It was tough getting through the music scales with my voice coach. I wanted to pursue a singing career for as long as I can remember, but it's very tough to sing when you have very little moisture in your mouth. My coach said I had a great voice, but it was very hoarse sounding. I even went to Nashville a few times, recorded some songs, but was always held back by this dryness in my throat.
Three years ago, I got this strange rash on my feet. I went to a dermatologist and he took a biopsy and discovered I had morphea, but the other tests were negative.
He did more blood work and discovered I had overlap syndrome, with systemic lupus erythematosus (SLE), CREST scleroderma, osteoarthritis, Raynaud's, irritable bowel syndrome (IBS), Sjögren's, and I already had hypothyroidism.
The chest pain was getting worse so the rheumatologist suggested I see a cardiologist. He put me through all sorts of tests and said I had minimal heart disease but this was not causing the chest pain.
I went to a few different gastroenterologists, and had more tests that came back negative. It's been very strange. I'll have pain some days, yet other days I feel fine.
Lately my throat, esophagus, stomach and sternum area have been very painful. I am also having pain in my right ear and tempero-mandibular joint (TMJ). It has been difficult to open my mouth at times. I have had two endoscopes in the past two years, which came back negative.
I cannot figure it out. Where is this pain coming from? I went back to see my rheumatologist, and he said he was sure the scleroderma was in my gastrointestinal tract. I asked him why it was not showing up on the scope and he said you have to catch scleroderma at the right time. So who knows?
Next week I am scheduled to see yet another gastroenterologist. We will see what happens. I get very frustrated with all this. I think everyone thinks I am imagining all of it. I just want to find out what's going on and get on with life. It is very hard to plan anything when you never know how you are going to feel from one day to the next.
I would love to hear from anyone who is as frustrated as I am, and has any helpful tips on how to cope with everything.
I went to see another gastroenterologist last Friday, and he performed another endoscope. He discovered scleroderma in my esophagus, as well as a hiatal hernia. This baffles me as the hiatal hernia did not show up on the other two endoscopes that I have had done in the past two years. I realize it is difficult to detect scleroderma in the esophagus, but not a hiatal hernia.
I forgot to tell you my age, I do not know if that is important or not, but I am forty-nine, and feel ninety-nine! Oh well, that is life I guess, take it or leave it. At least now I know why I am having this chest pain. When your body has so many different things going on, it is sometimes difficult to pinpoint the cause.
My last update was May 14, 2003. Since then I have had a laparoscopy and discovered I have severe endometriosis and scleroderma covering the inner lining of my abdomen. I have to have a complete hysterectomy. When they put me under for the laparoscopy, they had a tough time getting the tube down my throat. My rheumatologist says it is because of the scleroderma that they had a tough time with that. My rheumatologist says they cannot do much once the skin thickening starts, so I guess we will just see what happens next.
I went to see my rheumatologist yesterday. At first he had told me I had overlap syndrome but now he says I have just CREST scleroderma.
After my complete hysterectomy, the doctors discovered I had severe endometriosis and scleroderma all over my abdominal wall.
I guess it makes it easier when you fall into one illness category. My rheumatologist gave me a cortisone shot yesterday for the body pain and asked me if I would sign up for the consent form for research. I guess that is a good thing to be a part of these groups.
After my complete hysterectomy, I went through a rough time, between dealing with chest pain and migraines, I was in pretty bad shape. Plus I was having stomach pain. I did not know which part of my body hurt more at that time. I went through a lot of tests and they knew I had motility problems. The scleroderma was in my esophagus and my stomach plus all over my abdominal wall which they found out when they did my hysterectomy.
They tried many different medicines on me for the chest and stomach pain, but nothing seemed to work. I decided I had had enough and I went to UCLA in Los Angeles. This is a very large and very cold place, but thank heavens I went there. I had heard that they do a lot of research on scleroderma and also for migraines.
I saw a gastroenterologist and a neurologist there and they put me on some medications no one else had tried. Within a few weeks I could not believe the difference. I felt like a new person. After a few months I was basically almost symptom free.
