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#1 lizzy

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Posted 28 October 2010 - 06:35 AM

I was diagnosed with CREST 5 years ago. I'd never heard of Raynaud's and scleroderma before. I researched as much as I could, maybe too much, went into a bit of a depression and took me a while to come out of it and I felt so alone. I didn't know anyone I could talk to about it. I have family but I didn't want to burden them, and I didn't want them to know all the details so I felt isolated.

I have calcium on my left elbow and plenty of it and the pain drives me insane. I also have it in my forearm, I have it on the tip of my middle finger left hand and on the top of my leg hip area and a small lump on my chin. I've had it removed from my right shoulder. I constantly ache mainly in my back and neck, my hands and feet are swollen fingers and toes bend and twisting. I have mild reflux and heartburn but getting worse now. I get out of breath quite easily but don't have any internal organ involvement. My joints ache shoulders, wrists, knees and elbows but I'm not as bad as some and I count myself lucky.

Be well everybody. Ever feel like a chat, feel free to chat to me.

liz

#2 Amanda Thorpe

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Posted 28 October 2010 - 06:55 AM

Hello Liz

Welcome to the forums! You'll most definitely find loads of people here who know what a life with scleroderma is like! I've had diffuse systemic sclerosis for 3 years now with recent, serious heart involvement.

Scleroderma has introduced me to the best people, both on line and face to face. Sometimes we just need to check in with people who face the same challenges that we do and I am so glad you have decided to do so.

You may want to consider joining a local group which the Scleroderma Society have throughout the country. I host a group for Essex, London and Kent and we're meeting again in the new year.

I've never had calcinosis but from reading posts about it I understand it can be quite painful and difficult to deal with as there is no real treatment for it. How do you manage it?

Take care and keep posting.
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#3 Joelf

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Posted 28 October 2010 - 07:32 PM

Hi Lizzy

Welcome to this friendly and informative forum. :bye:

I'm sorry to hear that you've been in such pain with your joints, neck and back; constant pain can be so wearing!

Like you I have Limited Sclero which unfortunately has also attacked my lungs and prior to taking medication my joints were very swollen and painful so I can understand a little of how you feel. I hope you are receiving good treatment from your doctor; it can make all the difference if you're dealing with someone who knows and understands the disease.

Thankfully I haven't suffered with calcinosis; we have got a lot of useful information HERE which you may find helpful.

I also host a local group for West Sussex and as Amanda says it's a great way to meet all sorts of lovely people who understand your feelings and can relate to what you're suffering.

I'm looking forward to reading your posts. :)

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#4 lizzy

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Posted 29 October 2010 - 12:05 AM

Thank you, Amanda, for getting back to me so quickly.

Calcium is a big pain. There's nothing I can do for it. I just use double base cream to keep it supple especially on my elbow but I'm forever knocking it. Occupational therapy made me a pad for it but I can't use it under clothes as it goes tootight, but it does come in useful to rest on it at he table when I'm on the laptop.

I think it's only the last 12 months that I've actually come to terms with having scleroderma. I can talk a bit more openly about it now but don't like to admit to my family that it scares the life out of me, as none of us know what lies a head but we do know what might. I have been talking lately to a lady in america with it also and now I have a friend who understands me she also has calcium which has given her a lot of suffering. I have regular tests lung function ecg's and echo's all of which are fine but what I can't understand is why I get so out of breath, I only have to carry things upstairs or bend over to fill the washer and I'm huffing and puffing. Any ideas why? It's taken me along time to actually write anything here or elsewhere but I feel better for doing so.

Thank you again,

liz

#5 Joelf

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Posted 29 October 2010 - 03:18 AM

Hi again Lizzy

Regarding your breathlessness it is difficult to pinpoint the actual cause, particularly if you've had lung function tests which haven't really told you anything conclusive. The same applies to chest xrays and CT scans. However, although I very much enjoy telling my long suffering doctor her job, I actually have no medical training and so can only advise you through my own experience.

I have a Fibrosing Organising Pneumonia which is a form of Lung Fibrosis and one of the first symptoms I experienced was a shortage of breath. I received wonderful treatment which did reverse some of the inflammation on my lungs but I still do suffer with a dry cough and occasional breathlessness; I find it does vary from day to day.

However I still do enjoy a good quality of life, despite the Scleroderma. I'm glad to hear that you've been able to come to terms with the disease; it certainly helps if you have someone you can discuss it with who will understand. I was the opposite to you when I was diagnosed; I have bored all my friends totally witless with every minute detail of my illness and treatment so much so now that I think they regard me as a sort of social leper!! :rolleyes: :lol:

Perhaps next time you go to your doctor you could explain that you are worried about being breathless and also about how much pain you are suffering and see whether he/she can give you something to alleviate it or at least reassure you; I do hope so.

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#6 Amanda Thorpe

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Posted 29 October 2010 - 05:41 AM

Hello Liz

There are many possible causes of breathlessness and obviously we can't say for sure. It could be anything from heart or lung problems to medication to just being unfit. We can become less active because of scleroderma so it's more of an effort to do things we used to do we ease.

I got out of breath for a long while which I think was initially because I had become unfit having become less active. However when it quickly worsened to the point that I would get out of breath in conversation it turned out to be something more serious, heart failure.

It is definitely a symptom to take seriously and discuss with your doctor, particularly if it quickly gets worse.

