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Finally believed -Not well

Mar 12, 2016 6:36 PM

Hey all sorry I haven't be around much or the greatest support. I do follow quietly. I'm not doing great with dealing. After two years of trying to get docs to believe me that something's very wrong. That includes 2 Rheumies, an ENT, my GP and pain clinic. My fingers turned blue in front of my doc and it woke him up. He finally sent me to an Internist. In that one visit the doc found all sorts of indicators of autoimmune disease. He he felt swelling all over where I was told there was none. He saw many signs in my inner bottom lip, my inner cheeks and my abnormal tongue which the ENT told me was normal. I expected them to suspect lupus and sjogrens which they do. What I didn't expect was them to strongly believe I have Scleroderma as well. That has terrified me. All other docs missed a bunch of tests I should have had done long ago and now have. So I'm grateful to be believed, pissed I wasn't for 2 years and now very scared of what my future will look like. Scleroderma is a horrible autoimmune illness. All of them are but this one scares me most.
For those of you still trying to get answers, don't give up. You know your body better then any doc ever will. They work for you.
Also if your still trying to find answers, there could be visual symptoms in your mouth.
I will be seeing an opthalmologist as well who can diagnose sjogrens with a simple litmus test.
Ask to see an Internist and an Opthalmologist if you're getting nowhere with Rheumies or GP's. Oh and I asked to see an internist many months ago but my GP wouldn't send me. When he saw my fingers turn blue with Raynaud's he diagnosed me on the spot with it and offered to send me to one.
Take pictures of any swelling or visual symptoms you have. It may help you.
I go back to the internist in a month when my tests are all in. I guess I'll know then what's up and how they'll treat it.
I had blood tests, chest x-ray, urine test. Will have an ECG and a heart echo. Scleroderma can affect the lungs and heart and I've had some trouble breathing from Time to time.
One more thing sorry this is long. They think lupus may be what caused my I.C. and the loss of my bladder because of it. It could also be what's caused my epilepsy.
I'm sharing all this in case it can help others in some ways.
If anyone battles Scleroderma and or Lupus I'd love to hear from you. Thanks all.

Mar 12, 2016 7:34 PM

Gibber, I'm so glad you finally know what you are dealing with. And I pray the doctors you get under are very experienced with these dx. I understand the being poised for being blown off for 2 years. That's exactly what happened to me between 2007-2010, when a GYN found a large mass with an internal ultrasound. I've had nothing but problems since. I still get angry when I think about it, but refuse to sue the doctor. What goes around comes around. Good luck, Good blessings for good doctors and treatments, and hugs!! 🙂💕🙏🌼

Mar 12, 2016 8:42 PM

So glad you have some answers, even if the answers are terrifying. Getting answers leads to knowing how to treat the problem, or at least the symptoms.

I didn't know they did anything for Raynauds. I was diagnosed with that years ago. They simply told me it was nothing to worry about, and to wear gloves. Of course the doctors where I live are nothing to brag about.

Mar 12, 2016 9:12 PM

I'm so glad they are doing something for you now. Sorry the news isn't good :( It's so hard not knowing but also so hard once you know. I hope the tests shown something treatable!

Mar 12, 2016 9:26 PM

Flappy wow they've nothing about the mass. That's not good.

Scary Ann do you have other symptoms with the Raynaud's? It actually is a concerning thing. It's autoimmune and it's a symptom of lupus and Scleroderma. It cuts off your blood when it happens

Cdngirl that's exactly it. I'm CDN too BTW.

Thanks to all of you!

Mar 12, 2016 9:43 PM

:) Which province? I live in Alberta.

Mar 13, 2016 1:52 PM

So do I!

Mar 13, 2016 2:08 PM

I have CREST syndrome disease. I have the R- raynoulds & the S- scerloderma ... I've had it since birth & wasn't diagnosed until last year! Docs told me that for the next 2 years- if my lab numbers stay the same - I will most likely remain where I am. That's super sensitive skin, only using water based products for everything that touches my skin, staying out of the sun. If you are on FB - there are scleroderma pages to check out. It's very scary, I am here to help & hopefully you can help me too!

Mar 13, 2016 2:10 PM

Also I am looking for foods that are better to eat for inflammation...

Mar 13, 2016 7:52 PM

I'm sorry you're battling. I'd love to keep in touch auto. Are you on FB? How did you get diagnosed? How are they treating it? What's crests syndrome?

Mar 13, 2016 7:53 PM

Oh and we're close in age. I'm 45

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