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Newly diagnosed

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#1 Caroline F

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Posted 27 April 2010 - 09:14 AM

Just wanting to say hello as diagnosed with Scleroderma in January. Not sure what variety I have but Rheumatologists reckon I've had it in a mild form for years, so fingers crossed it stays that way. Mainly stiffness/weakness in fingers, which are getting fatter and fatter and progressively worsening Raynauds - dreading next Winter.

If I think about other stuff that I'm troubled with and whether that's part of it, I start to feel like a hypochondriac and get quite confused about the whole thing! The doctors are refering me for an Echo and Lung Function Test, but say they expect a negative result.

Anyway, I wanted to ask, is fat fingers a common symptom of Scleroderma and is there any way to lessen/relieve the problem? The doctors want to given me (for the Raynauds) Nifedipine to start and are talking about Iloprost Infusions before Winter. Trouble is I'm breastfeeding my son so am absolutely gutted about having to cut that short (although he is 14 months old).

Anyway hello everybody, that's me and my rarity in a nutshell.

#2 Jeannie McClelland

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Posted 27 April 2010 - 09:35 AM

Hi Caroline, welcome to the Forum!

I think most of us would say yes, fat fingers are a feature of scleroderma (try saying that 3 times, fast!). Improving the circulation seems to help some people, I think, and that should come with the treatment for the Raynaud's. I find that just using my hands helps and I have some exercises and stretches I do first thing in the morning to help work out the swelling and stiffness I always wake up with. You might want to ask to see a physical therapist.

It's important to tell your doctor of all your symptoms. Don't forget, you now have a diagnosis that can cause all manner of symptoms and kind of rules out being a hypochondriac. ;)

Have a look at the list below. Post often and let us get to know you.


Systemic Scleroderma Symptoms

 Swelling of hands, feet and/or face
 Raynaud’s: fingers and/or toes turn white or blue due to cold or stress
 Ulcers (sores) on fingertips or toes
 Difficulty swallowing
 Heartburn (reflux)
 Constipation, diarrhea, irritable bowel syndrome
Heart, Lungs, Kidneys
 Shortness of breath
 Pulmonary (lung) fibrosis
 Aspiration pneumonia
 Pulmonary hypertension
 High blood pressure or kidney (renal) failure
 Right-sided heart failure
Muscles & Tendons
 Tendonitis, or carpal tunnel syndrome
 Muscle aches, weakness, joint pain
Excessive Dryness or Sjogren’s Syndrome
 Excessive dryness of the mucus membranes (such as eyes, mouth, vagina), which is sometimes called Sjogren’s Syndrome
 Tight skin, often on hands or face
 Calcinosis (calcium deposits)
 Telangiectasia (red dots on the hands or face)
 Mouth becomes smaller, lips develop deep grooves, eating and dental care become difficult
Many of these symptoms can occur by themselves or can be due to other things. Symptoms such as heartburn,
high blood pressure, constipation and muscle aches are common in the general population. More unusual symptoms, such as pulmonary fibrosis or tight skin, may be more likely to lead to a diagnosis of systemic scleroderma.
Jeannie McClelland
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#3 Angel Sky

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Posted 27 April 2010 - 10:21 AM

Hi Caroline!

Welcome. I am fairly new myself. Hope your day is going well. I was diagnosed last summer after having suffered for 5 years with what 3 Rhuematologists thought was RA. So I was not being treated properly, especially for my lungs. All the doctors thought I had allergies(all year long ? and in 2 different states?) Well, I have severe Pulmonary Fibrosis now, so I guess they were wrong!!
Anyhow, just a word to the wise, any new symptoms you have should be well documented and discussed thoroughly with your doctor. If your doctor is not one to listen, find another!! Your health is more important than the doctors feelings. Take care! :flowers:

#4 warmheart


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Posted 27 April 2010 - 10:27 AM

Hi Caroline, and welcome! I get fat fingers too; join the club! <_<


warmheart :bye:

#5 Lil Dee

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Posted 27 April 2010 - 09:46 PM

Fat Finger Syndrome !? Oh yes, indeed....I haven't worn my engagement/wedding rings now for about six months (and I've only been married 18 months!) due to this particular issue. I too am new to the lssc diagnosis, so am just realising what is the condition, and what isn't, and there's not much that isn't !

