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Raynauds Question

raynauds scleroderma

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#1 Jalee85

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Posted 25 October 2011 - 02:10 PM

Hi, I was diagnosed with Secondary Raynauds in January of 2011. It was brought to my attention by a friend of mine that my Raynauds is not the typical presentation of Raynauds. I get attacks when I am taking a bath and my feet are in the warm water. I also get attacks after my legs would get all red and there would be inflammation of my skin. It would almost seem the heat triggers my Raynauds just as much as cold does. I also get the purplish/blackish coloration on my knuckles when I am cold or in warm water, but not the tip of my fingers. I also get it on the palm of my hand nearest to the thumb digit.

I am wondering if anyone else experiences this; my friend's rheumatologist said it didn't sound like Raynauds.

Jalee

#2 Snowbird

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Posted 25 October 2011 - 07:46 PM

Hi Jalee,

I have Raynauds and any shift in temperature makes me turn colours....in the cold or in the hot bath/shower. The heat definitely triggers mine. Sometimes just walking into another room at work does it.

I'm only guessing the purplish/black you are describing on your knuckles is simply the loss of oxygen? I call mine purply black coloured on my feet and hands yet others may describe theirs as blue or blue/black. I'm also guessing it might just depend on the actual amount of oxygen the vessels are not getting at the time perhaps in each of us since it affects us all a little differently it seems? Mine affects me all over from the palm in towards the thumbs like yours too. I even noticed mine up my forearms which was weird looking to me. My purply colour has not made it to the tips of my fingers yet but I just started that additional colour recently this year, so time will tell no doubt as it advances. I never noticed inflammation on my skin either (guessing you mean your legs)....mine just go a mottled colour when I have an attack or catch a chill.

It will be interesting to see what the others experience as well.
Sending good wishes your way!

#3 Jalee85

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Posted 25 October 2011 - 07:58 PM

That mottled color is called livedo reticularis and it's a vascular issue too but not usually a dangerous one unless you develop ulcers. Most don't. I've had that condition my whole life. Hopefully I posted some pics on the gallery so maybe some people can see what I am talking about. I could only post 3 pics though.

My photos.



Jalee

#4 Shelley Ensz

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Posted 25 October 2011 - 08:08 PM

Hi Jalee,

I also get Raynaud's attacks in response to heat; not warm, but when it verges on hot it can induce attacks for me sometimes as well. Any extreme temperature or temperature change is to be avoided with Raynaud's. Sometimes its not so much the actual temperature but the rapid change in temperature that does it for me, like going from a warm shower to a room that might be normal but feels ice cold due to the comparative change.

Now this next part is going to sound silly. But,if you've been diagnosed with Raynauds, Raynaud's is Raynaud's whether it is typical or atypical, and whether it is induced mostly by cold or mostly by heat or mostly by stress. Whether it is all the fingers at once, or odd portions of fingers or toes, or even if it occurs in unusual spots (like for me) of ears and nose or tongue and lips or nipples or even in the lungs.

However there are other, similar, conditions, like livedo reticularis (which I also have). It can create this pretty blue/purple lacy look, often around my knees or even from my knees on down. It doesn't turn dead white like Raynaud's and it is interspersed, as you can tell by the lovely pattern it makes. It's clearly possible to have both conditions, as I do.

It's up to your doctors (may I add, ahem, not your friend's doctors) to observe and diagnose whatever conditions. You may find it helpful to ask for a referral to a vascular lab, where they can run all sorts of interesting tests and really give a final answer to what's what, if there is serious concern. I had vascular lab testing but in my opinion it was a total waste of time because all it did was confirm what was already known, which didn't change my treatment a whit.

There are also other vascular conditions, or perfectly harmless normal changes in blood vessel appearance (more pronounced in thin people, usually) so I don't want it to sound like your only two choices are Raynaud's or livedo reticularis. Here are some warm hugs guaranteed not to cause any change in your vascular situation --

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Shelley Ensz

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Posted 25 October 2011 - 08:15 PM

Sorry, I did my post before yours came through so this may not make much sense to other people following this thread. Although then again, maybe it will.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Jalee85

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Posted 26 October 2011 - 10:17 AM

Shelley, I do get livedo reticularis; I also get a varying sort of colors. Sad to say but I trust my friend who is a nurse and sees a top scleroderma specialist much more than I would any of my own doctors. Unfortunately I live in a less-populated state and most of the doctors I have come across either do nothing or go the complete opposite extreme and want to do surgery. It is very important for me to know if I truly do have Raynaud's or if it's other vascular issues.

I am on my third rheumatologist; the one I traveled to see over 3 1/2 hours had me come to see her just so she could inform me that she was resigning her position. She didn't order any labs or a urinalysis which is shocking since part of my diagnosis is Early-Onset Lupus and I had a 4+ protein last time I had one done. Luckily it is down to a 1+ ! But she didn't know this nor did I at the time I saw her.

My state medicaid won't let me go out of state for care because this rheumatologist said she could handle my case and there was no need for me to go out of state even though 3 other doctors recommended it. Now she is leaving and pretty much wasted a half year of my time. I can't get in to see the new rheumatologist until the end of February.

