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Everything posted by red

  1. red

    cold weather

    Hi all, I am having this same thing too recently. (I have only mild Raynaud's in my hands and feet, but curiously my nose and face feel cold the most - very uncomfortable, and how does one warm up the face? I find I have to cover my face with a blanket when I sleep now!) Anyway, my lungs have not been the same since I had the flu in November, it still is irritating to take a deep breath, I get out of breath and my chest hurts with any exertion and wow, when I go out in the cold, it is much worse - I have trouble breathing, get dizzy and the pain lasts for an hour or more. Have been back to the doctor again (4th time now since Nov! I am sure they are getting sick of seeing me!), was put on prednisone again which helps a lot, but now I am down to 10 mg a day and getting the same chest discomfort and lung irritation again. Am supposed to go back this week and am probably headed for another chest CT, doc says "something" is going on with my lungs. I guess I'd like to believe it's a Raynaud's kind of thing, but am fearing that it's fibrosis or some other kind of damage from the flu. Am getting very discouraged! Hoping for an early Spring, red
  2. red


    Thanks Judy T for all your warm wishes! I am in upstate New York, where today we are fortunate to be around 35 degrees F (above freezing), so we are getting pouring rain instead of snow or freezing rain. It is a welcome change from the bitter cold spell we had a couple weeks ago - Mr. Raynaud has been away for the past few days! I have rectal incompetence too -- very little warning before needing a bathroom. I also have diarrhea very often and then it is almost impossible to get to the bathroom in time. After I had my esophageal manometry (done for upper GI issues) which showed absolutely no measurable activity - my GI doctor and I discussed the rectal issues. He said I could have an anal manometry done, but he was sure it would show the same malfunction, as the two anatomical structures are very similar. He and my surgeon (for a Nissen fundoplication) both recommended I see another doctor who specializes in rectal biofeedback stimulation. I haven't gone yet because of the necessity of other surgeries (the Nissen last year, carpal tunnel surgery 4 months ago on the R which has only been partially successful and my range of motion is still limited - I am supposed to have the L carpal released too, but I am afraid since my R hand is still very stiff...) I try to control the bowel issue by not eating before I have to go out of the house. I find that when I do eat, I am almost sure to be in the bathroom within the half hour, and then I'm ok for the next few hours, so at least I can plan around availability of a bathroom! Not the best solution, I agree, but 90% of the time, it works for me for now. There was another member on the forum who had the rectal stimulation surgery recently -- hopefully, she will join in the conversation. I wish you the best for whatever solution you decide on. Let us know your progress. red
  3. I was diagnosed with crEsT a year and a half ago, and have since developed Raynaud's, finger swelling, and bilateral carpal tunnel syndrome. My diagnosis was made after extensive evaluation of a GI bleed (from esophageal erosions) that was probably caused in part by ibuprofen and Naproxyn, which I was prescribed for joint pain. I have been advised never to take any NSAIDS again. red
  4. red

    My encounter with H1N1

    Kamlesh - I am so glad you have started to feel better. Please, please take care of yourself, don't overdo and be watchful for signs of worsening. I started not feeling well, with intense headache and fever, but no respiratory symptoms, the last week of October, went to the doctors after 4 days of it, was tested for Lyme disease as I'd had a tick bite 3 weeks previously, but it was negative. After 4 more days of continued headache and fever, the cough and body aches hit. Back to dr but they said it was too late for Tamiflu to work, was put on prednisone to help with the cough and wheezing (I also have asthma) and went to bed for 4 days. After a week and a half on the prednisone, the cough and congestion got much worse, back to dr only to find I now had pneumonia. Am improving day by day now, but it still hurts to take a deep breath. I am afraid of what kind of damage has been done to my lungs. I was able to get a seasonal flu shot in early October, but the HlNl vaccine wasn't available until after I was sick. My dr also recommended I get the vaccine as soon as I am off the prednisone for a week, even though they are sure I had HlNl. The only good thing about all this is that the prednisone has done wonders for my joint pain!! To my fellow sclerodermians, take this novel flu very seriously, it is horrible, get your vaccines as soon as it is available to you! Stay healthy, red
  5. red

    Sore throat...can reflux cause this?

