red

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Everything posted by red

  1. Thanks for listening and your support! Am trying to get past the anger phase - As I saw on a sweatshirt in a farmer's store: "It's time to put on your big girl boots and get over it!" Although it didn't help that the rheumatologist's office didn't call me yesterday - time to take control of things myself!! I'll be calling them after they open this morning, and also I'll call my eye doctor and schedule an exam. Maybe I'll give the pulmonologist a call too and see if they can move up my appt. On second thought, maybe I shouldn't be trying to get over the anger - it is a great motivator and seems to be giving me a boost of energy. I feel empowered!! :woohoo: (I'll sleep later after all these exhausting phone calls )
  2. At my first consultation with my rheumatologist, he asked me directly about bowel symptoms, urgency and incontinence. I blushed my way through the entire consult, but honestly asked his questions, as yes, I had been experiencing lots of "accidents" of not getting to the bathroom quickly enough. Still took me a couple years to get to the rectal specialist he recommended :P But I finally did, and am having some improvement with added fiber, a change of one of my medicines to lessen diarrhea, and biofeedback therapy. There are treatments out there, don't wait any longer!! Good luck to you!
  3. Hi Lou, welcome to our family! I am so sorry you've gone thru so much difficulty and time being correctly diagnosed and treated. You will get much empathy from the sclero club here, as I think a lot of us, (maybe most of us? :glare: ) went years without a proper diagnosis, going from doctor to doctor until we finally found one or two who took the time and pieced our symptoms together and came up with systemic scleroderma. Personally, I had 10 years of symptoms before I was diagnosed with limited sclero - starting with reflux, gallbladder dysmotility, diffuse joint pain and fatigue, hair loss...I remember going to the doctor once telling him the reflux over the past night was so bad I felt the acid dump into my ear as well as my lungs, I barely had a voice as my throat was so burned - the doctor looked at me like I was crazy and said he didn't think it was possible for the reflux to go into my ear, and again told me two weeks later, when I had a perforated eardrum from infection, as well as pneumonia, that it was just a coincidence and the infections weren't from the reflux. It wasn't until I started vomiting blood that they finally took me seriously (or maybe they were tired of hearing me complain! :o ) and sent me off to a GI specialist, which started my diagnosis journey. I am no stranger to steroids, having had lifelong asthma which has been worsened by the reflux, and I've had allergic reactions to a couple of antibiotics too, so I have been on prednisone many times. The highest dose I've been on was 60 mg a day for 3 days, then tapered down - prescribed after an anaphylaxis attack. I sympathize with you completely - the high steroid dose was horrible - I barely slept for those 3 days, my heart was pounding out of my chest, and I felt like climbing the walls, could only pace the floors and wish that the crazy thoughts would go away. I feel so badly for you that you went through what you did!! After my scleroderma diagnosis, I was cautioned that if I had to take prednisone, the dose should be as low as possible, as high dose steroids can precipitate renal crisis, like Joelf stated. When I have asthma flares now, I'm only given 30 mg tops until breathing is better, and quickly tapered down. Unfortunately just this weekend I've been diagnosed with sarcoidosis, I've not yet gotten to the rheumatologist to discuss treatments, but I know steroids are first-line therapy, don't know what dose or if maybe there are different meds to treat it. Keep posting and let us get to know you better! I'm glad to hear you're under the care of competent and caring doctors! Red
  4. Hi all, if you are interested in watching Social Security's hearing on Compassionate Allowances for Autoimmune diseases .... you can get a live webcast of the March 16th meeting (on the Social Security Administration's website). (Although, I have to say, I've never attempted to view a webcast :emoticon-dont-know: , hopefully it's just as easy as following the link!!) Hope this hearing will help those of us struggling to get our disability through Social Security streamlined and approved. We'll see! Red
