This site/blog explains everything about Raynaud's Phenomenon in normal human language,
no sophisticated and scientific words, but everything discussed here have a scientific base.

This blog is created, in the hope that it will help the people affected by this disease.
Kindly use "Index" for a better experience. (Given on right hand side.)

Saturday, November 19, 2011

What is more severe Raynaud's Primary or Secondary?

        As explained in my previous post, Raynaud's Primary or Secondary?,
The names Primary and Secondary have nothing to do with the severity of the Raynaud's Phenomenon.
As a matter of fact, there are very few patients of Secondary in comparison with Primary.

        One might say, "That's not correct, I have heard a lot about Secondary being more complex and difficult to treat, and it is more dangerous." Well, that is true. But it has got nothing to do with the severity.
        It is not very rare that Primary form is more sever than the Secondary. Then what has to do with the severity?
        Well the answer lies in my previous post. Don't worry, you don't have to visit the post. (But if you want more information about the difference between Primary and Secondary form then I can't help it, you must visit that post :p )
        In simple and non-techy language, the name Secondary Raynaud's is given to Raynaud's Phenomenon when, the Phenomenon is a result of some other disease which the patient already has.

Now, my most favourite part, the assumptions!

Suppose, Mark Z. is perfectly fit and fine on medical terms, but all of a sudden he generated Primary Raynaud's on February 1st 2011.
Assumption second: Bill G. has been suffering from Lupus since 98. But his Lupus gave him the gift of Raynaud's exactly on February 1st 2011.
Assumption third: Mark and Bill and neighbours, so all the environmental conditions are same for them.
So, technically Mark has Primary and Bill has Secondary Raynaud's.
Now we will assume that as of February 1st, Mark and Bill has the same severity of Raynaud's.
But Mark did not take care of his Raynaud's, he smoked a lot of cigarettes, drank a lot drinks containing caffeine, consumed medicines containing beta-blockers.
And on the other hand, Bill behaved like a good boy, and did no bad things.
So, on March 1st 2012, the severity of Mark's Raynaud's became more than of Bill's.
Here you saw, how severity has nothing to with the form of Raynaud's.

        Now, one might ask, "Then why is it said that Secondary is more complex than Primary? And furthermore, why is it more difficult to treat than Primary?
Well, for the answer, we will consult Bill!
Here is Bill's answer: "As you know, I am suffering from Lupus since a long time now, my body is a little fragile. When my doctors found out that I am also suffering from Raynaud's, they had to be very careful about my medicines. Because they did not want to give me some medicines that would increase my problems with Raynaud's."
So, you can guess why is it said to be complex/difficult to treat.
        And while it is the primary form, the doctors or the patients don't have to worry about anything except Raynaud's.
        If we take a look at Mark, we can see that Mark has to take the precautions only for Raynaud's. But as his severity has increased, his doctors think that it is time to threaten Mark and prescribe some medicines for him. (This kind of threatening includes "quit smoking, or your body will..." A word to the wise!) Here, doctor doesn't have to be as careful as he has to be with Bill's case. Both, Bill, and Mark are treated by the same doctor, named Timothy G.

Conclusions:
  • Severity has nothing to do with form of Raynaud's.
  • The only difference is, Secondary Raynaud's is difficult/complex to treat, than the Primary Raynaud's.
  • In case of Secondary form, person has Raynaud's and something more. And this persons needs to take care of all of them.
  • With Secondary, as there are more than one diseases in the body, it is a real troublemaker.
  • You should read the difference between primary and secondary form, and precautions on this blog. :D


Warm Regards,
Kiran Nayak :-)

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Thursday, November 17, 2011

Raynaud's Discussion Groups / Support Groups / Facebook Groups

There are several user groups on internet, on forums and websites.
I have visited almost all of them.
But in the end I prefer two facebook groups.
The first one (as of January 25th 2011) has 235 members.
It is very active and helpful group.
This group is public and anyone can join it.
Here is the link to this group:
http://www.facebook.com/groups/raynauds/

The another active group.
The members of second group, (including me) are members of the first group as well.
However, this second group is a secret group. That is, it is literally invisible who is not a member of that group.
Only members can see it, and only members can invite their facebook friends.
But me and other members keep both of these groups updated on same levels. That is if we find something new, we discuss about it on both the groups.
If someone posts something only on one group, then we post the same to the other group.
The second group was created for the persons who want to keep their Raynaud's as a secret.


Warm Regards,
Kiran :)

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Wednesday, November 16, 2011

Raynaud's Awareness Week / Month 2012

An annual health campaign is held every February, aiming to create a greater understanding of Raynaud's among the general public.