    Hi all! I can certainly sympathize with you all about how bad the reflux can be!. I was another one who used to sleep almost upright to try to stop the burn. And yes, oh yes, it can burn the throat, nose, and one time I swear the reflux went up my eustacian (sp?) tube and into my middle ear! Despite 2 Nexium, 1 Prevacid, multiple TUMS a day, sleeping upright and not eating for 3 hours before bedtime, I still developed aspiration pneumonia, esophageal bleeding and permanent vocal cord scarring. My GI doctor explained that while the medicines can lessen and even stop the acid production in the stomach, there are still other digestive enzymes in the reflux that can damage the esophagus and throat. The only thing that helped me was a Nissen fundoplication - I had this surgery last November, and while I still have some swallowing issues, have to watch what I eat, and take a PPI daily, I am not bothered by the reflux at all now. I'm sure the surgery is not for everyone, but if you are not helped by any of the anti-reflux suggestions and medications, you might want to discuss with your doctors if this surgery is an option for you. red
  6. Hi Sharon, glad to see you back on the forum, but sorry you are having a rough recovery. When did you have your surgery - was it May, if I remember correctly? When I had mine done, they told me I would be eating normally by about 6 to 8 weeks after, but it took a lot longer than that to progress from eating just soft foods - more like 4 to 5 months. Even now, after 8 months, I still feel very full after only a half of a sandwich, and am uncomfortable if I eat bulky foods - salads, harder meats, pizza, bagels, etc. If I overeat, I get very unpleasant intestinal cramps, bloating, gas and diarrhea - my doctor says this is "dumping syndrome" - common after gastric surgery - the stomach can't handle the volume of food so it dumps its contents, only partially digested, into the intestines. I can keep it under control if I eat slowly, stick to small meals, and chew very thoroughly. I consider it a more than fair trade-off for complete relief of that terrible reflux that I had for years. I remember well feeling painfully full after eating only a few tablespoons of mashed food. It may help to not have any liquids with your meal, wait 15 minutes after eating, then have a half a glass or so to clear your esophagus. I am hoping you are feeling better very soon! Keep us informed about your progress. red
  7. red

    Good thing!

    I'm getting comments like that at work too - I've lost about 30 lbs over the past year due to GI problems (I think some coworkers are suspecting I had a gastric bypass!), my face and hands are much less wrinkled, and I've been putting on foundation makeup on my face now because of the increased telangiectasia. I'm turning 50 this summer and people are telling me I look better than ever! LOL red
  8. red

    re Update, surgery, lung

    Hi Sharon, nice to meet you! I had my Nissen done last November. (I have CREsT, have had esophageal/gastric bleeding due to the severe GERD; also have asthma, had pneumonia a couple of times, presumably from aspiration of the reflux; however, my lung function tests are normal when my asthma is under control.) My rheumatologist and surgeon both agreed that a modified (280 degree, I believe) fundoplication was best for me as my esophageal manometry showed "absent" measurable motility. They were concerned that a full wrap would worsen my swallowing difficulties. I also had a very large hiatal hernia to repair, so I was told I had to have the surgery "open" and not laparoscopically. I had the surgery on a Wednesday, came home that Sunday, have to say recovery was rough. The incision was about 7" long, I woke from surgery wearing a large elastic binder from under the breasts to my lower abdomen, had to wear this for about a week. It was painful and difficult to take a deep breath for quite a while - maybe 2 weeks (this may have been more due to the hernia repair than the Nissen, though - hopefully you won't experience this!) Wasn't able to eat much of anything for the first week, and continued on soft foods for another 2 months, and still have to avoid raw vegetables and bulky foods as they are tough to swallow and move down my esophagus. Was back at work after 4 weeks, although probably should have listened to the surgeon and taken the full 6 weeks he recommended. It was all worth it! I am able to sleep with one pillow, through the night, without any sign of reflux. Never have any heartburn anymore. I still do take one Nexium a day -- I did try a month without it, but developed a persistent cough that my GI doctor thinks was because of "silent" reflux -- did go away when I restarted the Nexium. Before the surgery, I took twice this dose plus Zantac too, and still I had daily and nightly horrible reflux. Sorry to be so long-winded, but wanted to give you a complete picture! Are you having yours done laparoscopically? If so, your hospital stay and recovery will be much shorter, as long as you have no complications in your lungs. I do wish you the very best of luck, and will be keeping you in mind on Thursday! Keep in touch! red
  9. red

