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Posts posted by Chopper

  1. I didn't realize this subforum was here until I just watched Amanda Thorpe's nice video! You certainly have things in perspective! I don't seem to drink enough during the day so I drink in the evening, and I too wake with a full bladder during the night. But now that the seasons are changing, I'm going to dread getting out of bed during the cold nights! I'm glad you have a full bladder, LOL!!!

  2. It's such a good question and I ask it ALL the time! For me my most bothersome cuticles are my thumbs where I seem to have thicker skin above the nails that peels alot. However, on my other fingers, on the sides of the nails, the skin gets thick and builds up. If I don't trim those sides down with cuticle nippers, I'll get painful hangnails that sometimes turn into an inflamed fingertip. For me, in that case, I find it necessary. However, I do believe that I overuse my cuticle nippers, but I can't seem to stop. The best my nails looked was a few months ago; I had a shellac french manicure and had it done 3 times (lasts almost 3 weeks). I think why my cuticles looked so good is because I wasn't bothering them as much! I still had to do some trimming, but only what I HAD to do. I was low on cash and decided not to get them redone. When they took the shellac off, I had telangiectasias that were never there before! I don't know if it was coincidence or if what I had done cause them to surface? So I'm torn, I'm back to picking more at my cuticles, my buffed nails are growing out so it's back to ugly ridges, but I'm almost afraid to try shellac again. I think I like the idea given here to go get a simple manicure and polish once a week, watch what they do, get their recommendations and see how they look in 1-2 months and if I can try to do it on my own. Now that winter is on it's way...sigh. I hope you find something that works well for you!

  3. I have to add my well wishes too! I know what you're having done, but I can't fully appreciate what is involved and the recovery and such. I wish you well and most of all I wish you relief. I take mental notes on posts relating to GI issues because that is my main symptom, and I fear the future! Keep us posted on how it goes and your recovery! (I enjoy reading descriptions, so don't be afraid to give your synopsis!)

  4. You're too funny! :VeryHappy:


    Love your idea! This is my first summer with Raynaud's and I've been amazed at how many times I've needed to warm my hands! I'm dreading winter! Awesome idea!


    I'm thinking that I'll be replacing all my gloves with mittens, and fleece-lining my pockets!!





  5. Hello! Welcome aboard!


    You're in good company here! You sure have been through some tough things!


    What a relief you don't have cancer and you didn't get paralysis from your stroke! I too have limited scleroderma, or CREST. At this point fatigue hasn't plagued me, but I certainly feel for you. Since we ourselves are unsure of this strange disease, it's no wonder at times our friends feel insecure too and maybe don't know how to act and it becomes easier to avoid the situation.


    Yes, it can get depressing to keep telling our story. I find that many of my friends don't ask details because maybe they're worried it would be upsetting or maybe they worry it's none of their business. I usually simply get, "How are you feeling?". And from there, I usually try to quickly tell them of a couple challenges, and then cheerfully sum it up with something positive, like, "Lately I've really been enjoying......would you like to join me sometime?" I hope your old friends come around, and if not, there's room for new ones!


    I have to think it's good to keep telling my story (in chapters, not the whole book at once :lol:) because that way I think it helps me to accept it and be as positive as possible about it; and I think those are good vibes to give when talking to others.


    Hope you hang around and share some of the insight you've gathered since your diagnosis.


    Take care,



  6. Shelley,


    Thank you for adding those links! How true there are so many causes of bloating, highly individual. Since this is still relatively new to me, I keep wondering how much is related to scleroderma, and how much isn't, and how much can I control.


    My GI doctor so quickly diagnosed the celiac and gastritis and prescribed medicine for the GERD. However, beyond that I feel as though I would benefit more from switching to a GI doctor who works a lot with scleroderma patients. I'm going to see a scleroderma specialist in September, and I plan to ask about this.





  7. My dietician blogged this quote from the a study in the American Journal of Gastroenterology, April 2011, about bloating and gastroparesis: "bloating is prevalent in gastroparesis and is severe in many individuals." What's interesting is the conclusion that "bloating severity relates to female gender, overweight status, and intensity of other symptoms. ...[it] is not influenced by gastric emptying rates."


    The most common causes of gastroparesis are diabetes, autoimmune diseases like scleroderma and medication side effects. I find this particularly interesting because the dietician has several patients who do not have bloating. I do. I burp all the time. By 4 or 5 am I need to either sit up or walk around to burp to relieve the gas pain in my stomach. I do not have small intestinal bacterial overgrowth (SIBO). I avoid gluten and dairy. My gastroenterologist shrugs his shoulders at the cause for all of my upper GI gas.


    A side story that made me think. My grandpa recently had a stricture in his esophagus and food or drink could not pass. A few days before it reached that level, he told me his symptoms were a lot of burping and even hiccups.


    So if bloating severity is not influenced by gastric emptying rates, then I have to wonder more about the cause(s). Scleroderma affects the smooth muscles of the GI tract. In the case of my grandpa, the stricture and the burping were obviously connected. Maybe this is a good question for a GI doctor who specializes in scleroderma, or maybe even a scleroderma doctor: can upper GI gas (ie bloating and burping) be caused by scleroderma affecting the smooth muscles of the GI tract?


