Jump to content
Sclero Forums

I'm New Here! ~ Other CREST symptoms?

Recommended Posts

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!! :)


Link to post
Share on other sites

Hi Haley,


Welcome to Sclero Forums! 


I'm sorry you are sick and that you have concerns about possible scleroderma, too.  I know how frustrating it is to wait for test results and further appointments, but at this point we all really need to wait to hear what your rheumatologist has to say. 


In general, autoimmune diseases can be very difficult to diagnose.  It often literally takes many years to sort out whether a person has scleroderma or lupus or whatever, so please do brace yourself for the possibility that you may not receive an immediate, definitive answer. This is probably a good time to read our section on Difficult Diagnosis.


And of course, we're all ears to hear what's next from your rheumatologist!



Link to post
Share on other sites

Hi Haley,


Welcome to these forums!


I'm sorry to hear that you've been experiencing so many worrying health symptoms. As Shelley has said, it is very difficult to diagnose such a complex disease as Scleroderma or any of the autoimmune diseases and often the blood tests can be inconclusive as well. It would probably be a good idea to list your symptoms for your next appointment with your rheumatologist so that you can discuss these with her and along with the blood test results, it might be easier for her to get the complete picture.


Do let us know how you get on!


Kind regards, 

Link to post
Share on other sites

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! :)

Link to post
Share on other sites

Hi Haley,


Oh dear, is that what they do?  I think I was left in that box and forgotten about for quite a few years one time!


Now you have me very worried.  Do you think they will wrap your box up, put it in a corner, and forget about you?  What if they accidentally ship your box, or someone sits on it in the waiting room?  Do you think maybe they'll do magic tricks with it, like a shell game, you under one box but your diagnosis stranded under another one?


Boxes!  I always suspected they were up to no good.  But boxes?!  Harrumph -- scary thought!!!

Link to post
Share on other sites

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?

Link to post
Share on other sites

Hi Haley,


I'm sorry you didn't get any clear answers yet.  You can always feel free to just hang around here; many of us have spent a lot of time in the land of pre-diagnosis.


Some of us also have interstitial cystitis, too; I do, along with a few others.  It's not like it is part of scleroderma, but it can hang around in the autoimmune arena sometimes and I have Multiple Autoimmune Syndrome (MAS).  I found an article, Co-Morbidities of Interstitial Cystitis that you might like.


It says, in part, "Co-morbid complaints in the IC/BPS groups included gastrointestinal symptoms suggestive of IBS and dyspepsia, sleep abnormalities with delayed onset of sleep, feeling poorly refreshed in the morning, waking up before needed, snoring, severe chronic fatigue and chronic generalized pain, migraines, and syncope."


So some or many of your health issues might be related to your interstitial cystitis and you should of course be screened for fibromyalgia just in case that co-exists, as well.  Also, do not just shrug it off if any of your doctors have suspected fibromyalgia.


Anyway, when you are in the just-observing box, you don't really go anyplace.  You sit in your box!  You STAY!  Grrrrr.....



Link to post
Share on other sites

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. :)

Link to post
Share on other sites

Hi Haley,


While you're spending quality time in your "box", you may want to look at the most bothersome symptoms you have and see what, if anything, can be done to get them fully diagnosed and treated.


For interstitial cystitis, if you haven't already, you may want to go to a board certified urologist who also has an interest in interstitial cystitis.  Such doctors are not necessarily easy to find. They can do an exam (or perhaps your OB/GYN could, you'd have to ask them), and then most likely a surgery to diagnose and begin treating it.  It is usually diagnosed with a procedure where they inspect the walls of the bladder, which is called a cytoscopy.


During this fairly easy outpatient surgery they can observe distinct signs of I.C., which can include small bladder size/capacity, Hunner's ulcers, and petechial hemorrhages. During the cystoscopy, they might also do a bladder distention, a treatment that may help some people for a significant period of time.


Overall, the findings will help rule out things like cancer and also will tell what type of interstitial cystitis you have.


The important thing to know about interstitial cystitis is that it is chronic but treatable.  It's just that many people go through a lot of different treatments before finding the ones that work for them.

If the bladder investigations happen to show that everything is otherwise okay, that would be cause for a party in itself around here, and then it would probably fall into the category of overactive bladder, which has many possible underlying causes including diabetes, fibromyalgia, and the use of diuretics. 


Also the very first thing to do, before any other doctor appointments, is to check all your medications with your pharmacist to make sure that none of them affect the bladder as either a common or rare side effect.



Link to post
Share on other sites

Hello Haley


Welcome and I also have IC an eryrthromelalgia (EM). I was diagnosed with a small, thickened bladder, narrowed urethra and IC in 2004, my first autoimmune disease.


In 2007 I was diagnosed with diffuse systemic scleroderma (blood work is negative) and mild Raynaud's and then in 2008 the EM which at that time was fierce! I am pleased to say it's in remission with no symptoms but when it was active you'd have thought I was frying eggs on my legs they were so red and hot. You could feel the heat coming off of them, without even having to touch them and my thighs were worse, it also affected my feet and hands.


As you no doubt know EM is caused by an over dilatation of the blood vessels causing the blood to rush through so treatment usually involves vasodilators, the theory being that if the blood is allowed to flow through unimpeded it will settle down and symptoms relent. Having said that amitriptyline, an antidepressant, was what I was given for it and it worked really well.


I hope you get answers and please stay as long as you like.


Take care.

Link to post
Share on other sites

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.



Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...