Hi, i'm new
Posted 06 June 2010 - 06:44 AM
Posted 06 June 2010 - 07:01 AM
Welcome to the forums! I have diffuse scleroderma and am into my 3rd year, the first year I spend sat on the couch in my dressing gown watching TV. I think shock, confusion, helplessness nicely frame some of the early feelings not just for me but for my husband.
Here's the good news though, it does get better because we get better, I don't necessarily mean physically but we learn to cope with scleroderma then we learn to live good lives in spite of scleroderma. The hard part is the beginning and unfortunately there's nothing for it but to go through it.
What symptoms do you have and are you receiving good care from you rheumatologist?
Take care and keep posting.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 06 June 2010 - 08:09 AM
I have Raynaud's.that was prob my very first symptom of Scleroderma. I just put up with it for 3 winters before it became really painful. I have some swallowing problems, joint pain and my skin has changed dramatically in the last 6 months-permanently dry, itchy and flaking.
The rheumatologist says that skin on my hands is tightened a little.The skin on my face has changed the most.
I am waiting to go back for a heart scan and lung function test at beginning of July. I've had ultra sound on my arms and legs, all ok. Have an app for Reumatologist for July when heart and results are in and will discuss treatment then. Not sure what I may be offered etc. I work full time and over the last 3 weeks have struggled through with the joint pain which has really dragged my mood down.
Not sure if or what to tell work colleagues.Feeling all a bit over whelmed.
Posted 06 June 2010 - 08:15 AM
Welcome to this very helpful and friendly forum although I'm sorry you found us because of having Scleroderma.
I have Systemic Limited Sclero and was diagnosed almost a year ago in July/August 2009. Once diagnosed I was actually quite relieved as I had imagined all manner of ghastly conditions and in fact was foolish enough to google 'Pulmonary Fibrosis' which was a BIG mistake as I scared myself witless!! At least when diagnosed I had an explanation of the bizarre and dreadful symptoms I had been experiencing. Thankfully because my condition was caught very early and I received really excellent treatment I have been fortunate enough to still be able to have a good quality of life for which I'm eternally grateful.
Please don't feel too downhearted, Caz; there is life after Scleroderma and a jolly good life too.......if you read some of the inspiring stories on this forum you'll see what I mean!!
I look forward to getting to know you and reading your posts.
ISN Assistant Webmaster
SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 06 June 2010 - 10:27 AM
It will be 4 years in October for me. I have little skin involvement, but do have pulmonary fibrosis and pulmonary hypertension, plus some 'odds and ends'.
I was kind of relieved when I got my diagnosis - I'd been told I had asthma (not!) and would have to get rid of my dogs (3 Border Collies). It didn't seem like a correct diagnosis because it certainly did not account for all the symptoms I was experiencing. I managed to get a screening at a great research center specializing in lung diseases, including autoimmune ones. So it was a win-win thing for me: I kept my dogs and found out the reason behind all the other symptoms! I'm not saying I wasn't scared, but I've spent most of my life making a joke of all the sad/bad things and that attitude helped get me through the worst of it.
There are medications which can help with the joint (and/or muscle pain), so hopefully your consultant will be on top of that. Being in pain is rotten. It keeps everything in the front of your mind (usually out of all proportion to reality). I found that as my doctors and I worked through each thing and achieved some relief/improvement, everything started looking a lot better.
Telling co-workers is one of those things that you really need to think about. Sometimes the type of work you do (and personalities you work with) can be adversely affected by the perception of you being ill. Sometimes it works the other way and you can get a lot of support from your co-workers and allowances/adaptations made where needed like a warmer office or set/regular hours with little or no overtime. Why not wait until your heart/lung testing results are in and you have some idea of the kind of treatment you'll be getting? You can always say something later, but it's awful hard to take it back once said. (Can you tell I'm a mum? )
Anyhow, just believe what everyone has already said - there is a life (and a good one) after a diagnosis of scleroderma! It might not be exactly how you pictured it, but hey, who knows the future anyhow?
Welcome to the Forum and lots of new friends. Best wishes,
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 07 June 2010 - 05:01 AM
Posted 07 July 2010 - 02:11 AM
Welcome I was diagnosed with systemic scleroderma last November (which affects my joints and skin), after I was admitted to hospital to investigate arthritis symptoms. I had never heard of this condition and when I got home I went on the internet and scared myself witless until I found this site, you will gets lots of support and information.
I have now returned to work after being off seven months albeit it being on a phase return but I am finding it hard work mainly with the fatigue. Regarding work colleges I have found them to be very supportive, all of them had never heard of Scleroderma, so I print of a brief description of how it affects me nothing too dramatic, looking for support not sympathy and they have been brilliant. Also I now started to exercise which has helped to improve myself esteem. What I have also found to be beneficial is meditation.
Hope this will be of some benefit to you and good luck for the future.
Posted 13 August 2010 - 01:07 AM
I am slightly anemic at the moment and for some reason it doesn't seem to be improving.I am currently signed off work.Fatigue is a huge problem for me at the moment:>(