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Everything posted by Piper

  1. Piper

    Saw My Rheumy Today, Update

    Hi Irene, I take amytriptyline for night time pain and sleeping problems and I must say it helps me with those. I think it even helps my over all pain levels during the day because when I go off of it I really feel more pain. I take it off and on as it seems to build up in me but over all I feel like it helps. It wouldn't hurt to give it a try and 10 mg. is a very low dose. Hugs, Piper
  2. Piper

    Yet, Another Feet Question.......

    Hi Donna, I feel for you because my feet hurt too, alot! I wear socks like Pam that are wool blend and chunky, not too tight. Most of the year I wear them with my German manufactured ergonomic sandals (yes, I'm the person they talk about who wears socks with sandals) lol. I have soft boots that I wear in the winter, shoes hurt too much. I always wear socks in the house during the summer when the air conditioning is on and to bed at night. Find what feels best for you and stick with it. I've had to throw fashion out the window. Hugs, Piper
  3. Piper

    Burning Under The Skin

    Hi Jackie, I've just started having burning in the past couple of days and I remembered reading your post. Mine is on my leg from the knee down. I have to put it out of the covers at night cause it's so hot. I have peripheral neuropathy in that leg and my toes are swollen and painful so I'm thinking it must have something to do with that. Take care and hope you find some relief, Hugs, Piper
  4. Hi Kimberly, Welcome Back! I just wanted to say that I know how you feel. :( I've been in this limbo for a long time too. It's a nightmare to not feel good and not have a diagnosis or be believed by friends or family. UCTD is a real diagnosis. I don't even have that. My Dr. calls mine grumbling disease but now that my ana pattern has changed to speckled & nucleolar I believe that I'm inching closer to a diagnosis. I hope! Hang in there and be good to yourself. Hugs, Piper
  5. Piper

    Kidney Question

    Hi Margaret, My GFR was at 70 when it was first tested and I don't have a diagnosis except my Dr. says I have grumbling autoimmune disease. He has kept a check on it tho, every 6 months to see if it's changing. He told me that it might be normal for me or sometimes the NSAIDS can cause the drop although I don't take that many. I was a little worried at first as well but mine has been stable for a year now. Take care, Hugs, Piper
  6. Piper

    Tattoos And Skin Involvement

    Hi, This is not really the same thing as a tattoo but I have wanted to get my nose pierced like my daughters with just a tiny stone. I really don't think it would look too good beside all the red dots on my nose tho and I don't know how it would heal. Maybe a small tattoo would be better. This must be mid life crisis! :D lol Hugs, Piper
  7. Piper


    Hi Peanut, I also have sore feet and it feels like the balls especially have no padding. I have bought some of those gel insoles and they help some but they seem to put a strain on my other joints (knees, ankles) because I feel like I'm walking uphill. I also have a large lump that has come up in the sole of my foot. The Dr. looked at it and told me I would have to pad it but didn't really tell me what it was. I like to walk, even tho it hurts as it's good for the heart and lungs but sore feet really put the kybosh on walking too far. Take care, Hugs, Piper
  8. Hi Sam, I'm so sorry you're having problems with your lungs and you haven't been feeling well. I just wanted to say that my kids both use puffers and one thing they have found out is that you have to take a drink after you use them. Maybe this would help your sore throat. Just a thought hon. The Dr. told my daughter that you could get a yeast infection in the throat if you didn't drink after too. Take care, Hugs, Piper
  9. Piper

    Itchy Spot

    Hi Sweet, I've had an itchy right hip for years. It's worse in the winter and comes and goes but drives me mad when it's active. Isn't that weird that it's the same spot all the time? My fingers have started to get itchy and no amount of scratching will satisfy the itch. It almost feels like the itch is deep down in the bone. Take care my dear, Hugs, Piper
  10. Piper

    Choking Anyone?

    Hi, I wonder how many have involvment in their upper throat like Sherrill. For some time now the opening to my throat has been narrowing but I thought I was imagining it. When I went to the Dr.s he said that it looked like my throat was being pulled down on one side, and it feel like it too. Some nights I find it hard to breath and have to put my head back so I can get more air in. Don't know what's causing it but I wish it would stop. Hugs, Piper
  11. Piper

    Hiatal Hernias....

