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CREST syndrome


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#1 christopher131

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Posted 17 August 2011 - 09:56 AM

I wanted to connect with you fellow soldiers of this disease. I wanted to share a little of my history so that you pursue the best healthcare available. I joined this forum because I feel so alone with no-one around me that understands this disease.

I have lost my friends because they think that I am a hypochondriac. I was diagnosed three years ago with scleroderma. I was a golfer that golfed three to four times a week. The fatigue plus gaining 35lbs.in one summer was the red flag that sent me to my general practitioner. I was having symptoms of Raynaud's for years and did not know it. My ANA was extremely high. I was then sent to a rheumatologist. After four visits, he told me he could not help me. I stopped going. One of my friends at the time suggested her Internal Medicine Doctor. I made an appointment when I ran a high fever, cold sweats, dizzy and abdominal pain. She ran a CT scan and diagnosed me with diverticulitis. She said and, "by the way once we get you well from this problem , we will send you to an Endocrinologists, you have a tumor the size of a golf ball on your adrenal gland."

I went and had lab work for hormone levels and I was told they were normal. No way!! The tumor was not cancer. My heart palpitations subsided but the fatigue and muscle weakness was so bad that I was constantly in a chair. This led me to have a stroke from a blood clot. The stroke was in my brainstem. It is amazing that I am alive. No paralysis or troubling side effects. I only notice that I am not as intelligent as I once was. That scares me.

My friends do not call anymore and I feel very alone. They dropped me like a hot potato, once I had the stroke. Everyone thinks that this is my fault because I am overweight. My body looks normal so they think that I should be normal. They think that if I push harder that I will get better. People do not know what this disease is. They are so ignorant about it, I too, am tired of retelling my story.

I wish that the public was more informed. I am not looking for sympathy, just understanding. When I say I don't feel like walking, it is because of the pain and fatigue, not that I am lazy. I was watching T.V. and saw a hormone replacement therapy advertisement. I decided to try it. My testosterone levels were at a level 6. Lab values on the national level for a woman my age were between 8-48, these values are considered low for a woman my age. I am now on replacement testosterone therapy. I am not hurting in my joints as bad, and I have a little more energy.

I think this disease affects so many of the systems that you constantly have to stay on top of it. I have read your stories and I sympathize with you all. The information I receive from you is undeniably the greatest resource of comfort. I would like to learn to have a quality life even though I have physical limitations. Bless all of you and I hope to hear from you soon.

#2 Jeannie McClelland

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Posted 17 August 2011 - 11:27 AM

Hi Chris,

Welcome to the Forums! I'm so glad you found us, but sorry you needed to. I'm especially sorry the rheumatologist you saw was so negative and unhelpful. Would you consider going to another rheumatologist, one who is a scleroderma expert? I've copied the listing for the center in North Carolina at the bottom of this post. An awful lot of us have eventually needed to fnd a scleroderma expert. This disease, as you so rightly say, is very complex and among rheumatological diseases, pretty rare. With the best will in the world, many good rheumatologists will not have either the depth of experience nor be able to devote the time needed to be 'up' on all the latest advances in understanding and treating scleroderma.

Many of us won't be familiar with testosterone levels in women nor the significance and impact of low/high levels so I've put a link to a Medline Plus (National Institutes of Health) info page here.

Whether or not the Hormone Replacement Therapy is responsible for the improvement in your energy levels and lessening of joint pain, it is great something did! I've found myself that just being able to start being more active again improved a lot of things, not least my attitudes towards the disease and how I was approaching it for the long haul.

We have a pretty good section on emotional adjustment that's worth reading. The problem you've had with disappearing 'friends' is far from uncommon, especially in the case of chronic illness, but also in other of the major life events like divorce (ah, where are all my married friends now? :glare: ), getting engaged, having children, and so on. Believe it or not, my event that caused some estrangement was retiring several years before the rest of my pals did. I'd retired early because physically I wasn't able to meet the demands of a high-pressure job. I had to fight hard not to become isolated and to develop a new social circle. I found a sewing machine shop that gave free demos once a week and started going to those. Sometimes a group of us would go out to lunch afterwards. Gradually I ended up with some nice acquaintances and a group of 3 very good friends.

