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Posted 24 July 2009 - 11:46 AM


I'm so glad I found this website & hope to converse with people who are having the same issues as my husband.

He was diagnosed with CREST SYNDROME back in 2001 when he was admitted to the hospital with Chest Wall Pain at thirty years old (I found him on the shower floor curled up in the fetal position.) He had issues breathing in deeply & it was so painful they had to hook him up to pain medication.

At the same time he explained that he had small bouts of heartburn, strange sores on his fingers & that his fingers & toes would turn purple & white when he got cold. While the hospital was doing numerous tests to see what was causing him so much discomfort they saw that his blood work had high ANA counts. It was suggested that he had CREST.

Well to make a long story as short as possible he was released from the hospital after the Chest wall pain subsided only to be readmitted two months later with a DVT in his left leg. It was by chance & luck that we went to see a Rheumotologists that day & he knew exactly what to do when he saw how my husband 's leg was swollen & he couldn't walk on it. We figured he just hurt it at work & we thought nothing of it. So he has been on Coumidin since 2001 because he has something called Cardiolipin Antibodies Syndrome. He had the chest wall pain off & on for about three years & then it just went away.

His CREST has gotten worse over the past few years. He has Esophageal issues including Delayed Gastric Emptying, Dysmotility, Gastroparesis, and Severe Reflux. He also has Scleroderma & Necrotic Ulcers affecting his finger tips & digits, Chronic Uticaria (itching hives & rash)since November of 2008 & now since last weekend a new blood clot has formed in the DVT leg. I rushed him to the ER last Sunday. He has a superficial blood clot in one of the high pressure veins that has been present for years. We explained to the ER Doctor that he had come off his Coumidin for five days so that he could have a procedure called a Right Stellate Ganglion Block done. Then five days after starting the Coumidin again this new clot had formed. The Hospital wouldn't admit him because his PT was in range & no new DVT's are present.

The Ganglion Block was suggested by his Pain Management Doctor & rheumatologist to see if it would help with healing the ulcers & relieve some of the pain. It's been ten days since under going it & no change has been seen yet. He has severe pain with his right hand with both his middle & forefingers are affected with necrotic ulcers that have been auto-amputating them for the past eight months now.

He can't work,he's depressed,miserable,scared & I try my best to comfort & support him. It's nice to be able to join this forum & speak with people that can help with suggestions, information or find specialists in our area (South Florida). Thank you for taking the time to read my story & I look forward to hearing from anybody who has feedback.


#2 Cheryle


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Posted 25 July 2009 - 01:16 AM

I have CREST, but not the DVT and some of the other problems your husband is having. Wow he is really having a tough time isn't he? I'm not in Florida, but I bet there will be some folks respond to give you some suggestions of specialists. I'm glad you found us and wanted to welcome you.


#3 nan


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Posted 25 July 2009 - 02:15 AM


Welcome to the forum! Your husband is lucky to have you. I am so sorry that he is dealing with all of the issues that he is dealing with. I don't know of any doctors in your area, but I am sure there are people on this site that do. I was diagnosed with CREST in 2006. Feel free to private message me if you have any other questions.
Take care of yourself and your husband.


#4 Amanda Thorpe

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Posted 25 July 2009 - 06:41 AM

Hello Susie

Welcome to the forum although I am very sorry it's because your dear husband is having so much difficulty and pain. Scleroderma can be an awful disease as you both clealy know.

I don't have much experience of ulcers and none of necrotizing ones but I know there are people on this forum who do and hopefully they will chime in. What I do know is the despondency and desperation chronic pain can cause. Would is be worth contacting the pain management doctor again for a review as the ulcer pain is continuing well after the operation to resolve it?

What about yourself, do you have any support? In order to keep caring for your husband you need to take care of yourself, although we will do our very best to support you here on this forum, gather family/friends around you that can provide you with support.

Both of you are trying to adjust to the intrusion into your life scleroderma has made and it's no easy adjustment and unfortunately it isn't a quick one either. We have some information regarding emotional adjustment that you may find helpful.

