I'm worried. What do you guys think, should I be?

9 posts in this topic

I'm a 25 year old female. About 3 years ago, I began to develop scar tissue on my abdomen. It showed up in the shape of a pair of lips (funny)! The next one showed up on my breast, when it covered 1/3 I finally went to the doctor. They prescribed many fungus creams, to no avail, and finally did a skin biopsy of my breast. I was told it was scleroderma.


I finally went to a specialist about a year ago. My opinion of the guy is not high. He didn't run ANY tests... and I have bad teeth, always have, he asked if I've ever done meth, when I responded that I haven't, he says, "Are you sure? You know, meth can do that to your teeth."......?!? Not impressed. He said I just have morphea and don't have to worry about ever getting tested again.


So, fast forward to the present, the past three weeks my eyes have become extremely sensitive to sunlight, I have to wear sunglasses until the sun goes down or else I'm squinting heavily. My joints have cracked EXCESSIVELY for probably 3 years but especially lately have become increasingly painful. I have frequent muscle spasms, especially under my rib cage (no, not pregnant. lol). I googled the symptoms tonight and found that they are very common in people with progressive systemic sclerosis (or diffuse form).


I'm a single mom with a mortgage...I don't have much money right now, going through a rough patch.


I'm worried that my condition is not just morphea....


What do you think, should I be worried?

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Hi Rebekah,


None of us here are medically trained, but we are all sufferers of some sort of Scleroderma which is very very hard to diagnose in a lot of cases. Nevertheless you will most likely get lots of answers and suggestions about what you can do to help yourself.


As well as sclero many of us have additional autoimmune disorders, it is not uncommon at all to have at least two and maybe even more. I have 3 definite and 1 maybe, myself. One of the things we might have is Sjogren's syndrome which is a disorder of the mucuous membranes. That means we don't have enough moisture in lots of parts of the body, in particular the mouth, hence terrible teeth and gums, and eyes. Dry eyes means not enough tears and in my case at least I am very sensitive to the sun. Sometimes I even have to wear sunglasses indoors.


I am sure you will get a response from Jo who will give you some links to further information, and of course we always suggest that it is important to be seen by a Scleroderma Expert and Jo can give you links to them if she knows where you live.


We understand that it is not always easy to get to an expert but for your own future it would be good if you can. I myself have never seen an expert and if I had I do believe I would possibly be in better shape than I am now. I live in New Zealand and there are no experts here but there are in Australia and if anybody had ever suggested to me that I should go there I am sure I would have.


Best wishes to you,

Keep posting



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Hi Rebekah,


Welcome to Sclero Forums. I'm very glad you found us and I'm sorry you have morphea. Are you aware that there are treatments for morphea now, if you want to pursue any? Especially UVA1 which is recommended as a first-line treatment for morphea. See Morphea Treatments.


I'm also very sorry you had such a bum experience with a scleroderma expert.


I thought I'd try to tackle each of your concerns, one by one, if that's okay – but keep in mind, I'm not a doctor, in fact, I have no medical training at all. But I do promise not to ask if you're taking street drugs; surely you'd figure out by yourself that if you were, they could raise a lot of health havoc.


First off, eyes being sensitive to light for 3 weeks. Sensitivity to light is not the same thing as severely dry eyes, nor is it a symptom of scleroderma per se. However, it can be caused by many things, including an eye infection or even migraines. Since this is a new symptom, you should see an opthalmologist (an eye doctor) for a complete eye exam.


Secondly, cracking joints, by itself, is not a sign of joint problems or arthritis. However, if you also have other problems such as joint pain, redness or swelling or tendon issues of some sort, then you should see your doctor about it. But if it is just plain cracking alone, that by itself is entirely normal, and is perhaps a bit more likely to occur with age or with lack of exercise.


Muscle spasms under the rib cage is something to see your primary care doctor about. You might be having heartburn, gas, or working out too hard, or whatever. If it is heartburn, welcome to the crowd as it seems almost everyone has it nowadays, and by itself it is not a symptom of systemic scleroderma. About 25% of people with morphea also have one or two symptoms outside of just their skin involvement...such as heartburn.


Something you did not mention, but that I will, is that the skin involvement from morphea is entirely different from the skin involvement in systemic. Morphea occurs in colored patches of hardened skin and the patches are not in the same spot on both sides of the body. With systemic scleroderma, there is no color change to the skin (which is a huge difference) and usually the skin involvement is matching (or at least similar) on both sides of the body. Morphea tends to be just anywhere, but systemic tends to start at the fingertips on both hands (or toes) and move upwards, and although there are exceptions to those generalities, the basics stay the same: always a color change with morphea (red or brown patches with a lighter center, not in matching spots on both sides of the body) and no color change with systemic and generally matching on both sides of the body. What this means is that your morphea skin involvement would never, ever "count towards" a diagnosis of systemic. Do I hear you say, WHEW, all the way from here?


The things is, it is extremely rare for people with morphea to also develop systemic scleroderma; it is not like it is an automatic or normal progression, and both illnesses only occur in anywhere from 0% to 4% of people with morphea, depending on the study. Some (or even many) scleroderma experts say they have never encountered it in their whole career. And then we have a few glaring exceptions to the rule, such as Amanda here, who has both morphea and systemic.


