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Vanessa

Newly diagnosed and still stunned

21 posts in this topic

Hi Everybody

 

I was diagnosed last week with Limited Scleroderma CREST and I am still getting my head around the whole business!

 

I started having symptoms of pins and needles an numbness in my hands and feet back in mid May of this year and shortly after this Raynaud's began.

 

My hands started to swell up in July and now I have permanent hard "sausage fingers" They began to kind of curve inwards and get really hard, turgid almost - and the backs of my hands- all the time during the past couple of weeks.

 

I have started trying to stretch them quite hard and I am making tight fists and pressing my hands flat and it seems to work but do you think that I could do any harm?

 

Also the Raynaud's is improved over the last couple of days as the rheumatologist gave me nifedipress when he diagnosed me( I was having several episodes per day) and now only once or twice daily, but I am getting it in my nose now! Every time I go out! Any ideas how I can prevent it there as it is a bit difficult to cover up although I do walk around holding it with my gloved hand looking even more nuts than usual.

 

Lastly I am really quite worried as for the past few weeks my jawbone, cheekebones and the bone under my eyebrows have been very tender in a sort of line each side. With the nose Raynaud's I am wondering if this means that it is moving to my face. Any ideas?

 

It just seems that the whole thing has progressed quite quickly to me.

 

I am so happy to have found the forum as I do feel a bit "lost and lonely" and I REALLY appreciate you taking time to read my tale of woe.

 

Bewildered Vanessa

x

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Hi Vanessa,

 

Welcome to Sclero Forums! I'm sorry it's because you have scleroderma, but I am glad you found us. There are some great scleroderma experts in the U.K. Have they referred you to a scleroderma center yet? If not, it may be something you'd want to get started on, right away. It's a bit unusual for scleroderma to progress this swiftly, so you'd want to have the best possible care, by all means.

 

Here are some flowers for you: :flowers:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Vanessa

Welcome to the forums! You are in the right place for all things scleroderma.

You can indeed get Raynaud's in the nose, do have a look at our Raynaud's page. It's a difficult one to solve...what about a balaclava? laugh.gif

It's normal to feel stunned when you're thrust into the weird 'n' wacky wold of sclero, I was diagnosed in 2007 and had very quickly progressing symptoms. If you want to read about scleroderma I suggest you stick to this site or the UK Scleroderma Society site as some of the other information on the internet about scleroderma can be a tad hysterical. You may find it helpful to have a look at the What in the world is scleroderma booklet available on this site or the Understanding and Managing Scleroderma booklet available on the Scleroderma Society site.

As already mentioned by Shelley you may want to consider seeing a UK scleroderma expert. They're best placed to correctly interpret symptoms and come up with the best treatment plan for you.

I hope this helps and keep posting.

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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Vanessa,

Welcome to the forums. It is the best source of information and support that you will find on the net. Sorry you had to find us. I also have Mr. Ray visiting my nose. If I am just going a short distance I will put my gloved hand over my nose. If I am out for a walk I will pull on a balaclava or wrap a scarf around my nose. It looks ridiculous, but is certainly less painful that letting my nose have an attack.

 

You will discover that this disease can move fast and then can go into remission or slow down. It is horribly unpredictable. The important thing is to find a good doctor who will respond to your concerns and stay on top of any new symptoms. Preservation is the name of the game with this disease.

 

The other super important piece is not letting the fears keep you so occupied that you cannot live your life to the fullest. You will have to make some consessions and figure out work arounds to be able to maintain your life style and continue doing the things that you love the most. Build a strong support system, get a good doctor, and live your life to the fullest.

 

Jill

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Hi Vanessa

 

You've come to the right place for good factual information....and you'll find tons of support here too!

 

It is very important that you have a scleroderma specialist/rheumatologist...is the doctor that diagnosed you already specialized in it?

 

Hummnn...I didn't know that our noses could actually pain with Raynaud's? Not sure why, but I thought just the feet and hands would pain. My nose definitely gets cold and red now though...hummnnn


Sending good wishes your way!

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Hi Vanessa, glad you have joined us. I was diagnosed with systemic sclerosis 3 years and am still gettinhg my head round it , so you are doing pretty well after just a week.

 

Re your question about hand exercises-When I felt my fingers had started to be effected, I contacted the rheumatology department were I am seen (in the north of England) and was referred to a physiotherapist. They showed me a range of useful hand/finger exercises for me to do at home. I don't know where you are based , but could you contact the rheumatologist or rheumatology nurse specialist and ask them about physiotherapy?

 

I also have Raynaud's in my nose - I think it is pretty common, but unfortunately I don't have any solutions that don't involve looking silly!

 

Lizzie

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Vanessa,

Ditto to all of the advice you have already been given. All I can add is about keeping the nose warm and the hand exercise. Just in case you haven't already seen it, we have a large section on Raynaud's with lots of tips on how to stay warm and prevent episodes from occurring. Please check out the Raynaud's Main Menu. You'll find links to prevention, heat socks, rewarming tips, patient tips, etc.

 

To keep my nose warm I warm a turtle or scarf and just pull it over my nose when I'm outside (and sometimes inside.) Wearing a warm hat when you go outside is also very important! You lose a lot of heat through the top of the head.

 

The finger exercises that you are doing saved my hands! When my hands were idle I would stretch them out by pulling on them and then pressing them flat onto a tabletop - as flat as possible anyway. It was a hand doctor that set me up with a rheumatologist because she took one look at my hands and told me I had an autoimmune disease. She probably knew which one, but didn't want to say. So anyhoo - those are the things she told me to do to save my fingers. Today (6 years later) I just have a slight curl to the fingers.