In the last couple of weeks I feel the symptoms slowly coming back. My body pain is really bad in the mornings. My headaches are off and on. And I had terrible chest pain two days ago. I did not know what to do. The pain went into my back shoulder blade area from one side to the other and lasted a couple of days and then left. I do not know what that was all about.
So to put it bluntly, I think I am headed right back where I started from. For me it is the not knowing what is coming next. I read all of the other stories on this web site and I feel so bad for everyone who is going through this. This is a very comforting place to come for support. We can all feel a special connection that we cannot get from our doctors. I wish all of you the best. I think about you all everyday. Take care.
I just updated my story last week. But recently I have been having a lot of pain in my left index finger. There is a lot of swelling and it feels very hard and hot. I went to to see a doctor and he said he was pretty sure it was the scleroderma going into my fingers. He called my rheumatologist down in L.A. and he suggested he give me a steroid injection until I see him on April 8th. So we will see what happens next week.
I'm still going through the migraines and terrible body pain. In the morning, I can barely walk out to the kitchen. Once I take my meds, I'm okay for a few hours. I try to get everything done early, if I don't have a migraine that particular day.
I would like to stop taking some of the meds I'm on, because they don't seem to be helping. I'm going to see my rheumatologist this Friday, and at the end of the month, I'm going to see my gastroenterologist and my gynecologist. This chest pain is bad, and so is the stomach pain.
I feel like, I'm on a rollercoaster, since I never know what's in store for me the next day. I just hope all of you out there with scleroderma are doing okay, I wish you all the best. Take care.
Hello, to all of my fellow scleroderma friends, and also any of you with other autoimmune diseases. I hope you are all doing well, and focusing on all of the positive things in life.
Since I last updated my story, I have been doing quite well. I was finally referred to a pain clinic in Los Angeles, CA. and to a wonderful neurologist, Dr. Ernestine Saxton, in Century City. I went to see her about three months ago. At first her and Dr. Wallace thought it might be the Raynaud's causing the migraines so they put me on Norvasc, but the headaches continued. So I went back to Dr. Saxton and she put me on Lyrica two to three times a day. Within just a few days I started to get relief, I was so relieved, I thought I have finally been sent an angel to help me and that angel was Dr. Saxton. The Lyrica continues to stop the migraines.
I still have bad body pain and suffer with the Raynaud's, but to be relieved of those migraines was just amazing to say the least. So today I feel so fortunate that I have been helped in so many ways. There are ways to relieve some of our symptoms, but we all continue to accept other symptoms that just cannot seemed to be helped. But I look at it this way, there are so many of you that are far worse off than I am, and I wish everyone here could be relieved of their suffering.
I guess we all have to hope that one day they will find a cure for us. And I know they have incredible doctors out there doing just that. I would like to wish all of you the very best and please feel free to email me anytime. I will always be there for a friend in need.
I am so sorry I have to update my story again so soon. I just thought, I cannot let you all think I am doing fine, when I am in pain again. I had about four months of tolerable pain. Then we moved up to Washington and the story begins.
First of all, we had to drive from the Mojave Desert in California with a cat, fighting,scratching and kicking, because he had to be put in a kennel. When we could not take the paws ripping at the cage door like there was a fire or who knows what, we decided to let him out of his kennel. Once we did that, he was as happy as a clam at high tide. So we stopped a couple of nights in motels, and by the way, we had to sneak Dido, our cat, in. Imagine trying to carry a twenty-five pound cat and a litter box into a motel room without being seen. No wonder I am stressed.
Anyway, we finally made it up here and arrived at our new home. It felt so good to smell that fresh forest air, a little chilly mind you and the rain here is enough to make a person lose it. So, back to my story. We arrived on February 7th. The carpets were supposed to be cleaned on the 8th and the furniture was to arrive on the 9th.
Well, first of all, we had to sleep on the floor through all of this and trust me, sleeping on a shower curtain on a wet carpet is not the way to go. Finally, the day the furniture was to arrive, they were suppose to be here at 8:00 A.M. and they arrived at 11:30 A.M. By this time I could hardly walk, because I have slept on a very hard wet floor, for two nights, so I was not a happy camper to begin with.
