Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

New From Oz


  • Please log in to reply
15 replies to this topic

#1 gemjar

gemjar

    Senior Bronze Member

  • Members
  • PipPipPip
  • 33 posts

Posted 13 December 2007 - 02:01 AM

Hi, I'm Karen and I live in Australia. I have been reading like mad in the last week about Rheumatoid Arthritis after visisting with my general practitioner about my fingers. She is referring me to a Rheumatologist because of my problems which have been present for around five years. My right index finger is very tender ofen painful, always swollen (looks like a sausage) and quite bent. I haven't bothered too much until now, but it's starting to affect my daily functioning eg; using a knife, pen, lifing things etc...

My other fingers are starting to look take on the same form, just not so severe and most of the time both my hands/fingers are aching and feel best when clenched.

I came across your site and with much uncertainty descided to post and ask what you all think. I have read that RA affects both sides of the body in the same joints. This is not so for me. I live in Central Queensland and have to wait a while to see the Rheumatologist who comes only once a month to a town an hour away. Should I be panicking and is it possible to have the symptoms of Scleroderma for 5 years to the degree that I have, or is the disease more progressive than this ?

I thankyou in advance for giving me whatever advice or info you have.

Rgards,
Karen

#2 epasen

epasen

    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 13 December 2007 - 05:15 AM

Hi Karen,

sorry to hear about your condition, but it's great that you found us here. I can assure you that you'll find a lot of useful information here. Please do not panick or stress about it too much, I think that going to rheumatologist in this situation would be the best thing to do :) I think someone else can give use useful links to read and more information about rheumatoid arthritis.

Take care,
Emmi

#3 danceswithcats

danceswithcats

    Senior Bronze Member

  • Members
  • PipPipPip
  • 35 posts
  • Location:Phoenix AZ

Posted 13 December 2007 - 12:38 PM

Hello and Welcome Karen!! I'm glad you steeled your courage and posted. Good for you! I'm new here, too, but already feel very welcome by this very nice bunch of folk.

I am no expert and couldn't tell you if what you're experiencing is SD but it sounds as if your primary care physician has put you on the right track. Patience is going to be needed in plenty 'cause your rheumatologist might just send you off for tests before giving you a definitive answer but I hope you get good news!

A town an hour away! And he only comes once a month!? Good heavens sounds like where I used to live out in the Maricopa Mountains in Pinal County a long time ago and in another life. I'll bet life is interesting for you to say the least! We had 10 acres, a horse, a goat, a pack of dogs and cats and bunnies and ... I loved it dearly. Husband's job was ending and so we moved back into 'civilization' LOL Now live in Phoenix Arizona with my mom who takes very good care of me and my never-ending health fusses.

I wish you all the best! And hope you get good news!

#4 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 13 December 2007 - 12:58 PM

Hi Karen,

Welcome to the Sclero forums. I'm really glad you've joined us. Don't panic yet. Seeing the rheumatologist is a good place to start. There are certain tests he/she will do that will narrow things down a bit and then you'll have a better idea of what you are dealing with. As far as progression, it varies from person to person. I've had Sclero for almost 8 years now, with very little progression.

Keep us posted and again welcome!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Helen

Helen

    Silver Member

  • Members
  • PipPipPipPip
  • 108 posts
  • Location:Australia

Posted 13 December 2007 - 06:17 PM

Hi Karen

I live in Rockhampton. My rheumatologist comes here once a month from Brisbane. Do you live near me? I have Diffuse Scleroderma - was diagnosed August last year. My fingers started to curl fairly quickly (over a matter of a few months), but they are at a standstill thanks to the drugs I am on.

Helen

#6 gemjar

gemjar

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 33 posts

Posted 14 December 2007 - 01:33 AM

Thankyou everyone for your friendly welcome :)

I think I caused myself a lot of anxiety this week just finding out more about Scleroderma. I realise now that my husband's aunt, whom I'd only ever had a dozen or so associations with over the last 20yrs, had Scleroderma. I never asked her any questions because I didn't want to appear rude, but she was the loveliest lady and 20yrs ago her symptoms were very obvious.

