Scleroderma and SLE anyone..?

[HalfPint]

I've had Raynaud's for over ten years and about 3-4 years ago I saw a skin specialist re red spots on my lips and hands but no further investigations were carried out. Following several appointments with my Rheumatologist I have been told I have Lupus and Scleroderma.

The Raynaud's is now really bad and I am now on Omeprazole for oesophageal pain etc and apart from the usual aches and joint pains my main problem is general lethargy interspersed with extreme fatigue.

I have always worked and played hard and am often described as 'bubbly' so all this has had a massive effect on me!

I am not into doom and gloom or 'woe is me' but would love to hear from anyone who has both diseases..maybe someone else who never did anything by halves

(I have joined Lupus UK and am on Facebook..a lot lol )

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My mum had scleraderma and too was diagnosed through red spots on lips and hands....she also had rhumatoid arthritis...when she was diagnosed no one had ever heard of scleraderma before and she spent her life explaining to people what it was and how it affected her..she had higher rate disability allowance but people used to look at her like she wasn't disabled!! People don't understand how inwardly disabilities affect people..xx

[HalfPint]

Thanks for replying.

I assumed I had inherited Raynaud's and possibly RA from my grandmother, but after tests no markers were found.

Diagnosis can be so slow and damage can be done in the meantime as I'm sure you're aware.

My way of dealing with illness has always been to hide away (I hate fuss lol) and re-appear when I'm well, so I am on a huge learning curve in many ways.

x

[mstr in reply to HalfPint]

Hi, I can relate to this completely. The rheumy also thought I had schlerderma at one point though now he said more lupus symptoms. So I am waiting for a definite diagnosis from rheumy though whom I see on the 5th July. I get it when you say you hide away and emerge when you are well as I have a tendency to do this too. I find it difficult to explain to people as I don't want to: 1. burden them or 2. have/or be ill in the first place as I used to be so active. I'm sure that with time and a definitive diagnosis this will become easier. Like you said it is a complete learning curve. There is a schlerderma society/info in the UK too on the web. Take care Marion

[HalfPint in reply to mstr]

Thanks Marion.

I rang for an info pack from the Scleroderma and Raynaud's Society which I've read; the advice to wear a nightcap and bedsocks to bed made me chuckle!

What symptoms do you present with..?

All the best for the 5th

[mstr in reply to HalfPint]

Lol to the night cap and bedsocks - it could become a new fashion item;). My symptoms at present have been malar rash, ana positive (nucleolar pattern), polyarthritis (in more than 5 joints), thyroid nodules (past 4 months), stiffness in legs (usually more pm and evening), painful hands (when not on placquenil but this has helped this), chest pain on right hand site (worse during a flare and comes and goes), muscle fatiguability/weakness(informed yesterday), photosensitivity, and during flare ups the usual aches, nausea and more recently headaches. Phew....you would never think I have worked until last year for 30 years without an ailment. I think initally the rheumy thought schlerderma because of the nucleolar ana pattern. I guess they have to just explore all the options. Thanks for the kind wishes. Marion

[katerowley]

hi my names kate, ive had lupus 19 years, raynauds about 15, and ive recently been told ive got scleroderma when i got the red rash all over my body ( but not my face) mine is inherited because my sisters has it has well. ive been doing reallty well till i developed skin cancer via a mole, ( but im not in one of the target groups to get it) ive had the ops and had it removed, but its affected my whole body, so ive had flare ups and im feeling quite tired and low. on top of that i am on the work programme and i have the government on my back, to get back to work.

[HalfPint]

Thank you for replying, Kate.

I am amazed at how many people have these relatively unheard of diseases that wreak havoc on us in so may ways.

When did you have the mole removed? As a life-long sun-worshipper I am vigilant with mine..so far being in the sun has not affected me adversely.

I wish you well