A great way to find out if you are at risk of ever developing systemic is to see if you have anticentromere antibodies, or not. If you do, you would be at risk, but even being at risk does not guarantee that you would develop it, of course.


We seem to encounter a lot of people who have never had it explained to them that morphea does not progress to systemic so then they spend ages worried about their morphea turning into systemic. That is really an awful lot of worry down the drain, and energy that could be used on more productive going to the doctor and getting treatment for their morphea lesions.


By all means, don't take my word for all this, as I am not a doctor. Please see your own primary care doctor and run these things by them and correct me here if I am wrong about anything. I care a lot more about accuracy than I do about my precious little ego, because I believe that any of us can deal with the truth if someone will just take the time to be honest and straightforward with us, for a change.


I'm very sorry for any and all the extra anxiety that your symptoms may have caused you. Particularly, concern over developing systemic. Realistically, you do have a slightly increased risk for systemic than people in the general population, if you also have anticentromere antibodies and it is also normal for people with morphea to have these concerns -- but also a bit unnecessary if anyone had ever bothered to really educate and screen them on their risk in the first place. That is what your scleroderma expert should have been doing, rather than trying to aim for a confession of meth use! I hope that knowing the facts of the matter will help set your mind at ease.


Oh, bad teeth, I forgot about. My teeth were a horrible mess from a combination of scleroderma and Sjogren's. It took thousands of dollars of dental work to make them look normal again. The next time you go to the dentist, ask them to evaluate you for dry mouth. They can tell, just by looking inside your mouth, whether or not you are putting out enough saliva. Also ask them what it will take to restore your mouth to normal-looking (not movie-star looking). Nearly all dentists offer a financing plan. Finance it and get your mouth normal-looking again. Dry mouth might aid in assistance towards a Sjogren's diagnosis but if you have dry mouth, it will still be dry if you get your teeth fixed, and you really don't want to go around wrongly looking like a meth addict, do you?


Also remember, as we get older, we automatically encounter more stuff that goes wrong. Most people have quite a tidy collection of ailments by the time they reach middle age thanks to lifestyle and/or genetics. Just plain expect that it will take you a much greater effort to not see the worst in things, due to the scleroderma word that must always be hanging around at the fringe of your consciousness (no matter how assuring this explanation may have been.)


That is why we really do need more people in our support community who have suffered the experience of worrying about morphea turning into systemic and who have overcome the worry with the facts, not with blind assurances. They are really the only people who can reach out to others in the same position with true understanding.


Here are some extra hugs for all the extra trouble this has put you through!



Warm Hugs,


Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099


The most important thing in the world to know about scleroderma is

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Hi Rebekah,


Welcome to these forums!


I'm so sorry to hear that you've had such a bad reception from the specialist you consulted. I have included a link for you to our page on Scleroderma experts; perhaps it may be possible for you to get an appointment with another specialist who is able to offer you more support and advice.


Shelley and Judy have given you lots of help and advice in their replies to which I can't really add anything; however, I'm very pleased that you've found our forums and joined our community and hope that you will continue to post and let us know how you're getting on.




Kind regards,

Jo Frowde

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 Rebekah


Welcome to the forums and sorry for the lateness of my welcome.


As Shelley mentioned I have both systemic and morphea but have not really addressed the morphea being preoccupied with the systemic. Mind you, next time I see the hospital doctor about my ulcers (foot) I am going to ask about UVA1 photo-therapy because my morphea patches are large, numerous and growing!


If you only have morphea concentrate on getting it treated and don't worry about developing systemic unless you actually do!


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Rebekah,


Welcome! Chiming in a little late here, but wanted to give you a big hug! Shelley has given you excellent advice.


I know first hand how NOT nice or fun it is to deal with a provider that isn't warm and fuzzy, and thinks he knows everything, and you know nothing. So first order of business for you is to see someone else. I see Jo gave you the list of experts, I hope you can find someone that will HELP you.


Hang in there kiddo! :)

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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I just wanted to say Thank You to all of the responders. I appreciate all of the feedback.


I will say that by specialist, I meant rheumatologist. I wasn't even aware that there were scleroderma specialists. Good to know. :)


I guess I'll see a general practitioner first--and this time actually tell them everything that is bothering me. (I'm sure I'm not the only one guilty of holding back just so I don't feel like I'm complaining.)


I do feel a little better now, and BELIEVE me when I say that I know it could be MUCH worse. And I hope for the best for each and every one of you. :)


Thank you! And Happy Holidays!


Rebekah S.

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I have a feeling you may see several doctors regarding your health issues. Having traveled down that road myself, I suggest saving copies of all of your tests, reports, labs and whatever you think is relevant, in a filing system that suits you the best. Mine is a binder, organized by organs as I have multiple organ damage, and are in pockets as it is difficult for me to use even a three hole punch or open and close the binder because of my hands. All of my blood work is in a separate folder as I have it done frequently. Some people keep diaries of their symptoms, I did not do that but you may find it helpful.


This will prove invaluable in the future. Do not count on a doctor or medical facility to always have the information needed, even with electronic medical records.. It will give you a place to look back at issues you may forget about as time goes on.


Thank you for joining the forum and sharing what you are experiencing. There is a lot of support here.



ISN Artist

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