I have a very high and sometimes irregular heart rate. I've had to stop the Raynaud's meds because of swelling so if I don't have Raynaud's I would really like to know. I'm not new to all of this; I have done a lot of research but that doesn't much matter if the doctors don't even know as much as their patient does. It helps to only have to read a on few things vs all rheumatological diseases. I also am guessing whatever the coloration changes are aside from the livedo reticularis that I have had my whole life is particularly important to be taken care of since I have capillary drop outs in my nail folds and they just keep getting destroyed and I can see the blood from that on my cuticles. I have also been getting more splinter hemorrhages as well.

I've had a gazillion tests and even if they aren't normal they say it's not bad. But I am 26 years old so I wonder where I will be 10 years from now. If I don't have Raynaud's the likelihood that it would be Scleroderma get much less then the other possibility is that I have Dermatomyositis which would explain most of my symptoms. Right now I am on Plaquenil and that is it for the CTD issues. I don't mean my message to sound harsh; it's not meant to be and I understand where you are coming from, I really do, and I wish sometimes I could just blindly follow the doctors orders but when the doctors in the same practice tell you the exact opposite thing it is quite disheartening.

Jalee

#7 Shelley Ensz

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Posted 26 October 2011 - 12:55 PM

Hi Jalee,

Unfortunately, Raynaud's can occur by itself or along with many other forms of arthritis, including dermatomyositis and lupus, so it wouldn't necessarily help too much in specific regard to pinning down a particular connective tissue disease.

I sure do understand your frustration, though. Who knows, maybe you will make some progress with a new rheumatologist. I know it's hard to contemplate, but about fifty percent of people with some symptoms of connective tissue disease never progress to a point where they get a more definitive diagnosis than that, which is why diagnosis of any CTD is such an enormously long waiting game, typically many years from onset to diagnosis -- not only that, but there's the 50% who never get any diagnosis beyond CTD, no matter how many years elapse, or how vigilant they are, or even how good their doctors are.

So there is a chance you might remain in the "early onset Lupus" stage for a very long time and that you may also experience many changes in diagnosis (or partial diagnosis) over the years, because autoimmune diseases can be very sneaky and unpredictable. Luckily they are making advances in genetics that can either be helpful now, or eventually, in identifying and possibly even treating many diseases. Hopefully, either sooner or later, people will not have to undergo such tedious and nerve-wracking waiting for the other shoe to drop!

Here's another warm hug to try to tide you over as you make it through another day of dealing with illness, while still seeking answers.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 judyt

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Posted 26 October 2011 - 04:18 PM

Hello Jalee,

Once upon a time, long, long ago I was 26 and I had Raynauds, Gastritis, Varicose veins, Nail Fold Capillary dropouts, Telangiectasia, and fatigue that had me sleeping 12 hours a night and as far as anybody could tell it was all in my head - in spite of the things they could see. My general practitioner told me I had Raynauds that was for sure but there was nothing to be done about that!! I spend a fortune with a dermatologist who tried to fix my finger nail problems with antibiotics.

Nowadays I am almost 68, I have got through life reasonably well, raised 2 children, kept my husband :emoticon-dont-know: a very long suffering man, and I am still getting up in the morning to greet a great day. I have always had to have a nap after lunch and be up in time for the children after school. I could never hold down a job once I had the children so I didn't even try, but voluntary work in the community kept me busy enough and in touch with the world.

As the medical world learned more about everything I too gradually learned to handle all my problems and in 2003 I actually got a diagnosis :emoticons-clap: .
Now everything makes sense, I even know that I have Rheumatic Heart Disease as well as Scleroderma and that explains quite a lot too. You may be saying, okay, okay but so What! I just want you to know that it is possible to get by without a diagnosis, and even CTD would be better than nothing because at least you have something and are not just a head case.

For you, frustrating as the waiting is, you will get a diagnosis sooner or later I am sure and before you are too much older you will know what is going on. In the meantime look after yourself, try not to let others give you a hard time, accept that you are special and not quite like other 26 year olds and one day you will be old(ish) and grey(ish) like me and look back and wonder what all the fuss was about.

Warm hugs and best wishes on your journey,

Judy T

#9 Chopper

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Posted 27 October 2011 - 08:47 AM

Jalee,

I've been told that my presentation of Raynaud's is atypical. My hands and feet go white in their entirety. I am begrudgingly in the difficult diagnosis category. Reading the stories, the forum threads, and the medical section of this website, help me to at least be educated and know what questions to ask, then, like Judy, accept that each day can be great. I wish you well!

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#10 Amanda Thorpe

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Posted 27 October 2011 - 10:29 AM

"I am still getting up in the morning to greet a great day" Judyt

Whether you have scleroderma, any other form of connective tissue disease, or are in the difficult diagnosis stage, you still have to get up every morning and face the day so your attitude might as well be, it's going to be a great one!

Take care.


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#11 marsha

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Posted 31 October 2011 - 06:18 AM

Amanda~ A sentence I live by EVERY DAY!!
Jalee,
One thing is, there is no normal. I too have attacks whether it is cold, hot, warm or stressful; my goal now is to try and stop those. I'll never forget the first time my hands turned "black" I was beside myself!! I have found (I'm not sure if you have) that with the discoloration comes "PAIN" so I try to avoid this at all costs.

Are you taking any medicine for your Raynauds? I am on my fourth right now the final try Adcirca; I hope that this is the one (Cross Fingers). One thing I can suggest for you is if you are not happy and do not feel like the Doctor is working for you, try another!!! A Doctor who is familiar with what you are going through makes a world of difference. I have also seen a vascular doctor for my Raynauds; they are very knowledgeable.
I hope everything works out for you!
Marsha





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