    Esophageal spasms

    Hi Margaret - I get esophageal spasms (ES) mostly when I've eaten something hard or rough, like raw vegetable (salad fixings), a too large or tough piece of meat, and sometimes my medications. I try to avoid what I can, chew very thoroughly and eat slowly, and I won't even attempt bagel, pizza, or steak anymore, not worth the pain. At worst, it's terribly painful, and even a lesser attack gives the very uncomfortable feeling of having something stuck that won't go down. Less often I get them with exertion, usually lifting. Before I had the Nissen fundoplication, I'd get ES with the more severe reflux episodes, couldn't swallow anything down during them, not even saliva. Thank goodness that's gone now! Hope you can figure out why Gareth is having his episodes. red
  10. red

    RE: hand pain

    Thank you all for your input. Penny - I liked your term "fumble fingers" - yes that's what I'm having! - and will try some of your suggestions for the kitchen work. I use both hands to drink my tea and coffee now - not only prevents dropping the cup but warms the hands as well! My primary called today to give me the official results - he said I definitely have carpal tunnel in both wrists, right moderately severe and left not as bad, probably caused by the scleroderma, and he's recommending surgery for both hands. He said he can't say for sure if I'll get 100% function back, but if I don't have the surgery, it will most likely progress to where surgery may not help at all. Susie - like you, it's gotten much worse in a short period of time, since my sclero diagnosis last August. I've had the nighttime numbness for many years, and did the splinting at night a few years ago, with partial relief. My doctor said he doesn't recommend splinting now, he feels that the morning stiffness I get will only be worsened by it, and at this point surgery would be the most effective treatment. He's referred me to an orthopedic surgeon, but I think I will check with the rheumatologist in the meantime, I'd like to avoid surgery if at all possible -- maybe Lyrica would help. Trying to grasp at straws here! Thanks for listening Red
  11. red

    RE: hand pain

    Hi, all, hope today finds you better than yesterday! Just had another few days of doctor visits - first with my primary physician, a wonderful and caring doctor - to investigate years' symptoms of carpal tunnel-like numbness - mostly on awakening, one hand or the other will be half numb, on the right it's always the thumb and first 2 or 3 fingers, but on the left it's just as often on the pinky side of my hand into the pinky. Over the years, the right hand especially is progressively having more daytime episodes as well, falls asleep during writing, driving, holding a cup, etc. The last month I've lost a lot of sensitivity in my fingertips and I'm frequently dropping things. I've gotten numbness in my feet often for the past few months too. I'm also having new symptoms of Raynaud's over the past couple of months. My doctor sent me for nerve conduction tests and an EMG on the forearms, told me it could be carpal tunnel or neuropathy from the sclero, he suspects it is a combination of both. He said we'd talk after the tests, as surgery may only partially solve the problem, and we'd need to discuss the options with the rheumatologist. Had the tests done yesterday and are abnormal, the doctor who ran the tests said I definitely had carpal tunnel, right much more than left. When I asked if any of the symptoms or test abnormalities could be due to the sclero, he sarcastically asked who told me I had scleroderma, he didn't see any sign of it! (This after having to soak my hands in warm water for 15 minutes before the testing because he told me my hands were too cold to do the tests!) When I gave him the name of my rheumatologist (a well known expert locally) he backed off on the sarcasm, but repeated that I have carpal tunnel syndrome. Am trying to wait patiently for my primary to call, but you know how that is! My questions - do the tests reveal whether it's purely carpal tunnel, i.e, can it distinguish between that and of neuropathy? For those of you with scleroderma who've had carpal tunnel surgery, did you get complete or only partial relief from the numbness? I'd hate to have another surgery only to have disappointing results! Will let you know what my primary says, red
  12. Hi I am in a minor panic here, I think I just had an episode of Raynaud's. Had been outside taking advantage of the warmer (in New YorK!) 40 degree day to shovel off some ice and snow in the driveway, came in because my feet were wet inside my boots. After about 1/2 hour, my left foot felt numb, I looked down to find it blue from about an inch above my toes and beyond. It quickly turned white, so white I couldn't see any veins in the front half of my foot. After a few minutes it started to look mottled; the foot was still cool to the touch, but I felt a burning sensation inside. It's been about an hour now, the color is normal but the foot feels throbby and achy, not actually painful but uncomfortable. When does this sensation go away? I've been having trouble with my feet going numb for a few weeks now, but never saw any color changes, had thought it was a peripheral neuropathy, since I've had carpal tunnel-like symptoms in my hands for a few years as well. I had to wear socks to bed these last few nights because my feet have been so cold, and even the tip of my nose has been cold at night recently. Diagnosed with limited systemic sclero last summer, but I guess I'm in the Raynaud's club now too. What next?! Should I make a trip to the doctor or just accept this as another expected part of this disease? Thanks for your input. red
  13. red