There are several institutions/organisations, who organise little campaign, usually on any Sunday from February. But it is not possible for everybody to attend these campaigns may be too far away from there town. And few people are uncomfortable about telling others that they have Raynaud's.

So we created an event on facebook. Unlike the other campaigns, this is not aimed only at general public. But we also aim this event towards the patients of Raynaud's.
Lot of patients lack about the knowledge about Raynaud's. In last few days, I advised a lot people about Raynaud's, through facebook and some contacted me on my e-mail through this blog.
When I told them something to stop or start they said, "I didn't know it was good/bad for us."
So me, and my fellow friends from facebook created this event.


Raynaud's Awareness Week 2012 (February 1 to February 10)
In this event:
  • We expect everybody to share their knowledge, personal experiences, their troubles or funny incidents with Raynaud's.
  • Discussion about "My symptoms and problems and and what makes it better." (Its ok, if a user doesn't want share. We respect everybody's privacy.)
  • Gain more information medicines/home-medicines/solutions on Raynaud's.
  • In an all, have fun, get more information about Raynaud's, talk a lot, and meet new people from all around the world.
I hope whoever has Raynaud's and hears about this event, will join this event.
Me and my fellow friends from facebook are looking forward for this event.
We are hoping that people from all around the world will join this event.
If you, or someone from your family or friends have Raynaud's, then you are more than welcome to join this event.
You are welcome to join this event even if you are a doctor.

As this is an online event, we don't have to go anywhere, just sitting infront of the computer or mobile is all what is required.
Even today, there are lots of misconceptions and lack of information about Raynaud's, and that's what we are trying to do,
spreading knowledge about Raynaud's.


Though originally created as "Raynaud's Awareness Month", this event has been scheduled only for 7 days, to avoid it being stretchy and stale, and to make it more active and fun.


And, don't expect somebody else to do the task.
Do what can you do!
And invite your friends!
:)

We want to unite everybody under the same roof.
So we have to invite all the known people related with Raynaud's before some other roof is created.
:D
So please spread as much word as you can.
:)









Warm Wishes,
Kiran :)


Post Script:
        This event turned out be very successful, but we will not stop here, yes we expect more. So, because of the "public demand" we created one more event for 2013. For more details on that event, please visit:

http://raynauds.blogspot.com/2012/02/raynauds-awareness-week-month-2013.html

                (Post script added on February 13th)

Warm Regards,
Kiran Nayak :-)

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Tuesday, November 01, 2011

Raynaud’s Awareness Ribbon

There is no official symbol or awareness ribbon for Raynaud’s Phenomenon.
On facebook, me and my friends discussed about this issue.
Though not with the symbol, we came up with an idea of ribbon.
The colour combination is the outcome of this discussion.

Though I worked on this image all by myself, the credit for the idea goes to all the users who participated in the discussion mentioned above.


In the following image, we have used "the three colours", as quoted by a friend of mine in the discussion mentioned above, "red-white-blue, since those are the stated colours our fingers and toes turn..."




We (the creators of the ribbon, including the ones who came up with the idea), hereby give permission to use this Ribbon, as long as it is being used in relation with Raynaud’s Phenomenon, AND as long as credit is being given to Kiran Nayak, for coming up with ribbon's idea.

Mazel tov!

The Credits:

Kiran Nayak, the one who started the discussion regarding ribbon.
Rosemary Erickson, the one who came up with idea of the three colours.
Liz, who cleared the confusion/doubts about turners syndrome.
There are two more beautiful ladies, but as per their request, I am not going to mention their names.

Regards,
Kiran :)


Edit:

The image uploaded above is not a completey square.
So, I creaeted one more image, of 1400x1400 pixels.




 
Here is the link to the group where the ribbon was conceived:
http://www.facebook.com/groups/raynauds/


Warm Regards,
Kiran :)

Saturday, October 29, 2011

Raynaud's Disease and Lupus

Our target here, is not to give complete information about lupus,
The target is, to give so much information about lupus that a patient of Raynaud's can get an idea about lupus.

A General "About":
Systemic Lupus Erythematosus, often abbreviated to SLE or lupus. People with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. Sometimes lupus can affect many different body systems, including the skin, heart, lungs, kidneys, joints, and/or nervous system.
        One out of three patients of lupus generates Raynaud's Phenomenon.

