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#1 PUZZLINGPATTY

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Posted 23 March 2009 - 03:11 PM

I feel lost and all alone despite my wonderful husband and sons. I came home from lacrosse practice -- which I didn't even get out of the car to watch because the heartburn was so bad. By the end my back and sides sent me into meltdown mode. I've just been diagnosed with systemic sclero/chronic myofacia pain/ fibromyalgia and I get to go to the MS clinic on April 1st. I can tell already what a wonderful 40th birthday I will have this year. Honestly I just don't know what to do or who to turn to. I really don't believe my rheumatologist knows that much about scleroderma. She is literally waiting for my hands to turn blue and that's it. Meanwhile my heartburn is so painful along with the multitude of symptoms.

Does anyone have any advice for coping or finding a doctor in Florida?



#2 Jeannie McClelland

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Posted 23 March 2009 - 04:18 PM

Dear Patty,

I'm so very sorry you are going through such a difficult, horrible time. You needn't ever feel alone - you've come to the right place and have instantly made many new sympathetic and understanding friends. You can weep, rage, and even laugh (you might not believe that but it is true and will come in time) here and we'll hold your hand and send you warm hugs.

First things first, we have a great section on Emotional Adjustment, which has good advice on coping, pain management, quality of life issues, etc. Once you are able to start treating your symptoms and getting them under control, one by one, you'll be amazed how much better you'll feel. I'm speaking from experience here, Honey, and others will tell you the same thing.

Heartburn - GERD. Ah, that's really fun, isn't it? There are a lot of ways to tackle this one - various medications, some simple lifestyle changes. Have you seen a GI specialist? That might be a good first step.

Finding a doctor in Florida -- the American College of Rheumatologists maintains a state by state directory -- here's a link for Florida. Since scleroderma is relatively rare, many rheumatologists might not know a lot about the disease. It would be a good idea to call the doctors listed for your area and ask if they have a particular area of interest. I know that we do have Forum members who live in Florida - hopefully they'll see your post and chime in.

If you need any help navigating the site, let me know, OK? Don't try and read everything all at once! Most of all, know that you aren't alone.

Warm hugs and heartfelt best wishes,


Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
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International Scleroderma Network

#3 Peggy

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Posted 24 March 2009 - 05:44 AM

I too have systemic sclero and have terrible reflux/heartburn and still do. I'm on a variety of meds for this and without them the heartburn turns into an all-out raging fire that feels like I'm being burned alive from the inside out. This then requires that I take what the doctors call a "GI Cocktail" that numbs my esophagus and throat. The simplest of things can trigger this and I have found so many, many foods that I have to stay away from. Eventually you will be able to tell what triggers it. I would also assume that your doctor will want you at some point have an endoscopy so they can see what's happening in there so they can watch it. I have to have one every year (I'm due now and just haven't done it). The reason is they don't want us to get what they call Barrett's syndrome or cancer of the esophagus.

The best thing you can do is to first deal with a rheumatologist that knows all about scleroderma. There are so many things that have to be watched now and to have your lead doctor on top of all of this is crucial.

You wouldn't be human if you weren't scared. I was and in a lot of ways still am. To know that we have a disease that can be fatal is always a worry. You just have to deal with things a day at a time and think positive.

I have terrible fatigue and terrible muscle pain. I also have a lung nodule and lung involvement that is having to be monitored every 3 months now. From what I've seen and heard this disease is ever-changing and is different for each of us. The one thing we have in common though is that we understand what all of us are going through and can be there for each other in a way that our family can't as they just don't understand what we are going through.

Good luck to you.

Warm hugs,

Peggy

#4 razz

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Posted 24 March 2009 - 06:23 AM

puzzlingpatty,

My heart goes out to you. I am sorry to hear you have been diagnosed with several autoimmune symptoms.

Jeannie has given you some very helpful links in finding a specialist and dealing with the emotional adjustment and heartburn. Many of us have experienced the beginning stages of our illness with uncertainty, pain and fear. Emotional support is so important and will get you through the difficult days. Pain management is crucial and will help keep you mentally focused so you can set in place a treatment plan, find a good specialist and organize your life to a more suitable level of comfort. I hope you find a good rheumatologist experienced in autoimmune diseases as soon as possible.

You will find lots of helpful medical information, life stories and a very supportive group here. Whenever you need to vent or have questions, we're here for you.

Take care,
Razz
Live well, Laugh often, Love much

#5 debonair susie

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Posted 24 March 2009 - 09:52 AM

Hi Patty,

I'm sure you are mortified, but coming here was a very wise thing to do, in my humble opinion.

There are so many supportive folks here, as you already know, by the looks of the previous posters!

The more you post, the better we will get to know you, as you will...us.

In the meantime, please know that we hope you get the much needed relief soon.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#6 Sweet

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Posted 25 March 2009 - 05:00 AM

Hi Patty,

You've been given wonderful advice and links to get your started. I hope you find them helpful. I am cheering for you!! We are always here for you, you've come to the right place for support, information and friendship.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 ozzy69

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Posted 25 March 2009 - 05:49 AM

Hi Patty,

Welcome! I am 39 years old with three boys ages 20, 18, 16. Last year I was diagnosed with systemic sclero. I also have fibromyalgia, interstitial cystitis (IC), Raynaud's, and acid reflux. I wanted to welcome you and let you know your not alone!! I deal with the sclero, and fibro by taking it one day at a time. I have good days and I have bad days. I have noticed when I am sick for more than a couple days it is depressing because I feel like I will never feel well again. Then I have a good couple days and it lifts my spirits again. I hope your doctor appointment goes well.

Lots of hugs,
Nina Lynn

#8 Penny

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Posted 25 March 2009 - 08:32 AM

Hello Patty and welcome to the forums!

Here you will find a wonderful group of people who have wonderful shoulders to cry on, an endless supply of tissues and are known to hug without warning. You will also find that we are all chronic carriers of laughter and like to be contagious when it comes to smiles

You have been given some wonderful links and I hope that you soon have the care you need.

I have celebrated the 11th anniversary of my 29th birthday, that makes me 40 in non-Southern Belle terms, though there is a law that no woman in the South may be over 29. (My husband's grandmother recently celebrated the 53rd anniversary of her 29th birthday) So we are very close to the same age.

Warm hugs... remember, you are not alone and you have a family here that will always be willing and more than happy to help in any way we can.

Penny