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Biomarker for Diffuse Scleroderma skin has been discovered!


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Calcinosis cutis on knee


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#1 Alice02

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Posted 01 October 2009 - 06:50 AM

Hi everyone, I just want to thank you all for being always there every time I need help. I appreciate.

I had surgery on my knee September 9, 2009 and removed bunch of calcinosis cutis, I thought that it will ease the pain that I have been suffering for long time. Unfortunately, I now have crucial pain more than ever. My surgeon had to take out stitches too soon to let blood come out, we thought that will perhaps release the pressure and help ease pain I'm experiencing. Well It didn't, and I'm still in constant terrible pain. I had tried many different of pain medications.

My surgeon does not think that the pain I have is from surgery. I had had these calcinosis cutis with Scleroderma for more than thirty years now, I used to get pain only when I have an infection. But now I'm so confused I don't why I'm having so pain now. Most the time I have go to the emergency room to get some relief.

My rheumatologist thinks is all cause by Scleroderma, and prescribed more of pain killer for me.

I am going to go to John Hopkins Hospital, but it will be a while before I get there.

Thank you in advance for your input.

Much love,

Alice

#2 smac0719

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Posted 01 October 2009 - 10:28 AM

Alice,

I'm sorry you are having so much discomfort with your knee. I wish I had some advice for you, but have no knowledge of your condition. Hopefully there's someone reading your post who has some experience with this and can provide some helpful information.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 Shelley Ensz

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Posted 01 October 2009 - 04:49 PM

Hi Alice,

I'm sorry you are experiencing so much pain, and that it is not relieved sufficiently. I would think they'll have some answers for you at Johns Hopkins.

One thing to consider is that sometimes we build up tolerances to pain medications, and that is especially likely to happen after being on them for decades. Then, it can seem like nothing works. Has your doctor mentioned having you go to a Pain Management Center? Often, the issue is that we are just not on strong enough meds or with the proper dose; sometimes we need to try different ones. Perhaps there is an additional cause for the pain, or you need supplemental approaches on top of the medications to fully manage it.

Do you also have skin tightening in the knees? I do, and from time to time it can go through phases of being painful. Also there could be something else wrong, like in the joint or something. I'm sure they'll check you over from head to toe at Johns Hopkins but make sure they do a really good pit stop at your knees, okay?

And let us know how things go. We are always here 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.

#4 Shelley Ensz

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Posted 06 October 2009 - 05:20 AM

Alice, has your knee settled down at all, yet?
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.

#5 debonair susie

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Posted 06 October 2009 - 05:33 AM

Hi Alice,
I saw your post when you first put it up, but wasn't able to post, at the time.

I just wanted to send {{{{Comfort Hugs}}}} your way as you wait for your appointment.

I also will keep good thoughts...that the outcome is beneficial.
I feel so for you.
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#6 Sam

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Posted 07 October 2009 - 02:01 AM

I had this done back in 2003 on my right knee. I don't remember expericing pain like that. I do know it was sore but it went away. So has it settled down for you yet? What did the other doctors say?
Sam

#7 Alice02

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Posted 08 October 2009 - 03:34 PM

Hello everyone,

Thank you so much for your input, it means so much to me. I am feeling so much better now, and I have very little pain. Although I am still using the cane to walk, and it is kind hard especially I live alone. But hopefully in week I will be able to walk normal again. I actually started to feel better right after my surgeon removed stitches, I had so much drainage for more than a week. So I was right about that blood underneath was causing all that horrible pain. I told nurse practitioner at the hospital, but she didn't think so. As of result I had to suffer crucial for two weeks. And yes Shelley you are right that we do build up tolerances to pain medication I had to be on very high doses in order to get some relieve, and only last for couple hours.

I had many surgeries as mentioned, and I never was scare of going in operation room, but now after this surgery I will not have another surgery again for very a long time.

Much love, Alice