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Raynaud's Syndrome
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Advice regarding remedies [17 Feb 2010|08:46pm]
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slim_ivory_rose
Hello fellow sufferers! (sorry hope that's not offensive to anyone)

I used to get Raynauds in 1 toe, me thinking its perniosis. Now I get it in all ten toes, even today. (Sorry, I'm sure there are people here with far worse cases than mine, I don't mean to disrespect that).

I'm interested in hearing personal recommendations for any remedies / treatments /anything out there? There's such a wealth of info on the net but I do wonder how much of it is genuine.
Has anyone tried those 'hotties' you can put in your socks or gloves? They look good but in my country are single use and £1 a time.

Appreciative of any advice

Thanks
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New community for the disabled... [23 Jul 2009|09:19pm]
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coughing
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[19 May 2009|07:51pm]
igotstarlight
Hey, everyone, just found out today that I have a mild form of Reynaud's.

I went in to find out why my toes always have red spots on them. They don't bother me fortunately, but I hate how they look. The interesting thing is that the doctor told me that tonic water can help because of the quinine in it. Has anyone else ever heard of this?
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Cold hands? Don't blame it on the weather: How icy fingers could be a sign of something more serious [12 Mar 2009|01:05am]
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mischaeye
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i was this in a local newspaper the daily mail.

Cold hands are not only a sign that the weather's bitter  -  they could be a symptom of something more serious.
There are at least a dozen conditions which cause chronic cold hands, including peripheral vascular disease and ME.
But for an estimated nine million Britons, cold hands are a sign they have Raynaud's.

The condition causes the small blood vessels in the fingers, toes, ears and nose to constrict when their temperature drops.
Although it's usually worse in the winter, even in warm weather patients can suffer in the slightest temperature drop, such as moving into an air-conditioned atmosphere.
During an attack the skin visibly whitens and the area becomes numb or extremely painful. Sufferers often develop sores and patches of hard skin, which makes walking painful; because of poor blood flow their skin is also prone to ulceration and infection.
Even a moment's exposure to the cold can leave sufferers in agonising pain. As Alison Wright, a sufferer, explains: 'Just opening the front door is enough for an attack  -  you feel as if glass is being scrunched in your hands.'
'People assume Raynaud's is "just" about numb hands,' adds Alison, 37, from Portsmouth. 'In fact, you're unable to use your fingers at all. Getting coins out of your purse, keying in your pin number, unscrewing jars or just putting the key in the door become impossible.'

Chilly: Having cold hands could be a symptom of something more than the bitter weather
Nine out of every ten sufferers are female  -  it's thought that oestrogen makes the blood thicker, slowing down its flow in the tiny vessels (the symptoms often first appear with puberty and attacks can be worse at certain times in the monthly cycle, sometimes tailing off after the menopause).
The severity of the condition varies with the patient.
But the key is that the condition is diagnosed early, says Chris Denton, Professor of Experimental Rheumatology at University College London and a consultant at the Royal Free Hospital.
Not only because patients can be given treatment to reduce the debilitating effects  -  but, more importantly, to identify if it's secondary Raynaud's, which is potentially far more serious.
An astonishing half a million Britons are thought to have the secondary form  -  where their symptoms are a sign of an underlying problem.
It can be a side-effect of certain medication (such as migraine treatments, beta blockers and the Pill), or exposure to chemicals or a virus.
More worrying, their symptoms could be caused by an auto-immune disease, such as rheumatoid arthritis, lupus or scleroderma.
Some of these conditions are potentially fatal; one form of scleroderma, for instance, is linked to lung disease and problems with the kidneys, gastrointestinal system and the heart.
Raynaud's symptoms are often the first sign of the more serious health problem, says Professor Denton. For this reason it's important anyone with symptoms should be tested.
'By screening for these serious complications at the earliest stage, it means we can treat them.'
Alison Wright has secondary Raynaud's, although this wasn't discovered until her condition rapidly worsened. She was diagnosed with Raynaud's five years ago, but when treatment didn't help, a GP referred her to a rheumatologist four months later.

