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Deelill

Newly diagnosed with scleroderma

8 posts in this topic

Hi, my name is Denise.

 

I am 32 years old and was diagnosed with limited cutaneous systemic scleroderma, after having recent tests done and starting on Prednisolone. Due to the cold weather I am starting to get problems with my Raynaud's and getting pain in my hands and arms. Is this normal? Also I am still working full time but am starting to get really tired and can't seem to fight this off and have periods where I feel quite low with it all. I am also becoming short of breath quite often and getting numerous chest infections. Has anyone else had this?

 

Sorry for the long moan; hope someone can help.

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Hello Denise

 

Welcome to the forums! We have loads of information about limited scleroderma and Raynaud's that you may find helpful.

 

We highly recommend that you see a scleroderma expert if you aren't already, the list includes all specialties so please just pick out the rheumatologists to start with. I can recommend the Royal Free hospital in London as it's a centre of excellence for scleroderma and I am a patient their myself and can attest to their abilities.

 

Have you had your lung function test, ECHO and chest CT yet? You should be having a lung function test and ECHO each year for at least the first 5 years from diagnosis because scleroderma can affect the heart and lungs.

 

Please also see our warning about scleroderma and steriods.

 

Unfortunately fatigue is part and part of scleroderma, for some people it's just an inconvenience for others, like myself, It can be debilitating. It is something that you have to learn to live with, you cannot work through it or around it. I have fatigue from scleroderma and heart failure so I have something of a double whammy and it determines what I do and when, I've had scleroderma for 4 years and long gone are the days when I thought I could negotiate with fatigue. That said there are others here who find fatigue a minor annoyance!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Denise

 

I have been diagnosed with diffuse systemic sclerosis, nearly 2 years ago now. Yes, I too have problematic Raynaud's and pains in hands. I take nifedipine and fluoxetine for the Raynauds and have iloprost infusions for the digital ulcers caused by Raynaud's. It has taken a long while but I finally feel that since my last iloprost infusion the ulcers have improved markedly and this is in turn has improved my quality of life. I work 4 days a week at the moment and am a single parent to 4 kids but I am considering retiring early on ill health grounds - the fatigue does become a way of life as Amanda has said. The Mycophenolate I take has truthfuly boosted my energy levels beyond anything that I would have thought possible.I have pushed myself very hard to keep myself at work but feel that not going out to work will improve my quality of life even more. Amanda has given you the best advice you could possibly get - get yourself a specialist who will get all the tests done and then decide on the best course of treatment for you.

 

If anyone out there can me any advice on what to expect when applying for early retirement then I would be very grateful.

 

Good luck Denise and hope you get all the best treatment available,

Helen.

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Hi Denise,

 

I'm very sorry to hear that you're feeling so unwell at the moment. Particularly at this time of the year, Raynaud's can be really miserable and I can empathise with you as I also suffer with Raynaud's and painful joints which I'm afraid can be part and parcel of such a bizarre disease as Scleroderma.

 

As well as the excellent links Amanda has given you, I've included one to Emotional Adjustment which I hope will be helpful to you. I really understand that fatigue can be absolutely crippling and do hope that you will soon be feeling better and able to feel a little more positive.

 

Here's a large :emoticons-group-hug: from all of us (I'm the red one!!)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Helen,

 

I'm afraid I have no personal experience with early retirement, but I've included a link to Pensions and Retirement Planning which includes lots of helpful information. I expect that Amanda will be along soon and will be able to give you more first hand information.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Helen

 

Firstly you need to make sure your general practitioner and rheumatologist will support your application and I can't see why they would not. I was told that my rheumatologist's report about me had to state that I would never work again, not just that I could not work now or in the near future and I explained this to the rheumatologist completing my report. I never saw it so I don't know what he said but I got my retirement at 40. It would also be helpful to have your Occupational Health and/or Welfare Officer at work on your side and even your boss, mine bent over backwards to help me.

 

I had been off sick for 5 months when I knew that I would never return and that my options would be dismissal or ill health retirement so I went for retirement, after 20 years there was no way I was just going to walk away with nothing!

 

Initially my employer had to establish that there were no changes they could make to enable me to work before they considered retirement, needless to say there were none!

 

It can be a long drawn out process, it took me 8 months to get a yes!

 

Take care and let us know how you get on.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hello Denise,

 

Welcome to the forums, it is nice to meet you. I have had CREST for over 40 years and have only been diagnosed since 2003. So don't panic you will most likely jog along for a very long time yet.

 

The most important thing is to consult a Scleroderma Specialist at the earliest time you can to be sure you get the best treatment available.

 

That said, I have never seen a Sclero Specialist because there are none in New Zealand. Many years ago I lived in London and also in Sydney but I didn't know what was wrong in those days. Maybe if I had been able to get some treatment then the things that worry me now might have been lessened - who knows.

 

Best wishes for the best possible outcome.

 

Warm hugs from the upside down side of the world.

 

JudyT

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Thank you everyone for your replies; I have found them really useful.

 

I think feeling down and having good days and bad days is probably one of the things I will have to get used to.

 

Thank you everyone x

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