Are these common symptoms of Raynaud's?

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pink blobs
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Date Joined Jan 2011
Total Posts : 54
   Posted 3/24/2011 3:25 PM (GMT -6)   
Hi there. I have a question for Lupus patients who suffer from Raynaud's. I don't have a formal autoimmune diagnosis yet, but my doctors are trying to make guesses at which one or more I have. I do have a lot of lupus symptoms, including Raynuad's.

My doctors think my skin discoloration issues, particularly my hands and feet, are due to Raynaud's Syndrome. My hands and feet turn red, white and blue in response to hot and cold temperatures. All of which are classic symptoms. The strange thing is, my knees, legs, arms and face seem to have the same symptoms as well.

My skin on my knees and legs has been inflamed and turns from bright red to bluish. This is alarming me. After I exit the shower I can notice it at it's most extreme. I get blue patches surrounded by red. Now I'm getting red patches surrounded by bluish skin. I noticed last night that my legs were very purple/blue looking, as well as my arms. My thighs were especially blue. I'm scared I'm having serious circulation problems signifying something is going on that needs immediate attention. I did have a blood oxygen test last week that showed 100% oxygen levels in my blood, as well as other tests for blood clots that came back negative.

Does anyone else have Raynaud's that affects their legs and/or arms? Or is this something unrelated to Raynuad's and a serious heart/circulation problem? I'm very scared right now. Or is this what happens when Raynaud's get bad?

Post Edited (pink blobs) : 3/24/2011 3:30:54 PM (GMT-6)


mechiko
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Date Joined Jan 2011
Total Posts : 82
   Posted 3/24/2011 4:19 PM (GMT -6)   
I have Raynaud's and mostly it is just my toes and fingers, but sometimes (also happens when I get out of the shower) it will seem to creep up my feet and ankles. Not as bad as what you describe though...


Kathryn

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/24/2011 4:29 PM (GMT -6)   
The skin on my fingers also seems tightened, with no limited movement, it even appears shiny at times, but goes away a little when my hands aren't turning colors so much. I read it could be from sarcoidosis, which my GP thinks I have, but I really hope it's not a sign of scleroderma, I'd take anything over the latter.

Ccampo
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Date Joined Mar 2011
Total Posts : 2
   Posted 3/28/2011 6:35 PM (GMT -6)   
I have raynauds syndrome. And i too recently noticed
Discoloration around the backs of my upper thighs down to my knee
And it stops aroud middle of my calf. When i get out of shower
Its reddish purple. During the day it looks darker then my regular
Skin tone. I havent gone to docter yetbut i was reaearchig that some pple
Who have raynauds also have circulation problems in legs.
@what has your docter said ?

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/28/2011 7:34 PM (GMT -6)   
Ok I just figured out that I have more than just Raynaud's, as it is not associated with discoloration of the legs and arms. I also have a condition called livedo reticularis, because I just looked it up and it's exactly what's happening to me. My skin is not only discolored, it's veiny. My Rheumy and GP think I have Raynaud's. which is related to an autoimmune disease they refuse to diagnose. But other than that, they have no answers. I'm fighting on my own for the most part. And I'm sure my ANA will always be negative. I'm also pretty sure I either have Lupus or MS. Nobody will treat me for it. I'm afraid I will die before anyone treats me for my disease.

Ccampo
New Member


Date Joined Mar 2011
Total Posts : 2
   Posted 3/28/2011 8:18 PM (GMT -6)   
So your docters arent diagnosing you with raynauds syndrome!
I went to my rheumi and i definitely have raynauds however the meds they
Gave me didnt work well. You should get blod work done for lupis & ms to see if you have anything else. If your docter wont i woild try another rheumtologist. As for your last stmt. Raynauds is not life threatning just a very inconvient syndrome.
Did your doc diagnose you in regards to your discoloration of your legs?

pink blobs
Regular Member


Date Joined Jan 2011
Total Posts : 54
   Posted 3/29/2011 1:26 AM (GMT -6)   
I don't understand why they are afraid to say yes, you do have Raynaud's. They resort to saying that I probably do. The problem with Raynaud's is that there's no definitive test to diagnose it. It's a process of exclusion of other potential illnesses. I have had negative tests such as ANA, sedimentation rate, rheumatoid factor, thyroid hormone and cbc tests. The only blood test that came back abnormal is my vitamin d levels, which I was told is low. It's called rickets, and is an indicator of Lupus or MS, and a few other illnesses such as cancer. That's a clear indicator of autoimmune problems.

As far as my discolored and rashy legs go, they have no answer for it and seem disinterested in investigating it. I've been going by what I read and seeing pictures to get an idea what could be happening. So far, all my new symptoms always seem to have a correlation with an AI disease.

My pulmonologist told me my blood oxygen is at 100%. as of yet nothing has indicated abnormal blood function. My Rheumatologist came out and said negative tests can be actually false and that I probably do have Lupus or a similar disease that causes inflammation. They seem to think Fibromyalgia is the best thing they can diagnose right now, but it doesn't seem to fit all my symptoms and their severity.

It seems they are scared to treat me with medicine as none of my test as positive. I think they're afraid to put me on medicine although they know I have an autoimmune disease. I feel it may be due to the fact they are scared of being sued if I get hurt or die on an anti-inflammatory. It's more likely to do harm not to treat me and I feel like saying that at my next visit. I'm getting run down so bad, I hallucinate constantly, I feel confused, dizzy, my joints are swollen, I'm extremely nauseated every day, my hair is starting to fall out a little, my chest hurts a lot when I breathe and feels tight, I have a hard time urinating, nerve pain and numbness, seizure like symptoms, my skin looks awful and I have a bad fungus infection/granuloma in my lung due to an AI disease. I feel like I am slowly dying. I've never felt this way in my life. I have never felt so sick and disabled as I do at this time.

I just don't know what to do or where else to go. My family isn't supporting me during this time, they think I'm crazy and being a hypochondriac even though people have commented on my malar rash and color changing fingers, and my doctors know something is wrong but are unsure and afraid to treat me. This is real and it's dangerous. I've already been to the ER, and I'm afraid I'll be there again soon enough.

My Rheumy comes from a reputable hospital and university called Rush in Chicago, IL. It's rated as being one of the best hospitals in the country. I have a hard time understanding where this reportedly high ranking professional health care fits into my experience with them. What do I do now? I feel that I have no better clinic or hospital to choose from to find a good Rheumy.

Sorry for the long post, but I am desperate for help.

Post Edited (pink blobs) : 3/29/2011 1:38:01 AM (GMT-6)


shellilove411
New Member


Date Joined Jul 2011
Total Posts : 1
   Posted 7/25/2011 2:56 PM (GMT -6)   
I realize this is a little late but hope this helps. You sound a little like me. Ongoing problems since I was 16...diagnosed with ulcerative colitis..everything got worse around 2004... Had problems with Dr brushing me off. Was getting bad headaches, neck stiffness is very painful, feel like i had the flu all the time. Having fatigue, joint pain, rashes, hair loss, muscle pain, finally diagnosed with Lupus in 2007.I shake all the time. Found a better Dr and she diagnosed me with Raynaud's ..and it can effect the knees... so if you need some questions answered i might be able to help... 
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