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Everything posted by Piper

  1. Piper


    Hi, I have had migraines with aura since I was a young child. I finally was able to almost eliminate them through diet avoidance ( chocolate, red wine, nitrates, & aged cheese) and I also take elavil and a beta blocker ( not good for raynauds) daily. When I occasionally get one I take a pain medication and go to bed. I don't know if there is a connection between them and slcero or not. I'm not diagnosed yet, I just have alot of symptoms. I hope you find something to help yours. Hugs, Piper
  2. Piper

    Low blood sugar

    Hi Nan, I have this too and sometimes it seems no matter what I eat I end up with the shakes and sometimes confusion, especially if I'm walking alot in the morning. I find that I have to eat a carb + a protein every few hours. If I just have a carb like bread my blood sugar drops. Hope you find a something that helps cause it's a miserable way to feel. Hugs, Piper
  3. Piper


    Hi love, I'm happy that you are finally getting some answers. I didn't know that they could say it was Crest just from the barium swallow. My Dr. told me I have the esophagus of someone with sclero but I've never gotten a diagnosis yet. It's so frustrating. I hope that the rheumatologist can give you some answers, and some relief. Take care, Hugs, Piper
  4. Piper

    Barium swallow

    Hi love, I'm sorry you're having this symptom. I have it also but find that it gets worse and then better. You've been given some good info, I find I have to take my nexium at night now for it to work and nothing to eat or drink after 7. Don't you hate the diagnosis run around. You wonder what they are not telling us. I took my son to the dermatologist a few years ago and while I was there she looked up at me and said, "you don't have many wrinkles". I knew right then that my G.P had asked her to check me out too while I was in there. Take care, Hugs, Piper
  5. Piper

    Nightmare colonoscopy

    Hi, I had the same experience with my first colonoscopy. I remember yelling at them to stop and then I got on my hands and knees because I was leaving. I had a different Dr. the second time and I told him all about it and how I was worried it would happen again. He said, " don't you worry, I will not let it happen again". Whatever he did or gave me worked because I didn't feel a thing. I had a pre-cancerous polyp removed so I have to go back in another year. I will make sure they know what was given to me last time. I also was wide awake for an endoscopy but kept thinking to myself, this isn't so bad. It was because I didn't gagg once. Make sure that the Dr. sprays your throat very well before and you won't have that reflex. The Dr. told me that he finds the spray covers much better than gargling the numbing drug. Hugs, Piper
  6. Piper

    Our Little Peanut

    Peanut, Thinkin of you today and sending lots of (((((((((HUGS))))))))))) your way. Hope you'll soon be feeling much better. Hang in there. Gentle Hugs, Piper
  7. Hi love, I've had the vibrations also but not for a while. Hopefully yours will let up soon too. I used to have a feeling like I was being squeezed around my chest and middle when I would lay flat. That thankfully has gone for now as well. Oh what will be the next weird symptom to pop up. You are not alone my dear. Hang in there. Hugs, Piper
  8. Piper

    Skin Changes

    Hi K, It's good to hear that someone else has the palm pulling in. I only see my G.P who tells me that it will get hard down the complete length of the finger before the palm starts to harden. Well, my palms are as hard as a rock, and my elbows also on the top. Don't know what's causing that then. Hi Mando, My Dr. doesn't pinch my fingers he take one between his thumb and forefinger and sort of wiggles it back and forth to see if it's hard. Mine move above the 2nd joint but not below, they seem to be solid down there and won't move. I don't think my bumps are calcinosis as they've never opened up. I was told my fingers are bent due to osteoarthritis so maybe that's what the bumps are. Take care, Hugs, Piper
  9. Piper

    Skin Changes

    Hi, My fingers are tight and shiny till the first joint then swollen & shiny above.Also getting hard bumps on the first joints that hurt like the dickens when you knock them. I can't spread my fingers apart and the palms are hard and pulling my fingers in from the palm side. Anyone's like mine?I also have hard patches on the outside of my elbows that I've had for a year or so now. Hugs, Piper
  10. Piper


    Hi JJ, I'm another with this kind of fatigue. Some days all it takes is to vacuum half a room and then I have to sit down. I will fall dead asleep for 20 minutes to half an hour and when I wake up I feel much better so I believe my body is telling me what I need. As I don't have a diagnosis yet I tend to push myself to the limit because I feel like I'm just being lazy but, falling asleep like that is not normal. I am also on iron because of anemia but I haven't noticed much of a difference since I've been on it. Just know you are not alone. People who have never had this feeling have no idea how disabling it is. Hugs, Piper
  11. Piper

    February 6 - 14... Our vacation

    Hi Susie, I just read about your trip. It sounded wonderful! We went 2 years ago and are going again in May as we had such a relaxing time last time that we opted for Hawaii over Vegas for our 25th anniversary. We stayed in a B&B on the windward side in Lanikai and we were 1 house back from the beach. For anyone who has never been there, if you get the chance, go! When we arrived at 10 p.m we walked out onto the beach and the magnitude of the sky and the stars took my breath away! Right then and there I was certain that there must be a higher entity to have created something so beautiful! Hugs, Piper
  12. Piper

    In my Nose?