    I have one and I'm in the elastic waist pants now as well. :D I think I have found the reason for my Gerd being so bad lately. I have been taking my iron at bedtime with a vitamin C like the druggist suggested. Even tho it is Ester C and supposed to be less acidic, it's still too much for me so I will be taking the iron by itself for now.Hopefully the gerd will get better. I did not know that Hiatal hernias could be connected with anemia tho. I wonder how exactly that it causes anemia. Well, I have both, so maybe there is a connection. Hugs, Piper
  12. Piper


    Hi Carrie & Janey, I guess that came out wrong. I would never take anything or increase anything without being told to by the Dr. I just didn't know that they could prescribe more of them. I'm going to call tomorrow and see what he has to say. It's nice to know that when one drug stops working, something else may do the trick. Take care, Hugs, Piper
  13. Piper


    Hi, I have had GERD for many years but lately I've been having a dickens of a time with it at night. I added more height to my bed and believe it or not I put a hole in my bottom sheet from pushing myself up all night after I'd slid down. I thought that the 40 mg. of Nexium that I was taking a day was the highest dose but I see that Sheryl takes more. Didn't know you could do that so thanks for posting that Sheryl. I will contact my Dr. this week to find out the next step in meds. I wake up constantly with pain in my back from the acid and add that to 50 hot flashes a night and it doesn't add up to much sleep. :( Oh, also the pain on top of it. Well, you all know what I'm talking about. I have a prscription for Celebrex but that would be the icing on the cake for Gerd so I don't bother to take it. Hugs, Piper
  14. Piper

    Something To Think About...

    Hi William, Welcome to the site! I'm so sorry that you have been diagnosed at such a young age also. I am not diagnosed but have many symptoms of this disease and positive bloods. I just wanted to say that I worked for 10 years in a nursing home and many of the patients had T.B. I was also given a yearly test but never showed positive. I have a friend who worked with me who has developed scleroderma also. I've also wondered if there wasn't something in our work environment that caused us to develop this. I do have a heavy family history of autoimmune diseases tho. I think that once scientists find the trigger (and there could be many) they'll be able to find a cure. Take care, Hugs, Piper
  15. Piper

    Trouble Exhaling Properly

    Hi Irene, I'm not diagnosed but I have been having the same type of breathing problems that you have. Mine happens in bed at night or sometimes when I'm walking too. I find myself gulping air and having a weird feeling of needing to yawn to get air. I can get it in but then it dissappears, there's nothing in there to come out. I had never thought of asthma but since my children have it, it would make sense that I could also have it. Mine just comes on out of the blue. I also have trouble breathing when I lie on my right side in bed. I mentioned it to my Dr. and he listened intently to my lungs but I guess he couldn't hear a problem because he never said anything. I do sometimes hear a wheeze when I exhale. Take care, Hugs, Piper
  16. Piper

    Organ Involvment In Limited

    Hi Mike & all, Just wondered if you could direct me to where that study was posted on this site. I'm not diagnosed but do have the RET is Crest. My last ana was low 1:40, I guess it would be called negative. My G.P seemed to think this was a positive thing. The pattern changed however from speckled and homogenous to speckled and nucleolar. I don't know what that really means or if it's significant but I know I feel worse all the time. Also my hand tightening comes and goes. Isn't that weird? One day I can't open my hands and the next the skin is almost normal again. Thanks Hugs, Piper
  17. Hi Shari, I just wanted to say that I have all the symptoms you have plus some bloods being off. I asked my Dr. if you could call my illness UCTD because it's so hard not to have a name for it. He said he preferred to call it grumbling disease. That's even harder to explain to people. I really know how you feel. I know that my Dr. is keeping an eye on everything (yearly) tho and treating the symptoms so I guess that's all that matters. Just wanted you to know that you are not alone. Hugs, Piper
  18. Piper

    I Just Want Answers!

    Hi love, I'm not diagnosed either but my GFR came back at 72 one time. My G.P repeated it twice every 6 months and checked to see if there was any protein or blood in my urine. It was negative. He told me that maybe taking NSAID's had caused the problem or maybe that was just normal for me. My last test was the same, no change. I do have puffy hands and tight hands on some occasions. My last ana turned up very low, negative I guess at 1:40. The pattern has changed however from homogenous to speckled and nuclear. ??? Make sure that your blood is checked again to see if the levels are changing. Take care, Hugs, Piper
  19. Piper

    Pcp Appt.

