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Do I have scleroderma?

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#1 Jo69



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Posted 03 December 2011 - 05:13 PM

I am 43 and started to develop Raynauds disease last winter. I have had joint pain in my fingers for a couple of years which is mild and comes and goes, and very dry skin on my face and neck which I have never had before. I also have dry eyes which are always slightly bloodshot, and I feel very tired a lot of the time. I have had general blood tests which are all normal - no inflammatory markers are raised. I am convinced that I'm developing scleroderma, but my general practitioner (who I'm not sure knows much about scleroderma) thinks there's nothing wrong with me. I don't want to insist on a referral to a rheumatologist as they probably wouldn't be able to diagnose anything with these mild symptoms. I was just wondering if anyone else had symptoms such as these at the beginning of the disease? I am interested to know what symptoms people had when they were diagnosed, or when they were referred to a rheumatologist. I am worried about developing internal complications before anyone believes that there is anything wrong with me. Thank you.

#2 Sheryl


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Posted 03 December 2011 - 06:11 PM

Jo69, welcome to the ISN forums. Your symptoms could be the start of Scleroderma though it can take many years for a diagnosis. I had issues similar to yours when my disease started. I was diagnosed when having and Endoscopy and Colonoscopy from my Gastroenterologist, as I was having issues with an ulcer and gastritis and started developing bowel issues. Everyone's symptoms are so different that most doctors don't jump into giving people a diagnosis until many issues develop. Many of us never show inflammatory markers with this disease unless we happen to be in a severe flare of some sort. Read some of the medical pages looking up some of the symptoms you have and learn so that you have proper ideas or thoughts to talk with your doctor about. I went on my own to a Rheumatologist and paid out of pocket for my diagnosis. Once I had my diagnosis I went back to my family doctor with the reports. Then my insurance paid for all appointments after that.

Strength and Warmth,

Sheryl Doom
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#3 Joelf


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Posted 04 December 2011 - 02:02 AM

Hi Jo69,

A warm welcome to these forums!

As Sheryl has so rightly said, your symptoms could be due to a number of different problems and not necessarily due to Scleroderma, which unfortunately can be notoriously difficult to diagnose, especially for the average general practitioner. (My general practitioner has only ever seen one other case, apart from me, in her whole career. ;) ) I had Raynaud's, Carpal Tunnel Syndrome, joint pain and a general feeling of being off colour and poorly for about 18 months before I developed symptoms of lung involvement; strange as it may seem, in my case it was fortunate that I did, as this is what prompted me to go to my doctor who thankfully realised that something serious was amiss, did a chest xray and referred me straightaway to a lung consultant. I'm eternally grateful to her for being so on the ball!!

I've included links to Raynaud's and Sjogren's which I hope you'll find interesting and helpful. Although the blood tests done by your doctor can be a starting point to help with a diagnosis, they are by no means conclusive. My original blood tests done by my general practitioner were very basic and came back negative; it was only when I went to a top lung hospital and they tested me for more specific problems that I was found to test positive with autoantibodies that helped them make a diagnosis. Just to further confuse matters, it's also possible to have Scleroderma and yet have negative blood tests or vice versa as some of our members can testify.

You can see from this that Scleroderma is a complex disease and so we do recommend that you consult a Scleroderma specialist, rather than a general rheumatologist. Perhaps if your symptoms persist you could go back to your general practitioner and request a referral to a Scleroderma expert; I'm afraid you might find that you do have to be quite proactive about your treatment.

I'm very pleased that you've joined our community and please do keep posting and let us know how you're getting on.


Kind regards,

Jo Frowde
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#4 inkedup


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Posted 04 December 2011 - 12:04 PM

I started with severe Raynaud's when I was 19, then had a gangrenous ulcer when I was 25. Even though I had autoantibodies in my blood tests, no diagnosis was made until my late 20's. I am now 43. Raynaud's as I understand can be linked with lots of different conditions, but most people have it without connective tissue disease. I think it's likely to make your fingers ache as the blood supply to your fingers is insufficient. I would insist on a referral to a rheumatologist anyway to be on the safe side. Lisa

#5 Amanda Thorpe

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Posted 04 December 2011 - 12:50 PM

Hello Jo

Welcome to the forums! If Raynaud's appears on its own it's called Primary Raynaud's, if it appears with another medical condition it is called Secondary Raynaud's or Raynaud's Phenomenon. We have a lot of information about Raynaud's as you would expect and indeed as already said it can also occur with other diseases as per Patient.co.uk.

Whether you'll go on to develop scleroderma or any other medical condition is impossible to say. As it happens most of the population experience dry skin, dry eyes and tiredness so these aren't necessarily specific to scleroderma. Have a read of our What is the world is Scleroderma leaflet that includes a scleroderma symptom checklist and you'll see that although dry eyes is a sympton it is described as excessive and tiredness and dry skin are not actually listed as symptoms. Fatigue is a scleroderma symptom and can range from mild to debilitating but it not the same as being tired.

If you develop any symptoms in the checklist or any that concern you then you'll want to return to your doctor.

Take care and keep posting.
Amanda Thorpe
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#6 rubydoo


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Posted 04 December 2011 - 12:56 PM

Hi Jo69
I agree with the advice already given that you must insist on a referral to a scleroderma expert. My diagnosis literally took a matter of 6 weeks from my first consultation with a specialist - my blood tests proved positive for Scl70. I had various symptoms very similar to yours for probably around 4 years before I did anything about it and the damage to my lungs had already been done by then, so my advice to anyone with any worries about there health is to insist on getting a specialist opinion as there is nothing to lose but such a lot to gain. I really hope that you don't have scleroderma but it is better to know for sure
regards Helen

#7 Shelley Ensz

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Posted 05 December 2011 - 08:41 AM

Hi Jo69,

Welcome to Sclero Forums! I'm sorry you have concerns about scleroderma, but glad you found us.