You've already taken the first step to making new friends - joined us! I hope we'll hear from you often. OH! You ought to join in the chats whenever you can. We post the times in the top of the page in the banner on the appropriate days: Sundays, Tuesdays, Wednesdays (today!), and Fridays. Just check the time then click on 'chat' in the menu bar at the top of the page. Good fun and nobody will think twice if you are wearing your PJ's and fuzzy slippers! :lol:

Best wishes and a warm hug,


North Carolina

Institution: Duke University Medical Center (DUMC)
34229 Hosp South
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Coordinating investigator: E. William, St. Clair, MD

Other Local Participants: Keith Sullivan, MD

Telephone: (919)684-4499
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Jeannie McClelland
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#3 Chopper

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Posted 17 August 2011 - 11:48 AM

Hello! Welcome aboard!

You're in good company here! You sure have been through some tough things!

What a relief you don't have cancer and you didn't get paralysis from your stroke! I too have limited scleroderma, or CREST. At this point fatigue hasn't plagued me, but I certainly feel for you. Since we ourselves are unsure of this strange disease, it's no wonder at times our friends feel insecure too and maybe don't know how to act and it becomes easier to avoid the situation.

Yes, it can get depressing to keep telling our story. I find that many of my friends don't ask details because maybe they're worried it would be upsetting or maybe they worry it's none of their business. I usually simply get, "How are you feeling?". And from there, I usually try to quickly tell them of a couple challenges, and then cheerfully sum it up with something positive, like, "Lately I've really been enjoying......would you like to join me sometime?" I hope your old friends come around, and if not, there's room for new ones!

I have to think it's good to keep telling my story (in chapters, not the whole book at once :lol:) because that way I think it helps me to accept it and be as positive as possible about it; and I think those are good vibes to give when talking to others.

Hope you hang around and share some of the insight you've gathered since your diagnosis.

Take care,

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#4 Joelf

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Posted 17 August 2011 - 02:46 PM

Hi Chris,

Welcome to these helpful and informative forums!

I'm sorry to hear that you've been suffering so badly with Scleroderma and other very worrying and unpleasant problems. It's very hard with such a complex disease as Scleroderma to explain to other people exactly how dreadful you can feel; it's also quite hard for others to understand the problems that you're facing. My friends were intrigued in the beginning by my explanations of this illness and then (after having been bored witless by my incessant explanations of every minute detail of my treatment) heartily sick to death of hearing about it. Rather than becoming a social leper, I now only mention it if someone specifically asks me! ;)

I've included a couple of links which I hope will help you and that you'll find interesting; one is to Fatigue and also to Pain Management to hopefully help you to cope with the miserable discomfort you're suffering in your joints and muscles. I have joint pain (although much improved to how it was through the medication I take) so can really empathise with you.

Jeannie has given you an excellent centre for Scleroderma; as she's advised it's very important to be treated by someone who has the knowledge and expertise to deal with this unusual disease which sadly many rheumatologists are not able to do. The very good thing is that you've found our forums and joined our community where you will make many like minded friends who can understand a lot of the suffering you're experiencing.

Do please keep posting and let us know how you're faring. :emoticons-i-care: Here's a welcoming :emoticons-group-hug: (I'm the red one!)

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#5 Lynnie

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Posted 17 August 2011 - 05:52 PM

Hi Chris :emoticons-group-hug:

I to was diagnosed like Jo around 4 years ago with limited scleroderma aka CREST. I can totally sympathize with the isolation you feel, friends who know us well either do not know what to say or react, its as if they stay stay away so they do not have to face or ask us things because they are scared themselves, or we have to adapt and they for us too. I was very fortunate that my friends stuck around and have been there for me, but, when you are sick with a disease like ours which is so complex it's hard for them to rationalise it, if we were diabetics it would be a lot easier! If yours have left you were they friends in the first place? If they have deserted you then they weren't worth having in the first place!.