Hopefully it will turn out to be nothing serious but do let us know what your doctor says about it.
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#7 NorthStarHope

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Posted 29 October 2010 - 08:52 AM

Hi Lizzy,

Just thought I would send you a note, to let you know you are not alone, since I have found new friends on these forums, I have a much more positive outlook on things. You see my sister is the one who has diffuse scleroderma and I have wanted to help her so much, but there is only so much one person can do, the doctors have to do the rest. I just wanted to let you know that you are not alone and you will always find people who care, especially here.
:emoticon-hug:

Sincerely,

NorthStarHope

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#8 lizzy

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Posted 29 October 2010 - 09:38 AM

Hi there,

Thank you for talking with me. I haven't really been getting any where with my rheumatologist so my general practitioner has now referred me to someone else. I couldn't talk to him. Well I tried, he just didn't listen. He was great when he first diagnosed me, but as time went on and I didn't seem to be getting any internal involvement he seemed less and less interested.

He did send to see a cardiologist and I had CT scan and that was fine, as was lung function and echo. But he didn't want to hear how I was feeling or what pain I had. He never even gave me any medication, it's only this week that I've discovered from my general practitioner that I can take nifedipine for the Raynaud's, and she's given me a stronger anti inflammatory. My consultant never gave me anything at all, not even double base cream for my skin. Anyway I may get somewhere with this new consultant. Well, I'm hopeful.

With kind regards,

liz

#9 lizzy

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Posted 29 October 2010 - 09:43 AM

Thank you so much for your kind words, and I hope your sister is doing well.

Love 'n hugs,

liz

#10 lizzy

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Posted 29 October 2010 - 09:54 AM

Thank you again for the helpful advice. I do have a good quality of life, I just hurt a lot, but I do get out and about. I won't let it tie me down although it does get me down if I let it, especially if I read about what can happen or what's happened to other people.

On the whole I'm quite strong and now I've plucked up the courage to speak to other people and not just look at what others say. It really does make me feel that I'm no longer alone, I've got people I can depend on, I can get advise and maybe help others now myself.
Love n best wishes
liz xx

#11 lizzy

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Posted 29 October 2010 - 10:14 AM

Thank you Amanda, all my tests are fine, but now I've just got to wait to see a new consultant and hopefully get somewhere.

I don't know how long I'll have to wait for an appointment but hopefully she'll listen to me and not just rush me in and out. I I'll be sure to let you know how I get on, in the meantime I hope you are well and stay that way.
Love n hugs
:thank-you:
liz
X

#12 Amanda Thorpe

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Posted 30 October 2010 - 01:14 AM

Hello Liz

You may want to consider being referred to a scleroderma expert rather than another rheumatologist who isn't one. I find it shocking when you say you have not been prescribed any medication and it just goes to show what can happen if your rheumatologist isn't a scleroderma expert.

I am a patient at the Royal Free in London which is a centre of excellence for scleroderma and I highly recommend it.

Take care.
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#13 lizzy

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Posted 30 October 2010 - 04:19 AM

hi there amanda, at least I have good general practitioner's that listen to me,, and rheumatologist just seemed interested in worse case sinareo, but that just wasn't the case with me, well not as yet anyway. I didn't even know here were scleroderma experts I just thought they were all rhumatologists, so if things get worse I can ask to be referred to one, I see there's one not to far from me
thank you for your help
liz xx

#14 NorthStarHope

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Posted 30 October 2010 - 12:25 PM

Hi Lizzy,

Sometimes I dont understand people in the medicial profession, they are suppose to be caring and understanding and kind, maybe most of them are, but the nurse that my sister hand the other day at the hosipital was so very cold and unkind. I first noticed when my sister asked her a question and she did not respond, and I went to the nurses station and asked for something to ease my sisters pain, and you would have thought we were children in school, she actually yelled at me. I wasn't alone in taking notice of this, my other family members who were there the day before said the same thing. Needless to say, got another nurse. Overall most are very very nice.
Take Care :bye:

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#15 lizzy

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Posted 31 October 2010 - 04:46 AM

:angry: Dear Northstar Hope, don't you just hate rude and bad mannered people especially those who are supposed to be caring for you or like you say your sister. I must admit if they're like that with me I tend to let it go but be like that with a member of my famiy and you will be told.

How old is your sister may I ask? Next time they don't respond to her just ask them if they're hard of hearing and if they say "no why" just add "well do you mind answering when you are spoken to?" People don't need to ignored when they are ill.
All my love
liz xx

#16 lizzy

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Posted 31 October 2010 - 10:28 PM

Tell her not to take any nonsense, don't let people treat her like a peace of meat, don't let them walk all over her, they should be ashamed of themselves. xx Love 'n' hugs liz xx

#17 lizzy

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Posted 14 November 2010 - 11:24 PM

:emoticons-yes: I have now got my appointment to see the my new rhumatologist...but the down side is it's not until January but it's not to long to wait yipee. :bye:
With love 'n' hugs
liz xx

#18 Joelf

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Posted 15 November 2010 - 05:57 AM

Hi Lizzy

That's very good news about your rheumatologist appointment.

I'm looking forward to hearing how you get on in January.

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#19 christopher

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Posted 15 November 2010 - 06:01 AM

Hi Lizzy,

That's good news about the appointment I had a call today to say mine isn't until January as well, at least it's in the system.

Take care.

chris xxx

#20 debonair susie

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Posted 15 November 2010 - 09:30 AM

Lizzy, great news about your appointment! :jump-for-joy:
Special Hugs,

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