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inkedup

New rapid symptom with contracture

14 posts in this topic

Hi all.

 

I haven't been feeling very well lately at all. Then the other night I had a bath, and looked at my foot a bit more closely and thought it looked very odd. I realised that 4 of my toes on my left foot have contracted, they look claw like. I am quite worried to be honest as I have limited Scleroderma, and didn't think that symptoms came on so progressively in this way. I also have not found much info on the net, it's all about hands! Any help appreciated!

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Hi Inkedup,

 

How lovely to hear from you again, although I'm sorry that it's because you've been feeling poorly.

 

Skin thickening in Scleroderma can cause fingers and toes to contract, although there are other conditions such as hammer toes which have similar symptoms (my husband suffers with this and it can be very painful.) However, as my medical knowledge is limited to a now out of date first aid certificate, I would advise that you discuss these new symptoms with your general practitioner or consultant, if you're able to get an appointment with him. I've included a link to our medical pages on Skeletal Involvement (which includes toes) and also Skin Involvement.

 

Do let us know how you get on.

 

Kind regards,

 

 

 

 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Inkedup

 

I have diffuse scleroderma and the skin on my toes has softened so they are now less curled but they still aren't what they once were. Finger contractures (sclerodactyly) is another story and the photo is of my hands. According to our page on Limited Scleroderma, it is diagnosed when there is tight skin limited to the fingers but it can affect every part of the body, including the skin, blood vessels and/or internal organs.

 

I can't say what type of scleroderma you have but what I can suggest, after having scleroderma for 6 years and being involved both virtually and face to face with many people with scleroderma, is that the disease does not always conform to the labels we put on it. Have a read of my recent blog, inspired by a conversation that took place at a recent meeting of sclerodermians, in which one person explained that their expert had said it was possible to have both limited and diffuse furthermore there may not be these categories but just one disease with many, many different presentations.

 

So I guess anything is possible with scleroderma but talk to your rheumatologist if you're concerned and let us know what they say about it.

 

Take care.


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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Thank you both, and your blog was very useful Amanda. I have actually had limited scleroderma since my teens, and I'm 45 now, so was not expecting any surprises now. I have the typical CREST pattern, but no S! I did not even notice my foot particularly, apart from some skin thickening on the bottom, and some dry patches, and feel surprised by it all! I do have multiple autoimmune problems, but just felt my Scleroderma was fairly controlled. I'm now wondering if my menopausal symptoms are causing things to get worse, with my hormones all over the place! I have a rheumatology appt in 4 weeks, so hopefully I may get to see them beforehand; however I should have been seen in July, and Chapel Allerton are really behind - think the NHS is feeling the pinch at the moment!!  :thank-you:

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Hello Inkedup,

 

Sorry to hear about this. I will be curious to hear what your doctor has to say. I have CREST as well, without the S too severely anyway, but I have the same thing going on with my toes. I looked at my feet the other day and thought "Who do these belong too?!" :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thanks Sweet. Sorry to hear that you are also experiencing this.  There doesn't seem to be much info available, its all about hands. 

 

I will update the blog once I hear more. I keep looking at my toes as if I've dreamt it. Its not painful or swollen particularly, but the problem with feet, is that it's hard to tell as they are used and abused a lot, so I'm not sure what to notice!

 

I think if its on your hands its more obvious. I'm just worried if it gets worse, will it eventually affect my walking.

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Ladies,

 

Would one or both of you consider adding a photo of your feet and toes to our photo gallery, pictures of skin involvement? As you say it's not well know and here's an opportunity to make it more so.

 

Take care.


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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Hi Inkedup,

 

Thanks so much for posting your photo; I've put in a link to it so that our members can view it easily!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks Inkedup it's always helpful for people to see a symptom, particularly when it's not a usual one. You might want to discuss with your rheumatologist though.

 

Take care.


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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New update - saw the rheumatologist; they are a bit concerned. She can't work out if it is muscular or neural, so I am being sent for scans, and if these are normal she's going to follow it up as something is obviously wrong somewhere. Now what I wonder!!

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Hi Inkedup,

 

Sorry to hear that you're having to have more scans, but at least the rheumatologist is taking your symptoms seriously and hopefully trying to get to the bottom of it.

 

Please do let us know the results of your scans.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Jo's right, although we don't enjoy tests they mean whatever is being taken seriously. I can't wait to here what the results are, something unusual I am sure, you're not one for the mundane!

 

Take care.


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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