 

I'm so glad that you have found us. As you have already seen, there are lots of people here willing to share information and experiences. Please go see a specialist and keep in touch. Let us know how you are doing and never hestitate to ask questions.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Dear Vanessa,

 

So sorry to hear of your diagnosis.

 

Everyone is giving you great advice for your nose, so I will try to add my two cents to your hands.

 

I think it is great to move and stretch your hands. In fact, for the first 2 years I saw a hand therapist who helped me move my hands to try to prevent permanent damage. I really think it helped. I cannot make a fist, but I do have some mobility.

 

If your fingers are starting to curl, your doctor can prescribe a splint or brace to wear at night to keep the fingers straight. I have one, custom made by my hand therapist. It's a hassle but you get used to wearing it, and now that my disease is slowed down (from other treatments) I don't have to wear it anymore. But, while my disease was in rapid-fire mode I did everything I could to TRY to prevent permanent harm. Unfortunately, there is no sure cure or fail-safe method. However, seeing a top specialist and, in your case, a hand therapist could be potentially very helpful.

 

Good luck!

 

Dusty

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A very big thank you to all of you.

 

I have asked to be referred to Royal Free Hospital but I guess it will take a while for my appointment to come through.

 

Meanwhile I have always refused to wear a hat of any description because it does me no favours at all. Now I reckon I will be treating myself to a balaclava and embracing the "armed robber" look with gusto!!! Felt as though my little nose was going to drop off today.

 

Oh how the mighty have fallen.

 

Off to give my digits a quick pull before bedtime. :thank-you:

 

Sleep well.

 

Vanessa

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"Oh how the mighty have fallen"...oh yeah! Scleroderma make us do things we never thought we would, embracing that fact now is a good thing! :lol:

 

The Royal Free is a centre of excellence for sclero, I am a patient there myself and they're marvellous. You will get the right treatment from experts in the sclero field as well as having access to the specialist nurses whilst you're there and by phone when you're not. I don't know how you plan to travel but parking can be a problem, even with a disabled badge, due to lack of space.

 

Take care and keep us informed.


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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Dear Vanessa,

 

So sorry to hear of your diagnosis.

 

Everyone is giving you great advice for your nose, so I will try to add my two cents to your hands.

 

I think it is great to move and stretch your hands. In fact, for the first 2 years I saw a hand therapist who helped me move my hands to try to prevent permanent damage. I really think it helped. I cannot make a fist, but I do have some mobility.

 

If your fingers are starting to curl, your doctor can prescribe a splint or brace to wear at night to keep the fingers straight. I have one, custom made by my hand therapist. It's a hassle but you get used to wearing it, and now that my disease is slowed down (from other treatments) I don't have to wear it anymore. But, while my disease was in rapid-fire mode I did everything I could to TRY to prevent permanent harm. Unfortunately, there is no sure cure or fail-safe method. However, seeing a top specialist and, in your case, a hand therapist could be potentially very helpful.

 

Good luck!

 

Dusty

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Hi Vanessa,

I just wanted to say I know what you're going through. I was diagnosed over a year ago with limited scleroderma CREST and I was devastated. After a year I do have a better outlook on it but still don't have all the answers I want and still have symptoms that pop up and I wonder if they're from the sdcleroderma or from something else. My rheumatologist has worked with me and has tried differant meds on me until we finally have me on the right track. We are still working on the raynauds. I get up to 5 attacks or more a day on the colder days. I have my heated throw that I keep on my chair at all time, mittens and booties that I can heat in the mircrowave and of course my heated blanket on my bed.

When I'm feeling lost or alone, I get on here and read messages and I try to join in the chats when I can. There's some good advice here and I've enjoyed reading it.


Gigi08

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Hello and welcome. Hopefully you can find some answers that help with the nose coldness- I have that too. Somtimes I have flashbacks to my mom checking the health of our dog by feeling her nose- I keep checking mine. :rolleyes:

You might check out some horse equipment sites- I have seen a number of head coverings that are like a ski mask except they are much more open around the eyes- less like you are heading off to rob a bank. :happy1-by-lisa-volz: They are light weight and sort of soft and fuzzy too. They cover the nose and mouth.

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Hi Vanessa,

 

I'm just popping in with a welcome too. I'm glad you found us.

 

Cold noses. Oh yes. My hubby keeps checking mine out, I have no idea what the fascination is because he doesn't like my 'fish fingers' (frozen in USA English) or icy cold toes. It seems by dog standards I'm really quite healthy too. rolleyes.gif

 

If you'd like to try the grunge-chic look, find an Army Surplus shop and look for a headover. It's a nice tube of very fine woolen knit that you can wear like a cowl or hood and pull the front up to cover the nose when need be. Of course it only comes in olive green, but when you think of it, that goes with nearly everything!

 

Welcome again!


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Vanessa

 

Just wanted to say hi from a fellow English person. I have had a cold nose for quite a while & my hubby keeps checking mine as if I was a dog! He says I have 'chicken fingers' due to the pale ivory colour they go when I first start with an attack of Raynaud's, I've tried quite a few meds for it (including Iloprost infusion which didn't help) & am now taking liquid Prozac which is helping a little by cutting down the number of attacks in one day. It also seems to help my cold nose a little. The other thing I bought recently was a bit like the description Jeannie said about a sort of tube which can be worn on the head in various ways and has a scarf. You can get them in alsorts of colours & patterns from Ski shops / outdoor clothing, if you want to know the exact make / shop then send me a pm.

 

Buttons

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