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Everything posted by Karenlee

  1. Hi Mando, Sorry to hear you had a rough go of it today. You'd think in these advanced times of medicine there would be an easier way to draw blood rather than the barbaric needle. I say that now, because since having sclero, I am having the same trouble with blood draws. The nurse actually blamed the fact that my vein "moved" as the reason she couldn't draw blood. Anyway, my hubby is on Hydrochlorothiazide, and from what I understand it is a water pill, so since you fasted for the blood work, then took a water pill, you may be dehydrated and that's why you are feeling bad. Try to drink
  2. Wohali, I notice my arms get very itchy after a shower. All most like pins and needles type itch. I slather on some lotion and that seems to simmer things down. Also, my back between my shoulder blades itch like mad. I do have a hyper-pigmentation spot back there, but don't know if the two are related. Since I don't have a back scratcher, I find the best tool in the house is my spaghetti grabber thing that has the teeth on it that picks up spaghetti. Oooooh what a releif. Or I do the ol' rub my back up against the corner of a wall. Oatmeal baths are great too. Just process some o
  3. This is very interesting. I don't recall any actual trauma to my hands that set off Raynaud's, but I was at the computer at work 24/7 and had the blasting cold air conditioning directly on me. I know that's not a trauma but it could have sped up what was going to happen eventually anyway. B)
  4. Purr it could be your meds. Not sure what you are taking, but if it's fine in the morning, then you take your pills and get the bitter taste it's probably that. I was on an anti depressant a while back and it left an awful taste. Also, are you taking vitamin supplements? That could be the culprit too.
  5. Hi Clementine, I have the rough skin on the outside of my right index finger. It started up just around the same time as my sclero. There's a teeny bit on the oustide of my left index too but mostly on the right handed finger. Feels rough and callous like. Does not feel tight or waxy though. I do feel it's related somehow since it started when my knuckles started to get thick. Also feels like a eczema I would think so could be that. Karen
  6. Thanks for all your replies. I suppose it's just the disease that gets a bit uppity sometimes. Thankfully it doesn't last long just a bump in the road. I thought I was having a flare in a flare Lol! :P Karen
  7. Hello everyone. I'm going to try to word this as coherently as possible so I do not sound silly. Ok, I consider my episode with CREST/UCTD a major flare. Currently being treated with medications, but notice that every once in a while, I will feel very puffy and swollen (from the inside out) and when laying down I can actually hear my pulse inside my head, like the pulsing in my ears. My right index finger will get especially swollen, shiny and itchy and red. Also I'll feel extra stiff, more than usual. A couple of NSAIDs usually do the trick, and the mini flares last no more than a day.
  8. Shelley, you have such a way with words, thank you for your insightful posts. You take the time to really dig deep and come up with thoughtful and insightful replies, I know I appreciate your input. I learn something new every time I come on to this forum thanks to all of you. I may not post a lot anymore, but I am still here. Karen
  9. Chefkat, Good luck with the PT. I would be careful with the OTC joint therapies and ask your doctor first. Some of us with this have too much joint tissue so taking something to build it up may not be a good idea. I think that is more for people with thinning cartilage, although I could be wrong. Karen
  10. Chefkat, I have CREST and have tested positive ANA. It was pretty high at first but has gone down since being on Plaquenil. Scl70 is also positive but I was told by my doctor to take that with a grain of salt. I have Lupus like antibodies but tested negative for actual Lupus. (which is totally confusing I know). I have the looping capillaries visible to the naked eye so no test was required for that. Karen
  11. Margaret, I had an old heating pad from a back injury that I use for my hands when I get into bed. When I bought it for the injury I never imagined it would get so much use Lol I think a heating blanket is a great idea. How is Gareth doing? The Plaquenil is helping? I so hope he is responding well to it. It's one of those meds that require a lot of patience. I feel a difference from when I first started (last April) but still not limber enough to paint my own toes yet :P I tried last week and the best I could do were racing stripes down the sides lol Love, Karen
  12. Awww thanks for thinking of us. I've been sort of laying low, just doing my thing. I still come on and read up on everyone now and then. Just went thru an information overload and needed to take it down for a bit. Doesn't mean I don't think of you all. Tru is doing well. I speak to her regularly. Wishing you all happiness and pain free days. :)