We had bought a new dining room table which was to be delivered that day at 3:00 P.M. We figured the movers would be gone by then and everything would work out fine, ya right! As the movers proceeded to bring in box after box, and also keep in mind we moved from a 2500 square foot house to a 1450 square foot house, so we had very little room to spare. As the boxes kept coming in, one right after the other, I thought to myself, how am I ever going to get through this. I was almost in tears.
It took one week to empty one hundred and forty boxes. You can only imagine, how a person with scleroderma, Raynaud's, arthritis, and fibromyalgia felt after all of this ordeal. All of my fingers had deep cracks in them, my body hurt so bad I could hardly stand it!
So as the days went by, I started to feel a little better, but not nearly as good as I did before the move. Finally it was time for me to go meet my new rheumatologist in Seattle, and again I lucked out. Come to find out he is an expert in scleroderma and an extremely nice person. He did a thorough exam and did the nail bed test and said he could definitely see signs of scleroderma there. Every part of my body he touched hurt. When they ask you, "Where does it hurt," they should really ask "Where doesn't it hurt?" Right?
He told me to increase my Norvasc. I had only taken the extra dose for two nights when the migraines hit, full force. I did not know what to do. I did not know if I should decrease the Norvasic or not. I tried using the Zomig migraine spray for two nights in a row and it did not work. Usually that migraine medicine works right away, but not anymore.
So, here I am, at almost 8:00 A.M., not looking forward to the day. First of all it is still raining. You are lucky if it stops long enough to see a neighbor or car or something. We are in a very quiet area.
My new rheumatologist was just about to leave on vacation when I was in to see him. He will be gone for one month. I will have to call them tomorrow and see what I should do. I hate being a pain around these doctors offices but what are you supposed to do?
So after almost two months of living in Washington, the disease has definitely come out of remission, and, I think, it is here to stay for a while.
Well, I hope all of you have a better day than I am about to partake in. Take care.
Last time I updated my story, we had just moved up to Washington. Since then my husband and I were bored, he retired in February 2006, so we decided to work part time. We were hired on at a home improvement store.
After the two week training period, I got so sick I had to quit, which really annoyed me. I felt if I can handle this it would be great, give me something to do, a few extra dollars in my pocket. No such luck.
We had gone up to my mom's for our two days off. It started with me having a Grande Mocha Coffee at a coffee shop. I started to get really bad pains in my stomach, then the migraine started and of course then came the major body pain. I was sick the two days I was off. I had to phone my manager and tell him I could not come in to work because I was so sick.
In the beginning, I told the woman who hired me that I have scleroderma and it is really hard for me to know from day to day how I am going to feel. She said no problem, we'll see how it goes.
I was really upset I had to quit. I will tell you one thing, I was so impressed that they had even given me the chance to try and work there. My husband is still working there full time and really likes it. I am stuck at home feeling awful daily, and very lonely. We live out in the country so we have to drive at least thirty minutes to everything, which is okay because it is really pretty here.
I am going in to see my rheumatologist on October 24th, thank goodness. I have been feeling so rotten, this body pain is really bad. It is okay for a few hours after I take my meds in the morning, but as soon as those wear off, the pain is right back again.
The Raynaud's is bothering me a lot as well. I am not looking forward to the winter coming. The migraines are back again as well so I do not know what will be the next step. My doctor had talked about Methotrexate, so we will see. He did try to put me on Prednisone but I got severe acid reflux from that and felt twice as bad, so I was taken off of that after one week.
My rheumatologist did say last time I was there that because my body could not handle the Prednisone he knew the pain I was having could not be coming from the joints so it must be in the muscles. I know I am having pain in my joints, my knees and elbows hurt almost constantly. Well, we will see what he has to say next Tuesday.
Thanks for listening, I will keep you all posted. Take Care.
Webmaster's Note: Migraines can be a side effect of Norvasc, which is a calcium channel blocker medication for high blood pressure. As Jackie is doing, we should always consult our doctor for any new or troubling symptoms to determine whether it is a medication side effect or disease activity.
New email address needed 07-19-06 SLE
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Story posted 05-11-03
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Story update submitted 03-01-06
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