    Hi, I've had constant post nasal drip and sinusitis off and on for years. I've found that if I use the nasonex soon enough when it starts up I don't end up with a full blown infection. I thought mine might have something to do with the dry eyes, mouth and swollen parotid glands. Hugs, Piper
  13. Oh My! I am so sorry to hear such sad news. My thoughts are with her family. Sherrill has always been here it seems and was very special to each and every one of us. Gentle Hugs, Piper
  14. Piper

    skin tightening

    Hi, Maybe I'm not crazy after all. Mine comes and goes also, worse in morning. My palms and soles of feet are the worst and I can't open my hand flat or spread my fingers apart in the morning. Later in the day I look at my hands and they look almost normal although I still don't have complete range of motion. I have raynauds, + ANA for 5 years, tons of symptoms and my Dr. says I have a scleroderma esophagus. I still don't have a diagnosis though and some days I think, "what's the matter with you, it's all in your head"! I asked the rheumatologist why I hurt all the time and he said, " some people just hurt"! Like it's normal to be in pain. :rolleyes: Hugs, Piper
  15. Piper

    We are moving

    Hi Jen, How exciting for you to be moving to Britain! Just a thought re your dogs. I wonder if you flew to Holland or France and then travelled by car, would you still have to put the dogs in quarentine? I know the little one can go under your seat in a carrier if you flew with Lufthansa. Your larger dog would still have to go down below tho. Sorry, I can't think of any other option for you but if you Google it there is lots of advice online about flying with your dogs. Take care, Hugs, Piper
  16. Piper


    Hi Jaxs, Yes, I've had this before. I ended up having to have a LEEP done right away as I had carcinoma-in-situ. I was put out for that so it was no big deal. I know it isn't pleasant and it always seems like there's something. It is wonderful though that they have this technology today and can save many lives. Mine was 10 years ago and I go for my paps faithfully now and have never had another abnormal one. I sometimes feel overwhelmed too and wish I could just pull my head in my shell when it gets too much. Hugs, Piper
  17. Piper

    Changing Hands........

    Hi Karen, You're talking about my fingers and I don't have a diagnosis either, only grumbling disease. Makes me think I'm imagining it sometimes. Taking a picture of them is a good idea. Hugs, Piper
  18. Piper

    Heart Flutter

    Hi Barb, I also get fluttering in my chest. Sometimes I feel like I have to cough when I get it and that usually stops it. Try it next time. My Dr. made me wear a 24 hour monitor and yes I was getting these things when I said I felt them. Nothing was done for them and I continue to get them so I guess they weren't too worried. Take care, Hugs, Piper
  19. Piper

    Esophagus Problems

    Hi Lizzie, That makes sense to me, I've often wondered why I was told to take it first thing in the morning when night time is when I have the worst symptoms. I'm going to try taking it at night and see if there's a difference. Anything that might relieve the pain is worth a try. Hugs, Piper
  20. Piper


    Hi Margaret, I'm so sorry that Gareth had this frightening event happen. Just a thought, seizures can be part of lupus and if he has an overlap of symptoms they may want to test him for that as well. Hope that was his first and last. Hugs, Piper
  21. Piper

    Wedding Rings...just Curious

    My fingers go up and down too so you never can tell when I will be able to wear my rings. Sometimes I wear them but mostly I can't. Hugs, Piper
  22. Piper


    Hi Celia, I know that the ones on my hands seem to come and go. They'll stay for a few days and then they're gone. I also have them on the face, those ones don't go and I have alot of veins showing there too. I have many of them on my legs on the inner part closer to the knee and on the top of my feet. My friends rheumatologist told her that when they're on your palms it suggests liver involvment but I've never found that written anywhere. Hugs, Piper
  23. Piper

    Adrenal Adenoma

    Hi Ani, I had a neighbor who had one of these. She was diagnosed with chronic fatigue syndrome and for years was almost bed ridden. By accident this was discovered and removed. The last time I saw her she said she's feeling better than ever now and attributes it to the removal. Hugs, Piper
  24. Piper

    Kidney Stones

    Hi B, I was having flank pain awhile back and an ultra sound showed I had several stones in the kidney. They never passed to my knowledge and I haven't had the pain in awhile. I was told to drink alot of water. Hope your pain eases soon. Hugs, Piper
  25. Piper

    Alcohol And Sd

    Hi Snowbird, I cannot drink anymore. I've tried on numerous occasions to have a drink and I just do not feel well at all when I've had it. Instead when I'm out I enjoy a nice virgin drink complete with the umbrella & cherry. What's bothering me is that my GERD is so bad lately that I'm going to have to give up my one true love. My first and only cup of coffee a day. :rolleyes: Oh well, I realize it could be much worse. I have a friend who has a feeding tube due to sclero and can't eat a thing. She sometimes takes a wee bit of food just to get the taste. :( Hugs, Piper