  13. Oh Karen, I'm so sorry for your pain and trauma at the ER. I can't begin to imagine what you are going thru, and I have no advice other than to follow up with your Rhumetologist and new GI. I hope it doesn't happen again. I'm glad your hubby was right there with you to help at the hospital. Sometimes we need an extra voice when no one will listen to us. I suppose in the meantime, just be careful what you eat and try to rest. Please keep us posted. (((hugs))) Karen
  14. YFchoice: Hey, since it's physical therapy maybe the insurance company would cover your travel expenses ;) Smurfette: Thanks for your input. I still have the bottle of Prednisone because I had to stop due to an allergic reaction, so yeah probably not the brightest idea to take one. I was just desperate for releif. I took some ibuprofen today and that has helped a bit. If it stays this bad though hubby said he'd leave work and take me to the doctor. I'm going to take a wait and see approach. Purr: It could be. I really don't know. I thought it was a muscle pull/strain/spasm but I could
  15. Peggy, You are not alone. I'd forget my head if it weren't attached to my shoulders. I keep lists for the grocery store (I think most people do that) and keep 3 different calendars, 2 on my computer and one on the pantry door in my kitchen, so there's no chance of forgetting a date or an appointment. Even when to give my cat flea drops :D My Dad had Alzheimers too and yes that does make me wonder if someday I'll get it, but for now I think it's just not working (my last job was challenging and kept me sharp) and my brain getting a bit mushy. That's great that you are reading again. Th
  16. No Peggy I don't think it's sclero related. (oddly enough, because lately I've been blaming everything on sclero and I need to cut that out). I do think it has something to do with my connective tissue though. On the upside, the pain is distracting me from my mouth sore :rolleyes:
  17. YFchoice. That must be difficult to face the meds, and I dont blame you about not wanting to take the prednisone at such a high dose, but remember the doctor said 3 weeks so it's not like a long term thing and it'll help with your lungs so mabey just close your eyes and jump. It'll be something you can count down on your calendar and look forward to ending. I hope you feel better. Karen
  18. Thanks for your suggestions. I laid down with a heating pad and I think I made it worse. Before I couldn't move my head side to side, but now I can't move it up or down. My doctor is 1 hour drive away so thats out. Think I'll grab and ice pack and try that now. :( YF---if you make house calls to Long Island, I'd take you up on that in a heartbeat :)
  19. Hi everyone. Well I'm back with yet another complaint. Sorry if I'm whining a lot lately but seems that this is just one of those weeks. Been having a still sore neck the last few days but today it's worse than ever. It's on the right side and hurts so bad and I can't turn my head. Yesterday I put heat rub on but all it did was burn so bad I had to wash it off. I have a bottle of Prednisone left and I'm wondering if it's ok to take just one to ease the stiffness? (they are 4 mg). I think it may be either my pillow being too big or the air conditioning. Or maybe both? Any advice would
  20. Hi Tru, Sorry about your foot issues. I don't know much about bunions or the best pain remedy other than warm fuzzy shoes that fit just right. (I know easier said than done). Please don't sit in the sun to get vitamin D. You know that accellarates our immune sysytem. There's a much simpler solution as the others have said. Take a calcium suppliment. I have one that is 750mg, and there is added vitamin D and K in it to help absorbtion. I know how you feel about having to take yet another pill, but like someone said, it's not a drug, it's a suppliment. If you saw my 3 pill boxes you'd t
  21. Smurfette, Congradulations that you got the go ahead for the infusions. I can't offer any advice, but wanted to say good luck with it, and I'm sure there are others here that can give you some insight. Karen
  22. Janey, Thanks for the advice. I have actually been on folic acid (prescription strength) for a few years. My OBGYN put me on it when we were trying to conceive, so maybe if I hadn't been on it, the sores would have been worse. Again, thanks for your input. Karen
  23. Thanks Birdman. I'll do that tonight. Just got back from the store and bought some oral anesthetic. It numbed it for about 10 mins, then back to pain again. Karen
  24. Birdman, I always refused the gas. Too afraid of what I might say under the influence :D But I'm sure you'll be fine. My sister takes the gas and she does fine. Might as well rather than suffer thru it with just novocane. Good luck. Karen
  25. Yes, I do occasionaly feel super tired for no good reason. And to make matters worse, lately I've been exhausted all day and up and awake all night. Since the UCTD I think the fatigue from the tightening takes it's toll just living normally day to day, and the automatic strain from the tightness must be causing it. My neck has been particularly tight the last few weeks and I can literally feel the CT and tendons pulling like tight rubberbands right thru my skin. Hopefully the plaquenil will bring releif from that at some point. I am 3.5 months on it, and don't feel much help from it yet. Can
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