Raynaud's syndrome

Are your Raynaud's symptoms worsening over the years?
3
yes - 42.9%
0
no - 0.0%
3
the same - 42.9%
1
haven't had an episode for a very long time, so not sure - 14.3%

 
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Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 11:02 AM (GMT -7)   
Hello all,

I definitely have Raynaud's (self diagnosed) Syndrome. My earliest memory of it was when I was a teenager (I'm 33 now). It's a frequent occurrence for me, however I can go a few weeks without an episode, mainly because I live in a warmer climate now. Anyway, I've read it's considered a secondary condition, meaning it's a symptom of something else going on, right? I have a few other friends with Raynaud's too. None of which give it too much thought...and I hesitate to ask them if they've ever been tested for lupus. (I haven't told any friends about my current tests for lupus- waiting for results). Is it possible to have Raynauds with a positive ANA and nothing else "wrong"? OR, would there have to be at least something else involved?

Also, how serious is Raynaud's? My Dr. says that her mother has it and must keep mittens close by at all times- and that she knows personally of people who have lost digits to the syndrome. I get my fingers, toes back to normal, sometimes it takes longer than others, but I wonder if the symptoms worsen over time or if it's purely situational (i.e. if you are in too cold, too long). Does anyone know? I have researched this a lot, but it's difficult to pin certain questions.

Thanks in advance! smurf

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/4/2007 11:21 AM (GMT -7)   
Organicchick, I'm kind of embarrassed to say that I really don't know a lot about Raynaud's. My old PCP diagnosed me with it, but I'm not sure if my rheumy has written it on the chart he has for me. From what I do know, Raynaud's can range from fairly mild to fairly serious (like a lot of AI diseases). I have been told that if you start getting sores on your fingers or toes you need to see a doc right away because there might be some irreversible tissue damage. I think it is possible to have Raynaud's without having anything eles, but a lot of times it is a secondary disease.

During cool and cold weather I keep some cotton gloves around and always wear socks and slippers. My pcp offered me a med to take (I forget what it was now), but mine was mild enough that I didn't think I needed it. So, there are meds you can take for it.

I know I haven't answered too many of your questions, but hopefully someone else who knows more about Raynauds can offer some more definite answers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/4/2007 1:06 PM (GMT -7)   
yes, it can get worse as time go's by. But, lot of it has to do with the weather. I have just went out and got my hat and gloves. I can't even put my hands in cold water/freezers or ice. Most of mine is in my right hand but this year it seems that my left hand is acting up. The reason that people lose their fingers or toes is because the blood dosn't flow and gaingren (sorry about the spelling) will set in. I had a co-workers mother pass way this year, because of Raynaud's.

Best to all
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/4/2007 3:05 PM (GMT -7)   
It's really important to make sure you have the correct diagnosis.  Self diagnosing isn't a good thing to do.  It's good that you're researching your symptoms, just take it all cautiously.  So many of our symptoms mimick other diseases and vice/versa.  Make sure you get a proper diagnosis from your doctor.  Raynaud's can occur without having lupus.  Although, it's a disease that appears because of another underlying condition.  The conditions can be anything vascular or arthritic.  That's why it's so important to make sure your rheumy is aware of this.  Proper treatment is important, and yes, you can lose your digets!  I think I mentioned this in another posting just recently.
 
Here's a good website from the American Arthritis Society.  Stick with websites like these that are very reliable.  Wikipedia is NOT reliable, just so you know! Hehehe!  Anyone can write about anything on that site.
 
Stay warm and keep those hands and feet covered!!!
 
Ginny
 
http://www.arthritis.ca/types%20of%20arthritis/raynauds%20phenomenon/default.asp?s=1
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Organicchick
New Member


Date Joined Nov 2007
Total Posts : 11
   Posted 11/4/2007 9:37 PM (GMT -7)   
Hi Ginny,

Thanks!

I'm 33 yrs. old too....just wondered at this point, has lupus affected you severely? I see the list of meds....and I wondered how long it took to get the diagnosis' for everything you have- bless your heart!

I'm almost thinking that when some people are dx'd with lupus, that they don't have major symptoms, just small ones??

It's a crazy, unfair disease. I wish for everyone's sakes it could be more predictable!

I'm waiting on my DNA test this week (and then hopefully to the rheumatologist soon after). Hurry up and wait....ahhh, life ;) My poor girls wonder why I'm glued to the computer lately....

Thanks for "listening"

Me.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/4/2007 10:06 PM (GMT -7)   
Hey girl!
 
Well, for me, this has been a decade of constant issues.  Big ones.  I have minor organ involvement. In fact, only one of my heart valves is affected, and it's basically repaired itself now.  No kidney, liver or lung issues.  My lupus itself is relatively calm most of the time.  I was in a 4 year remission which I unfortunately just came out of.  But my flare up wasn't bad.
 
