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Charmaine C: Lichen Sclerosus and Scleroderma

The first thing he said was, "Well, I do not think it is a bruise."

Frilly Lavender Chrysanthemums for Charmaine by Sherrill Knaggs, ISN Artist My first symptom began as a little spot that looked like a purple bruise, the size of a quarter on the front top of my left leg.

After it had been there for a month, I asked my doctor if he thought this bruise, which would not go away, was anything to be concerned about. The first thing he said was, "Well, I do not think it is a bruise." This was a pretty big surprise to me. In response to further questions from me he indicated that he did not know what it was, and that maybe I should see a dermatologist.

I was being treated at the time for anal fissures, as well as what seemed, at the time, to be a yeast infection. Later, those two problems together would be diagnosed as lichen sclerosus, something I have often wondered if it had anything to do with the diagnosis of scleroderma.

Soon multiple spots developed across my abdomen, with a few stray ones on my forearms and more on the left leg. Today, nearly two years after the first spot showed up, the spots continue to spread. The older ones—some very large, hard ones that are the shape of a cucumber, on both of my hips—have become leathery, and the centers have turned ivory in color. In general, they do not bother me, but the largest one (which is about eight inches in length, and about three inches wide, on my hip) has become tender underneath.

Sometimes the skin's outermost layer feels flaky and dry, causing me to hope that they will just disappear by peeling off! That is not happening, but they are not very attractive, and I do dream about having clear skin again someday. I have not read enough about other people's experiences to know if that is even a possibility, but a girl can hope!

I have read in different places that this condition can appear to go into remission, anywhere from three to…drum roll…twenty-five years later. Three years sounds good, but twenty-five years makes me feel like this will be with me until I die, since I am fifty-two years old. I have read that even if the spots stop spreading, the damage done to the skin is permanent. This was not good news, so I have had to adjust my thinking and decide not to let any of it bother me. Sometimes it is difficult to ignore it.

I wear long sleeves, and I try to tan to camouflage the spots, but in general, I try not to think about them. Still, they are there, they are noticeable, and they continue to spread. I am heavy, and I used to not want people to see my bare abdomen since I felt self-conscious because of its largeness. Now, I run my hands over my middle as I lay in bed at night, remembering what the smooth unblemished skin looked like, and I wish I could have it back.

My clothing irritates my hips where it rests directly on the lumpy skin, but other than that I have not had terrible problems. I have been tested (lungs, heart, esophagus) to see if it was scleroderma (originally diagnosed by the dermatologist as morphea). The rheumatologist who ordered those tests and did a physical exam lists three versions of scleroderma that seem to be part of my overall condition: morphea, linear and diffuse. Although the testing on internal organs indicates that I have no damage to them, my doctor, a University of Michigan hospital doctor, has told me he cannot guarantee that those things will not happen in the future. For now I am thankful that I have no more severe damage internally and that it is only skin involvement.

I struggle with trying to discover why I got this. I have read things that indicate different causes, and have a list of things that I can relate to. I had a hip to hip "tummy tuck" surgery, with a repair of an underlying abdominal muscle in 1983. I took the diet drug combo, fen-phen, for far longer than the recommended six weeks. In fact, I took it for one year and this seems like a likely candidate, since there are people who have had damaged heart and lungs and the drugs were consequently removed from the market! I have also looked for environmental causes.

This seems weird to me that I have something which might be a reaction to some toxin, since I never even use spray cans because of my belief that they cause health problems, and I have also tried to avoid pesticides, antibiotics, and other pollutants.

I live in a trailer and I have PVC pipes, and I wonder and worry that this may have caused the problem. In fact, I worry about it so much, that I was trying to drink bottled water exclusively, but I have given that up. I even let my water from my pipes sit out to let the chlorine dissipate before I drink it. I still do this, but what is the point if I do not have to do it all the time?

I had incredible stress in my life several years before advent of the symptoms. It started with a fall at work, resulting in subsequent shoulder surgery for a torn rotator cuff, and then back problems (herniated discs) with such pain that I received multiple injections into the back (facet injections). These injections were a combination of a steroid and painkiller, and I also had an epidural injection. I had these treatments for a year. Then after that happened, I was in an auto accident in 1998 and had wrist surgery, open reduction with hardware, and surgery a year later to remove the hardware. My mother lived with me for a period from 1996, just before the shoulder surgery, to 1997, and then in March of 1998, while I was recovering from the injuries from the auto accident, my mother passed away. In 1996, I visited both my mother and my son, who was exhibiting signs of the same severe mental illness my mother had, in the psychiatric wards of a local hospital.

Ultimately, my son's illness progressed, and he committed suicide. This happened right after I found out that the post office would not reassign me (because of some loss of wrist mobility I asked to be reassigned to a job not requiring delivery duties and driving), but were going to force me to retire on a disability (my only disability at the time was not being able to bend my left wrist backwards). I had lost my son, which was an incredible tragedy, and incredibly painful, but now I also had no job, no income, and struggled to get public assistance as I looked for other work.