    Back on the good stuff

    Amanda, thanks for the laugh, I always look forward to your posts! Sorry to hear about the nausea but hope the Cellcept works for you this time around! red
  14. Hi Looking for Answers, good to hear from you again, I'd like some answers myself, am looking forward to others' comments! I've had trouble with wrist pain, numbness, tingling in my hands (for a few years), was tentatively diagnosed as carpal tunnel long before my sclero diagnosis. Was treated, with partial success, with splinting at night. Lately I've had my feet going numb as well, with pain as the numbness goes away, been told it's not Raynauds as I have no color changes. I get some relief from the pain with the lidocaine patches that Jeannie mentioned. None of my doctors will even consider giving me anti-inflammatory meds because of my recent history of esophageal and gastric bleeding, although years ago I felt great on Vioxx, was on it a few years before it was taken off the market. Yesterday, I had only my 2nd rheumatologist visit since my sclero diagnosis, tried to pursue a conversation if the wrist, hand and feet symptoms were sclero-connected but got the brush off and was told it was probably osteoarthritis! :unsure: Back to the (doctor) drawing board! Not sure where to go now, let us know how your visit with the neurologist goes! red
  15. red

    Pneumonia again

    Hi Margaret, (Questions are never dumb! :) I had a Nissen fundoplication last month which has all but eliminated the horrible reflux, but before the surgery, the reflux was so bad that nearly every night, shortly after I fell asleep, I would be awakened by the reflux coming up. (This was despite Nexium 2x/day, plus Zantac at night, and being propped up on 5 or 6 pillows.) On the good nights, it would just be heartburn, but on the bad nights I could feel the reflux in my windpipe and the bronchial tubes - it would make me choke, cough, and it would burn with each breath. Sometimes this would last for a few days, burning every time I coughed up more of the reflux out of the lungs. I suppose the acid or fluid causes inflammation in the lungs, and probably an infection if one isn't able to cough it all back out. (Sorry, sounds gross as I read this back to myself!!) red
  16. red

    Pneumonia again

    Margaret, I am so sorry that Gareth is having such a bad year and nasty bout with pneumonia. I get bronchitis nearly every year, usually after a cold that I can't shake (I have asthma as well which probably contributes to this), but I had pneumonia 2 times similar to what you've described - no cold symptoms but quick onset of fever/chills, headache, difficulty breathing - my doctor felt those pneumonias were due to aspiration of reflux. I've also had ulcers and I regret to tell you they do hurt quite a bit. I'm hoping Gareth is feeling much better soon, keep us posted! Do take care to get as much rest as you can yourself to stay healthy! red
  17. A warm hello to you all! I am now 3 weeks post-op from having a Nissen fundoplication and hiatal hernia repair, and am happy to report I'm already seeing positive results. Some background - Over the past couple years, I've had increasingly severe reflux, including bleeding esophageal erosions, aspiration pneumonia, and daily (especially nightly!) reflux even with Nexium 2x/day and Zantac before bed. During the pre-op evaluations, I was diagnosed with scleroderma due to findings of absent esophageal motility, telangiectasia, along with joint issues I've had for years. My rheumatologist agreed (a bit reluctantly because of fear of worsening my swallowing issues) that I needed the surgery but with his recommendation the surgeon planned a modified, "looser" Nissen. Definitely not an minor surgery - it was necessary to do it "open" and not laparoscopically because the hernia was so large - my stomach was more than halfway through the diaphragm into the chest -- so I was in the hospital for 5 days, and the recovery at home has been slow as well. But today I'm on my 3rd day after stopping the Zantac and reducing the Nexium to only one a day, and I have not had any sign of reflux at all! Am still eating soft foods, but am to slowly advance my diet as tolerated. On the negative side, I have noticed some advancement of some sclero symptoms, whether it's because of the stress from the surgery or if I would have had them anyway I don't know. The IV's and blood draws in the hospital were difficult, the nurses/techs felt that the sclero had hardened the veins; the skin over my fingertips and knuckles feels different - not hard but thick with reduced sensation, and the skin indents easily without rebounding; my entire torso has been quite itchy, and while the incision (from bra line to just above the navel!) is healing ok without signs of infection, it is very lumpy and the scarring is significant already; I have also noticed more red spots on my face and one eyelid appears retracted since the surgery (hey, where's the other half of my facelift!) Maybe it's too early to say for sure, but it's very encouraging to have such a reduction in the reflux symptoms already! Am hoping this surgery was worth it. Counting my blessings this Thanksgiving holiday and hoping the same for you, red
  18. red


