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Painful ulcers on fingers


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#1 gemini26

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Posted 18 February 2008 - 05:06 PM

Hi, I hope I'm not bothering anyone, but I don't have anyone else to talk to. I have such painful ulcers under my fingers. They throb and ache all the time. I know it's the raynaud's/scleroderma, but not one doctor will tell me for sure what's going on.

My aunt has the exact same thing and I saw her fingers up close 2 days ago and I almost passed out. I know this is what is wrong. Why won't these doctors want to tell me what it is or what to do. I have no support whatsoever...not at home....not at work...not in the medical community...

This is just the tip of the iceberg. I have raynauds, diffuse esophageal spasms, trouble swallowing, scleroderma, broken blood vessels on my lips, face and neck, gastro problems, swelling of hands and feet all the time, hiatal hernia, gall bladder sludge, lung involvement, constipation...also fibromyaglia (which is now being debated) and sleep apnea. I'm sure there's a ton of stuff that I forgot. I am 41 years old, married (if you would call it that) with 3 teenage sons. My Rheumatologist keeps telling me it's in my head

My aunt (my mother's sister) has lupus (sle??), raynaud's rheumatoid arthritis, scleroderma, esophagus involvement.

I DON'T KNOW WHAT TO DO ANYMORE! CAN SOMEONE HELP ME??

pHYLLIS

#2 LMS

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Posted 19 February 2008 - 01:24 AM

Phyllis,

You are not bothering anyone. It sounds like to me you need to fire your rheumatologist if you are not getting what you need out of the relationship. Call telephone information on "goggle" the American Medical Association to get a referral in your area. It is not all in your head. Even the best story teller could not make up what we experience on a daily basis. Good luck! And remember it can take 3-6 doctors before we get a clear diagnosis. I'm only on my first (lol)

Loren

#3 PrincessB

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Posted 19 February 2008 - 02:04 AM

Hi Phyllis,

I really sympathise with your ulcers, they are so horrible and people who've never had one just cannot imagine how something so small (in size) can bring you to your knees with pain. Have you tried trinitroglycerine which you apply topically to the base of the finger to increase the blood flow? It won't take the pain away, but it should help them clear up faster.

I'm no doctor, but it seems incredible that your rheumatologist is telling you it's all in your head. Get a new one! What country are you from?
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#4 KarenL

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Posted 19 February 2008 - 05:14 AM

Hi Phyllis...wow, how could anyone, least of all a doctor say this is in your head? Get a new doctor --TODAY!! Search the site here and find someone who is knowledgable. Those ulcers are serious and can result in digit loss! Do not put this off. Ask for a prescription of Nitro-bid ointment and apply it to the base of the affected finger. Good luck, you are in a frustrating position.
Karen

#5 Sweet

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Posted 19 February 2008 - 05:49 AM

Hi Phyllis,

Welcome to the Sclero Forums. I'm so very glad that you've found us. You are now among people that truly understand what you are going through. Have you seen a sclero specialist? I think that needs to be your first move. See someone that is very familiar, and understand what this disease is about. I'm not sure where you live, but if you tell us we can find one for you.

Post often, and we'll be here for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 Peggy

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Posted 19 February 2008 - 06:11 AM

I'm with everyone else here who said "fire" your doctor and find a new one. I can't imagine any health care professional, even if they don't specialize in sclero to say "it's all in your head" ..................Wow!

I have Raynaud's also but have never had the ulcers but I have seen others post that they take viagra to help with them. If that's true you should check it out. It sounds like it really works and it's something I will explore if I ever get them.

Welcome to the site.

Warm hugs and blessings.

Peggy

#7 janey

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Posted 19 February 2008 - 04:39 PM

PHyllis,
Welcome Darlin'. You are not bothering us at all. On the contrary, we are all so glad that you have joined and are seeking help. You have a lot going on and it appears that your doctors aren't listening! I agree - it's time to get a second or even third opinion. Here is our page on scleroderma specialists. I don't know where you are from, but it list specialist worldwide. If there isn't a specialist in your area, you can search for another rheumatologist by going to the Find a Rheumatologist.

Please make a phone call today. Make an appointment and take in a written list of all your symptoms.

Big Hugs,


Janey Willis
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#8 peanut

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Posted 20 February 2008 - 12:15 AM

Hi Phyllis,
I'm late piping in. Hopefully by now you're in line to see a scleroderma specialist. All the specialists in my area have waiting lines, but if you call around 4pm or when they do their reminder calls you might be able to sneak in to a canceled appointment.

Please do ask about nitro bid cream, Revatio aka Viagra and a Calcium Channel Blocker medication such as Norvasc. You know about nitro bid from everyone. Revatio is great for ulcers. Revatio increases the supply of blood to the lungs and reduces the workload of the heart. Calcium Channel Blockers are similar - they relax blood vessels and increase the supply of blood and oxygen to the heart while reducing its workload.