Raynauds was my primary indicator, and I have suffered with it for approx six years now (for two of them I have been arguing with my general practitioner that it isn't JUST Raynauds). I got my Scleroderma diagnosis about three months before the other symptoms became noticeable. The patch of dry skin on my finger is now very obviously not just dry skin, and the niggling pain, that is getting worse, in my joints means I am looking at starting Plaquenil in the near future which I hope will help.

I too have had the echo-cardiogram and the lung function tests in conjunction with a chest x-ray (I had had a fall just before they did the lung function test, which had incurred rib bruising, so I think they were just being ultra-careful) but they all came back normal.

As for the hyperchondria, I know exactly what you mean ! I think we all have to have a little bit of it in is, as Angel Sky mentioned, it's important to notice changes that could be a signal to your doctor, even if not for you.

Take care of you and yours, LD x

#6 Caroline F

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Posted 27 April 2010 - 10:36 PM

Good to hear from you, thanks for your replies and the information.
It does seem from looking round the website that doctors get it wrong a lot, which is rather worrying when it's our health that's at stake.
One of the things I was feeling hypochondriac about was IBS which I've had for longer than I care to remember. I asked the Rheumatologist at my last (second) consultation whether that was part of it, after reading the leaflet he gave me about Scleroderma when I first went. He said no it wasn't as it only affects the oesophagus in the digestive system! This is the reasons it's so confusing, you can't trust what the doctor says is correct by the sounds of things.

#7 janey


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Posted 28 April 2010 - 04:33 AM

Welcome to the fat fingers club Darlin! I think it's pretty common. However, somewhat good news, during year 6 (I'm now well into year 7), I lost the fat finger syndrome in all but 2 fingers per hand. The index and middle fingers of both hands are still fat, but the other fingers have shrunk so much that I can know wear my wedding ring again which I something I haven't been able to do in over 25 years! It means my ring finger is a size 4! What's up with that - I have no idea, but I like it. You can relieve some of the stiffeness and pain in the fingers by exercising them - making a fist, stretching, pulling, bending the fingers. That kind of thing helped me.

Congratulations on being a mother! Please make sure that your doctors know that you are breastfeeding before taking any medications. Hope you find something that helps with you Raynaud's and IBS - two of the more unpleasant things about scleroderma. Let us know how you are doing and please, visit often.
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#8 Joelf


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Posted 28 April 2010 - 08:24 AM

Hi Caroline

Welcome to the forum & the 'Fat Fingers' Club!! :)

I'm also a member of that club & in fact had to have my wedding ring cut off when I had the carpal tunnel decompression operation. I then had all my rings made larger which cost me an absolute fortune only to have my fingers go down when Sclero was diagnosed & I was put on anti-inflammatories (Prednisolone)!! :rolleyes:

I daren't have them made smaller again in case my fingers swell up if I come off the steroids.......I couldn't afford it!! ;)

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#9 Deb1million


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Posted 28 April 2010 - 08:40 AM

hello Caroline. welcome to this friendly forum

I also have sytemic sclero, with multiple overlaps. I know what you mean with trying to get the right diagnosis. When I was being seen by a gastroenterologist about 3 years ago, he insisted I had IBS, but what I was trying to explain to him was a slow digestive system, I never have diarrhea, but couldn't make him understand what I now know to be Dysmotility. Since my sclero diagnosis, he accepts the difference.

My chunky stiff fingers are getting better on a mixture of Cellcept and Plaquenil. It has also helped my breathing. I hope it helps you, too.

Best wishes, hope to hear from you again soon


#10 Sweet


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Posted 28 April 2010 - 09:47 AM


Let me join in with the others and welcome you to the Sclero Forums. So glad you've joined our family. :flowers:
Warm and gentle hugs,

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