I do receive a small retirement pension, but it is insufficient to live on, and I do have a so-called "temporary" job with Manpower, and have been on the same assignment for nearly three years. In some ways I feel lucky to have any work at all, but in others, the instability of my circumstances (job could end any day), and not being too attractive to a prospective employer with the health issues (sometimes I think it is my age, or my weight, but I also think they must know about the scleroderma, although I try to hide with long sleeves, as it does not affect my abilities to type, file, etc. right now, although my hands are not able to completely close, I can type and file, keyboards are still within my range of motion), gets me down.

I worry about my hands eventually being totally immobile. I cannot make a fist, nor totally open the right hand, which makes me prone to drop things, and makes it difficult to hold a blow dryer, or even to take hold of things being handed to me at a drive-up window (banking, fast food, dry cleaning).

I would be very happy to hear from someone with similar symptoms and related issues. Thank you for allowing me to share some information about my experience with this very baffling condition.

~ Update 06-15-06 ~

After my first spot appeared on my upper left thigh, the morphea has continued to spread. It is all over my body except my face and calves. There are bare, unaffected spots down the center of my back, under my arms and my breasts are clear and normal.

The thickest areas, on each hip, have gradually starting cracking, peeling and bleeding. This is very painful, and I am unable to wear slacks, and even my underwear hurts. I work in an office at a desk, and even though my hands are somewhat curled, I type and do a desk job just fine. I have just purchased a large quantity of loose T-shirt style tent dresses which are more comfortable as they put no pressure on these "wounds."

I have been seen at the local hospital's wound clinic, and at one point I had an abscess in the center of my lower abdomen which created a large swelling, drained for a couple of months, and then left behind rippled, or indented skin, very coarse and "pebbly" feeling.

The skin on my left hip was so deteriorated that it looked just like raw hamburger, glistening and red, literally dripping fluid that soaked through my daily dressings, and which I watched well up (like tears) and form large drops of cloudy fluid which dripped down my side after my shower one morning. This fluid began soaking through the dressings and my clothing. I was horrified. Up until that point the area was so painful that I sought a consultation with a plastic surgeon or other surgeon who could remove this horrible, painful area. Oddly, when it erupted into this red mass, it hurt less, but was scary to look at. The dressings were turning a bright aqua green, and pseudomonas infection was suspected. However, within twenty-four hours of treatment with a sulfa ointment, the area was miraculously covered with a thin fragile skin covering. It had nearly completely stopped "weeping" and I was ecstatic. It was nearly totally healed except for maybe two or three tiny (diameter of a pencil) spots that oozed what the wound clinic nurse called a "honey-colored" matter.

These spots, which are both about hand-size, continue to peel on both hips, cracking, and peeling back like an onion, to reveal moist, raw areas underneath. Those areas will dry and harden up only to repeat the process endlessly. The wound clinic doctor is considering doing the excision I have asked for but told me I need to commit to losing twenty to forty pounds before she would tackle it as she needs some "looseness" in the area to have some skin to draw together after removing the damaged areas. She is currently doing further research on how morphea-affected skin will heal. I am more positive now that I have found someone willing to even consider this.

A friend in Chicago, based on my description of the color (she asked, "Is it the color of mint chocolate chip ice cream?" and it was), told me that it might be pseudomonas (something), and I believe she was right. My doctor wanted to culture it two days after they coated the area with the silvadene, but there was nothing there to culture, so it was not positively diagnosed.

I had been having frequent urinary tract infections, plus an ear infection, and then the raw weeping wounds. After getting this bacteria name, I looked it up on the Internet and found a plethora of information that showed a connection between all these things and that particular opportunistic bacteria. It is frequently contracted in a hospital setting, and I had had a surgery in August 2005. I am having another urinalysis done today, and hope to find out if it's still hanging on. I also saw a urologist a few months ago (maybe February or March), and he scoped the bladder, pronounced it "red" and together with the urine test results, put me on macrobid for ten days.

I also have lichen sclerosis, which causes itching and may be responsible for making the skin in the area fragile enough to split. However, after ten days on the antibiotic, it itched less, and since then has seemed to be recovering some of it's former elasticity or normal condition for that tissue. It is not completely gone, and I have clobetasol cream (ultra potent steroid) which I have been told is okay to use indefinitely for the LS, but only by pulse-dosing or using for three days out of month, and then not using again until the following month. It works, and side effects are avoided with this kind of use.

Take care all and wishing happy, pain-free days for all.

To Contact the Author

Charmaine C.
Email: [email protected]
Story edited 09-13-04
Story posted 09-22-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Diffuse
Lichen Sclerosus
Linear
Morphea
Scleroderma
What is Scleroderma Brochure

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Charmaine J: Lichen Sclerosus Atrophy (LSA)
 
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