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Biomarker for Diffuse Scleroderma skin has been discovered!


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Pressure sore...I'm too young surely!


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#1 Amanda Thorpe

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Posted 18 December 2010 - 04:05 AM

Hello All

So I have had this large sore thingy on my back of my right akle for about 4 months which is getting bigger and is rather painful. I wondered if it was an ulcer and meant to talk to the rheumatologist about, however, that appointment keeps getting further and further away so when my general practitioner called out to give Ma and me our flu jabs I whipped my slipper boot off and flashed him the thingy. He declared it a pressure sore...I'm sorry but when did I become a bed ridden 90 year old?!

So of course I googled pressure sores and they are also known as pressure ulcers so I concluded that I have my first ulcer courtesy of scleroderma. Most people have digital one but not me I have to have a big one on my ankle. Mind you I actually think that's better as digital ulcers are more prone to being knocked because they are more exposed and therefore more painful.

I wonder how long my pressure sore, I think I like that name for it most, will last? I'm supposed to bandage it at night and keep pressure off it by not sleeping on it but I've already been doing that for months because it's just too painful.

If I can get someone to take a photo of it I'll put it on site so you can all go oh gross! :lol:

Take care.
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#2 Joelf

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Posted 18 December 2010 - 05:25 AM

Hi Amanda

Oh, how horrible for you; what an absolute pain (in more ways than one! ;) )..... I'm so sorry.

I would imagine that any shoes you wear would chafe against it; the only thing I could suggest is perhaps putting a pad with a hole cut out of it over the actual area of the ulcer. Hopefully that would alleviate any pressure on the sore part. I've been out wearing my husband's boots when I had a swollen bunion as my own shoes felt too tight and uncomfortable but don't know if that could be an option for you.

Although I get Raynaud's, mercifully I've never actually had an ulcer (yet!)

I can't wait to see your photo!! ;) :wacko:

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#3 enjoytheride

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Posted 18 December 2010 - 10:15 AM

Owie- what could have put pressure on that spot?
Is it right on the back of the tendon? If it is, you can bandage it by putting a roll of material on either side of tendon and then wrap it so that the bandage "bridges" the sore because it touches the material rolls on either side. If it more on the side, this will work too.

#4 Lynnie

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Posted 18 December 2010 - 01:44 PM

Oh Amanda how have you managed that!! :unsure:

As I'm a qualified Nurse of 30 plus years, and work in our local hospice, I've nursed and dressed many a pressure sore!.

Firstly, and most importantly, you must prevent the number one complication infection; does your doctor's surgery have a practice nurse? If you can't get to them, have a district nurse visit twice a week to monitor and dress it for you; there are quite a few excellent topical preperations and specially impregnated dressings and pressure reliever dressings to help to heal it.

Sadly, these sores take a lot of tender loving care and patience to heal them as they have to heal from the base up...slowly!

I know perhaps that I'm trying to make you suck eggs here and you have read up on it, but I've seen and had to deal with some really bad ones in my career and it isn't pleasant at all. Yours seems in its early stages of dermal break down and there lies the importance to start on speedy treatment, as when our skin and circulation are compromised we are at risk of complications due to impaired blood flow to our skin,and slow healing, as well you know!

No, do it yourself here Amanda, get it treated as soon as possible bless you
Take very good care of it and you'll be okay. Let us know how you go on.
Hugs as always :emoticon-hug:
Lynn x

#5 Snowbird

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Posted 18 December 2010 - 02:05 PM

Ouch Amanda!

Sorry to hear that! I hope it heals soon, obviously it's already taking its own sweet time!

Yes, a picture is worth a thousand words they say....maybe you'll get to show us one?

Good luck...I hope one of the two options you've received already works for you....I especially like the sound on Enjoy's because it sounds like it could 'cuddle' it snugly and maybe protect it a little.
Sending good wishes your way!

#6 Jeannie McClelland

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Posted 19 December 2010 - 05:44 AM

Oooh! Poor you! It sounds utterly miserable. I hope you can get it healed up soon and without too much fuss.

While we are waiting on the photo to be grossed out, I thought I could take up the slack by telling you about a couple of really old treatments for pressure sores. DO NOT TRY THESE AT HOME! Ready? Treatment #1 was 'washing' the wound with egg white to seal out nasties. Treatment #2, put a pad of raw minced beef on the ulcer. The enzymes were supposed to help healing somehow. Treatment #3 Maggots. Yep, maggots. They only eat necrotic (dead) flesh, thus debriding the wound and leaving only living tissue, which promotes healing. Urg~ They all make a certain amount of sense, I guess, but boy, am I ever glad to be living in the 21st century. Information courtesy of my 89-1/2 year old retired nurse mum.