  5. I was able to watch most of the webcast yesterday, although I fell asleep after lunch and missed a bit of it! :glare: My wonderful teenage daughter set up my laptop, complete with earphones, for me so I could lounge in my recliner and view the webcast all day. She brought me cups of tea, then lunch, and afternoon snack and even prepared dinner for the family...I was quite pampered for the day (I probably gained 5 pounds yesterday alone!) :blink: We can't replay the webcast yet, but since there are the 6 previous compassionate allowance hearings available to watch at our convenience on Social Security's website (from SSA's home page, just search for "compassionate allowances" and go to the Compassionate Allowance home page), I'm sure that at some point yesterday's hearing will be available. The hearing consisted of presentations from various rheumatologists and autoimmune associations - they had lists of autoimmune diseases, outlined symptoms, progression, prognosis, current treatments available as well as clinical trials and other research being conducted. They had 4 patients (1 each with multiple sclerosis, lupus, diffuse scleroderma and Sjogren's) give their testimony about their disease, including delays in diagnosis, progression of disabling features, their difficulties in day-to-day living, as well as their frustrations navigating through Social Security's "hoops". The belief that since many people with autoimmune disease "look" good, some of their disabling symptoms, such as pain and fatigue, are minimized or ignored by SSA, was emphasized. The goal of the hearing was to identify diseases, or specific aspects of those diseases, especially those with few effective medical regimens available to reverse or treat the condition, that are considered so severe that documentation of such would automatically quality a patient for permanent disability. Specifically for scleroderma, for example, it was suggested that a rheumatologist's diagnosis of diffuse scleroderma, or pulmonary hypertension, or limited scleroderma with severe GI features, should be alone sufficient to qualify for a compassionate allowance, as these manifestations of the disease are so debilitating. Don't know how long Social Security's process of evaluating this data, and coming up with additions to the Compassionate Allowance list is, but at least there is hope that there will be some progress towards this goal. Hope today finds you well, and Happy St. Patrick's Day to you all! Red
  6. Yes, it's really coming!! No flowers here yet for me, but the Canadian geese and red winged blackbirds have come back, so the winter must be really over!! :happy-dance: Time to start my indoor seeds! :emoticons-yes:
  7. Oh my, Amanda, I guess I will have to call the doctor today and see what they want to do, maybe they can schedule the echo for this week. Out of curiosity, I measured my BP and pulse first thing this morning after I came downstairs (slowly! as I'm very stiff in the mornings) and it was 130/80 with a pulse of 115! Have taken my meds now and am waiting to see what the readings are after an hour or so, and will call and discuss it with my rheumatologist's nurse. I am noticing my rings are getting very tight again in the mornings too, and I know that can be a sign of heart failure, so now I have myself worried. I tend to rationalize all my symptoms -- maybe the pulse is higher because of increased pain, or the new med...maybe the finger swelling is just the arthritis flaring...maybe I'm just out of shape now that I've been very inactive lately...maybe I just worry too much... I have been stressing because I am having biopsy surgery this Friday on my elbow lumps. My primary says they are just rheumatoid nodules, but when one hears the word biopsy, you just can't altogether get the worry of cancer out of your head. I suppose it's time to dump all of this on the rheumatologist and let him figure it out, instead of guessing. Will let you know what the rheumatologist says, but I'm sure it means more tests! Red
  8. Oh Amanda, I'm sorry! Mine were only mildly painful for the first week as they were developing, then extremely painful for the next week and a half when a couple of them opened up. I started the amlodipine during that first painful week, in addition to Cozaar which I've been taking a few months. The first couple of days of the amlodipine, when my feet were very noticeably warmer, the pain was terrible, and it gradually lessened after that. I think my feet had to have been somewhat numb from the decreased circulation before, the numbness must be gone now (I think I'd like some of the numbness back!). While the ulcers are still very tender, it's nothing like it was when they first opened up. I'm wearing "memory foam" slippers which are very cushiony and comfortable, and trying to stay off my feet as much as possible. Unfortunately I think I'm having a bit of a side effect from the medicine - my heart rate has bumped up from the 80's to over 100, even though I'm not very active these days. Am also due for a echo followup as I have developed diastolic dysfunction over the past year, hope there is no worsening, probably going to have to have a stress test and/or heart catherization. There's no end to more and more tests the doctors can think up, is there? Been there, done that with the GI testing :o , good luck to you! Hope your doctors can give you some relief very soon. Red
