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About hetbum1990

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  1. Shelley- as of right now it's only been an informal diagnosis of IC. My OB/GYN said the diagnosis process was difficult and didn't always promise results, so at the time she didn't feel I needed to have that done. And honestly, I don't usually have urinary frequency- normally I'm fine and can go hours without... going. It's just I tend to get "flare ups" at certain times, like before holiday I had a "UTI" every 2 weeks it seemed, but I haven't had one since... Amanda- How did your doctor diagnose you when your tests were negative? I guess mine said that even though my tests were negative I could still have it, so maybe it all depends on what they think, and certain symptoms. Thanks for the info on EM. I've always had worse Raynaud's, being diagnosed with that in 2003, but lately my EM is progressively getting worse, and it's really painful! Worse than Raynaud's because at least I have ways to warm my hands and feet up when that happens. Last winter I was on Nifedipine for the Raynaud's but again, it did nothing for the EM and made it much worse (& gave me terrible headaches everyday all day). So I'm going to attempt the low dose Aspirin once a day as my Rheumatologist suggested, as she seems to think it will help both... Don't know if it will. We will see! But I will also keep the antidepressant in mind. Thanks!
  2. Thank you, I'll definitely read that article! Sounds like it could explain a few things. My OB/GYN just recently thought of interstitial cystitis (although I had self-diagnosed myself with it before she did) after I kept having sooo many "UTIs" on top of one other, and other symptoms. No doctor, yet, has suspected fibromyalgia. One of my friends mentioned it after I drank a margarita one night and almost passed out in pain from pain in my back/shoulders. After that, I of course did my own research on fibro, and was pretty convinced I had it (along with the IC, chronic fatigue). So many of the symptoms fit. Though it's hard because a lot of my symptoms fit many things. It's hard to not feel like a hypochondriac! When I saw the rheumatologist, I asked her if any of the ANA tests diagnosed things like fibromyalgia, and she said no, but we didn't really talk about it further. Maybe I will bring it up at my follow up appointment. Thanks for letting me stick around the forums, even though I haven't been diagnosed with scleroderma. It makes me feel a little better. :)
  3. Thanks Pamela! Well here's the deal- all my NINE viles of blood came back negative, so it's negative for CREST, lupus, etc.. But my Dr. said this doesn't necessarily mean I don't have CREST or some other "undifferentiated" connective tissue disease. So she wants to follow me and watch my symptoms and I'm supposed to contact her if they get worse. Guess I'm falling into one of those "undeclared" boxes after all! Which is pretty much expected, that's how it's always been. Sigh... On the plus side, she is going to try to treat my Raynaud's and Erythromelalgia, starting with a low dose aspirin once a day. I hope it helps. As for the rest of my symptoms, I'm starting to think maybe I do just have an unfortunate combination of unrelated things. Or maybe I am crazy after all. :) So where to go from here?
  4. Thanks Shelley and Jo. Yeah, I've been having a lot of these symptoms for a year or two with some being worse lately, have been tested for thyroid problems, lupus, etc. And I did recently read that some tests for autoimmune diseases can be false negatives or false positives. So frustrating! I did bring my complete long list of symptoms to my appointment and my Rheumatologist looked over it... She said sometimes they have "undeclared" patients who seem like they need to be in Rheumatology, but they don't have a clear diagnosis to put them in a specific "box" so they kind of just watch them and their symptoms over time. So we'll see what the tests come back with, and I'll keep you posted and go from there. Thanks! :)
  5. Hi everyone! I'm glad I found this group! My name is Haley, and I'm 22. Here's my story, I'll try to keep it as brief as possible (I tend to ramble!). I've had Raynaud's for years. Recently saw a dermatologist for an unrelated thing, he mentioned I might have CREST and should be seen by a rheumatologist- Raynaud's, trouble swallowing, and the tiny red dots on my hands are my CREST symptoms. But also extreme fatigue, digestive problems, and muscle and joint pain. I saw the rheumatologist today, and she agreed. We're waiting for all the blood results to come back, then another appointment. But I have a whole bunch of other symptoms, symptoms that generally aren't listed on regular symptom lists I've found online, but seems like some people may have these issues. So right now I'm basically just grasping to see if other people experience these issues with CREST/Limited Scleroderma, to see if they are at all related. Since I feel like a total hypochondriac, and up until recently, all my doctors have made me feel this way. I apologize if any of this is covered in another forum, I haven't browsed around yet. Here are my main complaints: General ill feeling most of the time EXTREME fatigue Night sweats Intolerance to cold (not just the Raynaud's on hands and feet) Erythromelalgia Weak feeling, especially in arms Back/shoulder/neck pain Digestive issues (nutritionist thought maybe I had gluten and/or lactose intolerance, low stomach acid...) NO libido what-so-ever, usually Intolerance to alcohol (weird, I know) Etc. (more minor things) I also have interstitial cystitis. Also, I know the libido thing may not be openly discussed in these forums (understandably!), but if anyone has advice/thoughts/similar experience on that matter with CREST, please feel free to send me a PM. This is probably the most complicated issue I have because it interferes with my relationship greatly. Anyway, I apologize for the lengthy first entry! Once I start typing, I can't stop. :) I'd really really appreciate any information and knowledge anyone has to offer, and am interested in hearing if anyone else has similar issues with CREST. Thank you!! :) Haley
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