Jump to content


Did you know that exercise increases inflammation in systemic sclerosis?


Photo

New


  • Please log in to reply
15 replies to this topic

#1 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 19 November 2007 - 12:05 PM

Hi everyone

I am new to your forum. Well, I guess that really means sort of, because I have been reading on it for several months now although I just joined your membership yesterday. I must say that I am really impressed at how much you support each other. Well, I think I'm over the initial terrified shock of my recent diagnosis of Systemic Scleroderma, Limited Crest but I am certainly still scared sometimes. I keep reading and trying to learn more. I don't have alot of outward signs yet...I get red spots on my face & trunk...I'm sure they might be what one of you referred to as "tangelos" (which is a good nick name by the way, much easier to pronounce!) because the rheumatologist told me they were Scleroderma in my last visit. They seem to come and go on me every few days and I keep getting more....do they always disappear and do that, or just in the beginning (I've seen some pictures on a website where they were very red/dark)? I go back to the Rheumatologist in Feb so by then, I hope to ask the right questions. I appreciate any feedback.

Thanks, Ramona
Sending good wishes your way!

#2 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 19 November 2007 - 12:53 PM

Ramona,
Welcome to our family. We look forward to your imput, questions or anything you wish to chat with us about. We all try to help each other. If really makes it easier when we go to our Doctors when we know how to explain what we are feeling or going through each day. By learning from each other we have more access to information from each other and effects of prescription meds on each other to know if we what to take certain drugs that may not have worked or have been really successful. Our doctors try to help us with certain symptoms but only Scleroderma specialists know what really works for us under most instances. I hope you are seeing a Rheumatologist with many specialities. We welcome you with open arms. Sheryl
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 November 2007 - 01:34 PM

Hi Ramona!

Welcome to the Sclero Forums. I'm so glad you've decided to post. I'm sure sorry you hear you have CREST. If you have any specific questions throw them out there and we'll try to help.

Again welcome
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 Snowbird

Snowbird

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 19 November 2007 - 02:02 PM

Thanks Pamela and Sheryl

Do you know if these red spots just disappear in the beginning....I'm sure I read that they are/can be permanent somewhere and I was a little confused because mine go away and then new ones appear? This has been happening for quite some time now.

Thanks again, Ramona
Sending good wishes your way!

#5 Snowbird

Snowbird

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 19 November 2007 - 02:38 PM

Hi Sheryl

My rheumatologist is new to me....do you mean does he specialize in Scleroderma specifically and other medical specialties? I have no clue about him really, I just went where my doctor sent me but you have given me a little more insight, I think I will put this on my list of questions. In honesty, I never got around to asking enough questions because I didn't know what to ask and I was too scared to think straight to come up with the right questions. Now that some time has passed, I am trying to make a list of things I should look into for my next visit so I can understand everything better. I'll gladly take any help anyone wants to offer me.

Thanks again, Ramona
Sending good wishes your way!

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 19 November 2007 - 03:16 PM

Hi Ramona,

What you are describing is Telangiectasia Yes I have them but am able to hide them with make up on my chest and I use a self tanner on the rest of my body. None of mine have gone away, but when I'm hot or out in the sun they seem more abundant, or I can just see them better.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 beedee

beedee

    Senior Bronze Member

  • Members
  • PipPipPip
  • 43 posts

Posted 19 November 2007 - 04:04 PM

Welcome Ramona! :)
I'm new here too, so not too familiar with this forum, but the people seem so great and helpful here!
I have been diagnosed with morphea, a type of scleroderma, and I am already finding so much support here.
Danielle

#8 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 19 November 2007 - 05:30 PM

Ramona,
Welcome! I'm glad you've decided to join us after visiting for a while. You've found a great place for support, information and tons of personal experiences - the best kind of information. I would recommend that you ask your rheumatologist how many scleroderma patients he or she has treated. He may not be a specialist, but you definitely want his to have some experience. Here's link where you can find specialists and rheumatologist in your area.

I get red spots on my face when I'm having a flare. They stay for a few days then go away. I don't have any due to Telangiectasia, that I know of any way. Just keep track of all skin conditions, blemishes and any other symptoms and always take the list when you see your rheumatologist. It's easy to forget things in a doctor's office.

Again, welcome!