Warm hugs,
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#7 Amanda Thorpe

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Posted 19 December 2010 - 10:47 AM

Uh um I think I like ETR's suggestion best, not that yours don't sound really great Jeannie! :barf: :barf:
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#8 judyt

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Posted 20 December 2010 - 10:14 AM

Hi Amanda,

And I thought I was the Ulcer Queen!! I have always thought my ulcers were caused solely by vascular incompetence but, having read an item here a few weeks ago, I now know they can be Sclero related too. I wear pressure stockings every day but I still get them from time to time. I am older than you now, but believe me I have been getting these things for at least 15 years I guess.
You still haven't said exactly where it is - mine are usually just below the ankle bone on the inside of my leg and the article said that was the most common place.

As for healing them, that is the tricky part. The one I am dealing with now is at least 3 months old and since September I have had one on each leg because I damaged the side of my shin getting out of the car. The shin one is healed and the ankle is just about healed. I have been at the doctor's office 3 times a week for endless weeks but I can look after it myself now - until next time!! There are loads of different dressings to try but I have found the simplest ones best. Keeping them dry is hard but important. Showering with one leg wrapped in glad wrap and the other in a plastic bag and up on a stool is no fun I can assure you. As well I have been on countless courses of Antibiotics even though they don't look particularly infected but it does seem to work.

Has anybody tested your blood flows in your legs? I have had doppler measurements at home and a complicated test at the hospital which did show that they are vascular but the latest one is slightly arterial. The difference is important I am told because that affects the treatment. My good friend, who is a whizz bang district nurse, and who has an encyclopaedic knowledge of medical things tells me that the painful ones are more likely to be arterial. My ankle one is very painful so I am a bit concerned about that.

You have my most sympathetic thoughts because I know how frustrating these things are.

Warm hugs from NZ
Judyt

#9 Amanda Thorpe

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Posted 22 December 2010 - 07:46 AM

Thanks Judy, I knew someone would have experienced this. Mine is on the back of my right ankle where you would traditionally get blisters from shoes. I have already had it for a number of months and from searching the internet I realise that it should have more treatment than it has.

I didn't know about keeping it dry until reading your post and will now do so, shame I had a bath yesterday! I have been given dressings to put on it at night but that's about it. I thought I'd wait until after the holidays and then get my surgery to send the district nurse round to see to it as I can't get to the surgery myself.

I had a doppler examination on my feet when first diagnosed and the blood flow was good then.

I just don't know how I did it and it is very painful.

Take care.
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#10 judyt

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Posted 22 December 2010 - 09:16 AM

Hi Amanda,
So pleased my post was useful. I have not had a bath for years (maybe that is why I have few friends!!!!!!!) and the ulcers are the main reason. My skin is so fragile and they say that soaking in a lovely, warm, bubbly bath is the best way to deplete your skin of its oils - boo hoo!!
We have a spa bath and the only people who use it now are our grandchildren. As well it is impossible to bath yourself and keep both ankles dry.

I am pleased too that you have decided to get the district nurse onto it. They see and treat these things all the time and often have lots of good tips. We have an ulcer clinic in Auckland at one of our hospitals and I go there sometimes for very persistent ones.

It might be a good idea to get the nurse to swab it just to check that it is not infected - I am often surprised when I am told that an ulcer is infected again and again when I am being so careful to keep it dry.

Best of luck with the healing. I will see if I can send the 'pain-free' fairy to visit you!!

Hugs from
Judyt

#11 debonair susie

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Posted 27 December 2010 - 06:06 AM

Hi my dear Sclero Friend, Amanda,

It's likely that you have already done this, but just in case...

AmeliaQ is suffering with ulcers right now and Craig offered up some very helpful information, with regard to treatment for healing. With his expertise (having years of experience deealing with ulcers), I was very impressed with his suggestions of helpful hints!

(Maybe all of us on "The team" should SCOLD that ulcer...think that might help)?! :wub:
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#12 judyt

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Posted 27 December 2010 - 09:48 PM

Hi again,

Susie has suggested reading Craig's post about dealing with ulcers to see if his ideas might help. I think, really that ulcers around the feet and ankles are quite different from the digital ulcers which are caused by Raynauds. I had one or two small eruptions on my fingers before I started on Amlodipine and they were quite different from the ulcers I have on my ankles and legs. My Raynauds is completely under control now, I feel the cold but no attacks for about 18 months since I added diltiazem to my list of meds.

I wish I could say the same about the leg ulcers. The article which talks about lower limb ulcers was an interesting read and stopped me from feeling that it was my own fault for not being careful enough, not resting with my feet up often enough and so on and so on.

Of course every suggestion is worth considering. Amanda commented that she didn't know what she had done to cause her ulcer and I know that I don't need to 'do' anything in particular to cause some of them - with others I know very well that I have injured myself by not being careful enough.

