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Newbie seeks answers

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#1 Lucy H

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Posted 16 February 2009 - 10:31 AM


This is my first time on this or actually any blog/forum. I certainly understand how frustrating this is. These autoimmune issues are so vague and nondescript in terms of exactly falling into a category that it's hard to know exactly what is going on. Last week I went to a rheumatologist for the first time because I told my internist I had Raynaud's and she ordered an ANA test which showed a number of 1:1280. The rheumatologist said that I am probably in the very early stages of CREST. My symptoms don't fit that diagnosis and I really wish I understood more. I am a concrete thinker and wish there were more black and white answers.

I am 48, in relatively good health and my symptoms are new. In addition to Raynaud's I have joint pain in my fingers and toes (its hard to hold a blow dryer and other stuff like I used to), my legs and hips mildly ache (all other muscles and joints are okay). I had a hysterectomy a few years ago and my rings had to all be resized afterward because my fingers kept swelling; but they are not continuing to swell and they are not inflamed like with arthritis.

He said none of this really goes with anything related and I should just take ibuprofen as needed for the discomfort. I don't know why I all of a sudden have aches like this. The only other thing I have are dry eyes and I tested negative for Sjogren's. All other symptoms of CREST are not present. Nail beds good, no skin issues (just a little dryness at fingertips, maybe because of cold weather) and no esophagus issues.

I guess when I saw the other postings it confirmed that this is not an exact science. He basically said that I should be glad I just have Raynaud's, he didn't give too much notice to the joint pain or dry eye issue, and I should just live my life and hope that nothing progresses. My mother's twin had scleroderma and it was devastating.

Do these things develop quickly? I am an upbeat person and I am trying to not obsessively stress about this. My family doesn't seem to be stressed about it, but here I am on this website looking for someone to commiserate or give me feedback. Should I put this all out of my mind, has anyone had any experiences that can shed some light. I'm not even sure what to ask.


#2 Amanda Thorpe

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Posted 16 February 2009 - 11:28 AM

Hello Lucy

Welcome to the forum and glad you have joined us! :lol:

You may be new but you clearly have a handle on how this works, different for everybody, unpredictable, no black/white just lots of gray. My husband has always said I am a black/white person so having a gray disease is somewhat irksome!

That you are concerned is understandable, the not knowing takes awhile to factor into day to day life but it will. Yes you should carry on regardless because even if your symptoms did develop into sclero you would still have to carry on regardless e.g. live your life from day to day. Of course life after sclero is very different to what it was before but it's still life and good life at that!

I am a twin and have diffuse SSc diagnosed 18 months ago, my twin has another auto immune disease. I assume from your post your aunt did not fare well and I am sorry to hear this.

I think the best thing you can do is what you are already doing, being informed, keeping an eye on your health without being obsessive and seeking support. Keep posting as we look forward to getting to know you better and want to support you all we can.

Take care

Amanda Thorpe
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#3 Jeannie McClelland

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Posted 16 February 2009 - 11:30 AM

Hi Lucy,

Welcome to the Forum! I'm sorry you're having some health issues. We're a great place to get feedback and understanding sympathy. It's also the spot to come to if you need to rant about something!

Raynaud's is no fun and those of us that have it don't tend to think it's a trivial issue. We have a good page on it that you might want to check out.

We also have a Difficult Diagnosis page. I think most of us had some difficulty getting a diagnosis (especially one we're satisfied with ourselves) and most of us had to go through loads of testing, many different doctors (even within the same speciality) and years of the good old 'Watchful Waiting.' I even learned a new word: protean, meaning capable of assuming many forms. :lol: Coud be this, could be that~ It's incredibly frustrating, isn't it?!

My advice is two-fold. First, don't stress, it's actually harmful to your health. Secondly, keep track of any new symptoms as they arise and make sure you tell your doctor about them. Huh, I have a third piece of advice! If you think a symptom is not getting the attention you feel it deserves, persevere in getting that attention and if your doctor still won't pay attention, try another doctor. :)

Let's see what our other Forum members have to say. Again, welcome and best wishes,
Jeannie McClelland
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#4 debonair susie

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Posted 16 February 2009 - 12:25 PM

Hi Lucy,

I also would like to welcome you here.

There is so much information to browse through, as well as other members who will undoubtedly share their experiences.

We look forward to getting to know you and hope you feel as comfortable here as we do!
Special Hugs,

Susie Kraft
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#5 razz


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Posted 17 February 2009 - 09:11 AM

Welcome Lucy,

This is a great place to vent or ask questions.

Your doctor sounds like he's doing the right thing by ordering tests to find out what could be causing your symptoms. Try not to worry and keep your upbeat nature as much as possible. Some people experience Raynaud's symptoms and don't progress any further with other symptoms, or their symptoms even subside. If you can focus on the best case scenario while you undergo treatments and testing, this will produce less stress. (I have had systemic scleroderma since 1998 and staying upbeat is easier said than done, it does help though.) I will be thinking of you and hoping for the best.

Take care and keep us posted.

Live well, Laugh often, Love much

#6 Sweet


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Posted 18 February 2009 - 05:07 AM

Hi Lucy, and welcome!

I'm really glad you've joined us. I know how frustrating it can be not having definitive answers. It can take years for some of the symptoms to come forward, and for tests to start showing positive. That's how it was for me. I'm not a doctor, but I am a nurse who has Lupus/CREST/Sjogrens for the past 8-9 years. I have to disagree with your doctor on joint pain and dry eye issues. They can be directly related to your autoimmune disease.

Did he start you on any meds? I'm thinking Plaquenil specifically. It helps with fatigue/joint pain and also has the ability to halt the disease in it's tracks, or at least slow the progression way down. It's the first thing my doctor put me in and it is SO helpful. If he didn't put you on this, please call him back and discuss it.

The other advice I would give you is to take care of yourself. Don't get run down, "check in" with yourself several several times a day to see how your feeling, to see if you should slow down rest etc. I'm a type A personality. So what I've found out, now that I'm taking care of myself, is that I was running myself into the ground everyday for YEARS. It's still hard for me to not want to DO IT ALL. That's just me, but I have been successful is managing that better. Stress is a big factor in progression of disease.

Also, there is soooo much advice and information on the net, don't' let it all freak you out. :blink: If you have questions come here and we'll help. Look around the site, there are so many answers to your questions here and you'll also have someone to bounce them off of.

OK, that's my two cents worth for now. Again welcome and I look forward to knowing you better.
Warm and gentle hugs,

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