Rynards dease: Hi my name is Beccy and... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Rynards dease

beccs1 profile image
18 Replies

Hi my name is Beccy and today i have

just been told i got Raynards dease.

Raynaud's disease and Raynaud's phenomenon are rare disorders that affect blood vessels. These disorders are marked by brief episodes of vasospasm (narrowing of the blood vessels). Vasospasm causes decreased blood flow to the fingers and toes, and rarely to the nose, ears, nipples, and lips. The fingers are the most commonly affected area, but the toes also are affected in 40 percent of people with Raynaud's.

he antiphospholipid syndrome is a disorder of the immune system that is characterized by excessive clotting of blood and/or certain complications of pregnancy (premature miscarriages, unexplained fetal death, or premature birth) and the presence of antiphospholipid antibodies (cardiolipin or lupus anticoagulant antibodies) in the blood. Patients with antiphospholipid syndrome have developed abnormal symptoms while having antiphospholipid antibodies that are detectable with blood testing.

Antiphospholipid syndrome is also called phospholipid antibody syndrome. Antiphospholipid syndrome has been referred to as Hughes syndrome in honor of the doctor who first described it.

It is important to note that antiphospholipid antibodies can also be found in the blood of individuals without any disease process. In fact, antiphospholipid antibodies have been reported in approximately 2% of the normal population. Harmless antiphospholipid antibodies can be detected in the blood for a brief period occasionally in association with a wide variety of conditions, including bacterial, viral (hepatitis, HIV), and parasite (malaria) infections. Certain drugs can cause antiphospholipid antibodies to be produced in the blood, including antibiotics, cocaine, hydralazine, procainamide, and quinine.

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18 Replies
Suzypawz profile image
Suzypawz

I too have Raynauds, its usually not too bad, but starts if the weathers cold, out with the pets, in the garden, travelling a distance or on computr too long!

Hope you are feeling well, Sue x

beccs1 profile image
beccs1 in reply to Suzypawz

oh right mine not to bad at the mo

Sue2803 profile image
Sue2803

I too have reynauds but am having successfultreatment with prozac (the anti depressent), evidently they are not sure why this works but it does.

beccs1 profile image
beccs1 in reply to Sue2803

Hi Sue i have just come of my antdepressnats

Andy_A profile image
Andy_A

Reynauds was among the first clues I had something going on with my immune system, I have one thumb on which the nailbed gots the colour of a corpse from time to time, but thats all.

In itself Reynaulds normally only has nuisance value, but has been said it often arises as a secondary condition to an auto immune disorder,

Andy

beccs1 profile image
beccs1 in reply to Andy_A

poor u Andy oh right ok thanx

Carole-J profile image
Carole-J

Hi Beccie Raynauds Disease and Raynauds Phenonemon are slightly different. Disease is usually the bad circulation etc on its own. Phenonemon is usually with other (auto immune included) added problems. Why not join the Raynauds Association they send quarterly magazines that are full of information and help. You will learn a lot more about your problem and how to help your self cope with it.You can also get in touch with people in your area who also suffer from it. Hope this has been of help to you I have been a member for twenty odd years now. Love Carole-J

beccs1 profile image
beccs1

ok thanx Carole

jessielou profile image
jessielou

Hi Beccie

Welcome and glad you found us. I hope you feeling well today.

I have Raynauds too, as carole says it goes along with hughes syndrome, etc.

My hands and feet drive me crackers at night, sleep in chunky bed socks and gloves, along with my Pjs it makes quite a picture, helps loads though!!!

I also get lovely purple nails especially thumbs,

Recently a friend of mine massaged my hands, it was lovely, they were warm and actually pink and looked alive. Will be begging her services again!!!

Not good int the cold, but we all learn what works for us and how to cope, at least here we can all share and help each other.

Take care, gentle hugs love Sheena xxxxxxxxxxx

beccs1 profile image
beccs1

thanx hun my hands are fine at the mo

paddyandlin profile image
paddyandlin

Hi Beccy

I also have raynaurds if you want any information on let us know.

paddy

beccs1 profile image
beccs1

that wud be lovelyto have more info on it thanx Paddy

paddyandlin profile image
paddyandlin

Hi Beccs sorry for delay this site i found gave me a welth of information on Raynaurds anything you do not understand let me know

raynauds.org.uk/

beccs1 profile image
beccs1

thanx paddy at this time im having bad time with my raynards due to no heater till i get it fixed

paddyandlin profile image
paddyandlin

yes this time of the year is a real pain

Hello

I've got it too, but I have just come back from Iceland - weirdly I have found that if i keep my wrists wrapped up warm I can mostly avoid the dreaded lost fingers! The worse is getting into a cold car in the morning and losing a finger or two on the steering wheel!! so my advice is wristwarmers - i have wooly onces that are fleece lined they only cost £10 ish and they are fabulous - and you can still operate a touch screen phone!!

Take care

Tx

beccs1 profile image
beccs1

oh right where do i those flece lined from Tasch

beccs1 profile image
beccs1

im having probs with my hands at the moment getting reall cold and sore

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