You have come to a good place, the forums and the great gang of folks that are here were my saving grace and have given me the comfort and strength to face my challenges and when I have been sad, alone and scared and given me the push to say, "Hey I'm here, I've had that," and given me the benefit of their experience.

Please rest assured others will chime in too, but, you are most certainly not alone...now.

Keep posting we all will be here to support you on your journey.

Hugs and welcome to our sclero family, Christine,

Lynn

#6 miocean

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Posted 17 August 2011 - 09:01 PM

Hi Chris,

I have diffuse scleroderma and understand your feelings of frustration and loss. I think the LOSS one experiences extends through all aspects of life, friends, job, things you love, etc. On top of this, scleroderma does not always "show". I can't believe how many people have told me, "You look so good." Okay, I was on dialysis (fortunate to receive the gift of a kidney in 2010), have lung disease, heart failure, my GI system is damaged, sclerodactyly , fatigue , and depression, BUT I look good! :emoticon-dont-know:

I discovered most of my friends can handle only small bits of info on my health. Even relatives don't truly want to know, I've been accused of worrying too much or being negative if I go into details with them. Most people think I've been "cured" since the kidney transplant. They don't understand why I am not able to pick up my life where I left off in 2004. I've been fortunate in that most of my friends have stayed in touch, although their lives are so busy with work and children our contact/communication is very limited and often I am the one to initiate it. (This is nothing new, however, for some reason it has been this way all my life.) I have made new friends, some are keepers and some I had to give away. Like Chopper, I give honest information when I am asked but will end it with something like, "but I'm here and I'm smiling" to keep it light.

It sounds like you are dealing with a lot of loss. It's okay to grieve. Your life has changed and it is remarkable to me that you have been through all you have and are doing so well and still reaching out. This is a wonderful forum with people who have been there. We are your friends and will help you as we are able to. There is so much information on this website, take advantage of it as well as the forum.

I hope you stay involved because your story can help and inspire others.

:flowers:

miocean

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#7 Sweet

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Posted 18 August 2011 - 05:46 PM

Hi Chris,

Welcome to the Sclero Forums. I'm so glad you've joined us, but very sorry it's due to your illness. One of the hardest things for me at the beginning, and even sometimes now, is dealing with people that "don't get it". There's a great little tool you can use for this. It's called the Spoon Theory. Check it out and I hope it helps you.

Hang in there my friend.
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#8 Shelley Ensz

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Posted 19 August 2011 - 08:51 AM

Hi Chris,

Welcome to Sclero Forums! I hope you're feeling better and comforted with your new friends here.

:emoticons-group-hug:
Warm Hugs,

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

#9 debonair susie

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Posted 19 August 2011 - 10:34 AM

Hi Christopher,

I too, would like to welcome you to our Very Large Family Haven, where you will get to know many of us, beyond those of us you have already "met" :emoticons-group-hug:

Your story resembles mine in several ways, in that I suffered greatly with fatigue for quite sometime, at the onset.

The joint pain, the muscle aches, being made to feel as though I was a hypochondriac, was very deflating. Knowing that something was so terribly wrong, wishing SOMEONE in the medical field could get to the root of the problem, lasted for 4 long years. FINALLY , my very wise/sympathetic internist said to me, " I KNOW you are terribly ill, yet I also recognise that this is completly over MY head. Therefore, I'm referring you to Dr "Know" ", a gastrointerologist. I am forever grateful for her referral, yet that was a crucial turning point...life-changing, as you also realize.
Though I've weathered many changes/additions to my ever-growing resume' (of diseases), I've found a wonderful community right here! Even though we're all like snowflakes, in that we differ so greatly with our health challenges, we find the comfort, support and empathy we so desperately need, in order to become our own advocates. We learn to manage our health issues, and
also are able to help educate our awesome specialists!

I look forward to your future postings as we all get to know you better and you us! :)
Special Hugs,

Susie Kraft
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