Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Aches, dry eyes, and female stuff

  • Please log in to reply
11 replies to this topic

#1 Lucy H

Lucy H

    Bronze Member

  • Members
  • PipPip
  • 18 posts
  • Location:new england

Posted 02 March 2009 - 04:25 AM

Hi. You all are so supportive and nice. I know that I am lucky to only have minor issues as compared to so many of you, so I feel a little guilty taking your time. I just think the hardest part of this whole experience is the uncertainty. Not knowing if I am progressing or if my symptoms are completely unrelated is such a frustration. I am so much better if I know what I am dealing with- good or bad. Maybe some of you can help me sort this out.

The rheumatologist said that I have an indication of CREST. I have Raynaud's, and an ANA result of 1:1280 with a centromere pattern. He said that it may be the start of limited scleroderma and maybe I'll be lucky and it won't ever progress. I have joint pain in my fingers (they always feel swollen and hard to bend, but they are not actually swollen). This is not getting better and keeping a firm grasp on cups and things is harder than it was a few months ago. Sometimes my legs ache. My eyes are dry. I can't believe I'm typing this to people I don't know, but my only other symptom that is so tough to deal with is that I am very frequently getting symptoms of kidney infections and itchiness. It goes away within a few days and I rarely actually need an antibiotic. Never had that before. Other than these new phenomena (over the past 3-4 months) I am okay. Has anyone had similar experiences?

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,283 posts
  • Location:Minnesota

Posted 02 March 2009 - 06:31 AM

Hi Lucy,

Welcome to Sclero Forums! I'm sorry you have CREST (Limited Systemic Scleroderma) and send my best wishes to you. I know how you feel in that I think the uncertainty is the hardest part for most of us to deal with. It's hard to prepare ourselves emotionally for what might -- or hopefully, might not! -- happen.
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 sclero.org.

#3 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 02 March 2009 - 06:57 AM

Hi Lucy,

I also want to welcome you to the Forum.

Shelley gave you the link to CREST, so I'm only going to say thanks on behalf of everyone for the compliment and tell you never to feel guilty about posting! The more people who post, the more each and everyone of us understands about the various manifestations of scleroderma. Besides, if you don't post, we won't have a new friend!

Best wishes and warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#4 ozzy69


    Silver Member

  • Members
  • PipPipPipPip
  • 169 posts
  • Location:Taylorsville, KY

Posted 02 March 2009 - 08:40 AM

Welcome Lucy!

I have issues down there also. I was diagnosed with Interstitial Cystitis about 3 years ago. It makes me feel like I have a bladder infection but I don't have one. Certain foods make it worse and I avoid them. I hope you figure out what is bothering you. I would ask your doctor about your issues. It could be something simply like changing your soap.

Hope you feel better,
Lots of hugs,
Nina Lynn



    Senior Bronze Member

  • Members
  • PipPipPip
  • 58 posts
  • Location:Eagle, Idaho

Posted 02 March 2009 - 08:59 AM

Hi Lucy!

Welcome to the group! I am fairly new, also, but this group has been so warm and welcoming.

I am so sorry to hear that you have symptoms. I think that any issues are real and worth asking, because it can be so frustrating carrying these types of diseases.

I have very similar symptoms, other than the kidney infections. I do have Raynaud's. My hands do not work well anymore, they also feel swollen, fat and hard to bend. I am continually dropping things and have problems with doing fine work with my fingers. I have very dry eyes and mouth, and a dry tight-feeling throat (inside). Leg and other muscle aches are very frequent, but they don't seem to by the same aches day after day. I also have a list of other symptoms, but these symptoms are the ones that match yours.

I hope this helps you a little. When I became a member of this forum, I really truly believed that I was the only one experiencing what seemed to be at times "weird" symptoms.

I have been diagnosed with Undifferentiated Connective Tissue Disease.

Lots of warm wishes,


#6 Kamlesh


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 316 posts
  • Location:Dublin, CA

Posted 02 March 2009 - 11:04 AM

Hi Lucy,

I too have issues with dry eyes. Many times, I have blurry vision in one of my eyes (most of the time right eye). First, I went to eye specialist and made sure nothing is wrong with eyes. Now I am using eye drops for dry eye symptom. There are several brands available over the counter and one recently went from prescription to over the counter and I use same drops.
It helps.
Kind regards,


#7 Penny


    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 02 March 2009 - 12:01 PM

Hi there, Lucy and welcome!

I also have frequent issues with cystitis like symptoms, especially when I do a "no-no" for myself, like soaking in a tub with bath salts. (I know it is not good for me at times, but sometimes I just need to pamper myself a little.)

Avoid baths at all if possible, showering instead, and if you do take a soaking bath, try to urinate after you get out of the tub. You will also want to remember to drink water and keep hydrated so your urine will not be concentrated which could also cause irritation.

Big hugs


#8 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 02 March 2009 - 01:36 PM

Hello Lucy

Never apologise for posting because whatever you are experiencing someone else is or has and we love the opportunity to share with and learn from you. :)

I also have IC (interstial cystitis) which is an autoimmune disease, if you're frequently getting cystitis like symptoms it may be worth investigation. IC is not caused by infection but by a breech in the lining of the bladder causing the urine to seep into the muscle wall resulting in pain etc. A cyscoscopy can diagnose it and it can be treated with bladder instillations via catheter or oral meds. Alternatively if it is bacterial a urine sample is supposed to be tested to see which antibiotic is actually needed rather than a random one being prescribed.

Try to avoid acidic drinks/food like orange juice, cranberry juice (yes), fresh tomatoes etc, caffine and alcohol can also make it worse. Drink plenty of water as already suggested.

For other feminine itch issues avoid using soap and soap products altogether as soap can cause thrush and no you won't be well odourous as a result! :lol:

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)

#9 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 03 March 2009 - 05:52 AM

Hi Lucy,

I also want to welcome you here! I am so happy that you posted and please...make yourself at "home"!
As far as not knowing us?...If you keep posting here, you'll know us VERY well :D
Each of us may not be experiencing the exact same symptoms as you, but I know, as sure as I'm typing here...that there are folks here who can relate to some of what you have going on.

I hope that you are able to find answers to the questions you have asked.

Please post here anytime. This is a great community for comfort, sharing and support...We're all going through it...but together!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#10 jaxs


    Silver Member

  • Members
  • PipPipPipPip
  • 110 posts

Posted 04 March 2009 - 12:24 AM

Hi Lucy, I'm jaxs,

I also have limited systemic sclerosis and I suffer the symptoms you describe. I started off feeling very ill and for a long time was treated for depression. That made me depressed coz I was really ill.

I have vomited most days now for about 14 years. Then my eyes started to swell up, go blurry and blood shot. I started to look a right mess. I got sent to a eye specialist who could find nothing wrong. For 2 years I was treated for cold sores in the eye, then scratches, and in the end I was diagnosed with dry eyes. Now its sorted, I just use drops. I tend to find stress starts them off again. Funny I know, but true. They are much better now.

I suffer a lot of pain and am in bed most days.

I'm glad you found your way to this site. The people here are great. I don't know anyone personally but have been coming here for about 2 years. I find it very helpful. These people are the best ones to share what you're going through as they know exactly where you're coming from. I hope you find some peace of mind soon.

jaxsx :)
live life for today and not for tomorrow

#11 razz


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 05 March 2009 - 10:02 AM

Hi Lucy,

Welcome to our forum! Your concerns and symptoms are also important no matter how minor you think they are. I am glad you found this website. Don't hesitate to ask questions or contribute. Everyone is here friendly and supportive.

You mentioned how you are starting to have problems with your hand grip. There are stretching exercises for your hands and fingers which would be beneficial in keeping your hands flexible. You should see a physical or occupational therapist who can help you get started. I also experience dry eyes, usually by late evening my eyes are very dry. I use over-the-counter eyedrops for relief and to restore moisture. I have had bladder infections in the past :( and was told I need to drink more water to flush out my system. Within a few days, after a round of antibiotics, I'm feeling better. Knock on wood, it's been a while since I experienced a bladder infection.

I hope you find our many suggestions helpful and don't hesitate to come back.

Looking forward to learning more about you. :)

Live well, Laugh often, Love much

#12 HouckRN78


    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 07 March 2009 - 06:07 PM

Welcome Lucy!

It's always easier for me to bring up those embarassing questions here since I know everyone has a few once in a while themselves. I'm with you on every single symptom. It's so strange to have my fingers feel swollen and stiff yet not look swollen! It's hard to convince your doctors that it's not in your head too. As far as itchiness, my ob/gyn said in sjogrens and scleroderma the mucosal lining of the vagina can be a little dry, just like the eyes and mouth, which leads to mild yeast overgrowth. Not enough to be treated, just enough to be irritating at times. Yuck! :angry: Hope you continue to ask questions and find answers!

Best wishes - Heather