Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Raynauds


  • Please log in to reply
10 replies to this topic

#1 Flower

Flower

    Newbie

  • Members
  • Pip
  • 4 posts
  • Location:wauzeka. wi, 53826

Posted 28 January 2009 - 06:24 AM

Hi!

I'm new here so don't know quite what I'm doing. I'm 54 and have been ill with lupus and sleroderma since the mid 80's. Right now I am suffering terribly with ischemic ulcers on my fingers. The pain is over whelming at times which is most of the time. It has been so depressing to have this chronic pain that won't go away. It's been many months and things are not getting better. I see my rheumatologist again on 2/4. I have seen surgeons and pain doctors all of who don't know what to do. I'm just looking for a little support from someone who knows what I am going through.

I'm not a total basket case...I do have a greenhouse and enjoy working with my plants and watching them grow. Hope to figure this site out and find some new friends.

Hugs,
Flower

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 28 January 2009 - 06:35 AM

Welcome to Sclero Forums, Flower! We're delighted to have you join us.

I'm sorry you are suffering with digital ulcers now. I hope the rheumatologist will be able to provide some relief or treatment for you.


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 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 28 January 2009 - 10:43 AM

Hi Flower,

Welcome to the Sclero Forum. I wish your issues were not of the health vein, but I am so glad that you have joined us here.
We hope that you feel welcome and join us often... to bring up your concerns. There are a great number of folks within this awesome community...I hope that before long, you can count us as your "cyber sclero family".

Folks here, are from all over the world and deal with varied chronic illnesses... I am confident that you will soon meet many of them, as a result of the things you may well have in common.

I was diagnosed in 1995 with Scleroderma, but am fairing okay, thanks to this forum and the wonderful doctors I am fortunate enough to have.
I also have other chronic illnesses, but won't get into that now.

Shelley has provided you with a great link and you may also choose to browse further, as time allows. Upon doing so, you will find a wealth of information.

I wish you the best...in finding treatment(s) that provide a sense of pain relief VERY SOON.

In the meantime, please keep us posted on how you are doing?
Special Hugs,

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

#4 razz

razz

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 28 January 2009 - 12:57 PM

Welcome Flower to our forum!

I am sorry to hear you suffer from ischemic finger ulcers. I used to get ulcers on my finger knuckles frequently, they were all so painful and took a long time to heal. Just recently I developed a different type of sore right above my middle finger nail. The area appears red and clear with drying around the edges. I'm sure this is an ischemic ulcer which is quite different from the knuckle sores I used to get. I keep it covered with fabric bandaides and try not to get it wet. I will find out what my doctor recommends at my appointment next month. I hope your doctor can recommend something to give you pain relief and accelerate the healing process.

I'm glad you found us. You will meet many kind, friendly and upbeat people here! I love flowers too! Maybe you can give us tips on gardening when the weather warms up.

Warm hugs,
Razz
Live well, Laugh often, Love much

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 28 January 2009 - 02:03 PM

Hello Flower

Glad you've joined us! :)

You've been contending with illness for a number of years so no doubt you have a wealth of experience to share with us in the future.

I am sorry you have multiple ulcers, they are painful and long lasting. :angry:

Chronic pain can be very wearing, sapping your energy and enthusiasm as it makes itself the focal point. Be assured that you are not alone in this, many here live with chronic pain for one reason or another so you're in good company. There's a lot of support here and sharing with others in the know provides relief in itself.

I hope your doctors are more helpful in the future and you get some relief from the pain.

Take care and I look forward to getting to know you better as you post more.

Amanda
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)

#6 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 28 January 2009 - 03:10 PM

Hi Flower (love that name!) and welcome to the Sclero Forums. You've hit the jackpot here when it comes to finding support from those that actually "get it"!! I'm really glad you've joined us.

I'm sorry you're having a tough time with ulcers right now. Shelley gave you a really good link, I hope you find it helpful.

I look forward to knowing you better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#7 canon

canon

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 312 posts

Posted 28 January 2009 - 05:31 PM

Welcome Flower,

Very sorry you are going through so much right now. The ulcers sound painful. Hopefully the rheumatologist will be able to help you find some comfort and medicine that will help heal what you have and prevent other ulcers from forming. There has to be something out there to use. I have ulcers from calcium deposits on my fingers at times and they do hurt however ischemic ulcers are different and I believe the treatment is different. Will keep you in my thoughts.

Chronic pain is something else and there are medications for pain. The doctors should be able to find a treatment or treatments for you. You sound so strong. Twenty something years putting up with an illness is a determined person. I think it is OK if we get down once in awhile about it. Thank you for sharing and look forward to future posts from you.

With gentle thoughts,

Judy
A happy heart is good medicine.

#8 PrincessB

PrincessB

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 28 January 2009 - 09:42 PM

Hi Flower,

Ulcers are awful, especially as they hurt so much more than they look like they should, so it's hard to get across to people how you're feeling.

I think the first thing you should do is see a normal doctor to see if the ulcers are infected because that really cranks the pain up a level. They will be able to give you antibiotics for that. When I have ulcers, I put something like Vaseline on the ulcer, then a plaster, then one of those finger bandages that you pull over your finger like a, well, like a condom really! That at least provides some cushioning and also somehow makes you more careful with the affected finger. I had a cream to put on the tip of the finger to dilate the blood vessels, I'm really sorry, but I can't remember what it was called. Nitro something. I also had painkillers from the doctor. I tried for ages to go without seeing him thinking I was being silly, but he was really good when I finally did. In fact, the last time, I was hopitalised for an Iloprost treatment, which is given by IV over a 5-day period and increases blood flow to the extremities to aid healing of the ulcers.

I guess if you were diagnosed in the 80s, you may have already tried all these things. In which case, I can only offer you my support, ulcers are a truly horrible thing.

B x
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#9 Flower

Flower

    Newbie

  • Topic Starter
  • Members
  • Pip
  • 4 posts
  • Location:wauzeka. wi, 53826

Posted 29 January 2009 - 04:36 AM

Princess,
Thank so much for all of your great suggestions. I have tried all that you suggested including antibiotics for three weeks. The one thing you do say and I have not had offered to me are the finger tip bandages. That sounds exactly what I need to protect my finger from unwanted bumps!..Ouch! That really sends me to the moon when that happens! :angry: What I really knead to know is where do I go for these special bandages?? I sure do appreciate all the warm welcomes and suggestions from all of you. I hope to get to know you all much better! :)
Hope to hear from you soon Princess about the bandages.
Have a wonderful day...I plan to try my best. Keeping busy helps. I try to force myself just to get dreesed on some of the bad days. Thank God a have a very supportive wonderful husband who I reward with getting me this far. :rolleyes:

Warm Hugs,
Flower

#10 PrincessB

PrincessB

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Strasbourg, France

Posted 29 January 2009 - 09:31 PM

Hi again,

This is not going to be much help because I get them from a major chemist (pharmacy/drug store) in England! Basically, you get a roll of stretchy bandage with a plastic applicator. You cut off a length of the bandage, which is in a tube shape, slip it over the applicator, put that over your finger, slip the bandage off onto your finger and then stick with the tape. I think it's called applicator finger bandage or something, just describe it to your pharmacist, they should know what you mean. When combined with a thin strip of plaster over the tip of the finger, it really cushions it.

Good luck in finding it!
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#11 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 30 January 2009 - 04:34 AM

Think think the bandages Princess B is talking about are called tubular bandages - often called tubigrip bandages. They are really good for finger tip cuts and ulcers.

Lizzie