  9. Hi Amanda, I'm sorry your ulcers aren't healing, and to have the GI issues in addition!! I have dysmotility and have the same feeling of food lumping in my esophagus. I did have a "loose" fundoplication 2 years ago, which decreased the reflux wonderfully, but probably did make it more difficult for food to get into my stomach. Am due for another endoscopy soon and they will check to see if I have any strictures. I stick to softer foods, in smaller amounts, but like Jeannie I still don't lose any weight!! (I guess I just eat more often and I do like my icecream!!) I sympathize with you completely with the foot ulcers! I hope you are not in too much pain with them. I developed multiple toetip ulcers around a month ago, was put on amlodipine which has definitely helped warm up my feet and decreased the Raynaud's symptoms elsewhere too (fingers and nose). The ulcers are still there, but haven't increased in size, are less painful now, and are starting to harden, not scabbed really but I can feel hardening underneath them, hopefully that's a good sign! I'm being meticulous about keeping my feet dry, covered and warm, even wearing socks during the night. I wonder too how long it will take for them to go away, but I guess I should be grateful that at least the bad pain is gone now. Right here with you, Red
  10. Hi Craig, I can't find scleroderma listed as a compassionate allowance disease on SSA site either. However, you may be interested to know that SSA is having a hearing, "Compassionate Allowances Outreach Hearing on Autoimmune Diseases" Wednesday, March 16 2011ยท 8:30am - 5:00pm Location Sheraton Baltimore City Center Hotel 101 West Fayette Street Baltimore, MD The hearing will focus on autoimmune diseases, including lupus, scleroderma, multiple sclerosis, rheumatoid arthritis, and vasculitis. I found out about this hearing on the Social Security Site - if you search ssa.gov for "compassionate allowances" and go to "Compassionate Allowances Website Home Page" - at the bottom of the page it mentions this hearing. (NOT a very easily found announcement!) I don't know if it's open to the public or not. Elsewhere I found, "If you live near the Baltimore/Maryland area and are available to attend the hearing to share your story about scleroderma, please e-mail James Edrington at [email protected] or call (410) 966-2153 by Noon on Monday, March 14, 2011. If you do not live near the area or cannot attend the hearing, you may still e-mail James your story." (Moderator note: We do not allow email addresses within forum messages but are making an exception for this.) Hopefully, as a result of this meeting, scleroderma will be added to the list of compassionate allowances and make it easier for us all to get approved for disability. I've been denied by Social Security for disability too, am waiting for my first appeal hearing. Red
  11. Had 3 month check up with rheumatologist yesterday, very discouraging. Showed him the nodules on my arms and fingers which are now too numerous to count, must be over 25 now, with a couple new ones on my knees. My primary diagnosed rheumatoid nodules, the PA at the rheumatologist's office last month said calcinosis, but xrays have ruled out calcinosis, and my blood work, including sed rate and rheumatoid factor were normal. Rheumatologist said he frankly doesn't know what they are, wouldn't take a guess and is scheduling me for biopsy surgery. While I was there, I showed him my feet, which over the past week have developed small, painful, red spots over most of my toe pads. We talked about the Raynaud's, which I had thought was relatively mild, only rarely do my toes or fingers turn blue, but probably at least a few times a week the toes get white. My entire feet are mostly always cold, as is my nose, and I have one fingertip that is either cold and white or red hot, never in between, with the fingernail separated and broken off halfway down which refuses to grow back in. He said I'm definitely having reduced circulation to the extremities and switched by high blood pressure medicine from losartan to amlodipine. Any one else on this med? When I woke this morning, the tips of my toes are beet red, and 2 of the spots have opened. I can't believe the pain, I feel so bad for all of you who've suffered with digital ulcers, it has to be even more painful on fingers. :( It's only 6 degrees outside this morning so will spend another day inside and keeping warm, I am turning into a hermit this winter! I thought the Groundhog said an early Spring!! Thanks for letting me vent! red
  12. Hi - I had my fundoplication 2 years ago, am completely heartburn free, immensely more comfortable now!! Try to relax and let others take care of you, best of wishes for a speedy recovery! red
  13. Hi Summer, sorry you are having bowel issues, I can sympathize completely. I've had stool incontinence for a couple of years, much worse when my doctors had to double my Nexium dose and added Zantac because of increasing voice hoarseness and cough due to reflux. Although the meds have helped the voice issues, they made my stool quite loose and watery and almost impossible to control daily leakage. Also, I only get a minute or so of warning before a bowel movement, so it is imperative for me to stay near a bathroom. After much procrastination because of embarrassment, I finally went to a rectal specialist that my rheumatologist recommended, said he had a lot of experience with his scleroderma patients. The specialist started me on a daily teaspoon of over-the-counter fiber (added to my coffee - very little taste alteration!) and also, at the time I had been taking pain medication but it was taken off the market here in the US -- he prescribed a different pain med which has a known side effect of constipation. These two changes have helped make my stool more formed, less water, and instead of having 10-12 small, watery bowel movements daily with leakage in between, I usually