I went through a period of time where things were semi-okay then things started to happen again when I turned twenty-one. I would have symptom free periods of flares, they would come and go.
Now it is a different story, I have been to at least fourteen different rheumatologists and finally found one who I think is going to help me. I also have an orthopedic doctor working with her. I recently had a knee biopsy and am still awaiting the results.
It is believed that I do have an autoimmune disease they are not sure if it is systemic or not, but I know what I live through on a daily basis. I suffer extreme bouts of psychosis to the point where I want to be institutionalized for my own safety. I am not sure if it is the side effects of all the medications or not.
I tried to go without any medications but it was not going to work that way. I slept all the time and when I was awake I was not well, in the physical sense. My symptoms changed in the beginning but now they are the same for the most part.
I do have Raynaud's phenomenon. I have had this since I was twelve years old. I was also born with a sub-mucous cleft palate which they did not discover until I was three years old. I have stiffness in all joints; my arms and legs feel heavy; I have trouble walking up and down stairs, my eyes feel heavy all the time and I have a hard time concentrating on anything.
I always have pain in my clavicle and in my right rib near my kidneys. I have pain whenever I eat anything. It does not matter what, I actually get the pain when I drink stuff too. It is kind of in the back of my ribs. I feel constant tightening of my skin especially in my hands and sometimes my feet. I also have a hard time moving my muscles in my cheek and find it hard to smile sometimes (not psychological.)
My skin on my hands gets taut and shiny, my fingertips hurt all the time making it hard for me to work now. I used to be a data entry operator.
I am at a loss, but I try to be positive. Sometimes it is hard because every day is different and I try not to think about it. When it is too hard to deal with I just hide from everyone and rest until it passes.
I know what I have. I am just waiting for the doctors to figure it out. It has been grueling, I won't lie. My mother is the one who goes with me on every appointment I go to.
I try to think of the positive, but if that does not work I look at other things such as crafts to get me through the day.
I hope my story has been helpful to some of you out there and keep a positive mind because someday you will get the answer you are looking for. And sorry I am mentioning god, it is the right to freedom of speech, even though I get mad at him I really do know he is helping me the best way he knows how.
~ Update 06-21-06 ~
I have been taking medicines for this disease, whatever UCTD is, for about the last two and half months and so far I feel that it is not helping. I am taking Plaquenil and have felt rapid changes especially in my hands. It feels like rheumatoid arthritis, plus skin tightening, plus Raynaud's but with no skin color changes except for mild redness and swelling. My hands hurt like hell and my arms are sore, I cannot lift them above my head.
Even doing water aerobics is difficult. I feel like I ran a marathon and it is not doing me a bit of good.
I just started a new antidepressant which has me up at night with nightmares. I am not sure if it is helping me at all.
I just also found out I have iron deficiency anemia. I have not had a redraw but will post an update with the information on that. My platelets were low, not bad, but low enough to cause anemia.
I am scared that I may have to have bone marrow aspiration for confirmation that I do not have cancer. Better safe than sorry.
I am up with nightmares right now. I have a sleep study scheduled for Saturday night and will keep you updated on what happens with that. I hope they can help me resolve this issue.
Thanks for listening. We all have bad days but please do not let this bit of negativity bring you down. It does not help me and it will not help you. Positive thinking is good for the soul.
Email: [email protected]
Story edited 03-06-06 JTD
Story posted 04-21-06 SLE
Story edited 04-28-06 SLE
Update edited 06-21-06 JTD
Update posted 07-12-06 SLE
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Story Editor: Judith Thompson Devlin
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