Signs and Symptoms:
Common initial and chronic complaints include fever, malaise, joint pains, myalgias (muscle pain), fatigue, and temporary loss of cognitive abilities. Because they are so often seen with other diseases, these signs and symptoms are not part of the diagnostic criteria for SLE. When occurring in conjunction with other signs and symptoms, however they are considered suggestive.

SLE is one of several diseases known as "the great imitators", because it often mimics or is mistaken for other illnesses. SLE is a classical item in differential diagnosis, because SLE symptoms vary widely and come and go unpredictably. Diagnosis can thus be elusive, with some people suffering unexplained symptoms of untreated SLE for years.

For more and detailed symptoms of lupus, please  visit following website.
The symptoms are described there in very normal english.
http://www.londonlupuscentre.co.uk/lupus/symptoms/


There are four different types of lupus:
systemic lupus erythematosus,
discoid lupus erythematosus,
drug-induced lupus erythematosus,
and neonatal lupus.

Regards,
Kiran :)

Tuesday, October 18, 2011

Raynaud's Phenomenon and Smoking

Smoking causes blood vessels to narrow (Constrict in nerd-speak). This constriction in blood vessels causes skin temperature to drop, smoking worsens frequency and intensity of attacks. Medications to treat Raynaud's may not be as effective in smokers. Smoking can lead us to angina. [Angina is severe chest pain. It happens because of ischemia. (ischemia is lack of blood, thus a lack of oxygen supply.)]

On a website, I found some information related to Raynaud's Disease and smoking, in a highly encrypted way. They used so technical words, most of which belong to nerd-speak, it made think may be by mistake, I got access to the confidential documents of some Top Secret Research Facility.
:D

I am copy-pasting the data here, as it was on the website. Take a look for yourself. (And go nuts.)

The acute effects of smoking a single cigarette on peripheral blood flow were investigated by laser-Doppler flowmetry in nine patients with Raynaud's phenomenon and 12 normal controls.In regular smokers, a marked fall in finger blood flow was demonstrated, but this was not present in non- or irregular smokers. These results suggest that regular smoking sensitizes the peripheral vasculature to the vasoconstricting effects of the next cigarette, and that at least part of this sensitization is mediated by the inhibition of endothelial prostacyclin synthesis.

According to this website, "they" conducted similar smoking test on some normal people,
and on some patients of Raynaud's. They got following results:
In human language these results are:
  • The blood flow in fingers of regular smokers was decreased.
  • But the similar decrease of blood flow was not found in the fingers of irregular or non-smokers.
  • Regular smoking makes the arrangement of blood vessels in extremeties (hands, toes, and perepheral organs) sensitive to the next effect of the cigarette. This effect of cigrette means the same about blood vessels getting consticted, as I have already mentioned above.
  • In simple words, first cigarrete doesnt create much trouble, but this first cigarrete makes our blood-circulation system sensitive for the effect of next cigarrete. And this second cigarrete decreases the blood flow in fingers.
  • So, the bottom line is, we must never smoke!


Warm Regards,
Kiran :)

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Thursday, September 29, 2011

Raynaud's Primary or Raynaud's Secondary?

A lot of people get confused over the classification of Raynaud's Phenomenon. Most of the times they think that the Primary is the first stage, and when it gets worse, it is secondary; as in the second stage. But I am sorry to say that it isn't true, or it would have been too easy.

In medical literature, Primary Raynaud’s Phenomenon may also be called idiopathic(*1) Raynaud’s Phenomenon, Primary Raynaud’s syndrome, or Raynaud’s disease. There is no known cause for Primary Raynaud’s Phenomenon. It is more common than the secondary form and often is so mild the patient never seeks medical attention. It generally is an annoyance that causes little disability. 
Raynaud's disease, or "Primary Raynaud’s", is diagnosed if the symptoms are idiopathic, that is, if they occur by themselves and not in association with other diseases. Some (and I, funnily) refer to Primary Raynaud's disease as "being allergic to coldness". 
It is possible for the primary form to progress to the secondary form.
In more simple words, Primary Raynaud’s occurs all by itself, not because of any other reason.

Secondary:
Raynaud's Syndrome, also called as Raynaud’s Secondary  is the name for the condition when it is result of an underlying problem. (That means,  secondary Raynaud’s is a gift from some other problem, which the patient already has.) The underlying problem can be from a negative reaction to a medical drug, an eating disorder such as anorexia, a medical condition that affects blood flow and blood vessels, or the development of hand arm vibration syndrome as a result of working with vibrating heavy machinery too much.