My big issues are my blood.  I have APS in a big way.  I'm on blood thinners, so that presents its own issues.  If my blood gets too thick, I instantly go into small strokes, or TIA's (trans ischemic attacks). They're serious and not to be taken lightly.  So I'm constantly checking my blood to make sure I"m "theraputic". 
 
I have Raynaud's and Sjogren's.  Both are mild.  I've never had an issue with either of them.  I don't even really notice the sjogren's at all, ever!  The raynaud's I notice in the winter, but it's not bad.
 
I don't have joint pain. But I do have fibromyalgia, which at times, can be brutal. That's the only pain I get.  All the other "things" you see in my signature line don't present huge problems for me.  They're just there!  My medication regime works amazingly well for me.  The prednisone and Imuran have saved my life.
 
It took me a decade to get a diagnosis. Looking back, I can remember starting to have problems in highschool.  The first being fatigue, and a very powerful sensitivity to the fluorescent lighting in the classrooms.  Then my period became the big problem, and things very slowly progressed from there.  about 3 years before my diagnosis is when all the crap hit the fan.  My doctors still didn't put two and two together though. It was so frustrating.  They thought it was "all in my head".  I hate that.  Way too much of that happens with doctors and this disease.
 
What finally put me in the hospital in 2000, was a severe case (4 days long, non stop) of pleurisy.  I truly thought I was dying, and I had no idea what the problem was.  I was also having a lot of heart palpitations. Big ones.  So into the hospital I went, and 5 days later, probably 100 viles of blood, I had my diagnosis.  I was 26.  I had a stroke in 2002 due to the APS.  That left me with simple partial seizures.  Just this past June, I had a very serious allergy to a new seizure medication.  I had a fever of 105 and a rash inside my body that attacked my throat, stomach, intestines, bowels, liver. I was a disaster.  I was told I was lucky to not have slipped into a coma from the fever.  It was very serious.  I'm still recovering from it.  Almost there!  Miraculously, I haven't had a single seizure since that happened. I was having 4 or 5 a day before that!  Divine healing!! Like the reset button had been pushed!  2 months after the allergy is when my lupus came back into play. But I'm doing well controlling it.
 
So much has happened to me since then, that I have trouble remembering all the crisis's I've been through.  I also didn't give myself a chance to grieve properly.  Which is what I'm dealing with now.  I'm finally opening myself up to grieve what I'm going through, and what I've been through.  It's hard. Really hard.  Dealing with the incredible loss of my old self. Grieving what I can't do, and what I won't have. 
 
Like you said, it's an unpredictable disease.  You can be well and in remission one day, and the next, you're in a hospital bed.  It's tragic.  I do my best to live each day in a positive mind frame, and to dream and have goals.  It's the best way to get through the hard days.  And I have a lot of hard days.  Even when I'm feeling "good", I can still feel my body battling something deep inside. It's weird.  Can't really describe it any other way but that.  It feels like I have a war going on deep inside my body, all the time. 
 
I pray that your diagnosis comes very soon.  There's nothing worse than living with the unknown.  Yes, hurry up and wait.  That should be the lupus slogan!  Hehehe.... How are you doing taking care of your girls?  Are you finding it increasingly difficult to find the energy?  How is your support network?  Do you have friends and family to help you out?  Please let us know what the DNA test shows okay.  And also, when you see your rheumy.  If you ever need or want to talk away from the forum, just click on my name and my email address is there.  It's nice to talk to someone your age about all this!
 
Have a restful night, talk to you soon!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


IALupus
Regular Member


Date Joined May 2006
Total Posts : 78
   Posted 11/5/2007 6:15 AM (GMT -7)   
Mine has gotten worse over the years.  Mine started when I was 11.  33 now.
 
SLE 9/99-Autoimmune Hepititis 2006- The list is tooo long for me to type!!  Just ask I will tell.
Most important of the 19 medications is Methotrexate and Predisone.


aggscott
Regular Member


Date Joined Oct 2007
Total Posts : 35
   Posted 11/5/2007 9:19 AM (GMT -7)   
Mine too has gotten worse as I got older but, I do remember something a friend of mine used to do when I was a teenager. I had no idea that I had this then so- when we would go outside and it was cold we would stand and laugh at the different colors of my fingers! I think of that now and I can't believe I did that... eyes
They would turn real white-almost dead like..and were real cold. Then if I went inside a warm place, they would turn real red..and then swell up. Terrible huh? and to think we thought it was funny.
 
When the doctors' told me about that I couldn't believe it had a name. Now I take better care of my hands and feet. I have to keep gloves and socks on sometimes even in the house.
 
Aggie
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