    I agree Shelley, it would be good to even see a rheumatologist again. lol Hugs, Piper
  20. Piper

    Pcp Appt.

    Hi Heidi and Shelley, Yes, I think that's exactly what he meant Heidi. I just wish he would give it a name. Do you know what I mean? Without that I sometimes feel like it's all in my head. I really believe that I fullfill the UCTD criteria as I have tons of symptoms and have had a positive ANA for the past 5 years. I keep developing new symptoms all the time but not enough to satisfy any specific disease critieria. Maybe now that he sees my hands curling he'll take it more seriously, and maybe not. :unsure: I try so hard to get on with my life and pretend that there's nothing wrong. I know that many of you have been in this spot before. Thanks so much for your thoughts. Hugs, Piper
  21. Piper

    Pcp Appt.

    Hi Sweet, I'm so sorry to hear that you've added fibro to your repertoire. I was wondering if that's what you had when you described your pain. I have it also and it's miserable. I hope you find something for relief. I was at the doctors the other day and he's concerned with my hands being unable to open up now and has sent me for a whole whack of new blood work. I asked if I had enough criteria to be called UCTD and he said he liked to call it grumbling disease. Not really sure what that means. The warm water of a pool would help I'm sure but our pool is always freezing until about August. That's the only time it's warm enough for my raynauds. Some places have arthritis programs in warm pools and I've heard they are very good. Take care. Hugs, Piper
  22. Piper

    Tight Palms/fingers

    Hi love, I want to thank you for starting this thread. For awhile now my hands have been doing exactly what yours are and I can't straighten them. My G.P (who is taking care of everything) said that yes the palms are very hard but.....scleroderma starts at the tips of the fingers and then tightens and curls down from there. He said the palms aren't involved at the beginning until after the fingers have curled. I'm beginning to wonder if he knows what he's talking about. He agrees that I have something going on, positive ana, severe Gerd and swallowing probs, raynauds, telangecasia on face, arthritis, fatigue, high b.p, low GFR, ect. but doesn't think that I have scleroderma. I'd really love to think he's right, I'm trying to get on with my life but I know that I'm sick. Your post has given me hope that, it's not all in my head! Hugs, Piper
  23. Piper

    Visit To Rheum'y A Scary One.

    Hi, I'm glad that you've found a Dr. that is getting to the bottom of things. That's half the battle, when they know what they are dealing with then they can treat you. Was it Polyarteritis nodosa that the Dr. said it could be, by any chance ? I'm familiar with that name because my aunt had it. I think it's a type of vasculitis but I'm not sure. I hope your tests come back positive. Thinking about you. Hugs, Piper
  24. Piper

    Sleep Study Results

    Hi Ann, Don't let this upset you hon. Just forge onward, there's help for you out there. I think a pain Dr. would be more intuned with your problems. The neuro obviously isn't up to snuff on sleep probs caused by pain. You could send him a letter but I don't know how much good it would do. I would definitely tell your rheumatologist or G.P tho the next time you are there about how useless his suggestions were. Take care, Hugs, Piper
  25. Piper

    Sleep Study Results

    Hi Ann & Sweet, I'm right there with you, nights are very bad for me. I dread going to bed. Then when I do wake up I feel like I've been beaten to a pulp. Ann, I don't think the neurologist was really listening to you. Those suggestions are great for the average person, not one with your medical history. I have the same sleep patterns as you and tend to get my best sleep in the morning. Do you absolutely have to get up with your husband or could he feed the dog for you at that time? I feel you've got to get the sleep when you can get it. I know my husband sometimes makes me feel guilty for "sleeping in" while he has to get up but he's had a good nights sleep. I find a combination of things help me sleep from meds, topical rubs and a heating pad combined. Sometimes none of them help tho. I took a hot bath the other night before bed thinking that would help. It didn't. The whole night I felt like I was a tube of toothpaste being squeezed in the middle, about to explode somewhere. Really weird. I think a pain specialist would be a good idea for you to explore, it can't hurt. Sweet, I hope you are getting some sleep now hon. I know we've talked about it before and I really do sympathize with you. Take care, Hugs, Piper