2011 Update: Dysautonomia with Inappropriate Sinus Tachycardia (IST)
I was told I have Undifferentiated Connective Tissue Disease (UCTD) almost two years ago. Looking back I now know I have had signs many years earlier. I have been teaching Aerobics for over twenty years and there were times I had to stop for a month or two for shortness of breath.
But in 2003, I had such a terrible experience. I had no quality of life. Not one doctor knew what I had. They were beginning to tell me it was in my head. I had shortness of breath just getting out of bed, I was nauseous, tired, nervous, bad stomach and digestive problems. I lost twenty pounds and had no diagnosis.
Finally, I was recommended to a rheumatologist in New York City, who finally diagnosed me with UCTD. He put me on Plaquenil (that suppresses the immune system) and after six weeks I was finally functioning again, but I never regained my stamina to teach aerobics again.
Then in 2004, a year almost to the day, I again got very ill. I was not taking the Plaquenil at the time and was put back on it. Again six weeks later I was functional, but again my stamina (working out) has diminished more. I have developed high blood pressure also. I try to work out when I can but its a 50/50 chance if I can do at least fifty percent of what I am used to. I still struggle with shortness of breath upon exertion. This really bothers me. I am now seeing a pulmonologist who is trying to help make sense of why I get that shortness of breath.
I went for two pulmonary stress tests and was told they are not sure how to interpret them because the numbers do not add up.
I feel so alone and am beginning to get discouraged. But I still keep trying to work out as best as I can. I don't know if its good or not. One part of me feels that if I stop I will get worse. But then again I don't know if I am doing more harm by working out. I try to accept that I have good days and bad ones.
This is a summary of my long and frustrating diagnosis of UCTD. What I would like to know is if anyone else was very active and is now having trouble with exertion and knows the cause of what is happening to them? Also I believe I have many symptoms of scleroderma, is it possible that I will develop it? Will I get so bad with the shortness of breath that I will someday need oxygen? Please let me know if you experienced these problems.
My hands turn blue (have turned white for over twenty years). They can burn and hurt in the middle of the night. They also go numb. Sometimes I just want to cut them off they hurt so much. That usually lasts about a month, then goes away and then comes back again.
I am beginning to get tired of going for test after test and not finding a specific reason for my symptoms. They don't do anything anyway. Thanks for listening to me. I am just so frustrated. I also find myself trying to explain to people that I really am sick. And the stupid remarks I get just frustrates me more. There is a headstone in one of my doctors' offices and it reads, "See I told you I was sick." I want that on my gravestone when and if I die from this soon.
~ Update 03-23-06 ~
It is now 2006, three years since I was diagnosed with UCTD. Last year I finally realized I had a disease. It was so hard to understand that I was really sick because I kept getting symptoms but no real concrete disease. I heard that's a good thing. But I do have many symptoms of scleroderma.
For the last two years I have been back on the plaquenil and have been feeling for the most part better. I can now function with day to day activities. I even can work full time now. But if I do too much I do get exhausted and I still cannot exert.
I have given up trying to find out a medical explanation for not being able to exert but have come up with my own diagnosis on that. I believe since fatigue is a major factor with those of us with UCTD/MCTD and when I do more than my body deems is enough the exhaustion and fatigue kick in. When I rest I do feel better. And actually sometimes I have no choice but to rest because I cannot do anything else. It is just so frustrating because I never know when too much is too much.
Each day is different. I have learned to scale down my activity and pick and choose what I need to do and what I can do, but sometimes it is not always that black and white.
I am thankful that I can do what I am doing right now because there were two times that I could barely walk without getting out of breath and of course so many other symptoms.
I do not know where this is going, but the only choice for us is to take each day as it is and if we have a good one be grateful. If we have a bad one just tell yourself tomorrow will be better.
~ Update 11-28-07 ~
Well, I did get worse before I got better. I started shots of methotrexate and finally got this disease under some control. I was able to get off it in March 2007.
One of my main symptoms turned out to be fatigue instead of shortness of breath. I did not realize that the fatigue was making me out of breath with exertion. I was able to go back to work, but would have to lay down before doing any little thing after that. I found that rest was my best friend.
In April 2007 I started to notice that I did not have to rest after work and found that I was able to go to the store and not feel so tired. That was the start. Since than I have been almost back to my old self. I can do so much more now without having to rest. I can even lift weights, something I thought I would never be able to do again. I still can get fatigued, but it takes so much more for that to happen to me. I am so excited and hope that I stay this way. I try not to stress and do rest anyway when I can. I eat right and exercise every day.
I just want everyone to know that there is hope and right now I am doing great. I have cut down on most of my medications and even decreased my blood pressure medication. I still take my plaquenil, but I need to see the rheumatologist and maybe he will take me off that also.
I will keep everyone posted and keep the faith. It happened to me and I believe it can happen to you. But remember it took me almost four years to get here.
~ Update 03-29-09 ~
Here it is March 29, 2009. For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better. I am now off the Plaquenil. Whew, I hated taking that. My medication intake has reduced drastically.