The most common cause of secondary Raynaud’s Phenomenon is connective tissue disease. The condition most commonly occurs with scleroderma or lupus, but is also associated with Sj√∂gren’s syndrome, dermatomyositis, and polymyositis. Some of these diseases reduce blood flow to the fingers and toes by causing blood vessel walls to thicken and the vessels to constrict too easily.
Other possible causes of secondary Raynaud’s Phenomenon(*2) are carpal tunnel syndrome and obstructive arterial disease (blood vessel disease). Some drugs are also linked to Raynaud’s Phenomenon. They include beta-blockers, such as Lopressor1 or Cartrol, used to treat high blood pressure; ergotamine preparations, such as Cafergot or Wigrane, used for migraine headaches; certain agents used in cancer chemotherapy; and drugs, such as over-the-counter cold medication and narcotics, that cause vasoconstriction.
In extreme cases, the secondary form can progress to necrosis (premature death of tissues) or gangrene of the fingertips.

*1 = Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.
*2 = There is actually a whole big list, you can find it on wikipedia on following link :

http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon#Secondary_Raynaud.27s_.28syndrome.29


Warm Regards,
Kiran Nayak :-)



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Tuesday, September 27, 2011

Raynaud's Phenomenon and Alcohol

The effects of alcohol and Raynaud's are conflicting, that is, the effects of alcohol varies from person to person. More studies need to be done.

But in most of the cases, following scenario takes place.

  • Alcohol temporarily warms up our hands and feet but its after-effects outweigh its benefits as a hand and foot warmer.
  • Alcohol increases blood flow to the skin, giving the immediate feeling of warmth.
  • That heat is soon lost to the air, reducing core body temperature.
Thus, it can be said that alcohol actually makes our body colder.

Red wine in small quantities has been known to help with Raynaud's symptoms in women.


Warm Regards,
Kiran Nayak :-)

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Saturday, September 24, 2011

Don'ts For the Patients of Raynaud's Phenomenon


There are few "Don'ts" for us, not much, here is the list :

  • The first and most important thing, we must never smoke! (I've explained about smoking in detail, in Raynaud's Disease and Smoking. )
  • Consumption of caffeine must be in a moderated way. Caffeine is a vasoconstrictor (in nerd-speak Vasoconstriction means the narrowing of the blood vessels, so vasoconstrictor means the one who responsible for it) Caffine can be found in  coffee, tea, beverages, chocolate, stay awake pills, some aspirin preparations, some painkillers, and some other medications.
  • Never walk barefoot, if you feel temperature has dropped or if start to feel cold, make your body warm.
  • Never expose your body in cold atmosphere. That means, you should wear warm clothes, not just your regular clothes. (Exposing body in cold doesn't mean dancing in a skimpy bikini on the picnic-spot Antarctica.)
  • Do not carry heavy shopping bags with handles that restrict blood flow to fingers.
  • Avoid extreme/repetitive vibrations. Avoid tools that vibrate the hand. That dosen't mean just the driller which is mentioned everywhere else. It has been found that some other tools which produces smaller but powerful vibrations also may trigger an attack. Like power saw or chain saw.
  • Some drugs actually can make Raynaud's worse by leading to increased blood vessel spasm. We Should avoid taking:
    • Some over-the-counter cold and diet drugs. Examples include drugs that contain phenylpropanolamine. In U.S. phenylpropanolamine is not sold without a prescription. It is banned in some contries including India, but is still available "over the counter" in some contries. It can be found in dietary supplements (meant to assist with weight loss), medicines used to relieve symptoms of the common cold. It is also found in some "over the counter" throat lozenge. It is found in some "sore throat spray" as well.
    • Pseudoephedrine: It is found in the drugs used to relieve nasal congestion - stuffy nose.
    • Beta blockers: This class of drug, used to treat high blood pressure and heart disease, may worsen Raynaud's. Beta blockers are also found in most of the birth control pills.
    • Birth control pills: Hormones and drugs that regulate hormones, such as birth control pills (hormonal contraception) may aggravate Raynaud's. In simple words, these drugs affect your blood circulation and may make you more prone to attacks.
      Contraception which is low in estrogen is preferable, and the progesterone only pill is often prescribed for women with Raynaud's.
    • So, the bottom line is, we must check for the contents before buying/consuming the medicines.

