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Nina: Fibromyalgia, Raynaud's, Limited Scleroderma/CREST

At times, I believe I have been ill my entire life.

Pins and Needles by Shelley EnszI am getting ready to turn sixty years old this year, 2008. At times, I believe I have been ill my entire life. When I think back to when I was much younger, in my teens, I can remember having terrible problems with my bowels (IBS). I was never officially diagnosed, just dealt with it, and knew that stress made matters worse.

When I entered my twenties, I had many problems with my menstrual period. Lots of very severe cramps etc. By the time I was thirty years old I was diagnosed with endometriosis. I had three miscarriages and by some blessing was able to have one healthy child. At age thirty two, I had a complete hysterectomy.

Things seemed to calm down for a while after that, but then in my late forties I started to have some pretty strange problems. To begin with I was having problems swallowing, again I thought it was stress. I went to a gastroenterologist who did some tests and told me I had something he called an 'esophageal web.' He performed a procedure that stretched the web and told me it may or may not come back. He also gave me pictures of my stomach and said I had a "watermelon belly." Those were his words, no explanation, just that I had a watermelon belly.

Fast forward to fifty years of age. I began having lots of problems with lethargy, extremely tired day and night. I had a sleep study done and was told I had restless leg syndrome which kept me from getting REM sleep. I was put on a medication used for seizures and my problem seemed to get better. I also began taking medication to help me sleep. I was going through some very stressful situations, including having my mother living with me. I also had to take custody of my two grandchildren, a ten month old grandson, and a two and a half-year-old granddaughter. I was single and working full time.

After about four years of this unbelievable stress, my mother passed away. This opened a hole in my very regimented schedule which caused me to become very off balance. I developed severe depression and needed to take a leave from my full time job.

I have always believed that everything happens for a reason. Therefore, I suppose, I took it in stride when my employer downsized and I was informed that my position was eliminated. Now I had to come to terms with unemployment on top of everything else.

I began having lots of different symptoms now. I had seen a rheumatologist who diagnosed me with fibromyalgia. At the same time I was seeing a therapist (counseling) who was convinced that I had something more than fibromyalgia. I went to another rheumatologist and began having more tests and tried several different medications. By this time, I had applied for Social Security Disability, thinking that my health was not ever going to get good enough to be able to work full time. This process took over two years before I was able to be declared disabled.

I spent the next several years taking care of my grandchildren and working on creating a non-profit organization that supports grandparents raising grandchildren. My symptoms got a little better although I was still dealing with extremely low energy levels.

On December 31, 1999, I was admitted to the hospital with a hemoglobin of 6.2. I had a ton of tests run and was told that I needed to see a gastroenterologist immediately. I had three transfusions and was released after three days. I went back to the same GI doctor that I had seen years earlier. I had an endoscopy and a colonoscopy. Nothing exceptional was revealed other than my "watermelon belly." I was put on Nexium and told that I should have another endoscopy in six months.

I am not exactly sure of the time frame of things after this, I only know that I was getting transfusions on a fairly regular basis for the next seven years. My hemoglobin only reached 10 at one time, and didn't stay there for very long. I was tired all of the time and always looked at by my primary care doctor like I was crazy. At one visit, I remember my primary care doctor saying how long have you had Raynaud's? I had no idea what she was talking about. She pointed to my hands and said, you have Raynaud's. Nothing more was ever said about that. I thought it was no big deal since she didn't offer any suggestions.

At some point I went to a new rheumatologist who told me that it appeared that I may have scleroderma, but that no significant symptoms appeared. Now, this is the interesting part; I do not think that my complete records were given to this doctor, either that or she just didn't pick up on the 'watermelon belly', the low hemoglobin, the fibromyalgia don't know. I guess I just assumed that my doctors would talk to one another. I told her that I had an aunt and an uncle who had lupus and she said that could be my problem, but that no outward symptoms were present. She did say that sometimes your condition could remain the same for years without anything new coming out. She also mentioned, on my last visit, that I had more markers for scleroderma than lupus.

In 2006, I got a part-time job working as an administrative assistant. The children were older and I had way too much time on my hands. I also was in a very serious situation financially. I work Monday, Tuesday, Wednesday and Thursday from 8 a.m. to 2 p.m. This worked out well for me for about a year and then I realized that it was just getting to be too much, I was too tired at the end of the week. I was very fortunate to have the opportunity to keep my job and just cut back by one day. Once a month I work on Thursdays in order to get the billing done.

Now in 2007, I began having lots of similar symptoms to when I was hospitalized with the 6.2 hemoglobin, even though I had continuous transfusions. At this time, I went to see my primary care doctor and complained of severe weakness, problems going up stairs and just overall tiredness. I will never forget her first asking me if I was taking my medication for depression and the telling me that my hemoglobin was at 7.9 and that my body had adjusted to that low level. She actually sent me home and told me to just rest.

The very next day I went to the emergency room and was told my hemoglobin was just six. A slew of doctors were in and out of my room all looking at me like I was some sort of monster. They all asked me a thousand questions, questions and more questions. I had several transfusions and could not eat because the doctors were not sure what they would eventually do to resolve my problem. That's when the surgeons came to see me. They said that I had to have a portion of my stomach removed. I needed to have that done quickly, to try to stop the bleeding in my stomach.

On January 9, 2008 I had a six-hour operation to remove the section of my stomach that was bleeding. All went well, with the exception of my congestive heart failure and problems with fluid in my lungs. After treatment for those problems, and nine additional days with no solid food, for a total of three weeks in the hospital, I was released. I had lost a total of thirty-seven pounds. I was told that I had one other very small spot near my esophagus that would have to be watched. But that from their point of view, I had a very successful procedure and I should be fine from there on.

Now, no one at this time mentioned anything about scleroderma or any connection to my 'watermelon belly.' That's when I decided to do a little research myself. And that is when I found ISN! The volume of reliable, informative, trusted information that I found on this site completely overwhelmed me. I was not ready for such a totally thorough site. I also found the wonderful chat forum for sharing thoughts and concerns with others diagnosed with scleroderma.

I recently went back to my rheumatologist and had more extensive tests done. I go back in two weeks for my results. I know one thing, this wonderful site is the best thing that has happened to me in the last ten years! Thank you for all of your dedicated work.

To Contact the Author

Email: [email protected]
Story edited 09-21-08 JTD
Story posted 10-09-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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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!

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