Helen.....i live in Gladstone, what a small world ! I imagine your rheumatologist is the one and the same as my general practitioner has spoken of. I was actually contemplating travelling to Brisbane in the hopes I'd get in quicker. But I have descided to wait, after all it is holiday and holidays, a bit longer willnot hurt I suppose. Funny I have started to look at other peoples hands and fingers when I speak with them, thinking I may be imagining all this. How long did it take for you to get an appointment ? What is your story leading up to your diagnosis ? I hope you don't mind me asking :)

Look forward to hearing from you again,
Karen

#7 danceswithcats

danceswithcats

    Senior Bronze Member

  • Members
  • PipPipPip
  • 35 posts
  • Location:Phoenix AZ

Posted 14 December 2007 - 10:25 AM

Karen it's funny you mentioning you looking at other people's fingers and hands. I do that as well as I still have trouble believing that any of this has happened to me. In the beginning, my primary doctor sent me to a physical therapist convinced that we could 'exercise' away the contractions of my fingers. No go. But they're not so very bad and I'm still able to type pretty quick! And it's 8 years or more later. Can't whistle worth a hoot and I used to be able to. Can't drink thru a straw but that's OK. And my face has a recognizable (to the doctors) SD appearance on the left side due to the involvement apparently of the vagus nerve. For a while I studied this vagus nerve convinced there was some secret cure available because of it ... it seems to run all thru all the places in the body that SD effects ... but the doctors just all thought that was a no-go. Oh well.

Good luck! Keep posting and we'll all try to hold each other up, funny fingers and all.

#8 gemjar

gemjar

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 33 posts

Posted 23 December 2007 - 12:58 PM

Hi all,

I enjoy scrapbooking and noticed from the photos for the first time, how different my smile is now to what it was 2yrs ago. I have always had a big smile, showing all teeth and some gum, but now when I smile my top lip covers half my top teeth and isn't nearly as wide. I have noticed over the last year that my face often feels like it has a face mask applied, but I have just put that down to fatigue (which I feel every day)

Does this ring true with symptoms of Scleroderma ? My feet and fingers are always very puffyand aching first thing in the morning. I ache all over before I get out of bed and just wondering if this is familiar ?

Wishing you all a very Happy Holidays :)

Karen

#9 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 24 December 2007 - 06:03 AM

Hi Karen, Yes your symptomes do sound familiar. have certainly had the puffy fingers and feet, although are now less puffy than they were. The sensation of having put a face pack on is exactly how my face feels a lot of the time. Also , my face feels stiff and my mouth feels like there is a rubber band pulling it back in when I try to smile after I have been concentrating hard on work and therefore haven't been moving the muscles as much by talking / eating!
Lizzie

#10 aniwallar

aniwallar

    Senior Bronze Member

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

Posted 05 January 2008 - 12:08 AM

Dear Karen:

You will find here that it doesn't matter how rare your symptom is, there is always someone who will know exactly what you are talking about.
Everytime I get a new symptom, I just ask and this very nice people always seem to have the right answer.
You mention that your finger is hurting.... last summer my son started complaining about the same thing. Well, I thought "give me a break, it's just a finger!!!" He continued complaining and I finally took him to the doctor and my son was diagnosed with Rheumatoid Arthritis. I was devastated. I also read that RA gets to both sides of the body but tjis is not my son's case.
Please keep us posted about your visit and remember that diagnosis could take a little time. Let's hope it's nothing.
Ani

#11 Piper

Piper

    Silver Member

  • Members
  • PipPipPipPip
  • 140 posts
  • Location:Canada

Posted 05 January 2008 - 09:22 AM

Hi Karen, Welcome to the site!
Hi Lizzie, When you mentioned your face felt like a rubber band pulling back it struck a cord with me pertaining to my hands. That's exactly how my hands feel when I try to open them. I can do it if I pull but right away they spring back to a semi open position. Anyone else's do this. I'm still struggling with not having a diagnosis and telling myself I must be imagining this.
Hugs, Piper

#12 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 05 January 2008 - 10:21 AM

Hi Karen:

So glad you found us here. Seeing the rheumatologist is the best step at this time. Could just be arthritis. I have CREST with sclero presently affecting only my right side. It began in my forearm, but I have noticed it in my right ankle to knee. I recently had my toe amputated due to ulceration caused by Raynauds, and presently am trying to save my foot from the same situation.

