Diagnosed with Raynaud's
hello my name is Wende
I have been diagnosed with Raynaud's I am currently seeing a Rheumatologist and am in the testing process. Had 2 appts with the rheumy thus far, my initial appt. was a question and answer session in which he told me I had symptoms of Raynaud's, that I do not have fibromyalgia as I don't have enough trigger points and told me I would need blood work.
My second appt the doctor didn't tell me the results of my blood work, just asked me how my symptoms were. Told me he needed to put me on norvasc but that he couldn't as my blood pressure is normal. So instead I need to take an aspirin a day and return in a month or two and than he will decide the proper course of treatment. I don't understand what all this means. I went to him expecting to learn that there is nothing wrong with me and that my aches and pains are nothing but my imagination. Instead I got told I must return to him.
I have some symptoms of Lupus but not the characteristic rash so I assume I don't have it. And I think he would have told me if my blood work said I have that would he not? I meant to tell him a few of the other symptoms I have that I didn't think were related but, according to some websites are.
Can anyone tell me, if their doctors just used aspirin in their initial treatments for this? I would rather not take any meds but, if I do have this or some other autoimmune disorder I would rather I am being treated correctly by this doctor.
I hope this post finds you all well or as well as can be with what you must have to live with. Sorry if any of this post is invasive and I will gladly answer any questions you may have.
Thank you in advance for any information you can give.
Hi Wende! I want to officially welcome you to WHL! Lupus and other autoimmune diseases are often difficult things to diagnose. It often takes months or years to get the answers that we are seeking. As we already discussed make sure to get copies of all of your tests and lab results. I take mine to every appoinment. I also have a 1 page summary of my history and 1 page history of "unusual" test results that I give to all new doctors. They are not going to take the time to look it all up and depending on how well my brain is working that day I may or may not remember what I need to say so I just hand it to them.
You have no choice but to be your strongest advocate. Hang in there. It is tough but we will be here for you. I am really glad you found us!
Welcome to WHL. Keep reading through the threads here, and you will learn a lot about what is going on with your body.
Raynaud's seems to be a fairly common thing with many of us, and it seems to accompany a lot of AI issues.
Many of us have had frustrations with being sero-negative (the blood tests don't show it, but we have symptoms anyway).
We've also dealt with docs who don't want to treat us unless something does show up in the blood work.
It sounds like your rheumy is just trying to figure things out. Hopefully, he'll treat the symptoms, and not just rely on the blood work.
Welcome to WHL =) I have Raynaud's too. Its really frustrating because for my its my worst lupus related problem. Meds really suck but make sure to take whatever your doctor tells you to take so it doesnt get worse. Im on Norvasc and a baby asprin also for it. Hopefully they'll figure out what, if anything else, is going on. I hope you find everything on here helpful =)
Welcome to our family the WHL and anything your not sure about there's loads of threads on different symptoms like tgal said.
I have Raynauds also but a full history going back of alot of symptoms connected to the Disease but refering the Asprin your on about, i've been put on 75mg daily and that's ususally done to stop any form of clotting for a condition you must have and also if you've had Deep Vein Thrombosis like myself they put you on it to help clotting from forming again but at the moment i've pulled myself off it as i'm having trouble otherwise and under a gyno specialist also and i shall see my Rheumatology doctor about that in January refering the asprin.
Ritzbit thank you, that was what i had intended on asking next. I actually did ask tgal in the forum chat if docs prescribed norvasc for raynaud's to help open up the vessels and seeing as you're taking that cocktail also I assume I was correct in thinking that. Althought my rheumatologist was very addiment in telling me "not baby aspirin, 325 mg aspirin per day. Not baby aspirin." to which i replied one 325 mg bayer aspirin per day not the baby kind! He said good! And Norvasc is what the rheumatologist would put me on if he wasnt worried my bp would fall to low. Although my new normal is between 120-140/80-100 it used to be a steady 90-100/70. Pain does strange things to a persons body, and I can tell when my pain threshold is being scrutinized as my bp goes higher although I don't feel anything more than an ache or so it seems and the color of my neck changes from white to blotchy red and darker the more pain is happening.
At one point I was seeing an endocrinologist which my Gyn sent me to for Polycystic ovary syndrome. He comment on my slighter darker skin pigment in my armpits and at the crook of my elbows and after scrutinizing my blood work which he deemed normal at the time said its just a little darker nothing to worry about. My hair falls out in clumps i brush my hair 3 times a day, the hair falls out all day long, and when i brush i have to clean the brush 5 or 6 times, and even if i brush before i shower i still lose a drain cap full enough to give a barbie doll her full head of hair. I had the lab results faxed to me earlier today from the doctors office and according to all the results everything is normal or negative for the exception of my mch which isnt that much higher than normal. Just means i should still be taking my vitamin b12 I guess. So now I am at a loss. I have Raynaud's but my blood work doesn't say that! I don't get it. My RF is 6 with normal being <14. Ana is negative. Is all this possible?
There is a small group of people that have ANA negative Lupus and there is an even bigger group of people whose ANA fluctuate due to being in or out of flares, medicines starting to work or a host of other things. One of the reasons that Lupus is so hard to diagnose is that our labs can fluctuate so much and there is no single test to tell you if you have Lupus of not
Hope that helps!
I had a normal bp before I started Norvasc and it didnt change too much after I started taking it along with the baby asprin. I started on just 5 mg but that didnt help so I went up to 10mg which has helped in combination of another medicine Im on called Trental. My bp hasnt dropped that much, just a little below normal so for me the medicne has really helped. I dont know how bad you Raynaud's is, but for me my fingers were purple most of the time and I began getting ulcers. Maybe for you the asprin alone will help. I know how frustrating hair loss can be also. I've had that before and I had big clumps come out everytime I combed my hair, and god forbid I had a knot in my hair. I hope things get better.
You know what's funny about this hair issue? It isn't that I am losing it, it's that I'm losing it wear I'd rather keep it on my head. LOL the PCOS causes me excessive hair growth anyway everywhere. Hirsuitism. So for that I wish it would stop growing on my legs and fall out, I just couldn't be that lucky LOL. Mari thanks so much for that reaffirmation. I will stop worrying. And just wait, get my treatments how the rheumy gives them out & go with what works.
Ritz my fingers are always purple too but, when my hands get cold they first turn white on the edges.. burn cramp they get stuck in the position their in, until the blood returns. As for the ulcers I have those on my toes. And the worst of my Raynaud's is there. My feet are white blue, red purple all different colors they go numb, burn ache etc.. when the blood returns to them. And my feet are cold yr long, and in the summer if they sweat it makes it worse. Just like if it was winter out.
Mine started in my toes then started becoming a big problem in my hands. Now I hardly ever notice it in my feet. Its weird. Mine is year long too but mostly because of the air conditioning during the summer. And getting in a cold pool on a hot day is out of the question now. Mine used to just be white ALL the time. Then they just started turning purple and they are like that most of the time. Even when the rest of my body is really hot my hands and feet will get cold and turn purple. Its the most frustrating problem. I dress like its winter almost all year round now.