Do I have Scleroderma?

[meggi56]

Diagnosed with Raynaud's 2 months ago. Warmer weather makes no difference. Fingers of left hand still numbing. Now left arm weak and agonising. Can't even dry off after shower without severe pain in upper arm. Left radial pulse weak and red spots appearing across left fingers and palm. See GP next week. Do I ask whether I have scleroderma.....? Or wilI sound like idiot who consulted Internet and got too much info.....?

[zenabb]

Yes, ask him/her if you have scleroderma or something else. I often have pain in my arm. It comes and goes.

[wartsandall]

Hi Megg......due to the symptoms you are describing in terms of the severe pain in your upper arm and the weak pulse....my advice would be for you to see a doctor sooner rather than later.....the pain maybe due to something else.....please speak to the out of hours GP...they will advise you if you need to be seen in A&E....good luck xx

[BarbJ]

HI Megg - I agree with wartsandall about seeing someone sooner rather than later, just to be on the safe side. I get a lot of pain in my upper left arm - for years I used to get pain deep inside it (hard to describe really) and did at times wonder if I was having a heart attack, but I never have had one. I couldn't hold my arms up for long either without getting pain - eg. I couldn't search through a rack of clothes for long because of the pain that would start in my arms, particularly the left. All that started at least 20 years ago and I now get pain in my left arm (upper particularly) every day, sometimes it's not so bad, other times I have to take painkillers.

I was diagnosed with Raynauds at 13 but back then I wasn't even offered anything for it. I developed red spots (telangiectasia) on my face in 1991/92 and now have some on my left hand too. In 1997, after having a terrible time when I could hardly stand on my legs because of the pain, I was finally diagnosed: at first with mixed connective tissue but later with limited cutaneous systemic sclerosis.

My left side has always been worse than my right, even my nailfold capillaries show quite a different pattern on the left than the right (apparently they're usually v similar).

As for looking on the internet, I am all in favour of it, unless you're one of those people who imagine you have everything (not that there's any shame in that, it's just how some of us are) - and you don't sound like that. The first rheumatologist I saw said he thought I'd got scleroderma and told me not to look on the internet (which I had done) but I'm one of those people who likes to know as much as possible about what might and might not happen to me.

Easy to say I know, but It doesn't matter what your doctor thinks and but anyway he / she should be able to tell that you're not someone who's frightened yourself to death by looking on the net. I'd say you definitely need more blood tests if nothing else, and if that's not offered please don't be afraid to push for it. I started work in the NHS about 13 years ago and have had my eyes opened a lot - it's given me the confidence to ask for things which I would never have dreamed of doing even 13 years ago!

Good luck - let us know how you get on won't you?

BarbJ

[meggi56 in reply to BarbJ]

Thanks for all the replies/advice offered.

I'm now sure that I have scleroderma. All my symptoms/experiences fit with that condition.

I have an appointment to see my GP this coming Tuesday morning. He's a good man and a great GP. I'm sure he'll take me seriously when I broach the subject of scleroderma.

I can't help but feel angry at times.

I'm not a bad person; I try to look out for my friends, try to be there for them. And my family always comes first. So why is it that bad things keep happening to me?

First I develop spondylolisthesis - which is agonising and mobility-limiting. Then, my son dies of cancer. And, had his GPs been on the ball, he should have been diagnosed MUCH sooner than he was and might have lived!

And now, I have Raynaud's and possible scleroderma...... I'm in pain ALL the time. I sleep less than three hours each night. I rise around five each morning - and plod through the day. I'm SO tired!

[frillyhilly]

Hi,

I just want you to know that we're all here for you.

At times I feel like that, everything is so difficult, if you start something you can't finish it and the tiredness - just drives me mad.

Take it easy and don't be hard on yourself. It sounds like you have a good Dr so take advantage of it. It might be worth checking your symtons against Lupus:

lupusuk.org.uk/what-is-lupu...

(I'm only thinking of this because I had a new care worker last week, who, when I said "I'll explain what is wrong with me", said "I know - you've got Lupus", and a lot of your symtons sound like mine. I haven't spoken to my GP yet about this possibilty so I'm sorry I can't tell you any more.)

Take care, N

[meggi56 in reply to frillyhilly]

I saw my GP yesterday......He believes that I have scleroderma. I have an appointment to have blood samples taken on 22nd this month. I'll return to my GP ten days later......

If it IS confirmed that I have scleroderma, what then.....? Doesn't seem to be much by way of treatment, or of relief. Am I condemned to this pain and weakness for the rest of my life?

Sometimes it all seems too much to bear. I'm largely housebound by the pain of my degenerating spine. I have a wheelchair stashed away in y garden shed - refuse to use it! But the time is approaching when I'll have no option but use it. Except that I won't be able to propel it, thanks to the pain & weakness of the ***@@@! scleroderma.....!

[meggi56]

So, I changed my duvet cover this morning. Took me ages and every move HURT! Not in place even now. Duvet not squared at all. Had to give up after five minutes wrestling with duvet: Pain in arm SO bad that I was in tears!

[AHM42]

Scleroderma can be diagnosed by a simple blood test called an ANA (antinuclear antibody test). I would advise that you get this done to put your mind at rest.

AHM