Jump to content
SCLERO.ORG
Sclero Forums

smurfette

Members
  • Content Count

    148
  • Joined

  • Last visited

About smurfette

  • Rank
    Silver Member

Profile Information

  • Location
    PA, USA
  1. Beanie, I am on Procardia and the one thing I have noticed is that I have far fewer episodes of Raynaud's as a result. It does lower blood pressure and that is something that must be considered because Viagra and drugs of that type also lower blood pressure. If your doctor is going to be considering Viagra just remember to tell him about ALL the drugs you are taking, especially the Procardia because they may interact and cause a dangerous lowering of your blood pressure. It is important to keep your entire body warm, not just your extremities warm also so that you can fend off co
  2. I have CREST and it is a very complex disease. Everyone of us with the disease has very different symptoms. I do have crushing chest pains frequently, but those pains are caused by esophageal spasms. Those pains go through to my back. They are not skeletal. I do have some shadowing on one of my lungs and that does show up on an x-ray. I also have severe pain if I touch between my ribs. That is where the esophagus joins the stomach. So, based o the above some of the location of your pain sounds similar - however the bone pain is different. If you are not seeing a doctor who spec
  3. Don't worry too much about each and every test result. Sometimes they say things other than "normal" but our doctors are not concerned and that means you have to ask for more clarification. I often have blood work where one or two tests are out of range a bit and they frequently mean something as meaningless as I was a bit dehydrated or I was particularly allergic that day when the test was taken. Not every result that is not quite normal means it is a very serious problem or even a problem at all. As long as you have good communication with your doctor and you ask questions about a
  4. My daughter is a singer and menthol is a major no-no. It is terrible for the vocal chords, it burns the chords and the throat. I guess it would be bad for a throat or esophagus made sore with reflux as well. My daughter takes nexium twice a day and other meds and also an antacid for reflux breakthrough when she is having a particularly bad time. It is not unusual to be prescribed more than one med for reflux. There are teas that are also helpful for your throat to keep it moist for you when you teach. If you can sip tea when you teach try a throat coating variety. It will help coat your
  5. The one thing my rheumatologist believes in is testing - he believes in checking on things and making sure that I am closely monitored so that if anything does change or start to develop it can be dealt with in the earliest stages. That is probably the best approach I have found. I left another doctor because he was too laid back. He tested only once every 2 years. I was concerned that things could go awry and they would be way too advanced before he would have gotten a grip on the situation. So, I think that the "watchful waiting" approach is best if it means that you get tested regularl
  6. Hi Ann, I have not posted in a while, but reading your post made me feel like you just must not know where the next hit is coming from! It is almost like a bad sitcom plot! You have certainly had more than your share. But I must say that I like your style, asking for stuff to make you laugh! I have lots of movie recommendations. As for books - I read things that are rarely humorous so I cannot offer suggestions. I do have lots of movies to recommend. So here they are: For oldies: Marx brothers movies - the stateroom scene on the cruise is a classic and all those horrible things
  7. Thank you all for your responses. I do have very strong esoph. spasms and that is a very big part of the problem. I am medicated for them 24/7. With all of the meds that I take for both reflux and the spasms I am still in great discomfort. I also have a hiatial hernia. I am just chock full of goodies. Further down on my trip down intestinal lane I have gastro paresis. The whole system is working to continually hurt, contract erratically and cause pain and discomfort. That was my basis for asking for suggestions. I do try to eat small meals, I do sleep with my head raised, take lo
  8. Ok so I take the standard stuff and even some not so standard stuff- the nexium, levsin, procardia and anti nausea meds. I have had botox injected into the sphincter between the stomach and small intestine and still I have reflux and chest pain ad the gastro paresis did not seem to either go away or make much of a difference. No one here is a doctor and no one is expected to diagnose any new problem, but is anyone doing anything else for severe reflux beside taking meds and eating small meals? Am I not doing something behaviorally that I should try? Is there a med that you suggest
  9. Weight gain! yes! The less I eat the more I gain! I can skip eating or eat it does not seem to matter. It is not if I gain - it is how much! I try to exercise or I just think about doing it but between fibro and scler and all the meds for reflux I am way to tired to actually do it. I will not use that OTC drug to lose weight - I do not want to add another drug to my already unbelievably large number of drugs and I do not want to have an interaction reaction. It is not worth it. So, what do I do? I figure I hate the weight and I try but when all else fails - there are peanut M&Ms.
  10. Hi JJ I just had Reclast and my doctor and my sister the doctor both preferred the Reclast as they believe that it is more effective for building bone in both hip and spine. I will not know for another year when I get the DEXA scan. I hope that they are right because the idea of one infusion for 15-20 minutes per year instead of one a month sounds fabulous to me! I did not have much of a reaction either so if it does its job it is a great success! Now I am waiting to see what my insurance company does because so far it is rejecting payment as an experimental procedure. Let the games begi
  11. No one knows why scler develops or what effect pregnancy has on the disease. Your doctor did not advise you against getting pregnant. The next step would be to consult with your OB/GYN or to get an appointment with a high risk OB/GYN and speak with them and see if they foresee any problems with a pregnancy under your particular circumstances. If none of the doctors. say that a pregnancy would be dangerous for either you or your child then go for it! You want the child and if the consensus of the doctors is that you will be ok then why not? I would read as much as I can find abou
  12. Be persistent and make sure that you take someone with you to take notes so that you stay on point and completely describe all your symptoms and get all the answers you need. The person who comes with you can note the answers and help keep you focused. Sometimes we get so caught up in all the information we forget some of it the moment we walk out of the office It is too hard to write and listen at the same time. Good luck and feel better!
  13. Rainbow, No one knows how much time they have - you can be perfectly healthy and get killed crossing the street! I am sure you have heard that one. When it is your time it is your time. Enjoy the time you have and don't stress because that is not good for any of us- no matter how healthy you are we all react negatively to that! Doctors are only practicing, they do not have crystal balls that can help them see into the future. They can and often are wrong. The choice then is ours. We can curl up into little angry balls of pain and anger or just live each day as fully as we can. It
  14. Celia, The only thing I want to add, besides the BRAT diet is to make sure you are maintaining your electrolytes. You need more than water if you are going and going and going........ We fed our babies Pedialyte when they were babies and had the runs a lot. There are other things on the market for adults to replace things you need. Be careful to make sure that you hare not just replacing water and losing other important minerals and other things. Good luck and feel better.
  15. Mother's instincts are the best indicator of problems and they can also be wrong. I would get the test so you can know for sure with what you are dealing. If it is nothing - no more nights of worry. If it is something you have caught it early enough to get the very best treatment and can forestall many complications by early treatment. It is a win-win. Good luck!
×
×
  • Create New...