Please keep in mind that I'm not a doctor, a psychiatrist, actually, I'm not an anything-at-all -- I'm not even qualified in First Aid. Worse yet, To make matters even worse, I may be wrong (I often am!) and usually I misunderstand nearly everything so my stray comments really aren't worth a hoot.

I found myself distracted by one comment you made in your brief introduction, "I am convinced that I'm developing scleroderma".

Since arthritis and autoimmune diseases can be very complex and many of them share similar symptoms, in the early stages, it is simply impossible to really tell them apart -- by either the doctor or the patient.

If I were you, or your medical care provider, I'd be concerned about why you are convinced that you have scleroderma, even in the absence of the most telling, identifiable symptoms (skin tightening, pulmonary fibrosis, etc.) and with no confirming lab work or diagnosis or doctor telling you that they strongly suspect (or are convinced, either on or off the record) scleroderma -- that you have mentioned, so far.

You could be operating on an apt hunch, and be proven right down the road, or you could have another illness. However I have some concern that your provider might be likely to be concerned that you may be developing hypochondria, or in this technological day and age, cyberchondria -- not because of wondering if you have scleroderma, but because of being convinced you have scleroderma, when apparently no doctor has yet shared a concern about it with you (at least, in your brief intro. Granted, there could be a lot more considerations that you have not yet shared with us.).

It is sort of like having a breast lump. Nearly everyone gets some sort of breast lump, sooner or later. So we have the lumps examined and then have mammograms and if necessary even further tests or biopsies. Many people don't need anything more than a mammogram to rule out the worst possibilities. Some of us need further testing, and a good share of us may need to have a biopsy to confirm that it is harmless (or not).

So those of us who have a breast lump, certainly we're entitled to indulge in a bit of worry if we want -- but if our mammogram or other tests at any stage shows that it is a harmless lump, not cancerous, at that point we are supposed to stop worrying.

However, some people can't turn off the Worry Button so it remains stuck in the On position, despite all evidence to the contrary, and reassurance from doctors and breast cancer society's alike. In that case, it's no longer the (now decidedly harmless) breast lump that's the problem; it's the (errant and unsubstantiated) conviction, or the Worry Button that Won't Turn Off that is the problem.

Of course, all it takes to reinforce this is a single story from someone who actually did have a breast lump declared harmless but it turned out to be malignant. Then those of us who are plagued with a broken Worry Button have all the ammunition we need for it to keep firing, day and night, with the message that we are going to die -- because of our totally harmless lump. We have lost all faith in all the doctors and tests and conclusions, and yet still in the absence of any evidence that our lump is getting bigger or sprouting elsewhere, we retain a now-misplaced faith in our worry alone.

The thing with worry is, it always looks for justification. There's a huge difference between just casually saying you are convinced you have scleroderma and actually having that worry-driven sort of cyberchondria that means you really truly are CONVINCED you have scleroderma.

Your doctors would be, or at least should be, sensitive to the difference in your attitude. Try to assess your level of conviction (apart from this probably casual and not thought out statement).

Do you really mean, you have a good idea and hope to be proven right someday, but then again you may be wrong and happily surprised about that?

Or do you really mean you are totally convinced, your Worry Button is stuck in On, and you may need help to get it to Off?

Or, like many, are you feeling much better now that you got that secret concern off your chest and out in the daylight, and your Worry Button seems Dimmed and you'll be okay, given support from your Sclero friends, until you know more, one way or another?

Your own assessment and reaction could make all the difference, going forward with your medical team. They could easily think they are only battling Worry and focus only on reassuring you, rather than investigating any symptoms if/when new ones emerge or old ones worsen. That would/could worsen your plight, depending on what is actually going on.

Getting your own focus cleared away, opening up to other diagnostic possibilities -- including the idea that this may be a passing illness that you recover from spontaneously (which is very frequent with connective tissue disease) -- and making sure your Worry Button doesn't either get or remain stuck at the wrong setting, could be important to making a good adjustment to anything that develops (good or bad) regarding your health or diagnosis.

I'm sending lots of warm hugs your way, whether you need them or not, as well as the link to our Difficult Diagnosis section which is filled with helpful tips..

Warm Hugs,

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

#8 judyt


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Posted 05 December 2011 - 01:10 PM

Hi Jo69,
While we are in the mode of self-diagnosis and wondering and what did you guys experience I first of all would like to welcome you here and secondly re-iterate Shelley's comments about turning off your Worry Button.

If it is of any consequence at all, I would have thought your symptoms sounded more like Sjogrens than Scleroderma, but you see, I am only an ordinary person who happens to have Scleroderma myself with very good friend who has severe Sjogrens and all that counts for nothing really in the diagnosis stakes.

On the other hand I first developed Scleroderma in 1966 and nobody could tell me what was going on for nearly 40 years and that situation was not nice either. However, I am still here and functioning reasonably well in spite of some internal damage from the disease but my heart and lungs are unaffected so far and I think that I am pretty lucky to still be jogging along.

Then again it was frustrating knowing something was wrong and being told it was all in my head for so many years, so I do wholeheartedly sympathise with you in your current position. Perhaps the best you can do at the moment is deal with each symptom as it comes along - gloves whenever you go out and keep your trunk warm at all times. Layers of thermal undies are a good idea. Eye drops and good quality skin cream will help.

Keep telling your primary care person whenever new symptoms appear and if something dire is lurking it will show itself in the end.

In my limited experience of this disease, slow onset seems to be less devastating than a sudden strike, so turn off the Worry Button - it will do more harm than good.

Best wishes for a long and fulfilling future.

Warm hugs from the upside down side of the world