Don't blame the weather: A street in Glasgow last week - the cold weather is not the only reason you may get icy fingers
Blood tests revealed she has a form of scleroderma.
Her body produces too much collagen, the tissue used for building the skin, blood vessels, joints and organs. Some forms of scleroderma can cause inflammation of the skin, or growths of thickened skin.
'As well as Raynaud's symptoms, the skin on my fingers is permanently taut, shiny and can get very red,' says Alison. 'They're difficult to move. My hands are also puffy and I've had horrible ulcers on fingers and toes. It's a progressive disease and they can't tell how bad it will get.'
There is no treatment for her form of scleroderma, and she has her heart and lungs checked annually as the condition can damage the organs.
But at the moment it is the Raynaud's, not the scleroderma, which gives Alison the greatest discomfort.
'If I go into the chiller section at the supermarket, my hands go white from fingers to palms.
'At the cashier I can barely pick up the food from my trolley let alone get my money out of my purse. Even getting from the car to the house can bring on an attack so bad I cry out with pain.'
Alison, who is married to a lieutenant commander in the Navy, is keen to start a family, although she worries about the practicalities of daily life with a condition which means she can't use her hands.
Raynaud's used to be treated with surgery to the sympathetic nervous system (the nerves from the brain to the hands and feet). But because the effects are temporary and there is the risk of complications, such as nerve damage, surgery is rarely offered these days.
The most common drug treatment is with vasodilators such as ACE inhibitors or calcium channel blockers  -  these work by relaxing the blood vessels.
Prozac is also used  -  this blocks the hormone serotonin, which constricts blood vessels.
In severe cases, iloprost may be offered; this has similar properties to the natural hormone prostacyclin, which opens up the blood vessels and prevents the blood flow becoming sluggish.
'Because of the side-effects, we reserve it for the severe sufferers,' says Professor Denton. 'Many patients might have it once a year to get them through the winter.'
The risk of unpleasant side-effects with drug treatments  -  including severe headaches  -  means that those with a mild version of the condition are advised to keep fingers and feet warm with silk or thermal gloves and use hats and scarves to cover the nose, mouth and ears, as well as keeping warm generally.
Sufferers are also advised to use portable heat packs, and to keep a hot water bottle or flask of hot water in the car. Simple exercises can get the circulation going.
'Studies have shown ginkgo biloba to be helpful,' adds Professor Denton. 'And we have anecdotal evidence that ginger may help, too.'
But unfortunately for those with more severe Raynaud's, there are other problems. An infection or cut can be more serious as poor blood flow means these take longer to heal.
Also any ulcers on the fingers or toes will not heal on their own and require antibiotic treatment  -  even then, healing will be slow.
In the past Alison has been given courses of iloprost and also takes nifedipine, which helps reduce the pain of her attack.
But as other sufferers with severe Raynaud's find, the medication cannot prevent the attacks completely.
'I don't get much sympathy because people don't understand what's wrong with me,' says Alison. 'But the real worry is that many  -  but especially those who might have it  -  don't know about the condition.
• RAYNAUD'S and Scleroderma Association, 0800 917 2494, http://www.raynauds.org.uk

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i didn't know this [11 Feb 2009|07:18pm]
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mischaeye
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sick
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i am taking Sainsbury's cold and flu relief with decongestant sachets at the moment due to having a cold. the other nite i took the sachet as normal, then i came over all hot and came up in a rash over my arms and legs, also my hands were tingling. so i looked at the leaflet in the packet and it says not to use this product if you have raynaud's. have anyone else have any problems with cold products or is it just me.

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hi there [30 Jan 2009|11:50pm]
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mischaeye
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cold
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i am new to this group.  i have only been diagnose with having raynaud's for about a year now.  at the moment i am suffering with cold sores on my fingers,  and a black spot on my big toe.  i went back to my doctor about my black spot and she gave me some medication for it.  the medication is nifediipine (5mg one three times a day), so i will see how it works as i have only started taking them yesterday.  i wear fingerless gloves in the house and then put a nornal pair on, when i go outside.  i also wear a two pairs of socks indoors and a warm slippers. 