The important thing is to get to the doctor, get the meds required, and you will find that you can live a pretty normal life. I waited too long out of fear (how stupid), but forget yesterday and concentrate on today and go forward.

Stop surfing the web and getting so frightened; visit here often, read, ask questions. Hey, we're all in this together and there is always a light at the end of the tunnel.
Tru

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

#13 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 05 January 2008 - 12:03 PM

Hi Piper- I also have exactly that sensation with my hands, I have to make more of an effort to straighten my fingers, I have now started doing hand exercises more zealously in a bid to stop them getting worse. Of course we could both be imagining it :)
Lizzie

#14 gemjar

gemjar

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 33 posts

Posted 05 January 2008 - 11:50 PM

Hi All :)

Thankyou each of you for your replies and advice. I have stopped searching the net, I have read enough to be informed when I go to the Rheumatologist for the first time. At least enough to know which questions to ask anyway !

The last month has been quite tiring. I know we can blame holidays and all but there are things happenning to me that I am not imagining. 7 out of ten fingers are now bent and more swollen than a month ago. I have had problems with my jaw locking for some years, but now whichever side I sleep on, I wake due to shooting pain through the joint in my jaw. Also pain in both shoulders. Pain in my right elbow, which locked up and woke me due to pain. Pins and needles in my hands also waking me up. It is getting more difficult to make a fist or straighten my fingers, they are most comfortable in a semi clenched position. general aches and pains in lower back, legs and feet.

I don't know what the answer is, but I feel much older than I am. I am always tired and therefore a bit of a grouch at times and I think my hubby is sick of my whinging. I don't think he believes what I'm saying, although he admitts to something strange happenning to my fingers.

I don't have a confirmed appointment yet, so will just have to keep waiting a bit longer.

Once again thank you all for sharing, I admire your strength and courage.

Warmly,
Karen :)

#15 danceswithcats

danceswithcats

    Senior Bronze Member

  • Members
  • PipPipPip
  • 35 posts
  • Location:Phoenix AZ

Posted 06 January 2008 - 05:42 AM

Karen I know just what you're feeling. Before I had a definite diagnosis (and the first diagnosis was Fibromyalgia, years later they told me it was the Mixed Connective Tissue Disease) it was very hard on my spirit. There is nothing really to see. It's all how I felt. I was in pain, I was so exhausted and fatigued that it always felt as if I'd been up for 3 or 4 days and it was 4am. It was awful to feel as bad as I felt and have no diagnosis, no dr to support me, no real justification for feeling the way that I did that I could barely function. I kept working but it was a struggle. When the rheumatologist diagnosed the Fibromyalgia, he told me I'd have to quit working and apply for Disability from the gov't. I fought him even then, wanting to deny that this was happening to me. It was another five years before I finally had to give in. This is not how I'd choose to live my life. But I'm very lucky and have many blessings in my life as well.

My point is, just because you haven't yet gotten a hard and fast diagnosis, don't let your own concerns for how others perceive you effect your own 'justification' for the way that you feel. I know that this is hard, but trust yourself. If you're feeling that there is something very wrong with your health, then there is something wrong! Give yourself a break and treat YOURSELF as well as you'd treat someone else who came to you with concerns. Be good to you in spite of the lack of lab tests to back you up! I know that sounds odd, but I think you know what I mean.

#16 gemjar

gemjar

    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 33 posts

Posted 07 January 2008 - 11:22 AM

DWC, you're spot on ! Big problem I have.......worry too much what others think ! I do know what you mean and thankyou for those much needed words.

Warmly,
Karen