    Hi Looking4answers, If you live anywhere near Albany NY you might want to consider seeing Dr. Lee Shapiro at The Center for Rheumatology (518) 489-4496 (he's on the list of scleroderma experts that jefa linked, although the phone # is different on the link). I've been told he is the leading sclero expert in upstate NY, and is a coordinator of clinical trials of investigational drugs in this area. He just diagnosed me with systemic sclero sine sclero - other than some telangiectia (spelling?) on my face and feet, I have no skin involvement at all, definitely no thickening, and I don't have Raynaud's either. I have mainly esophageal, stomach and intestine problems, fatigue, and sore and stiff joints. I understand that it's a difficult disease to diagnose (my doctor tells me I've probably had it for 8-10 years!) but there's no need for any doctor to be rude, and you shouldn't put up with it! I know it's hard to fight back when you're confused and emotional and just want some answers, I've been there too, still am some days. You've been given some great advice here, these people here are wonderful -- inform yourself by reading up, sharing and discussing...and look around for a supportive doctor who can help you! Keep in touch and let us know how you're doing. red
  19. Thank you all for your warm welcomes! Yes, soaring eagle, I have great doctors for which I am very grateful, especially after following the doctor's postings this week! My primary doctor is wonderful, we've known each other for 30 years, he's taken care of me through some awful asthma times (lots worse when I was younger), and has tested me twice because he suspected RA - I have lots of achy, noisy joints, fatigue, sometimes low fevers, but never swelling - but came out negative, also tested a few times for hypothyroid, again neg. He was not surprised at all when the sclero diagnosis came, he said he always suspected something autoimmune was going on, now along with the reflux, it all makes sense. He tells me my rheumatologist doctor is probably the best in the Northeast USA (if you google sclero experts in the Northeast you get only my doctor and one more in New York City.) The sclero diagnosis is a bit scary, and I worry about the future, but am trying to focus on the positives - I'm in very capable hands, my echo and CT showed no lung or heart involvement, and for now at least, no Raynaud's or major skin signs. I am in awe of all of you, how courageously you are facing much worse problems than I have! It's great to be among you all, red
  20. red

    Foot Problems

    Hi all, I too, have loss of padding on my feet and that "walking on pebbles" sensation, along with stiffness in the feet especially first thing in the morning. I was surprised to learn from my rheumatologist that this was part of my sclero (I have limited sclero, mostly GI symptoms, no Raynauds nor skin hardness). I hadn't even mentioned the feet soreness to the doctor, but he saw on my history that I had had bunion surgery (both feet, on the pinky toe side) and asked about the feet. I've been prescribed lidocaine 5% patches, which I put on both of my feet along the arches before I get out of bed -- has helped a lot! I'm not sure if these patches would work for those with Raynaud's, as the patches feel quite cool when first applied...but maybe these would help some of you! A new fan of comfortable but unfashionable shoes!, red
  21. Hi all, I am a newbie here, diagnosed with limited systemic sclero sine sclero this summer. smurfette I am sorry to hear about your reflux and esophageal symptoms, I can sympathize fully because my problems are quite similar -- severe reflux, esophageal and gastric bleeding, large hiatal hernia for years. I'm on the strongest dose and combination of anti-acid meds there is, strictly follow all the lifestyle changes, but still get breakthru reflux/heartburn. I even had pneumonia last year that my doctor suspects was due to aspiration of reflux. I have asthma as well so this was quite serious and after my recovery they started talking surgery. My GI specialist and surgeon had already decided on a Nissen fundoplication for me but while doing all the pre-op tests, my esophageal manometry test showed "absent" measurable motility - my surgeon immediately referred me to a rheumatologist to see if I had sclero, which after MORE tests(!), confirms I do. All the doctors are in agreement now to go ahead with the surgery - they will repair the hernia as well as do a "partial wrap" of the stomach which should reduce the reflux, unfortunately I may have worsening of my swallowing difficulties, but at this point am willing to trade the reflux for a soft diet -- I'm kind of there already! The surgery is scheduled for early November, I will let you know how I make out! By the way, while this is the first time I have posted, I have been reading these forums since my sclero diagnosis, I love the supportive concern and great suggestions everyone has, this is a great place and you all are wonderful! red