On May 27th, 2005, I went swimming and this was the first time I noticed tightness in my arms and shoulders. Within a month, it had spread to my neck, chest and back and it was at this point I went see my doctor. At first look, my doctor thought I might have scleroderma, but after doing blood work, they said my tests came back negative. He then took a couple of biopsies from my back and it was from these results I was diagnosed with localized (morphea) scleroderma.
Spending hours upon hours second guessing the results and searching relentlessly on the internet for answers, it was all starting to take a toll on me mentally. And now I was meeting with a rheumatologist who told me I have scleroderma-like symptoms but not the actual scleroderma. Yet he could not tell me what I really had. So on to more blood tests. This time to look into the condition of my muscles. After the results came back this time, he settled on the original thought that I have localized scleroderma, but he just didn't understand why it was so widespread (basically now from the waist up). At this point, he was not able to help with my situation and sent me on to a dermatologist. It is now the end of August, 2005 and the condition appears to be spreading through my legs down to my feet and I am starting to have a tingly feeling throughout. In addition, swallowing food along with putting my contacts in is getting more difficult. To confuse things even more, my conditions seem to come in waves. One week I'll feel like I am getting better, another couple of weeks later I'll feel like things are getting worse. These “ebbs and flows” take a toll on me mentally as well.
The dermatologist wrote a prescription for the antibiotic minocycline, which I took for three months. It seemed to help the first couple of days, but not much more after that. I also had a swallow study performed to determine why I had difficulty swallowing food. Nothing out of the ordinary came from these results, so they sent me on to a speech therapist in the hopes that I could train my throat muscles to “properly” swallow my food. In the meantime, I am still spending tons of time on the internet trying to figure out what is wrong. I am also logging in all my dietary intake and physical activities along with tracking my stress levels on a daily basis. People are starting to tell me I look skinny (and I was already kind of thin to begin with). Now mid-September, the doctor wants me to come in and do more blood work and check on thyroid, arthritis and ANA condition. A couple of weeks later, I met again with my general physician and took more blood tests – still nothing.
Now October 2005, the rheumatologist suggests I try another drug Methotrexate or PUVA light-treatment. At the same time, the dermatologist suggests another biopsy and then start trying Narrowband UVB light treatment. I have a difficult time making a decision at this point due to all of the different choices and the fact that nothing seems to be working. The problem seems to also be getting deeper into my ligaments and tendons. My flexibility and range of motion is completely limited. One day I also started getting light headed from irregular heart beats. There were also nights where I woke up lying in sweat, and this is during wintertime. My sense of smell and taste were also deteriorating. At this point I had pretty much given up.
It was now mid-November and I was completely frustrated, not to mention depressed. People were suggesting I get a second opinion, so I did. I met with a new doctor a couple of weeks later, and literally within ten minutes of meeting with him, he was 95% confident I had something called scleredema, not scleroderma, but he wanted to take another biopsy to make sure. So my new dermatologist took more biopsies and wanted me to also get tested for Lyme Disease. Skin biopsies came back and confirmed scleredema. That was mid-March 2006, about a year after this began, and at that point we seemed to have finally diagnosed the problem, so it was just a matter of treating it.
A common cause of scleredema is a strep infection. Other causes could be diabetes or abnormal levels of immunoglobulin in the blood. So the doctor immediately tested me for strep, which meant more blood tests. The simple mouth swab test came back negative, but the blood test results came back a week later and confirmed it. Scleredema, from my limited understanding, is a very rare condition resulting from the body's abnormal reaction and excessive deposit of collagen within the affected tissues, thereby causing thickened skin and tightness. From my online research, I have read somewhere that there are only about three hundred or so documented cases of this condition.
I have to this day been very curious and confused that after all of the blood work done, they never checked for any type of infection. Nonetheless, my new doctor said I need to start a years worth of penicillin injections (Bicillin) which meant that every twenty eight days I get two big shots, one in each butt cheek. Within two weeks I felt much better. After about four or five months, I seem to be going through a cycle. That is that I'll feel good for the first couple of weeks, and then go backwards again. The doctor said not to worry and that it would get better soon.
By mid-February 2007, I was still taking Bicillin injections with a couple of more blood tests in-between to see if the strep had gone away yet. A month later the doctor then suggested I take another stronger antibiotic called Rifampin. A couple of days later I started to get really sick and stopped taking the stuff. The doctor then put me on Prednisone for a couple of weeks, then started up the Rifampin again, this time with no side-effects. In June, the doctor suggested I stop with the Rifampin and Bicillin and substitute with Azithromycin and Plaquenil.
In September, there was still no change and the doctor suggested I swap out the Azithromycin with Methotrexate. Over the last year and a half, my general overall condition had not changed and I was so beat down with the whole thing. During the course of the last year, my new rheumatologist had discussions with the local infectious disease doctor, but I had not met with him personally myself. I decided it was time to meet him. In late September, after meeting with this new doctor, he was surprised to hear that I had never taken the simple standard oral dose Penicillin (or Amoxicillin) and thought it wouldn't hurt to try. So I did.
By October, the tingly feeling was pretty much gone, but I still had the tight stiff feeling in my skin. In January I had more blood tests done and discovered that the strep had basically gone away! Things were definitely feeling better by this time. I felt like I was about 80% back to normal, but it was just the tightness in my skin that wouldn't go away.
In May of 2008, I was approved for, and started Narrowband UVB treatment. Two months later I was told that five minutes of this treatment was approximately equal to fifteen minutes of laying out in the sun. So I thought natural sunlight was better for me and stopped with the UVB.
Today, September 28th, 2008, as I am writing this, I continue to feel better, slowly but surely and my “recovery” is consistent with the research that says the symptoms typically go away after about one year or so. Part of me thinks that there will always be a little residual effect and tightness in my skin, but I am still much better off than I was. I am also extremely lucky that I was able to not only find an accurate diagnosis, but also receive effective treatment. Today, I do my best to do cardio-exercise and think that the extra blood circulation will help over time. I have written this in the hopes that someone who is unlucky enough to have this condition is lucky enough to read this and get the help they need.
Story edited 10-02-08 JTD
Story posted 10-07-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Difficult Diagnosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: