Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Only Raynaud

  • Please log in to reply
10 replies to this topic

#1 elena



  • Members
  • Pip
  • 5 posts

Posted 29 October 2007 - 12:19 AM


It is my second message on the forum, and I would love somone to share with me his/her experience or advices.

As I have the Raynaud Syndrome for 12 years, and the ANA and SCL antybodies, I wonder... as the doctors that I consulted, if it is really a Scleroderma?

It is true that my Raynaud is severe, two years ago I had ulcers, never since, but my fingers are blue practically all the time... even now as I write, and I have not found any treatment... just to reste in a warm environment. It is worse with every year.

Does anyone have/had the same experience... just a Raynaud? Is it a begging of the disease, can I expect that the things get worse... or better? It is true that a balance of my disese has not been done, I intend to do it before the year ends.

A lovely day for everybody

#2 Buttons


    Senior Silver Member

  • Members
  • PipPipPipPipPipPip
  • 606 posts
  • Location:UK

Posted 29 October 2007 - 02:49 AM

Elena I have just posted something similar about Raynaud's & just wishing mine would improve just a little because of the pain I get, it is definitely getting worse each year.
I know what you mean about whether my consultant is doing enough to help. Even my general practitioner asked if I felt he was doing enough for me at my last visit.

I'm having to pester the doctors to get somthing done, I don't want to take anything but can't continue like I am and like you worry about what it couls lead to if left.

I would'nt leave it until the year end because winter is setting in now. Can you get to see your doctor before then?

Take care of yourself

#3 Sam


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 639 posts
  • Location:Delta, Ohio

Posted 29 October 2007 - 03:10 AM

yes you can just have Raynauds by its self. When I had lived in California I met a lady who just had Raynauds. I had talked to her about Lupus or Scleorderma. I told her I had Raynauds too but I wasn't sure at that time if I had sclero or lupus. We were still waiting. Sam

#4 Tammy


    Senior Bronze Member

  • Members
  • PipPipPip
  • 67 posts

Posted 29 October 2007 - 05:23 AM


I too have Raynauds, a pretty severe case. It started when I was about 13 or 14 so I have had it for about 20 or so years. At first it was just one finger, we really never thought anything of it. As time has gone by it now affects all of my fingers and toes and my lips as well. I had a dr put me on nifedipine but it caused swelling, he never tried anything after that. I just recently started seeing a rheumotologist she has put me on another calcium channel blocker (best med for Raynauds) and Papavarine. She also did an ANA test that came back positive. The best thing that you can do for your Raynauds is keep your body temp up! Wear a good pair of gloves and socks and most importantly...WEAR A HAT, that is where you loose most of your body heat! My rheumatologist has me wear them anytime the temp is at or below 70 degrees.

Raynauds can be a primary condition and does not necessarily mean that there is an underlying disease or condition. My advice to you would be to get to a rheumatologist as soon as possible to try to get control of the Raynauds and go from there. Rheumotologists are the most qualified to deal with these things, they know how and where to start to help you!!

Hugs to you!! ~~~Tammy~~~
p.s. Wear a hat!!! I can't stress that enough!!

#5 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 29 October 2007 - 06:54 AM

Here is our information page on Raynaud's. As the others have already said - Raynaud's can be a disease (stand alone) or phenomenon (due to something else). There are many new treatments for Raynaud's so be sure to check our the treatment section. I have found that Bosentan (Tracleer) works, but that has been a positive side effect of the drug. I was prescribed it for pulmonary hypertension, but it's done wonders for my Raynaud's.

Ditto in seeking the advice of a Rheumatologist. With your positive antibodies there might be something else going on.

Keep that Whole Body Warm!
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 KarenL


    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 30 October 2007 - 09:57 AM

You can have Raynaud's alone it's called Primary. I had it for 10 years before any other symptoms, then was diagnosed with Limited Scleroderma. Unfortunately, Raynaud's is sometimes the first thing to show. Do you also have any gastric problems? GERD? That's another symptom. Good luck,

#7 jaxs


    Silver Member

  • Members
  • PipPipPipPip
  • 110 posts

Posted 30 October 2007 - 01:28 PM

like karen I also started with Raynaud's befor I was dignosied with limited systemic sclrosis....and also have stomach problems...jaxsx
live life for today and not for tomorrow

#8 aniwallar


    Senior Bronze Member

  • Members
  • PipPipPip
  • 92 posts
  • Location:Soeul, South Korea

Posted 30 October 2007 - 01:54 PM


The first thing you have to do is go to the doctor. There aremany different kinds of medicine now that could help you. My Raynauds is also very bad and I take procardia (when I remember). That's how I decided to go see a doctor who later refered me to a rheumatologist and I was finally diagnosis wirh systemic scleroderma.
My son started complaining about just one finger and he is now diagnosis. with Rheumatoid Arthritis. It diesn't have to be that way for you. You could only have Raynauds but, just in case, I would see a doctor to run some more test and take it from there. Don't wait until the end of the year.
By the way...Where are you from?

Have a great day,

Ani Wallar

#9 truman


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 624 posts
  • Location:NJ

Posted 30 October 2007 - 02:00 PM


I had only Raynaud's for the last 16+ years, but if you look back and see different symptoms throughout the years, you will see that they were part of the disease. Conditions that weren't treated easily, ulcers, chronic conditons.......

When I piece it all together, it was just a slow formulation of the disease.

I'm very fortunate in that my conditon is greatly limited, but it just may or may not be a matter of time before new symptoms appear and the condition grows.

Blue fingers? I would get to a rheumatologist and get on some medication to open up those blood vessels. Since I started Norvasc, my Raynaud's has been limited to one finger and my toes on my right foot.

Hope I provided some information you were asking for........

It is what it is...........

#10 elena



  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 30 October 2007 - 10:13 PM

Hello everyone,

thank you for sharing with me your experiences. You are so kind and ... so well informed.

I have read that Raynaud could precede a scleroderma with years, and as I have a immunological disturbance as well it could be a begging of the disease. The diagnosis is not accurate, and I would be happy if it will rest just as it is ...a Raynaud.

for aniwallar : I am romanian by origin, now I live in the north of France from six months now. I am an intern doctor, in occupational pathologies.

I was thinking, all the time, that if there isn't any treatement for scleroderma, what will be the point to start seeing specialists, I take natuarl treatements and also... the indiference. I know that the most important is not to be stressed, to take as much rest as possible, to eat healthy, to enjoy life. Lovely tratement btw... but even that is hard to be done.

#11 elena



  • Topic Starter
  • Members
  • Pip
  • 5 posts

Posted 30 October 2007 - 10:58 PM

hello again,

I forget to mention, KarenL asked me about GERD, yes, I do have it.

I take care of what I eat all the time because of that, I dont mixe sweet with salty food, dont drink liquids after meals, I dont drink coffee, even thought I loved it... etc. I dont take any medication, it is just occurs after ceratin meals, rarelly now.

Jensue, I don't think I will be able to seethe rheumatologist sooner than in one month, I have to move in another city, from Nancy to Strasbourg, I will be living in a new home, a new job...

Thank you Tammy for the advice to wear a hat, I would take the advice. :), it is a a great thing.

for truman, I will try with Norvasc, nothing worked for me yet for the raynaud.

A lovely day and warm hugs for you all