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Hi, I am new and new to this disease as well.


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#1 jad12

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Posted 26 April 2012 - 01:13 AM

I'll just mostly say what I just wrote in my profile, if that is ok plus a bit.

I am about to go to a rheumatologist to be diagnosed with systemic scleroderma. After I got Raynaud's I went first to a general practitioner who then sent me to a young internist and I finally decided to research what was wrong with me six months down the track from the first general practitioner visit. Now I see why the internist asked those weird questions! I'm so glad I didn't stop at the general practitioner and I'm glad the young internist doctor knew what he was looking at though he didn't tell me what he suspected it was.

It's pretty obvious what you have when you have Raynaud's, then skin thickening on hands, loss of mobility in fingers, itchy arms to elbows, and a stiff face with some difficulty opening your mouth that you have scleroderma. Google whips it up straight away. It was a shock to me. I'm so healthy in every other way.

I talked it out with my husband and told him some of the things we could expect (thank you this site, many others and some good medical books)

So now I wait for my appointment. Meanwhile I am looking up information and here I am.

My husband says we don't know what will happen and we'll get through it together. I'm feeling sad and apprehensive but in the meantime on my morning dog walk I am doing some hand and arm and wrist stretches and some facial stuff as well. Luckily it's dark that time of the morning so I don't look weird doing it.

I live in New Zealand.
So hello from my corner of the Pacific!

#2 judyt

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Posted 26 April 2012 - 02:28 AM

Hi Julie,
I received your PM before I uploaded this post so my reply to you might already be a bit out of date!!

Welcome to the Forums, as you have said yourself you will get excellent information here and there is no limit to the questions you can ask.

It will be nice to have somebody else in our time zone and maybe we can help each other find good practitioners.

Warm Hugs - it is starting to get cold and you might need them.
JudyT

#3 Joelf

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Posted 26 April 2012 - 05:52 AM

Hi Jad12,

Welcome to these forums!

I'm sorry to hear that you've been having health worries about Scleroderma. Sadly a diagnosis isn't always obvious despite blood tests and clinical symptoms as Scleroderma is a notoriously difficult disease to diagnose and the symptoms can relate to a number of health problems. We do therefore always recommend that if possible you consult a Scleroderma specialist. I believe that Judy has said previously that there are no Scleroderma specialists in New Zealand which I realise does make it rather difficult for you to get a definate diagnosis. I do hope that the rheumatologist to whom you've been referred is able to help and advise you. Perhaps you could refer him/her to some of the relevant pages from this site when you have your appointment.

I've therefore included links to Raynaud's, Scleroderma skin involvement and Microstomia (Small Mouth) to give you more information about your particular concerns.

I can fully understand your feelings of apprehension and sadness as like you, prior to developing Scleroderma, I had barely a day's illness in my life and considered myself as strong as an ox!! However, now you've found our forums and joined our community you will find a wealth of help and advice here.

Please keep posting and let us know how you get on with your appointment with the rheumatologist.

Kind regards,

Jo Frowde
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#4 Sweet

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Posted 26 April 2012 - 09:00 AM

Hello Jad12 and Welcome!!!

It can be very scary when you may be diagnosed with a disease. Jo has given you terrific links, that should prove to be very helpful for you. We all look forward to hearing about your appointment, and how it turned out. Please keep us posted.

We have several other members here from NZ, I'm sure they will chime in soon. I'v spent a lot of time in NZ myself in the past 4 years, beautiful country!

Looking forward to knowing you better. You'll love being on the forums. There's an amazing amount of information, support and friendship.