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A quick question... [30 Sep 2008|11:09pm]
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darkheartwalsh
Hi there,

I'm in my late teens and I have quite serious Primary Raynauds. I've recently been prescribed calcuim-channel blockers to help, though I have yet to start taking them. However, I've also recently been prescribed the combined pill. I know this is quite a personal question, but I was wondering about other people's experiences on taking the pill with Raynaud's, and whether or not it affected them in an adverse way, if at all.

Can you help me?
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Cozaar [31 May 2008|02:26pm]
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shanaqui
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Probably my last update about my medication, unless I have problems. I wanted to let everyone know that after being on it for two weeks, I pretty much can't recommend it enough. You definitely have to be patient and let it get into your system, but... for five days straight, I haven't had a single attack, and the last one I had was when I had my window wide open on a cool day, and it wasn't painful or particularly long-lasting.

So 50mg of Cozaar (losartan potassium) once per day is brilliant. It's worked better for me than any of the nifedipine I took, and hasn't caused any side effects beyond a lower blood pressure, which I'm working past easily enough.

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Losartan! [25 May 2008|01:38am]
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shanaqui
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pleased
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I posted a couple of times about losartan already. I'm been on Cozaar (losartan potassium) for a week now, and it definitely helps. For the first four days, it didn't: I'm told that has to do with its half life and there needing to be a steady amount in my blood. Regardless, now I think it's working well. I'm on 50mg once per day, and it's working much better than the nifedipine ever did. I have much fewer attacks and they're much milder and shorter when I do have them.

My only complaint has been that, of course, my blood pressure is lower so I find myself getting quite dizzy sometimes when I stand up too fast. I think I can adjust to that, though. No other side effects!

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Cozaar [17 May 2008|02:03pm]
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shanaqui
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I didn't get much help on my first post, here, but I thought I'd update you all anyway. I saw my doctor yesterday and after fussing around taking my pulse and blood pressure, which were both fine, he agreed to prescribe me Cozaar (losartan potassium). I had to have a blood test this morning before taking my first tablet, but now I've started on it. I'm not seeing any difference yet, but maybe it'll need some time.

The main good thing about losartan seems to be that studies say it's slightly more effective than nifedipine, which I was on before, and it has basically no (common) side effects.

I'll keep you posted on how well it works.

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Welcome! [07 May 2008|09:39pm]
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l_is_for_lupus
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L is for Lupus - reviews+recommendations [22 Apr 2008|10:00am]
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l_is_for_lupus
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Thoughts on losartan/biofeedback? [12 Apr 2008|04:51pm]
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shanaqui
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cheerful
]

I've had Raynaud's disease since I was about fourteen. As far as anyone can tell, it's primary Raynaud's disease. I get it mostly in my hands and feet, and usually have several attacks a day. They last anything from five minutes to all day. When I was about sixteen I tried nifedipine to help with it. I had Adalat, at first, a pretty small dosage, which wasn't enough. Then I tried Adalat Retard 10, but that wasn't enough either. Finally, I tried Coracten, which helped a lot more, but also caused side effects (sharp stabbing pains, apparently due to my spleen contracting).

After that, I gave up on medication for a while and stuck to wearing gloves all the time and keeping myself wrapped up as warm as possible. My parents changed our central heating to be on all the time. I don't smoke or drink anything with caffeine in it, and I don't use hormonal contraception or anything -- so I've pretty much covered all the general measures anyone's ever suggested to me.

Anyway, lately I've been having really long and painful attacks again, so I'm thinking of trying medication again. Obviously nifedipine isn't a good plan! So me and my mum (who is a doctor) did some research, and apparently losartan does better (at least in the short term) than nifedipine. Has anyone tried taking it for Raynaud's disease? If you have, could you tell me about your experiences with it?