Please keep posting and take care.
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#5 bookworm


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Posted 26 July 2009 - 11:17 AM

Hi Susie, I'm sorry your husband is having such a rough time. I also have CREST and many of the same problems have happened to me, but, with doctors who know about scleroderma and the right medicines, I am leading a pretty normal life and feeling pretty well! Right now, I am just going to address the digital ulcers, but I will tell you that I also am on medicine for heart burn or acid reflux and I am on anti-depressants, as well. Regarding the ulcers, I have had several ulcers and I can tell you they are all very different! The horrible one I had a year or so ago was the most painful thing I’ve ever had in my life! Several doctors tried different things and different medicines, both for treating the ulcer and for treating my pain. Nothing was helping. The ulcer continued getting worse and the whole focus of my life was to just live through the day and endure the pain! I really couldn’t function. Finally, in desperation, one doctor sent me to a pain management clinic. Thank goodness, the doctor there had treated sclero patients before and seemed to know what to do. I wasn’t there five minutes before he asked when I’d last eaten and, since it had been a long while, he whisked me straight to the operating room and did a procedure called a gangleon (sp?) block. I was given some sort of I.V. anesthetic which didn’t actually put me out, but I didn’t feel a thing. The procedure involved putting a needle into my neck and I don’t actually know whether it was used to inject something or what. However, the purpose was to force more blood to my finger tips in the left hand (which is where the ulcer was.) This was to help heal the ulcer as well as to help ease the pain. In addition, the pain doctor gave me a prescription for a narcotic, and for the first time in weeks, I felt some relief. I can’t even begin to tell you how wonderful that was! These pain management doctors are doctors who have specialized in anesthesia. They know the latest pain-control methods and they tend (I believe) to be more liberal in their use of strong drugs when they are needed, as they obviously were in my case! I had no problem whatsoever “getting off” the narcotic when my finger began healing, I used the medicine less and less and then just quit taking it when I didn’t need it any more. I understand that most people in chronic pain do not get addicted to pain medication and doctors are coming to understand this -- but not all doctors! Anyway, my pain was eased but the ulcer still didn’t seem to be healing. It had turned black on the end which indicates gangrene. The ganglion block was done two more times and the ulcer did seem to get a little better, but one doctor saw that the end of the finger had been partially eaten away by the gangrene and he thought the finger should be amputated at the first joint because he felt the bone was too close to the outside and might get infected before it healed. A bone infection was what worried him and he was very worried and really wanted that finger tip cut off!! I was so very upset that he sent me for another opinion from a plastic surgeon I’d seen before for elbow sores. I knew he had treated sclera patients before and really expected him to disagree with any cutting! He took one look at the finger and said, “It’s healing; leave it alone.” He said if you go cutting on sclero patients, they may not heal and then you’ve got a worse problem! I am going into all this detail about the doctors because I just want to illustrate that the doctors didn’t agree and if I had listened to them, there were three who wanted to amputate! Only because I had seen this plastic surgeon before and figured he would nix the amputation, did I ask to get his opinion. He said just what I’d hoped and expected. I asked him about bone infection, and he said he didn’t think I’d get a bone infection and if I did, we’d treat it. I guess if that had happened and the treatment hadn’t worked, amputation still would have been an option. By this time, the ulcer really was much, much better. It had this ugly black “cap” on it and it was under this that the bone was very close to the surface. But, it wasn’t hurting unless I bumped it and really did seem to be getting better. It was just SO SLOW. But it did heal and it even grew in another fingernail! It’s not totally normal. A little is missing off the end and the nail is a little strange looking, but it’s mine and no one cut off a chunk! One of the doctors actually said, “Well, I’ve learned something!” It’s always nice when a doctor can admit he was wrong! The whole ulcer and it’s treatment and healing took about a year! Shortly after it healed, or about the time it was healing, I began getting another one on the tip of the index finger of the right hand (the first one was on the left index finger tip). You can imagine how upset I was! But, the good news was that over that past year, doctors had begun using Viagra for digital ulcers!!! My wonderful rheumatologist knew about this and put me right on Viagra and that ulcer began healing in a couple of days and was gone within a couple of weeks or so -- nothing like a year! I was later changed to Cialis because it is a longer-lasting drug and I can take one half as much for the same effect. I do think the key to staying sort of well is having a good doctor who is knowledgeable about scleroderma -- and there aren’t a lot of them around! I’m sorry this is so long, but I couldn’t think what to leave out! Tell your husband to hang in there and not give up hope. Keep looking for answers -- and the right doctors! Well, sorry for the length of this! I hope it helps.Mary in Texas