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#9 Snowbird

Snowbird

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 20 November 2007 - 01:03 PM

Thank you Janey....I will do just that, this is more great advice from you too.

Thanks everyone else too for being so friendly and helpful. I'm sure I'll ask more questions as time passes.

Ramona
Sending good wishes your way!

#10 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 20 November 2007 - 02:27 PM

Ramona:

First, off the websites listing the disease; you'll drive yourself crazy. This website provides informative and concise information on all aspects of the condition.

My red spots do not come and go. Starting back probably 25-30 years ago, they come and stay.

I'm fortunate. I have CREST limited to one arm. Due to the Raynauds that accompanies many of the symptoms, I've developed an ulcer on my toe which requires amputation next week.

I don't believe you mentioned Raynauds in your post. Do you have that symptom? If so, stay warm, cover up and any sore or ache in an extremity, see your rheumatologist or general practitioner ASAP.

You'll also notice, this is a caring, nurturing, afghan covering type of website where you will gain information, comfort, friends and knowledge.

Happy Thanksgiving.........
Tru

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

#11 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 20 November 2007 - 03:14 PM

Let me add my welcome to the others, Ramona. Yes, it is a great place in many ways. I hope you will find the links Janey and Sweet have given useful and feel free to explore the wealth of information on the main site through the tabs above.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#12 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 20 November 2007 - 04:13 PM

Ramona,

Welcome! You have found the spot to be. Speaking of spots.... :lol: (sorry) I have "tangelos" too but only on my chest and yes, they do seem to come and go or at least are more visible some days than others. I have fairly dark skin so that helps to hide them a bit.

Keep on posting!

#13 Snowbird

Snowbird

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 21 November 2007 - 09:43 AM

Hi Tru

So far I do not have Raynaud's, at least not confirmed...any doctors I have seen have all asked me that however for several years. To fill you in, I was diagnosed with FM Plus about 12-13 years ago. At that time, the rheumatologist I saw said I was a definite for FM and he was sure that I had something else (his guess at that time was possibly Adult Stills because of the joint pain I experience and the fevers I was having/still do on very very rare occasions = he said these were not symptoms of FM and that I would need to get really sick again to do the special bloodwork for any underlying diseases to show themselves, etc. at that time. For years, my hands have been very sensitive to cold and hot now too but they do not go white or blue as with Raynaud's pictures??...and sometimes I can't seem to warm my feet even with socks & slippers, so out come the blankets too!

How do they know where the Crest will go?? Sorry, I'm a little baffled, not sure I understand the meaning...does that mean it has affected your skin on one arm only and not anywhere else on your body?? I though Crest meant it will affect my face/hands/legs/feet??

I'm really sorry to hear about your toe...I sure hope your surgery goes well and you recuperate quickly.

I agree, this is a very nice, comforting website with a wealth of knowledge...and everyone is so friendly and helpful....I plan to stay!

I hope you have a Happy Thanksgiving too.

Hugs, Ramona
Sending good wishes your way!

#14 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 21 November 2007 - 12:25 PM

Hi Ramona:

So far the CREST only affects my right are from the elbow to the wrist. I have a constant Raynauds condition in my ring finger of my right hand as well. I have Raynauds in all my fingers and toes on extreme temperature changes.

As far as CREST advances, I don't know. I was told it mine s primarily limited to that one area and could remain as such for life. I'm presently on a cancer medication taken once a week that is supposed to reverse the condition by softening the skin. I'm on another medication to control the calcium deposit eruptions, and those are beginning to disappear. To the general public, other than the toe, no one would know I have this disease.

Hope this info helps a little bit.

Have a happy and wonderful Thanksgiving!
Tru

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

#15 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 22 November 2007 - 05:29 PM

Ramona,
Welcome! I just wanted to pipe in and say I have tangelos! Mine do not come and go. They do seem darker at times. I have them on my chest, legs, tongue, hands, etc., but they are the worst on my face. Mine also get worse when I am in the sun for a long time. You should look at the telangiectasia photo on this forum. Um, it is my donation to the forum....and picture of my red dots.

Keep asking your questions because there are so many well versed people that are active on the forum.

Take Care,
Tangelo (s)

#16 Snowbird

Snowbird

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 23 November 2007 - 01:25 PM

Hi

Oh yes, I do and I welcome any and every bit of knowledge and help I can get.

Thank you too, Ramona
Sending good wishes your way!