THE DOCTORS ASKING FOR THIS FOR MONTHS and months. well the old toes seemed to be healing quite good i thought with me savlon cream i found that worked she tested my pulses feet
minka
in
NRAS
11 years ago
Daflon 500mg. This may be beneficial to lymphedema. Has anyone used this drug? Does it help?
clown
in
LSN
11 years ago
itchy rash :( need help!
ok so 2 days ago i noticed a red bumpy rash all over my bump (29 weeks), I had been scratching like mad all day so assumed it was just a pregnancy rash. Yesterday it seemed to get worse so i called my maternity unit but advised that i call the doctor on call as there is an outbreak of chicken pox atm
ok so 2 days ago i noticed a red bumpy rash all over my bump (29 weeks), I had been scratching like mad all day so assumed it was just a pregnancy rash. Yesterday it seemed to get worse so i called my maternity unit but advised that i call the doctor on call as there is an outbreak of chicken pox atm
ashy2005
in
Pregnancy and Parenting Support
11 years ago
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