New From Oz
Posted 13 December 2007 - 02:01 AM
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.
Posted 13 December 2007 - 05:15 AM
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.
Posted 13 December 2007 - 12:38 PM
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!
Posted 13 December 2007 - 12:58 PM
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!!
Posted 13 December 2007 - 06:17 PM
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.
Posted 14 December 2007 - 01:33 AM
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,
Posted 14 December 2007 - 10:25 AM
Good luck! Keep posting and we'll all try to hold each other up, funny fingers and all.
Posted 23 December 2007 - 12:58 PM
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
Posted 24 December 2007 - 06:03 AM
Posted 05 January 2008 - 12:08 AM
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.
Posted 05 January 2008 - 09:22 AM
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.
Posted 05 January 2008 - 10:21 AM
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.
It is what it is...........
Posted 05 January 2008 - 12:03 PM
Posted 05 January 2008 - 11:50 PM
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.
Posted 06 January 2008 - 05:42 AM
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.
Posted 07 January 2008 - 11:22 AM