Ask lots of questions so we can figure out the answers together.

take care,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#9 Sweet

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Posted 20 February 2008 - 05:50 AM

Peanut, you're going to make me fat with that avatar of yours! Everytime I see I want to run to the freezer! hehe :huh:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Susannah

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Posted 20 February 2008 - 02:40 PM

Hi Phyllis, Ive had ulcers on my fingers the last 2 winters now and last winter I experienced the worst pain ever ( Id rather have 10 more babies lol). They became infected due to the fact my general practitioner put the wrong products on them causing too much moisture for them to heal. I ended up being seen by our district nurses whom are the most wonderful people on earth and know exactly what they are doing, they deal with ulcers of all kinds ever day. What a huge difference using the right products makes. I also went on a 7 day course of intravenous antibiotics and new pain relief. I was taking a heavy pain killer and panadol during the worst part of the pain which only gave maybe an hour, 2 at the most of releif, now im on different prescription drugs. I have found these new drugs help the general pain I endure everyday too, making living alot easier esp whilst being a wife and mother and wanting to participate in their lives as much as possible. I see many here have mentioned Nitro Bid Cream, Ive asked for this here in New Zealand, but is no longer available, so have no experience with it. If there is another product like it that anyone knows about, id love to know. So, anyway, for me, the biggest issues concerning my ulcers was, to make sure they are dressed properly with the right products (I can find out the names of these if you like) and to get onto the right pain relief. The fact is, they unfortunately just take a while to heal, but I have found, they do eventually go away. Being in a warm house, environment, town, country etc is paramount. Anyway Phyllis, Ive gabbled on and on. Would definitely love to hear how you get on. Relax and Rest, it will be ok! Susannah

#11 gemini26

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Posted 21 February 2008 - 03:22 PM

Thank you everyone who responded to me. For those who have asked, I live in Pennsylvania. I did find another Rheumatologist at Thomas Jefferson. I'm going to give him a call tomorrow AM. It feels so good to finally talk to people who understand me. You have given me hope, which I have been lacking for a very long time.

I will let everyone know how things turn out. Also, I'm going to ask about that Nitro-Bid Cream.

Thank you all. I will keep in touch as I hope you will still be there for me. Also, if I can help anyone, just let me know. Help goes both ways!

Talk to everyone tomorrow.

Phyllis

#12 Alice02

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Posted 21 February 2008 - 04:32 PM

Dear Phyllis,

Hanging there, it easy said than done, believe me I know how you feel. I had ulcers on top of all my fingers for couple years and I know how painful that is. One day they just desappear and instead I got calcium deposit infections and a lot of them. Most of all I have wonderful friends and that really has helpe me, having someone to talk to helps so much
Your in my thoughts,



Alice02

#13 luvbnmom3

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Posted 22 February 2008 - 03:22 AM

Sorry you're dealing with so much. I hope the doctor you see this morning is much better! I hope you post how it goes.

#14 Sweet

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Posted 22 February 2008 - 06:24 AM

I'm really glad you found a doctor to call. I will be anxiously awaiting results from that appointment!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#15 debonair susie

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Posted 22 February 2008 - 07:15 AM

Oh Phyllis, I feel for ALL of you who have the painful ulcers!

As far as being a bother? No way are you even close... we are glad you posted and I know that
there are many who will continue toshare helpful information with you.

Take care of yourself.

Soft Hugs, Susie
Special Hugs,

Susie Kraft
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#16 Michelle2

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Posted 22 February 2008 - 11:17 AM

Hi Phyllis~

Welcome aboard with big hugs from all of us. You found the right place we are all here for you. I've had painful digital ulcers on my fingers as well. I know that they are sooooo painful. At one point I just wanted to get the tip on my finger removed. (Not that I would actually do that, but the pain was so great I was just desperate for some relief. I was given the Nitro cream and that seemed to do the trick. I had my ulcer for well over a year. I did develope scar tissue from it which helped reduce the pain I was having. We all feel for you. I am really glad that you found a new dr. THIS IS NOT IN YOUR HEAD. THIS IS REAL!

Make you you keep us today with your dr's appt.
Take care and stay warm,

Michelle

#17 bookworm

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Posted 22 February 2008 - 10:24 PM

Hi Phyllis,
I agree with everyone else. And, welcome to the forum! I have had horrible finger ulcers and the pain is unbelieveable! After my last one, which resulted in gangrene and my losing part of the finger, my doctor put me on Viagra and I haven't had a bad ulcer since! You might ask your new doctor about Viagra, Revatio (same thing as Viagra) and Cialis. For me, the Viagra was a miracle. I have since been switched to Cialis because my rheumatologist says it lasts longer. I just take 1/2 a pill every day.
Of course it's not in your head! That makes me furious that your doctor said that.
Good luck and please keep us posted.

Mary in Texas

#18 Susannah

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Posted 23 February 2008 - 05:32 PM

Hi Guys
Am I allowed to ask in this forum, what you all use on and for your ulcers, what kinds of dressing etc?
Susannah x

#19 Kiwi

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Posted 24 February 2008 - 10:30 AM

Hi all
Ulcers is by far the worst part of this condition for me - I currently have 7. 4 on my fingers, 2 on my elbows and one on my arm.
I have tried EVERYTHING. The best thing I've found is plasters (bandaids) that completely seal the ulcer so no water or air can get in. Leave on as long as possible.
Hope you get relief - it does eventually work but because I'm having trouble giving up smoking I have made it worse for myself....
Kiwi

Diagnosed 2006 - Diffuse Scleroderma
Skin and lung involvement

#20 janey

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Posted 24 February 2008 - 11:26 AM

Susannah,
We have an extensive list of treatments for ulcers. A lot of the topical stuff are under "Creams and Solutions".

Big Hugs,


Janey Willis
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