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berrydahl

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About berrydahl

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    Washington
  1. Sorry to hear you are suffering so much with your fingers EOS. I have stuggled like most here with raynauds in my hands and feet. I recently saw a rhumetologist, specializing in the field of scleroderma at the Univeristy of Washington medical center in Dec. She put me on viagra and it has changed my life for the better. I haven't had to open a hand warmer packet since the day I got the pills. I still carry gloves and mittens with me, but I don't have to live in them. My hands used to go all white if I took off a mitten long enought to unlock my car door. The pills are expensive, but so far I can take a half a pill 3 times a day and be relatively comfortable. What you are going through is my biggest fear with raynauds, I hope you are better soon. Connie
  2. Hello All, I have been reading like crazy here trying to gain more understanding of the disease many of us share. I was told that I have systemic Scleroderma by my rheumatologist. Other than that he does not tell me much... My doctor has me taking multiple drugs and I wondered if any others out there are doing the same? From most of what I have read from previous posts most people seem to try one drug at a time. Currently I am taking Predisone, Naproxen, Plaquenil, and Arava (Lefflunomide) It seems excessive to me to be taking 3 different DMARDs. I also am taking medications for reflux and Raynauds. I have a doctors appointment on Wed and I am considering discontinuing some or all very soon. I guess I have not noticed any great improvement with pain and swelling that is mostly in my hands and feet. Every time I visit the doctor he seems to add some thing new for me to take and doesn't remove something from the list. I fear that I sound like a Maraca! Not to make light of the possible side effects as well. One more quick question if I may? Has anyone had intense pain in their hip area? I get the stabbing pains at night in my hands and feet and sometimes my jaw. Most of my joints actually, but the hip pain is the most unbearable. My doctor says it isn't related. Funny thing is it feels like the same kind of pain. I feel like someone snuck up on me and hit me with a big sledge hammer. Jolts me right out of a deep sleep. Very rude awakening! I believe he said it was bursae or something like that. The rude man said it was probably my advanced age (42) or weight... I have had no weight change beyond say 5 pounds in three years. The only thing new in my life is Sclereoderma. ;) Thank you all for being here! I'm sure I'm not the only one here who feels a whole lot less isolated with this disease because of Sclero Forums. Connie
  3. Suzieq, Best wishes with your quest for answers! I live in the burbs of Seattle actually. Would love to know who you found and how it all goes. I too am very confused and not terribly satisfied with my RA. He sees me every other month and I fear he just doesn't tell me anything because he does not wish to upset me. He always asks if I have questions and if I have been researching online. When I do ask a question he just gives me a dumb look and a sight nod or shake of his head. I'm sure your sister will be a great help to you during your appt. Take care and enjoy Seattle. Oh yeah, bring gloves! The weather has turn nasty again.... <_< Connie
  4. Christy, That would be great. I hope it goes well, cracked skin is painful. Take care. Connie
  5. No, it's not you at all. No one knew what I meant. I was asking about digital ulcers. Those scare me... I want to avoid that at all costs. Does Raynaud's cause them? If I wear ski gloves at all times will I be safe? I'm writing this with a smile thinking of going every where in ski gloves... Thanks for clearing up my confusion. Connie
  6. Wow, Thanks to everyone for their input! Soft foods, funny that never occured to me... lol Judy- I had no idea that there were exercises for scleroderma. I will go find that site. With the loss of movement I have been experiencing in my hands, I was wondering if there might be something I could do to improve that. Thank you! Gigi- Your stituation sounds almost parallel to what I have been experiencing. I'm taking naproxen and vicodine for the pain and swelling. Also prednisone which I am seeing here might not be so good to do. Are you having a lot of Raynaud's's too? Hope you feel better soon. :) Hope you all have a warm and happy weekend Connie
  7. Hi All, I am still learning about scleroderma and the things that can be affected. I have had my feet hurt and swell to the point that I could only wear slippers. Then the joint pain moved its way up to knees and elbows. It seems to have settled in my hands mostly however. How long does it last, the pain and swelling? I was wondering if anyone has experienced a deep, aching pain in their jaws just below the temples? I feel like someone has socked me in the jaw and dislocated it. Is this related to the rest of my aches, or have I been talking too much? :unsure: I wouldn't have associated most of my symptoms to scleroderma if it weren't for you all and your wealth of knowledge. My doctor doesn't tell me much I think for fear of scaring me. Thanks Connie
  8. I don't know if it is proper here to ask a related question or if I should start fresh... Sorry if I am not doing this correct. I am taking a blood pressure medicine to help with the Raynaud's, but like the others here I am suffering more than ever. It is continual all day long and my feet and hands look very blue and white. I have never had it this severe. I keep a space heater at work and wear gloves almost continually. Do you get DU from not being able to get the circulation restored for a long time?
  9. Hello Janey, I'm new here... I just thought I share with you what I have found. I work at a bank and spend my day at the computer and the cold has been a problem for years for me. (didn't know why until just recently) :( Anyhow now the hand swelling added a little extra challenge to finding just the right typing gloves. I found the Isotoner has a stretch fleece that is as thin as fancy gloves and they fit swollen hands well. They come in many fun colors and I bet you could put some sort of craft fabric paint or something on the tips to provide a non slip finish. I thought about doing that to mine. I'm using mine now! Hope this helps. Keep warm.... :) Connie
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