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Angelique

Newly diagnosed limited scleroderma

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Hello,

I'm new to your site and done numerous searches to become more educated about scleroderma. 

 

Being newly diagnosed after nearly a year of discomfort, pain, several diagnoses and switching Rheumatologists here I am. 

 

Yes, i do have a few questions. My history is I'm a type 2 diabetic under control. I've been on prednisone on and off for nearly a year. I developed hyperpigmentation over 90% of my body. 

 

My current Rheumatologist said the hyperpigmentation on my hands is typical of scleroderma, but the rest of my body she is clueless why? I also developed Raynauds 3 months into this process. Presently I'm on 2.5 prednisone daily and I just started Cellcept 1000 mg daily. 

 

My questions: the Rheumatologist told me that I don't have swelling of my fingers, it's skin tightness from scleroderma. Yet I can't get my rings off like I did before this happened. So have any of you had swelling of your extremities ie hands and toes? I've also had bad muscle pain in my thighs and calves which seems to have subsided in the last month. Is this typical of scleroderma?

 

My Rheumatologist is sending me for an ultrasound of my hands, anyone know why? Let me add that the doctor is new to me. Thus I didn't ask as many questions as I should have, partly because I was trying to absorb all the information she was telling me. She had resident in with her, so she was explaining to him her thoughts about my condition. She mentioned Crest etc. 

 

I would appreciate anything you can share. 

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Hello,

 

Welcome to the forums. I'm sorry you are experiencing so many symptoms that are hard to explain. The nature of any autoimmune disease can vary so much from person to person. First of all it's good you are seeing a Rheumatologist. Often times, it becomes test after test to rule out different causes, and more often than not, we don't get solid answers. Easier said than done, but try to go with the flow, and let your doctor work through the process. It can actually take years to come to the proper diagnosis, if any at all. I know that's not encouraging, but it's the. nature of the beast.

 

Are you on Plaquenil? I am, and it has caused the pigmentation problem you mention. I was told its from that. I'm very mottled. I was also told if I went off it, it would go away, but that's. never gonna happen. LOL

 

On the swelling versus tightness, the skin gets thicker so that would account for your rings not fitting. I have had mine sized a few times, and actually had a new band put on the opens and closes and is adjustable. On the ultrasound, he/she could be looking at bone structure, as the hands can change with CREST.  Here is a link to CREST syndrome that might answer a few of these questions for you. 

 

Muscle pain is often associated with scleroderma. Symptoms will come and go, leaving you feeling like you're going crazy, but I assure you, you are not. :balloons:

 

Keep us posted on your progress. :)


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hello Sweet,

 

Thank you for your insight. I appreciate you reminding me that I need to be patient regarding a diagnosis. 

 

My Rheumatologist gave me information on Cellcept and Plaquenil. After a series of bloodwork, she preferred I take Cellcept. I will see her next month to further evaluate. I'm just thankful I'm tolerating this medication. All too often I have gastric upsets with so many medications. 

 

As for the hyperpigmentation, this made great strides during the period when I wasn't on any medication for this illness. Now I shouldn't complain since it's fairly even in color. Most people think I'm suddenly tanned. Although I would prefer the glow of a sunkist tan. I should just be content it's a fairly even color in most places. 

 

Thank you for the advice regarding the ring sizing. I've had a new ring sitting at the jeweler for 6 months waiting for sizing. I will see if they can do what you suggested. 

 

Appreciate all your input Sweet. 

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I too have Crest Syndrome, my feet have been swollen before but mildly.

 

This is July in Indiana; we have had super hot weather the past week and a half 90's with heat index 100. Yesterday and today my feet/ankles are huge; I've never seen them this big before, I was concerned until I started reading everyone else's post, I figure if it isn't down after 4th of July and the weekend I'll call the doctor.  I've been sick since I was 27, but only recently diagnosed with CREST, but it makes perfect sense to me know with all the crazy symptoms I've had I'm now almost 46, so when they finally gave a name to my issues I did find some relief in knowing name finally after all the crazy issues I've had.  I choke on liquids, I actually aspirated a French fry over a year ago, which threw me into pneumonia off and on for 2 months, that's when doctors started wondering if I didn't have more than fibromyalgia and osteoarthritis, sent me to a new RA doctor and as soon as I told her the weird symptoms I've had for 20 years, she instantly said I think you have CREST, she tested my blood SED rate high which it has always been since age of 27, same with my positive ANA, but then she went on to test my ANA pattern which was centromere. She then called said it's what we talked about, so I did feel some relief for name put to everything I've dealt with for so many years now, but then I had to research what CREST was because I'd never heard of it, once I read the symptoms I thought, oh my everything makes perfect sense now. 

 

I am a bit scared because I've been sick since the age of 27, so now that 20 years have passed and over the last 10 my body has declined a lot, so I do get a bit nervous of what's in store for me these next few years, I own a business and work 7 days a week, but I can no longer stand on my feet for more than a half hour, my fingers have turned crooked from the osteoarthritis, so grasping things hurts and I have oedema (dropsies), I'm in severe pain daily, especially in the morning when I first wake up, I've not slept in a bed for about 4-5 years because I can't or I won't be able to get up in the morning from the pain. 

 

I guess I'm here for moral support because I don't know anyone who has CREST, my family and close friends have never heard of it either.  So I'm lost when it comes to this syndrome.  I want to know if certain foods help, certain herbs anything natural, I need to change my habits to benefit my health, I have 2 grandbabies on the way, my first ones ever, I want to be around for many years to watch them grow up, so if anyone has advice to better my health, what helps, what to stay away from, I'd be so thankful.  Sorry to ramble I'm just so excited to know I'm not alone, that there are others dealing with this. 

 

Thank you all so much for sharing your stories.

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Hi Charwim,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with CREST and are suffering with so many unpleasant symptoms. I can understand your sentiments when you were able to obtain a diagnosis; I did feel similar - whilst not ecstatic at the prospect of having scleroderma, nevertheless like you, I was quite relieved to at least have an explanation of my symptoms. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.

 

Regarding your enquiry about natural remedies, there are many healthy, natural things you can do for systemic scleroderma. I've included a link to our page on Scleroderma and Alternative Therapies, which I hope you'll find helpful and interesting.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello to all.  I am a Registered Nurse from South Carolina.  I am 47 years old and was just recently diagnosed with CREST.  It took over a year to get the final diagnosis.  I was told for 3 years I had lupus, I had my doubts and kept looking for answers.  I am now in stage III kidney failure and no one is really sure why.  I go to a large acclaimed hospital for care that has a scleroderma center of excellence. 

 

I feel very good about my care.  What I don't feel good about is how I feel right now.  I have significant joint pain daily with horribly swollen fingers and ankles.  The worst part for me other than the pain and fatigue is the swallowing issues.  I just had a swallowing test a few weeks ago and was told I have classic scleroderma esophagus.  I choke on heavy foods like, chicken, beef, vegetables and  anything bulky.  I am overweight and this is so frustrating. The only things I can eat without vomiting or pain is chips, candy, popcorn and ice-cream all of which I do not need. 

 

This is not a disease that I ever thought I would be battling.  I have a 24 year old son with autism and muscular dystrophy, so that is hard enough, but to care for him feeling like this - No fun. :sad:

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Hi Stacey,

 

Welcome to these Forums!

 

I'm very sorry to hear that you've been diagnosed with CREST and that it is affecting you so badly.

 

However, I'm glad to hear that you are receiving the best treatment and have a good medical team, whom I'm hoping will be able to help you with suitable medication and it's possible your disease may stabilise in the future.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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