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willow

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About willow

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    Bronze Member

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    WA
  1. Thank you, Jeannie. I was sad to see no scleroderma experts listed for the state of Washington. I'm surprised there are none in all of Seattle, you would think there would be someone. The front desk at my rheumatologist's office did not know of someone in particular they recommend, either, which I have to say surprises me.
  2. willow

    Pain

    Friends, what do you do when the pain is driving you to tears and you can't sleep? I have this piercing pain in the ends of my fingers and toes and my pain meds are having very little effect on it. I feel like there is a thumbscrew on my big toenail and it just keeps tightening down more and more. This has been going on with no letup for many days now. I went to bed exhausted earlier tonight but I finally just got back up because laying there just makes me more aware of how BAD it hurts and nothing to take my mind off of it. I just don't know what to do with myself.
  3. Hi Shelley, thank you! I do have to take pain meds and they do definitely cause issues, but I need them, so what to do? The doctor had me taking a senna laxative with them but that was not helping so switched me to the Polyethylene Glycol stuff. I am in a quandary about this, if I don't take anything for pain I am ready to go out of my mind. I am really sensitive to medications and have tried so many and not been able to take them. By the way, does anyone know, is simethicone ok for sclero guts? I had some oatmeal for dinner and it was so good! but now I can feel my stomach bloating up.
  4. I have been reading the medical articles and it seems like when you have the dysmotility issue less fiber might be better? Or no? I have always eaten a high fiber diet and it just doesn't seem to be agreeing with me anymore, also anything hard to digest like fats and proteins I am having a hard time with, I have no appetite for them. After my last bout in the E.R. I went to a liquid diet and then I added some baby food to try and get a little protein and so on, but even on that I still am having a hard time. I saw a new doctor today (in the process of trying to find a primary care doctor in my new city) and she was adamant I need to get a lot of fiber and fat in my diet to "slow my digestion down." I am scared to try this because I'm really sick of the E.R. and throwing up. Is it just trial and error to see which diet works best? Or is there some kind of method? There seems like disagreement even in different articles I am reading. Secondly, how do you find a gastroenterologist who is familiar with scleroderma? I am finding that even now that I have a diagnosis, providers still have no idea what is wrong with me or how to treat me. This is kind of disappointing.
  5. Linda, I will be thinking about you and hope your procedure goes well and without too much discomfort and you recover quickly! And they find the information they need to help you. My rheumatologist says I am going to need a complete G.I. workup and I am not looking forward to it.
  6. Hello friends, I ended up in the emergency room for the second time in a month yesterday for stomach pain and violent vomiting. They gave me IV fluids and several drugs to stop the vomiting. I was also shivering and shaking as if I was freezing, though I was not. Has that happened to any of you? They always ask if I am cold and I say no, I do not know why I am shaking like this! I had terrible pain in my spine, neck and head, it felt like so much pressure in my head. My blood pressure was dropping really low, they thought from being dehydrated maybe. I had no fever though, I never get a fever. It is kind of scary because even the doctors at the hospital don't seem to know much about this disease or what to do for it. They almost gave me a drug that stops intestinal contractions and I asked if that was a good idea for scleroderma, so they checked and changed their minds and gave me one that helped food move through faster instead. I'm not sure if this is a pseudo-blockage? All I know is my guts seem to have just stopped working. After some weeks my body just goes nuts trying to empty itself out? Today I am glad to be home and finally strong enough to get up and to feel hungry and eat again, even if just baby food.
  7. Can scleroderma cause tightness around the spine that leads to misalignment and pain? Since the onset of my other symptoms I have also developed a tightness around the spine in my neck. My doctor said he could see that the spine was being pulled out of alignment by the tight muscles in my xray. Can this be due to the scleroderma? Or does it only attack the outer layer of skin?
  8. willow

    Hello

    Hello Kaykay, I wasn't aware of skin involvement until just the past year but now that I know about scleroderma, I can see that my skin was kind of different. It has always been kind of tight and shiny. How about you? How did the disease creep up on you?
  9. willow

    Hello

    Not sure if I am doing the replying and so on right but bear with me as I learn! Thank you so much for your kind welcome everyone! You just don't know what it means to me. Over the past couple years I have really gotten out of touch because it is just so uncomfortable and fatiguing to go out and do things. I am hoping that with treatment I will regain strength enough to get out and do some things again. Right now it takes me all day to recover from a trip to the grocery store. I can't tell you what it means to have found people who understand what I am living with and who I can connect with from right here at home. Bless you all.
  10. Hi, I have just found this forum. I've been reading the articles at sclero.org and learning so much. I was just diagnosed with limited scleroderma a week ago. It's been a long confusing road getting here. As I am looking back I am really not sure exactly when I first had the first symptoms. I had a bout of leg pain 15 years ago and was told I had fibromyalgia. I had a change in my digestion probably 10yrs ago. In 2001 I developed Hashimoto's thyroiditis and became really ill. My doctor felt I had a 2nd autoimmune disease but it wasn't clear what it was. After a year bedridden, in unbearable pain I suddenly recovered and picked back up with my life. No one knew what it was and I just hoped whatever it was, it was over. I was healthy and active until 2007 when I developed heart pain and arrhythmia. I had a stress test with ultrasound, showed mitral valve prolapse. 5 months later I developed really severe leg pain, fatigue, aching joints, shortness of breath, constant nausea, loss of appetite and weight loss. My new doctor thought scleroderma and sent me to rheumatologist but he said impossible because blood test showed no inflammation. I improved some in the next months, the leg pain faded but not the nausea. Then last winter my feet became very painful and swollen, difficult to stand or walk on. Podiatrist 2 thought connective tissue disease but I thought no blood test still showed no inflammation. Then in spring, it hit my hands. First they were all itchy, then swelled then painful. So I finally went to the rheumatologist my podiatrist wanted me to see. He was very thorough and tested me for antibodies, which I have. He says I have limited scleroderma and put me on plaquenil, which I started today. I have mixed feelings- relief at finding the explanation and having found a doctor who is taking care of me, but of course, discouraged and frightened by the diagnosis. A friend of a friend died from the serious form of the disease a few years ago. I have been told for so long that I was just imagining the sensations I was feeling because I had anxiety, that I had stopped trusting my own perceptions. Now it is very strange to find out it is all very real. It is good to find this place and people who understand. Thank you for putting up this site. I hope this wasn't too long. I don't usally write so much because the ends of my fingers hurt!
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