Also, I want to know more about biofeedback. My dad and sister can control their own body temperature easily, and they've tried to teach me how, but I can't seem to do it -- in fact, it tends to have the opposite effect. Has anyone tried it 'officially', so to speak? If so, do you find it helpful? Did it take you long to have some measure of control over your bloodflow?

(Er. Hi! I'm Nikki. I'm eighteen years old. I'm from Britain. I hope this community isn't as dead as it looks!)

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sore joints [03 Dec 2007|12:13am]
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january_thaw
For one reason or anther last winter was a really good one for me as far as my raynauds was concerned. I don't remember having a full fledged attach all winter, but it was a very mild winter here in central michigan. This year has been different. a week or so i had my first attack and since then the middle joints in a few of my fingers have been really sore. I was just wondering if this has happened to anyone before.

Holly
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Hello [23 Nov 2007|03:51pm]
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kerberos_3
[ mood | 👁 Image
cold
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Hi guys,
I'm not looking for any help at the moment, just thought I would post something and say hello.

I've just moved to Edinburgh (I know smart move for a Raynaurds sufferer), and i'm really cold in the office today, so I have set up my desk lamp like a heat lamp over the keyboard keeping my fingers warm.

I feel like a basking lizard.
Now if only I had another one for my toes.

3 comments|post comment
Hello! [27 Jul 2007|11:51pm]
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gimmesmiles
I'm a new member here. I've suffered with Raynaud's for 3 years now.

I was wondering if any of you experience any dizziness/lightheadedness when your Raynaud's takes place. I feel like it has gotten worse for me ever since I have been diagnosed.

I take Plaquenil for my symptoms/swollen joints.

Well, I hope some of you can answer my question!

Thank you.
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Nifedipine [04 Jun 2007|01:43pm]
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princess_xena
Hello everyone,

I just started taking a medication for the raynauds, Nifedipine 30mg. It seems to cause slight nautious. I think I may be able to take something to compensate. A glass of milk seems to fix it but just for a short while. I was wondering if anyone had any good suggestions that I might try.

Thanks everyone.

Oh and the medicine is working wonderfully.
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heated socks [09 Apr 2007|02:30pm]
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alibee
My husband's mom gave me a pair of her old heated socks. They are wool and have the coil through the bottom of the toe area and take 1 D battery each. Unfortunately, the amount of heat they put out is not nearly enough for me, even if I layer another pair with them.

I was looking at these:
http://www.perpetualkid.com/index.asp?PageAction=VIEWPROD&ProdID=1881

(I ordered these:
http://www.perpetualkid.com/index.asp?PageAction=VIEWPROD&ProdID=1710
last week)

and I was wondering if you all had any suggestions. I'm a programmer, so I don't really need something that I can walk around with (so it would be okay if they plugged into the usb port or an outlet), but I want something that has more heating ability and maybe doesn't just have one coil under my toes.
2 comments|post comment
Introductory Post... [06 Apr 2007|09:42am]
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glassdolphin
[ mood | 👁 Image
cold
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I hadn't heard of Raynaud's until yesterday, when my dermatologist told me that I had it, and, as he explained what it was, everything finally started to make sense to me.

I had started getting these red bumps on my fingers, which he told me were called pernio, and that they were likely caused by a combination of cold and stress. He said that my color-changing fingers and my eternally cold toes were also caused by Raynaud's.

He sent me for some blood work and told me that I should start wearing gloves more often... I went glove shopping last night (which is really difficult when everyone is stocking bikinis and tank tops!) and found a few pairs at a dollar store.

I'm going to have to start looking into gloves I can wear comfortably while typing - you all seem to have some good suggestions in past posts, so I think I will start there :)

I'm so glad there's an LJ community for this! I look forward to getting to know some of you :)

12 comments|post comment
idle medication wonderings [04 Apr 2007|11:15am]
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alibee
I was wondering what y'all take for Raynaud's. Right now, I take 5mg of Norvasc a day, but I am having more symptoms and wondering if I need to increase my dosage, but I am loathe to do so. I've also tried cayenne powder pills, but all that did was give me a stomach ache :)
Thanks!
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