    Has anyone pondered this before or even had a doctor explain the cause(s) of upper GI gas in scleroderma patients (when SIBO and food allergies are ruled out)?


    Just pondering,



  8. Lean meats (fishes chicken beef pork crabmeat turkey), rices, grits, any potatoes (peeled and cooked), root veggies (peeled and cooked), canned fruits like peaches and pears and mangoes, applesauce, bananas, fruit smoothies, gluten free pasta, bake gluten free muffins and rolls and freeze them, rice crackers with almond butter, low-fat chicken - tuna - ham - or egg salads with gluten-free bread or crackers. I follow this diet. Message me for recipes.



  9. Yay Andrea! I'm glad you wrote so much because it's my understanding I get to see him on 9/22 along with Dr. Peoples who is studying under him. My GI doctor in Erie told me he IS the GURU on scleroderma. I saw her at the Lupus center (because that's what I thought I had) and she is now full time under Dr. Medsger and took me with her. How exciting too that there's a Sjogren's specialist there that he'll refer you to. I get dry eyes alot, not so much dry mouth. So I think I may have a little overlap. Take care and great to hear you had a positive experience!


    Chopper :emoticons-line-dance:

  10. Hi! I have GI issues, but I don't have experience with those things. I've read about watermelon stomach and I hope you're able to find treatment to keep it mild. I fear it because of reading it can lead to blood loss and I never want to face a doctor telling me he wants to give me a blood transfusion! He wouldn't be happy with my answer! I have gastritis and I've wondered if it will ever 'lead' into GAVE, or if it's two separate conditions. Since I have gastroparesis I have to avoid the things that Jo mentioned in her post, so I hope that means it will help me avoid the candida issue, and that it can be of help to you too! I blog recipes for that type of diet if you ever need ideas for meals, just message me!



  11. Hi,


    I've read through alot of the resources here on pulmonary fibrosis and pulmonary hypertension. I haven't been tested yet, but I wonder if I'll do the pulmonary function test when I go to see a scleroderma specialist in September. My friend with sclero has it done every 3 months even though she's never had lung involvement.


    The last few weeks sometimes my chest feels heavy, and sometimes I feel as though I have to tell myself to breathe. Occasionally I'll get a dry cough. Sometimes light headedness.


    For those of you with lung involvement, how did you feel at the onset? Anything like I just described? Or did you not have symptoms at all (I read sometimes there may not be symptoms)? Can you do fine with a pulmonary function test and still have lung issues?




  12. Thank you, Ladies, for the information! I looked up those links - didn't know they were there! That was very interesting. Glad you got to exercise your brain, Jeannie!


    Judy, your husband's story sounds familiar - why do men think they have to wait until they can't bear it anymore! My husband recently got Lyme disease and he tries to ignore the flares until he can't stand it.


    Janey, thanks for sharing. I haven't progressed to that point yet. At times I wake up with gas pains in my stomach from slow digestion and I have to walk around to burp for relief, but I'm able to lie back down flat. I'm glad to hear there's generally relief in some way or form, even if it is a long term med.



  13. Jo, you're right. I should ask the doctor about that. I'll take the omeprazole until my next appointment. I just wanted to see what would happen. And I'm also curious about others' experiences with it too.


    At this point I'm already on a gluten free, low fat, low fiber, dairy free diet. Sometimes I think it there's not much left to cut! Even though I ate some low fat meatballs and potato salad for lunch, maybe it was still too much fat.



  14. So once in awhile I experiment to see how I deal without erythromycin to help my stomach contract, and I've done well for the last few days as long as I eat the right foods. Yesterday I thought I'd try going without omeprazole and see how I did. Well, 1 1/2 days later here I am with heartburn. Guess I still need it. I've read that it wasn't intended to be a long-term medicine and that it's the most overprescribed medicine today, which is why I've tried a couple times to not use it.


    Since many or even most with scleroderma have issues with GERD, do many of you find that you NEED to be on a proton pump inhibitor? Is this a long-term solution? Have you tried going without? Or have diet changes made medicine unnecessary?




  15. Hi Jalee85,


    Congratulations on getting married! How exciting! If and when you decide to have a baby I hope everything goes great for you. Since you're thinking about it now, you are obviously a person who wants to be prepared, so when the time comes hopefully your doctor will give you good advice and help you be prepared. Here's a link to info on pregnancy and systemic scleroderma...


    Chopper :VeryHappy:

  16. Hi!


    I too love to have something hot to drink in the mornings. I have spent quite a bit of money over the years trying to find a decent tea that doesn't have caffeine yet has body and flavor. I've never been able to handle coffee and tea due to the caffeine and that it makes me break out. Yet I love the full body of coffee, so I highly recommend a rooibos blend of tea such a rooibos chai. You can send me a PM if you want the brand name. Rooibos is such a nice "tisane" because it has some health benefits, no caffeine, it has body, and when blended with other flavors it can be wonderful!


    I sure hope you can get the reflux under control and enjoy your hot beverage too!



  17. Hello Snowbird,


    I haven't noticed that happening to me (yet). At times I do get puffy eyes in the morning and I've used some anti-puffiness gel (message me and I'll tell you what brand) or a cool wash cloth. My mom has even tried cucumbers and tea bags for her morning puffiness.