I know that this post, unlike my other posts, contains a lot of technical words.
So after reading, just nod your head (or babble and coo) and follow whatever has been told here.
:-D


Warm Regards,
Kiran Nayak :-)

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Handling an Attack of Raynaud's Phenomenon

If an episode of Raynaud's phenomenon occurs, (sometimes also referred as spasm attack), well the most important thing is, don't panic, stay calm. Here are some tips that we can use :
  • Make your whole body warm by going indoors or by putting on warm clothing.
  • Gently warm the fingers and toes as soon as possible. Place your hands under the armpits, armpits are always warm, it helps.
  • With your hands under armpit, start walking around. That helps the body with blood flow.
  • Run warm-not hot-water over the organ under attack (or dip the organ in water) until normal skin color returns. Do not use a hot water bottle or heating pad, it is dangerous as the tissues are already cold, with lack of blood and oxygen.
  • Start the simple wind-milling exercise, it increases the blood flow. 
That is almost all about it,
And who says living with Raynaud's Thingy is difficult?
:D
if there are any more tips/suggestions, I will be more than glad to hear them and upload them on my blog.


Regards,
Kiran :)


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    Wednesday, September 21, 2011

    Skin Protection For Raynaud's Phenomenon

    Poor blood flow may make skin dry. It may also cause cuts, cracks, or sores to heal more slowly than usual. Following precautions can help protect the skin:
    • We should use simple, mild oil or moisturiser (no petroleum jelly)* on hands and feet,  atleast once in a week to keep the skin from chapping or cracking. (Very little of oil, well spread.)
    • In winter or cold days, the use of oil depends on the temperature and the severity.
    • We should examine feet and hands daily to check for ulcers. If a ulcer develops, keep it clean and covered. Then go and consult  a doctor as soon as possible.
    • Wear rubber gloves while washing dishes or while doing any kind of .work where the skin is in the contact with the water.
    • We should take care when doing activities that put pressure on the fingertips, such as using a manual typewriter or playing the guitar or piano. This kind of pressure may cause our blood vessels to narrow, thus triggering an episode.
    • As mentioned previously in "Living Happily With Raynaud's Thingy" (Do's  For the Patient's of Raynaud's Phenomenon), wear clothes made of natural fibres, such as cotton and wool. These draw moisture away from the skin.
    • According to most of the doctors, calcium channel blockers (Nifedipine) is the safest drug for us. It reduces the frequency and severity of the Raynaud's attacks. It has the usual common side effects of headache, flushing, and ankle edema; but these are not typically of sufficient severity to stop the treatment. Nifedipine also help heal skin ulcers on the fingers and toes.
    • Oil for Skin:
      The only remaining thing here, is the "Miracle Oil", by Erthly Body.
      I know, the name of the product and the manufacturing company sounds a little weird,
      but the results are really miraculous regarding Raynaud's. o_0
      Surprisingly, this oil isn't made by keeping the patients of Raynaud's in mind, but it works perfectly for us!
      And this is not only my personal opinion, my several other friends found this oil useful during the cruel winter.
      Here is the link for it's official website:
      http://www.earthlybody.com/miracleoil.htm
    • For skin ulcers nonspecific vaso-dilators such as nitroglycerinpe paste is useful.

      As usual, I recommend to purchase the products offline, that is in real life, IRL.


    * =  The reason for "no petroleum jelly", is that it has several side effects.
    Here are few of them:
    • After applying the petroleum jelly, smoothness and softness that we feel is actually the layer of petroleum jelly that we keep on adding over the skin. It protects the skin but also restricts the pours of the skin from letting the toxins and actual moisture out.
    • This makes the secretion of all the toxins and unwanted substances to form a layer under the actual layer of petroleum jelly. The whole process results into several skin disorders and leads to dandruff, acne, dryness of the skin and hair and skin irritation.

    More of the side-effects can be found on following link:
    http://www.buzzle.com/articles/petroleum-jelly-side-effects.html

    Regards,
    Kiran :)

      Monday, September 12, 2011

      Do's For The Patients of Raynaud's Phenomenon

      • First of all, always keep yourself warm.
      • Always wear hand-gloves, and when the temperature is pretty cold, use mittens.
      • We, need to maintain the body temperature, but we feel hot and sweaty like any other person, so the trick is to wear layered clothes.
      • The clothes must be loose fitting, that is, they must not be tight.
      • When holding something cold, no matter what for how long, use gloves/mittens/insulators.
      • Wear wool, synthetic, or cotton-blend socks. They keep our skin drier and warmer by taking the moisture away.
      • Talcum powder absorbs moisture from our feet. When our feet are damp they are more easily chilled.
      • Drink plenty of water to avoid de-hydration. (De-hydration can lower the amount of blood moving through the blood vessels.)


       
      Warm Regards,
      Kiran Nayak :-)

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