I was diagnosed with Raynaud's in approximately 2001. I was just recently diagnosed with CREST scleroderma in January of 2003. I also have autoimmune hepatitis (AIH), which was confirmed in January 2001, and I have fibromyalgia.
I am very selective who I tell about my diseases, I guess because many people have never heard of some of them and right away when someone looks at you, you just know in the back of your mind, they are thinking, "Is she contagious?" Since most of my problems are autoimmune related, some people will jump to the conclusion that I have AIDS, which is far from the truth.
When I do tell someone about my AIH, right away they think I have regular hepatitis, which can be contagious, but not just by casual contact. AIH is when the body's own immune system attacks the liver. There is no cure, but it is treatable. Some of the symptoms of AIH are the same as symptoms of CREST scleroderma.
I also have other health problems besides the ones listed above, such as degenerative disc disease, osteoarthritis, anxiety/depression/panic disorder, irritable bowel, to mention a few. I do seek help with all my diseases, but sometimes, it just gets so overwhelming. It feels like I am always at a doctor's office.
I think the thing that I find the hardest about CREST is the itching that I am still getting and all the fatigue because it is dealing with your immune system. I get joint and muscle pain, too. The Raynaud's, which goes along with the CREST, is no walk in the park, either. Winter is bad for me because of the cold, but summer can be too, because of air conditioning. I have found that over the last two years, it is very hard for me to take the heat; I get physically sick and agitated from it.
I am currently seeking the help of a dermatologist for my itching. I just started taking light treatments a few weeks ago. I am to take them at least three times weekly. I just had a dermatologist appointment last week, and told her that I did not think they were helping at all, but she asked me to give them another chance and keep coming for three more weeks until my next appointment.
The past few days, I think I itch a little less, but now my skin is getting drier than usual. I cannot take any pills for the itching with the exception of Clarinex, because of my liver problems. Medications can really do a number on the liver if you are not careful and checked all the time.
The CREST affects my right hand more than the left. It constantly looks swollen and it is getting harder and harder for me to even write a check out. I am also getting more pain in my hands and wrists.
I find it very difficult to even keep up with my housework anymore. My husband tries to help out, but he works very long hours. If I am having a good day and do more than I know I should, I suffer for the next few days, sometimes weeks, especially with the fatigue.
My skin starts itching all over, then these little bumps appear and they still itch to no end. I even scratch until I bleed in my sleep. My husband says I look like a child with the chicken pox. There was a point where they thought I might even have systemic lupus erythematosus (SLE), but my rheumatologist tells me it can take a long time to get a correct diagnosis on that. My skin feels tight at times, but not all the time, and I think it is because I am not that advanced yet with the disease. I have red dots on my hands, face and mostly my nose.
I cannot even do dishes without wearing gloves. I have to wear gloves for anything that I might use around the house, like furniture polish or window cleaner, or my fingertips will get worse. So far I have not had any ulcers on my fingertips, but they do get cracked and sore. I find that using a good moisturizer like Eucerin up to three times daily is the best thing for me, more for my hands because of washing them so often. I do not use any antibacterial soap anymore. I use Dove soap. I think it works just as good as Aveeno bath and body wash.
I just wish there was something that could be given for the fatigue that is caused by these autoimmune diseases. The joint pain can get pretty bad too, but when really needed, at least you can take a pain pill for that. And I am still trying to find answers as to what could really help stop the itching as it drives me crazy.
That is about it for now. I will keep updated on my progress with the light treatments.
Since my orginal story back in May a lot of things have changed for me. At that time, I was in the process of going for 'light treatments' for my skin due to all the itching. I gave it additional time like my dermotologist had asked, and it did not help. I had my dermotolgist completly stumped, she said, this is not from your scleroderma. You would have patches from morphea, as I am trying to tell them, "I do not have Morphea, I have Systemic Scleroderma with CREST."
Needless to say, they had never heard of that. They even took biopsies which showed nothing, and went as far as sending me to Hershey Medical Center in Pennsylvania, which is a two and a half hour drive for me.
I was assured by my dermotologist in my area that they would do different testing for my skin, but they did nothing except look at my skin. They kept asking me if I had thyroid problems and if it was checked lately. I told them, yes, my thyroid has been checked and it basically comes out normal, sometimes it is off a little, but still within normal ranges.
The doctor at Hershey Medical prescribed two different creams for me, one being a steroid cream, and both of which they use for psoriasis. I do not have psoriasis, but I must admit, the creams have helped to the point where the itching became bearable.
There was a time, when one Sunday, I was sitting with my husband, Don, and I thought I was going to loose it mentally, the itching just would not stop, I itched all over from top to bottom. Before the trip to Hershey Medical, I spent so much money on different prescriptions and over the counter creams, I could have started my own pharmacy. Before going to Hershey Medical, I saw my rheumatologist, Dr. Miller, of my itching. He agreed it is part of the scleroderma, and he said there is not much they can do for it but try to work with the dermatologist and see if they can help you at all. He said the itching could go on for the first couple of years. He also did another pulmonary function test and kidney labs. My PFT came back with a slight decline from the last time, but he wasn't overly concerned yet. My kidney function tests were basically within normal range.
I am at kind of at a loss with the scleroderma, because certain drugs they prescribe for it, would be too hard on my liver, and I already have Autoimmune Hepatitis. Dr. Miller did tell me that when the time comes, he will have to use more aggressive therapy, which I took to mean, some type of IV treatment, that will bypass the liver more easily. I already take a drug called Imuran which is an immune system suppressant drug for my AIH, which they are hoping will also help with the scleroderma.
In the past few months, I am feeling more fatigued, more joint pain, with my hands really bothering me as far as being able to use them like I once did. I have also noticed on occasion, that at times my swallowing is becoming affected, not all the time, just here and there. The pain and discomfort I am currently experiencing is really getting to me. I can remember what I could do a year ago, and now it even hurts to clean a mirror or window with my hands. I do wear gloves when my hands touch anything besides regular soap and water, such as chemicals or anything like that.
We did not have a really bad summer as far as heat, but when I was outside the slightest bit would set off my itching, and actually make me feel nauseous and generally miserable, but then I had to be careful inside because of air conditioning because of the Raynaud's.
My hands are more swollen than they were, and I also have more skin tightening, especially in the area of the wrist to elbow.
This is a disease that if you don't have a support group online or something, you will be totally lost due to the fact the doctors do not even know everything that can or will happen to you.
My primary care physician asked me if I had asked my rheumatologist for a prognosis. I said, "No, I forgot, but I really do not think it would do any good as everyone is different, and this disease is such a mystery at times."
The doctors seem like they do not want to say to much ahead of time about what might happen and what might not. I think it is due to the fact that they do not even know.
I also have lost my appetite a lot in the past months. It often takes all I have to get food into me. I usually do manage to eat a decent dinner, but up until that point I have no desire to eat, which is completely opposite of what I use to be like. I was just told yesterday that I look like I lost weight. My answer was, "I really do not know how much because I have not been to a doctor to get weighed since July." But within two weeks I will be getting weighed and then I will know. I always wanted to lose weight because I am overweight, but not this way.
I just wish there was something they could do for the fatigue and the pain without using the pain killers that knock me out.
Email withheld by request
Story posted 5-13-03
ISN Artist: Sherrill Knaggs
ISN Story Editor: Judith Devlin
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