Welcome!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 debonair susie

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Posted 26 April 2012 - 09:09 AM

Hi jad12,

I am so glad you have found this site and have posted! You will find many caring folks here who are either on the early path, like you, or who have experiences to share. Please know that there is a WEALTH of information here; there are people from all over the world (I am in the US) and I'm so happy that you and JudyT have gotten a bit acquainted, being from the same "neck of the woods"! :emoticons-clap:

Jo provided good links for you to peruse and hopefully, as time passes, you will relax a bit more. When I was first diagnosed, I had already been presenting with symptoms for 4 years prior, the first of which was Raynauds. By the time I got my diagnoses, I was stunned, because up until then, I was "perfectly healthy"! I had always been VERY active in sports, as a younger person and continued participating in anything that struck my fancy!
I had no computer access, so my resource was the library! I had not heard of any of the diseases that I was diagnosis'd with, which made it so difficult (for me) to cope with; I am so happy to be a member of this wonderful site and to have the time to have become my own advocate; it's so empowering! The feeling you are experiencing are certainly to be expected, yet I am so happy to read that your husband is the great support he is and that you do seem to have much more knowledge than I did.

I look forward to your postings and am anxious to read how your appointment went with the rheumatologist.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Amanda Thorpe

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Posted 26 April 2012 - 10:15 AM

Hello Jad12

Welcome to the forums! As I was reading about your facial exercise outdoors I was thinking I hope it's dark and hey presto you went on to say it is because you'd probably look a lot weird to be honest.

What to expect? Who knows, it's anyone guess for sure, although there may be a range of symptoms you could get no one can say whether you will or you won't. Scleroderma is such a vast and bizarre disease, it has disabled and debilitated me but other people are still able to go about their daily lives as before. Your attitude, and that of your husband's, is paramount an you clearly have the right one towards this disease.

Have a look at our video section as we have them about the different types of scleroderma, diagnosis of it and some of the symptoms of it.

Whatever you do stay here on this site and post often.

Take care.
Amanda Thorpe
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#7 jad12

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Posted 26 April 2012 - 01:20 PM

Thank you everyone. I think I was so lucky to get this visiting internist from America; he's going back to the U.S within the year unfortunately. I've read most of what's on this site and watched the videos too- it is all very helpful. I've taken some screen shots on my iPad of various information from online and books including tests and so on that can help differentiate limited and diffuse scleroderma because I am hoping the tests will give a better indication of what I have and I want it handy so I can see what the doctors are talking about- I may also print it off and give it to the rheumatologist though I suppose he has medical books of his own, haha.

Thanks again for the warm welcome, I'll let you know how it goes.
Julie

#8 amberjolie

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Posted 26 April 2012 - 09:01 PM

Hi!

I don't post too often, and don't have much else to add to what everyone has said, but I thought I'd join in the welcoming! I'm relatively new to all this, too - although symptoms started about 2 1/2 years ago, my "official" diagnosis came this past January from a skin biopsy. I hear you on the Raynaud's, the skin stiffening on hands and face, the loss of finger mobility, and the itchiness - oh, that itchiness! Drives me nuts some days. I also have joint pain - are you having to deal with that? I'm trying to find a medication that might help, but so far nothing's worked.

Sorry to have to welcome you here, but hope you're able to learn and get the support you need!

#9 debonair susie

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Posted 27 April 2012 - 09:50 AM

Hi amber!

I'm so glad you posted here!
Yes, the itching can drive one nuts, can't it?! When my skin became taut, my itching was relentless! I used oatmeal soap to help with that, but even still, it was only a temporary fix. However, my skin has since softened, so the itching issue is no longer, for me.

Great to see you posting and hope to see you more!! :emoticons-thankyou:
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#10 jad12

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Posted 27 April 2012 - 12:20 PM

Hi Amber. The itchiness is annoying. It woke me up a few times even. I don't do anything for it but now that I know what is causing it I just try not to scratch. My onset has been very recent, within the last six to eight months so it's still early days for me. My hands were a bit achey yesterday but I put it down to the stretching the day before.

The biggest issue I have right now is stiffness in my hands (especially in the morning) and the pulling sensation at wrists and inside elbows. The feeling reminds me of painting the house and getting paint on my arms which then pulled at the skin and hairs when it dried.

