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New Member diagnosed with Scleroderma in 2007.

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#1 queenie


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Posted 08 January 2011 - 12:44 PM

:emoticon-bang-head: Hi,

I am a new member; I was diagnosed with scleroderma in 2007 and then told I have Raynaud's, pulmonary fibrosis, M.E., fibromyalgia, cervical spondulosis of the spine over the following years to date. Now I am banging my head against a brick wall (hence the picture) as I am on over twenty different meds.

I need to talk to people who can understand as I don't want to worry my family.

#2 Joelf


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Posted 08 January 2011 - 07:36 PM

Hi Queenie

Welcome to these friendly and informative forums!

I'm sorry to hear that you've got so many health worries; however now you have found our forums you will be able to meet many new friends who understand how you are feeling. :)

I know how hard it is for friends and family to understand about having an illness such as Scleroderma; I also have pulmonary fibrosis and Raynaud's, so can empathise with you. We have a couple of links to Pulmonary Fibrosis and Raynaud's which I hope you will find helpful. I don't suffer with fibromyalgia myself (thankfully!!) but we do have quite a few of our members who do and I'm sure they will be joining in to give you some advice.

Are you receiving treatment from a Scleroderma expert? Sadly a lot of rheumatologists don't really understand such a complex disease as Scleroderma and so it is important to ensure that you are referred to a specialist. They would also be able to ensure that you are on the correct medication and would be able to monitor the effects of the drugs you are taking. We have a list HERE of Scleroderma specialists.

Do please post again and let us get to know you and how you are faring.

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#3 martinisweetie7


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Posted 09 January 2011 - 04:53 AM

Hi Queenie!

I'm newly diagnosed too. It's been a year for me.

I know how really frustrating it is with all the medicines the doctors throw at you. It seems my pharmacist and I are best friends now. :lol:

Dealing with how to talk to friends and family seems to be the hardest; I face the same issue. On one side, I don't want to tell them everything because I don't want to upset them. On the other side, it seems that my friends and family don't fully understand what I'm going through.

I found this forum at the recommendation of my therapist. It's good to know that everyone here knows what you're going through, and understands. Hopefully this forum can be your place of solace, just like it has been for me. You can PM me anytime if you need to talk to someone!

Hope you are feeling better! I'm in New Jersey and if where you are is anything like it is here, stay warm today!!!

~ J

#4 Jeannie McClelland

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Posted 09 January 2011 - 08:09 AM

Hi Queenie,

Welcome to the Forums. It takes time to come to grips with a new diagnosis, never mind the tests, treatments, doctors' appointments! To misquote Quasimodo (The Hunchback of Notre Dame): "The pills, the pills, they make me crazy!" I've had to give over the drawer in my nightstand to pill bottles myself, so you'll understand when I say I rattle when I walk. :P

We've got a good section of information on fibromyalgia/myalgic encephalomyelitis (chronic fatigue syndrome) that might be of interest to you in addition to the links Jo gave you.

I hope you are staying warm and having a pleasant weekend,

Best wishes,
Jeannie McClelland
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#5 Amanda Thorpe

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Posted 09 January 2011 - 08:20 AM

Hello Queenie

Welcome to the forums! I was diagnosed in 2007 with diffuse scleroderma and Raynaud's and made it until 2010 before developing myocardial fibrosis, postcapilliary pulmonary hypertension and subsequent heart failure. In September I had a pacemaker defibrillator put in and have been much better. Unfortunately it has done nothing for the fatigue though!

The Scleroderma Society has various local groups that meet throughout the country. I host one that meets in Essex and the support it gives to people, including me, is invaluable, our next meeting is this Saturday. The Society also has a helpline number 0800 311 2756 available between 9:00 a.m. and 9:00 p.m., calls from the UK mainland are free.

Take care and keep posting.
Amanda Thorpe
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