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Annette G: MCTD, Systemic Scleroderma, Chronic Kidney Disease, CFS, Fibromyalgia, Trigeminal Neuralgia, TMJ

I am now applying for my disability.

I have been diagnosed with fibromyalgia, arthritis, chronic fatigue (CFS), trigeminal neuralgia, and TMJ for ten years now. I was diagnosed with mixed connective tissue disease (MCTD) in 2003, and just this year diagnosed with scleroderma.

I am forty-two years old. I've been married for eighteen years to a wonderful man. We have two daughters who are eleven and fourteen. I am a Registered Nurse and I have always worked full-time and gone to school full-time until recently. I am now applying for my disability. What a paper trail.

I have strong faith and believe that "With God, all things are possible." I have always lived by that saying. I have numerous doctors who I am very blessed to have.

This year my kidneys have begun to fail, my heart is stiffening along with the left ventricle not functioning properly, and my lungs are stiffening. I am taking an ace inhibitor for my kidneys, along with a diuretic for high blood pressure, which I have had for a year now. I am returning to my lung doctor at end of this month to obtain results from three CT scans and a right heart catheter and to talk about treatment options.

If cleared by my lung doctor, my rheumatologist says that we will begin an immunosuppressive for my scleroderma in November and a medicine for Sjogren's to aid with saliva secretion. My Raynaud's has worsened to the extent of wearing gloves and wearing jackets in the summer. I am also taking an aspirin to see if this will help any, and if it doesn't, then we will add a calcium channel blocker.

A CT of my stomach showed thickening of my stomach wall so I have a gastroenterologist who is going to be performing upper and lower endoscopies in two weeks along with possibly stretching my esophagus as I have had difficulty swallowing and choking. I recently had my gall bladder removed which helped with the severe nausea and vomiting I had been having for a year. I have lost thirty pounds in the last year. Also, I take medications for GERD and for my slow GI motility which has helped. I will let you all know how that goes.

I am interested in speaking to others about your symptoms and want to know how the skin tightening feels for you. Do your fingers feel like they are pulling? My rheumatologist said that is the scleroderma. How does yours feel, not just on hands/fingers but also on face, feet, chest, arms, etc.?

What does it look like? Do you have swelling? What other symptoms do you have? What is your treatment?

Has anyone had to have tear duct plugs in their eyes due to Sjogren's? I have all four in and use prescription eye drops. I was taking plaquenil but it caused me to have retinopathy and thank goodness it was caught early and was reversed.

I live in a small town and do not know anyone with this disease. I am not interested in a support group now because I'm too tired all the time. I would love to correspond with others and could really use some internet friends.

People think that because I am a nurse I have all the answers. Well, guess what? I don't. I do a lot of reading but the autoimmune diseases are so complex, plus no one ever knows everything.

~ Update 02-01-06 ~

My results with my pulmonologist revealed I have interstitial and restrictive lung disease. My heart catheterization was negative for pulmonary hypertension (thank goodness!). My skin has been tightening on my hands, arms, chest, face, and now is affecting my upper abdomen and back. My kidney failure is still in the pre-dialysis stage and hopefully will stay there. The treatment has remained the same. The doctor said that is the only treatment there is.

My anemia is controlled by Procrit injections every two weeks at the dialysis center; however, due to the severe nausea and vomiting, my medicine had to be changed. I am now receiving Aranesp injections. I will receive my second one this week. So far, no nausea and vomiting. However, my migraines were elicited. The doctor said that if I am unable to tolerate either of these two medicines then I will have to receive blood transfusions every two weeks because those two injections are the only meds to treat that type of anemia. So, hopefully my body was just adjusting to the Aranesp.

My fluid pill had to be discontinued because my calcium level is so high. However, my body is breaking down my bone. I have lost two inches in my height in the last one and a half year. My rheumatologist made sure by x-ray that it was not caused by vertebral fractures. Then he performed some test which I had never heard of and it showed that my body is breaking down my bone. The treatment which we are going to discuss for that on my next visit is probably IV medicine every three months. He said I would just come to his office to receive it. (I hate to say this but I forgot the name of the medicine he told me).

I am now on an immunosuppressant called cellcept which has helped some especially with my hands. I continue on the aspirin for Raynaud's and was started on cardizem for the Raynaud's as well which has really helped.

However, due to trying to get my pulse under control, my pulmonologist had to discontinue my cardizem and he started me on a beta blocker called Toprol XL. My rheumatologist was not happy at all because the beta blocker can actually worsen the Raynaud's. He said if this happens we will have to do something. We will probably add cardizem back in near future.

First, he wants me to speak with my nephrologist and pulmonologist. My blood pressure is under control but my pulse for some unknown reason (which the doctors can not figure out) remains elevated. The normal is 60-80. My pulse range is 110-120s most days. Sometimes 130-140 (I really get scared then).

My thyroid test returned normal. My rheumatologist started me on the medicine for my Sjogren's Syndrome to increase my saliva production which I was so excited about. I am so tired of having a dried mouth and my gums bleeding and my teeth breaking. However, he felt that with my nausea and vomiting that this may also been a factor so he placed this medicine on hold for now.

My gastroenterologist, last week, says he has now maxed me out with my motility drugs to help with my digestion. You would not believe it but my food would remain in my system twelve hours or longer undigested (this is gross--but my vomit would look just like I had just eaten the food). I am taking Zelnorm 6mg. with all meals and taking Reglan 10mg. twice a day. I take Nexium for my GERD. I lost twelve pounds in one month so he said we gotta do something. I have been on this treatment for a week now and have not been nauseated so hopefully this is working.

The other major occurrence in my life occurred the first week of December which was receiving my first denial letter for my disability. So, I had to get a lawyer. My lawyer could not believe that I was denied. I am filing for the reconsideration; please keep me in your thoughts.

Next week I am going for my six month pulmonary tests and CT scan with follow-up pulmonologist visit to rule out pulmonary hypertension once again. I have had an increase in shortness of breath along with the fact that the doctor noticed a change in my pulmonary assessment.

I have noticed that my circulation has gotten worse. I had to buy an electric heater. I sleep in three pair of pajamas along with three pairs of socks. My memory and thought processes as far as communication goes is worse/ more difficult now. It is hard to explain. I have a difficult time keeping up with what I was going to talk about without writing short notes.

I have more stiffness, and my hands, arms, and legs are weaker now. Overall, I feel blessed because my family picks up the pieces where I leave off and they help me when I need the help. My husband and girls are doing well and they remain super supportive. My husband actually drives me to all of my doctors' appointments and sits with me in all of my doctors' appointments to make sure I understand and can remember or keep up with what the doctor is saying which is a tremendous help (that is what I am talking about regarding my thought process).

I will keep you posted as my life develops. I hope that all of the Scleroderma Friends out there just know that they are not in it alone. If you would ever like to e-mail me, just to have someone to talk to, I would love it. I could always use a friend.

Sclero Hugs,
Annette G.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

Judith 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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