My fingers feel like cooked sausages like when sausages swell up? Making them harder to close. I've been trying to learn to play country blues finger style on guitar for a few years now and I may have to give it up. It was always hard to make a thumb over F chord to start with and this sure isn't helping.

The facial exercises I've been doing while dog walking have helped more than I thought they would and it's much easier to eat hot dogs now. However, my face is feeling weirdly numb today around my nose. I think the wrist and arm stretching I am doing is helping too.

The other thing that is a pain is it's hard to get up from the ground which was a real problem when I was camping a few months ago sleeping on the floor of a tent. At the time I was puzzled and put it down to getting older. I've always been quite fit and flexible. Now I know it might be part of this. I bought a camping cot. :P and I just make it a point when gardening or whatever not to sit on the ground.

Yesterday at work I had on gloves because I was going outside with my yoghurt in my hand and someone asked somewhat incredulously if I was cold. Here in NZ it is pretty warm out still for fall, we're just wearing cardigans and a lot of us are still in shorts. So I showed her my blue fingers and said yes and that's why I am wearing gloves.

I'm probably not going to tell people at work what I've got- I don't really see the point though I may or may not tell my boss at some stage.

#11 jad12

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Posted 27 April 2012 - 12:23 PM

Amber, by the way I forgot to say, did you try simple aspirin for the joint pain? Also, would warming your hands or joint area help? Possibly using those camping store "hot shot" packets that heat up. My doctor said putting them on the inside of your wrists is more effective than on or in your hands.

For the wrist joint pain I also suggest one of those rubbery/fuzzy reusable supports that Velcro up (they have a thumb hole). When I had what I thought might be carpel tunnel in one wrist a few years ago that helped support it (you can make it tight or loose to suit) and reduce pain significantly. I wore it 24/7 for a few months. At the time I was just about to start weight lifting at the gym and I wore it then too. After some months of weight lifting the pain was gone. You can buy them at the chemist/drugstore and get knee ones too. Probably elbow ones as well. Hopefully you will find something to help.

#12 Joelf

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Posted 27 April 2012 - 01:07 PM

Hi Jad12,

I've suffered with swollen tight fingers such as you describe and I've found a couple of links for you on Hand Exercises here and here which I hope you'll find helpful. Like the facial exercises I think it also helps to keep your hands and fingers moving.

I've also used the wrist and knee supports (and still do) at the gym like you and have found them very useful.

Kind regards,

Jo Frowde
ISN Sclero Forums Manager
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International Scleroderma Network (ISN)


#13 jad12

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Posted 27 April 2012 - 08:33 PM

Thank you for the links Joelf, I'm going to take a look!

#14 amberjolie

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Posted 27 April 2012 - 09:35 PM

Hi jad12,

I can't remember if I've tried aspirin, but I've tried other NSAID's and the plaquenil. Neither of these have seemed to even take the edge off.

I have tried those "hot shot" type packets you've mentioned, although I haven't tried them on my wrists. My Raynaud's seems relatively manageable for me, only mildly annoying.

I haven't tried supports for my joints. That might be something to try for when I sleep, because sometimes my knees wake me up at night. For me it seems like the pain happens mostly if my joint has been bent, and then I try to straighten it. I used to do a lot of sport and physical activity, too, and this type of joint pain is just so unlike any sports injuries I've had in the past. But I'll see if I can get ahold of a support to try.

Thanks for the suggestions!

#15 rubydoo

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Posted 28 April 2012 - 05:40 AM

Hi Jad12

I don't post very often but read your post with interest as I too describe my fingers as swollen sausages. I have recently been suffering with very stiff painful joints, particularly my elbows - excruciating some days and even picking up a cup of tea hurts. I was previously on the NSAID Naproxen, prescribed by my general practitioner. This was working very well on my joint pain, however when my rheumatologist found out I was taking them she stopped them immediately,even though I take esomeprazole twice a day. She says that the risk of getting strictures in the oesophagous is almost a certainty for scleroderma sufferers if they take anti-inflammatories. What do other people find helpful for their joint pains as it is now beginning to restrict my daily activities - can't do ironing, cleaning windows, etc (no bad thing I hear you all saying, LOL) and I have stopped going to the gym. I tried an elbow support given to me the physio but this just made the pain worse.
When I was first diagnosed, 2 and half years ago, I also was feeling pretty much like you are now, especially since I also have lung involvement. Eventually you find your own way of coping with it and if your medics are as supportive and caring as mine have been then all the better. It also helps to use these forums even if you only view other posts.
By the way you still LOOK weird in the dark but nobody can see you
Take care and keep posting
Helen

#16 jad12

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Posted 29 April 2012 - 02:50 AM

Lol Helen, luckily only the dog is around, I take her usually at five am, there are only a couple other hardy souls out that early.
One guy, a fireman who jogs has a HUGE dog the size of a shaggy pony but it seems very calm and quiet. One of my dogs is a male shepherd and he's small in comparison. I accidentally walked past it close up (it was pitch black) and it gave me a start! The fireman was ahead a little doing stretches.

Amber, I used to wear my wrist support to bed as well because it helped imobolize my wrist so I wouldn't wake up with it sore.

My knee joints are sorer than I thought but only when I squat or kneel which I've been avoiding since camping. Great, just what I need, another exercise to do while dog walking. Picture me squatting, grimacing and wringing my hands in the pitch black with a dog.

#17 Amanda Thorpe

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Posted 29 April 2012 - 12:33 PM

Hello All

Yep I too was told to avoid NSAID's (non steroidal anti-inflammatory drugs) such as ibuprofen, aspirin and voltarol because of the damage they can cause people with scleroderma. I was using voltarol as a suppository thinking it was avoiding my esophagus and stomach but the general practitioner said it makes no difference how you ingest it, damage can still be done and gastric bleeds caused.

So I have not told my doctor I am taking NSAID's again (out of desperation) and I don't intend to which is a personal choice but I have to say the party line is that people with scleroderma should tread carefully when it comes to NSAID's particularly if reflux is a problem.

Take care.
Amanda Thorpe
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#18 night owl

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Posted 01 May 2012 - 03:45 PM

Hi

It has been my choice to take ibuprofen as I find it very beneficial for joint pain, never been told not to take it but as I already had the strictures in the oesophagous, heart burn and swallowing problems before I started it, which might make a difference. My Rheumatologist put me on a PPI (proton pump inhibitor) to help improve the oesophogeal problems. The balance between the medication has been fine for me so far.

Night Owl

#19 jad12

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Posted 11 May 2012 - 12:08 AM

Well, the doctor just confirmed I've got scleroderma (no surprise) and it's diffuse. Also no surprise, but not welcome anyway. So that stinks. Now I have to tell my extended family. I was just waiting confirmation.

I ran across two books I'd like to own: "The First Year: Scleroderma" by Karen Gottesman which looks quite good and "The Scleroderma Book: a guide for patients and families" by Maureen D. Mayes.

Anyone else on here got the diffuse kind?
I wonder how long I can keep working, it's supposed to be a highly variable disease right?

#20 Joelf

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Posted 11 May 2012 - 01:55 PM

Hi Jad12,

Sorry to hear that you have had your diagnosis of Scleroderma confirmed, although sometimes it can be a relief to know exactly what you have to deal with. I found the worry of not knowing why I felt so unwell and the uncertainty was one of the worse parts of it.

I've got copies of both those books you mention and have found them informative and helpful. We also have some ISN books "Voices of Scleroderma" and I've included a link on Diffuse Scleroderma which includes one of Amanda's excellent videos which I hope will give you some more help and advice. It is a very variable and complex disease; part of it's complexities is that it takes many different forms and affects sufferers in many different ways. I know Amanda took early retirement as she was unable to work due to having diffuse scleroderma and I think that has applied to some of our other members as well and I'm sure they'll be along to give you more first hand information.

Kind regards,

Jo Frowde
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