In October, we did some renovating in our home that caused a lot of dust. One day I came home from work and the dust from ripping up the tile was horrible. The next day I started breaking out with a rash all over my body. So of course I had to go to the dermatologist and was given a cream for my face, another one for my body and some medications to take internally. After two weeks it was finally gone.
You know, when I first got very ill in 2003, my symptoms were at their peek and my body was going haywire. At the time I was working in a building that was doing major renovations and I am very confident to say that this brought out a full blown case of my UCTD. The dust in that building was unbelievable but of course at the time I was clueless, along with many of the doctors I visited after that.
Okay, back to my update. On Super Bowl Sunday I went with a friend to a middle eastern restaurant, the food was great, but it really was very salty. Not really thinking because the wine was taking over, I ate and ate and ate anyway. The next day I started not feeling well, but thought it was the wine. On Tuesday, I was not feeling well. I checked my blood pressure and it was sky high so I increased my blood pressure medications and in a week felt better. I could not believe that eating salty food one day brought on my blood pressure to skyrocket and lasted about two weeks!
Even though I am doing much better, there are some symptoms that still remain like my Raynaud's, along with burning hands intermittently at night. I also get some gastrointestinal symptoms. Even though I have been tested for Celiac disease I think I have a real sensitivity to gluten. There are times when tasting just a cookie or cupcake sometimes causes my stomach to bloat, and the burps come and the nervous system kicks in. That is the worst. Eventually that passes, but it is one of the few things that I am left to deal with.
Lesson learned; never close your eyes on this disease, because you never know what your body will attack next. But with that said, I still am doing much better. I am now able to do things after work, whereas before, for over three years, when I came home from the office I had to lay right down and rest and had no choice. It was like my batteries were low and I could not do anything. I am back to working out and lifting weights and am up to about an hour and a half most days. But still there are days when I push my limit and the fatigue kicks in. I rest a little while and I am good to go. I am always concerned as to why the fatigue sets in sometimes and then other times I am fine. Does anyone have an answer?
But anyway, I do have a type A personality and really cannot relax until I go over my limit. It's just that I wish I had a meter to check each day so I know what my limit would be. So remember to treat each day as it is your last and don't sweat the small stuff. Love, laugh and do as many fun things as possible because in the end its our memory of the good times and fun we have that will keep us fighting this weird disease.
~ Update 06-30-11 ~
I just wanted to update everyone on my new diagnosis. I have read that my new diagnosis sometimes goes hand in hand with an autoimmune disorder.
On May 2, 2011, I finally found a diagnosis that explained a few of my symptoms that have been life altering and at the time even seemed to be life threatening to me.
The main symptoms that were very troubling to me was exercise intolerance, along with increased heart rate upon exertion. One day when these symptoms were particularly bad, I sat outside a hospital emergency room, afraid that I was having a heart attack. However, I did not really want to go inside. Finally, the symptoms subsided and I was able to go home.
Once again I decided to try to find out what was going on with me, so I sat down for the millionth time at my computer and told myself that I had to give it one good last college try. I googled my symptoms and I discovered dysautonomia, which is a dysfunction in the autonomic nervous symptom. Along with dysautonomia, I also read about inappropriate sinus tachycardia (IST). When reading the symptoms I immediately knew this is what I have. IST falls under the category of dysautonomia. Basically, it affects everything in the body that works automatically, such as heart rate, blood pressure, digestion, the ability to empty bladder, etc., most of which I have problems with.
Since I had not been feeling good, I had already made a cardiologist appointment three weeks prior to this and was going the very next day. When I was reading about dysautonomia, it mentioned that this disorder is usually not diagnosed and that by bringing it to your doctor's attention, a light bulb just might go off.
Well, lo and behold, it was so true! Upon bringing this disorder to his attention, he immediately reviewed my Holter monitor results from the previous year and referred me to an electrophysiologist, which is a cardiologist who specializes in the electrical system of the heart. He also changed my blood pressure medication and the very next day I felt an improvement in the regulation of my heart rate symptoms.
I have been to two electrophysiologists since and they have confirmed the diagnosis of IST. I guess you can say for me it was bittersweet. I was happy to finally have answers but saddened that I had to live for eight years with most doctors telling me I had anxiety, or, even worse, that it was all in my head.
True, the symptoms of the increased heart rate seemed to them like I was having a panic attack, but sadly they did not listen to me when I mentioned to them many times over that this happened to me during exertion most times, and just from getting up, or climbing up the stairs. It did not make sense to me that my heart rate would increase terribly and stay high for a duration after exertion.
I would like everyone to know that if you feel in your gut that the doctors are not right, keep searching until you find an answer. It may take years, but don't accept a diagnosis that does not make sense to you. I am glad I did not.
Story edited 06-22-05 JTD
Story posted 06-24-05 SLE
Story update edited 03-23-06 JTD
Story update posted 04-21-06 SLE
Story update edited 11-28-07 JTD
Story update posted 01-14-08 SLE
Story photo updated 07-17-09 SLE
Story update posted 07-06-11 SLE
Email address updated 07-06-11 SLE
Story Photo by Donna C.
Story Editor: Judith Devlin
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