#6 Shelley Ensz

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Posted 27 July 2009 - 01:33 PM

Dear Susie,

Welcome to Sclero Forums! I'm sorry your husband is in such poor health and so much pain, as well. I am sending lots of extra warm hugs for both of you. I look forward to hearing from you a lot more. Please keep us posted on how things are going.
Warm Hugs,

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The most important thing in the world to know about scleroderma is sclero.org.

#7 Sweet


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Posted 27 July 2009 - 02:22 PM

Dear Susie,

Welcome to the forums. I'm really glad you've joined us, but sorry it's due to your hubby being so ill. It sounds like he is really having a tough go of it. One bit of encouragement I'd like to give you is that at times some of these symptoms will wax and wane and he'll get a little relief. I too have CREST, but I haven't had all of the problems your husband does. At times though I wonder if I'm going to get through one session or another and sooner or later I get some relief if I really balance my life and not overdo it in any given area. Frankly at times, some days all I get done is a shower!

I'll be thinking of you both, please keep us posted.
Warm and gentle hugs,

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Posted 31 July 2009 - 06:25 AM


Thank you for sharing your story with us. We're glad that your ulcer's did heal & your feeling better. Some days seem to be worse than others for him when it comes to the pain associated with the necrotic ulcers but, most of the time it is a constant burning & stabbing pain. He's even woken up at night in tears,screaming because it hurts so bad. The pain medications do help considerably for him but, it doesn't take away all the pain. It's amazing how it can reshape your fingers and his nail has also fallen off because of it. His Rheumotologists prescribed Revatio which is like the Viagra & Cialis. He's been taking that for a couple of months now along with Amlodipine & Prazosin for four months now. They really don't seem to be helping to much, especially, if your results were apparent within days. However I do realize that everybody is different & it depends on the type of ulcer. Thank you for letting us know that because we will inquire about it when we see his rheumatologist again. It might very well help if he takes something stronger or more popular like Viagra. Of course she did have to go rounds with our insurance company in order to get the Revatio approved. He does have other smaller ulcers on both hands that have come & gone for years now. We were told that it is very important to keep your skin moisturized to help with the tightening & hardening skin that affects the area around the ulcers & finger digits.

Take Care,

#9 Patty LaFave

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Posted 28 August 2009 - 07:27 PM

I have CREST, which was diagnosed in 2004, and have had some similiar problems as your husband. Up until 2005 I had had multiple different digital ulcers, my worse being my right index finger in 2004, which turned black and deteriorated until they amputated half the finger. At the time I had the ulcer on my right index they found via a test to check the arteries in my arms which give blood flow to the hands that I was missing part of the artery on the left side of my wrist, so a surgeon removed an artery from my left lower leg and grafted it to where the artery was missing. Unfortunately this did not increase the circulation enough to the blackened finger and the amputation was performed. Since that time though I have had a surgery to both my hands called digital sympathectomies, which is where the surgeon, in this case it was an Orthopedic surgeon, removes the outer layer of each vessel that supplies blood to the fingers allowing those blood vessels some room to expand in hopes that more blood flow is achieved. Since this surgery was performed I have not had another digital ulcer. If my hands are cold they will turn blue/purple, but Ive no ulcers. Just prior to having this surgery on my left hand I had developed a very painful non healing ulcer on my left index finger, where to help promote healing there my rheumatologist admitted to the hospital and put me on an IV medication called Flolan. That also worked to get that ulcer to heal. Good luck and I hope your husband feel better soon. Patty