CREST,DVT IN LEG,NECROTIC ULCERS
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.
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.
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.
Posted 25 July 2009 - 06:41 AM
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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Posted 26 July 2009 - 11:17 AM
Posted 27 July 2009 - 01:33 PM
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.
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Posted 27 July 2009 - 02:22 PM
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.
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.
Posted 28 August 2009 - 07:27 PM