I hope to hear from Amanda soon that she has been able to see the district nurse and get some relief.

In the meantime, if anybody else has had experience of these things it would be good to hear any ideas you have.

Warm hugs from Judyt

#13 Amanda Thorpe

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Posted 01 January 2011 - 06:18 AM

Hello Judy

Thank you for your post. Haven't arranged the district nurse yet but hope to do so this week, actually Ma is doing it for me because she knows I'll never get round to it.

I did take your advice about keeping the ulcer dry and recently bathed with my foot in a white bin liner sealed with elastic bands. It didn't even strike me as being weird, mind you I have had scleroderma for 3 years so weird is my normal, I know you'll all understand that!

The picture of my ulcer will soon be available for viewing here at sclero.org and I'd be interested in your opinion of it.

I'm glad you made the point about not having done anything to cause the ulcer as I was beginning to wonder...

Susie scold away please!

Take care.
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#14 Penelope

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Posted 04 February 2011 - 10:51 PM

Oh thank you, dear one! The last thing we need is the self-blaming. This is my first post - and I know, not my last.

I have two awful ankle "lesions" -as we are calling them. They are on the outside of each ankle - which amazed my sister - "how can they both be in the same place?" Well, as I was first diagnosed with staph infection (due to a year on chemotherapy) I was sure it was because I wasn't changing my sheets enough or washing my clothes in hot enough water. These started out as what I thought were mosquito bites in - are you ready - AUGUST! I figured I must have scratched them and caused them to become infected. I am only 15 months into my diagnosis of systemic scleroderma and really wasn't aware of the risks to my skin as a whole (ankles included). I should have started with my rheumatologist and then my primary care doctor to realize what we were dealing with - although my rheumatologist still can't find a lot about the ankle ulcers and whether to increase channel blockers that are working fabulously on my hands. Back to the ankles - I was sent to a wound clinic in January after months on bandaids and neosporin to soaking (ACK - worst thing to do EVER)on my own. Oh, did I mention I am not a doctor?? Well, I forget that fact and try to self-diagnose all the time.

The wound clinic had me on a collagenase ointment to debrid the fibron and I was instructed to keep it moist, yet dry? Huh? Now, after two weeks of dressing changes and saline applications they have put me in a pressure wrapping that stays on for a week and can not get wet - let that sink in - oh yes, sponge baths and sink hair washings. Plus, I have to stay off my feet for as much as possible - and still work. I go back on Wednesday and I will keep you posted on the results after a week in the pressure wrapping. They hurt if you are on your feet too much, so they keep me honest - and there is the usual cast itching. More to come and I also may have pictures to add. This posting is amazing.

Thanks.

#15 Joelf

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Posted 05 February 2011 - 10:57 AM

Hi Penelope,

Welcome to these forums!

Your ankle ulcers sound very painful and difficult to deal with; I do hope the treatment you're receiving works and they soon feel better and heal satisfactorily. There has been some good advice on the earlier posts on this thread which I hope you will find helpful.

You don't say in your post whether your rheumatologist is a Scleroderma expert. It's very important to be treated by someone who really understands this very complex disease as sadly many rheumatologists lack the expertise to deal with it.

Do please keep posting and let us know how you get on. Posted Image

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#16 Amanda Thorpe

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Posted 06 February 2011 - 03:06 PM

Hello Penelope

Welcome to the forums! My sympathies with the ulcers! I have mine dressed twice a week by the district nurses and like yourself can't get them wet which makes washing interesting and yes...my feet smell! I'd like to pretend they don't but they do, they sweat from the bandages and slippers, well I have to keep warm don't I? I figure that in the weird 'n' wacky world of scleroderma there are worse things than smelly feet! :lol:

Take care and keep posting.
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#17 Jeannie McClelland

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Posted 06 February 2011 - 10:01 PM

Hi Penelope,

Welcome to the Forums!

I'm fortunate - no ulcers on my extremities. I'm going to try something I learned from Shelley that might just help you all.:fairy: :fairy: There you go, a double wave of the magic wand! Joking aside, I wish I did have a magic wand to wave and make it 'all better'.

Best wishes,
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#18 Penelope

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Posted 13 February 2011 - 10:55 PM

Hey friends - you are all so awesome. I find so many posts I want to respond to - so much in common. Well, the pressure bandages are doing the trick - I blew the doctor away with the improvement - due in most to an outstanding support system that keeps me off my feet! I'm hoping to be totally healed in two weeks - optimism has been taken by this disorder! Happy Valentines Day to you all!

#19 Amanda Thorpe

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Posted 14 February 2011 - 12:24 PM

Excellent Penelope! :woohoo:
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#20 Joelf

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Posted 14 February 2011 - 01:20 PM

Hi Penelope,

That's excellent news that you've had such an improvement with your ulcers; long may it continue!! :bravo:

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