have only 2 or 3, mostly in the mornings, so I can more safely plan an afternoon trip out of the house and be reasonably confident of not having an accident. I still have days of diarrhea, maybe 3 or 4 days a month, which may be due to diet, but I haven't figured out a connection yet to what I've eaten to cause it -- I should keep a food diary! I do have to say that, especially at first but still continues now, I have a lot more gas and intestinal cramping, but it's a reasonable trade-off for me to have more control and confidence leaving the house, traveling in the car, etc. I've also started rectal muscle biofeedback training. This involves a probe inserted in the anus, and the doctor measures the strength of the muscle as I try to squeeze it. Then I had 2x a day of squeezing exercises to do, and another measurement of muscle strength after a month. I had a significant increase, they said around 20% improvement! I'm to continue this for another 2 months, and then I go back to the doctor to discuss my options. At the first visit, he said that if there was little or no improvement after 3 months, there are surgeries that can be done to either reconstruct the anus muscle and strengthen it, or electrical stimulation devices that can be implanted to control the muscles. At this point, though, I'm very happy with the progress so far, and probably wouldn't consider any surgery, but I know others on the forum have and I'm sure will post their experiences. Sorry to be so lengthy but I wanted to give you some hope! I put off going to this specialist for 2 years because I just accepted my situation, thinking little could be done and that it wasn't worth the embarrassment. I was totally wrong, the doctor put me right at ease and just a few simple changes have made a world of differnce for me. Hope your doctors can give you some relief, red
  14. I've always enjoyed jigsaw puzzles, we always have one going on our dining room table, same as my dad always had one going during my childhood (much to my mother's dismay when she was planning a big family get-together!). When family come to visit, they frequently sit down with us and put a few pieces in while we chat. Birdwatching is another favorite hobby which doesn't take a lot of energy, and is very enjoyable, especially in the winter because the birds so eagerly await the morning refill of the feeders. It's very endearing to hear their lively chatter just outside our windows. As it happens, a change in my health over the past couple of months has prompted a new hobby for me. I've had an increase in pain, stiffness and fatigue, and a combination of 2 new medicines have made me mildly dizzy and my brain is a bit fuzzy lately. I was resting in my recliner again, bored but without enough energy to get up, and I noticed a book my teenager was reading on the table beside me, so I picked it up and started to read -- the book "Twilight". Certainly geared to a young audience, but an easy and pleasant read, an interesting but not too complicated storyline (I can never follow mysteries, too convoluted!). Also, it gives my daughter and me a common interest to discuss, and we've watched the first movie as well. Best thing is, there are 3 more books in the series, have just started the 2nd book! I'm hooked! Looking forward to reading what hobbies others have tried...
  15. A couple weeks ago, I asked my primary doctor to check my feet - one was mildly tender at the outside of my heel, but with my hip issues which limit my mobility, I couldn't get a good look. I was horrified to hear I had a half inch long and very deep split, which was dry but the surrounding area was red and inflamed, and I had several more minor splits on both heels. He gave me a topical antibiotic to use, which has cleared up the redness, but the splits have not healed (no pun intended!!). The pads of my heels are very hard and have not softened, even with 3-4x a day lotion applications. This winter especially my feet are always cold, but I didn't realize how numb they must be, as I can't feel any discomfort from these splits at all now, and over the last few days I am developing a red, depressed area at the back of one heel, higher, where the skin is soft - I think it is a pressure sore developing. The skin is intact, but feels a bit squishy when I press it. Rheumy is already aware of the Raynaud's and cold feet. I am on an ARB (medicine for high blood pressure) which he said helps to relax my blood vessels and should also help the Raynaud's. I always wear heavy socks, even to bed, and sometimes padded slippers at well during the day, to keep my feet warm. I don't take baths anymore, too difficult to get in and out of, so I take only quick showers. I'm now having my teen daughter, bless her heart she takes great care of me!, check my feet daily, and she gives my feet a good massage with lotion several times a day. I did a dumb thing yesterday though -- have a portable heater which I placed at my feet, felt wonderful but I fell asleep and woke with a mild burn on the top of my feet and lower legs. :emoticon-bang-head: Any suggestions on how to take care of my feet so these areas heal up? My next rheumatologist appt isn't til the end of the month, I'd like to be able to tell him what I've tried already if they still haven't cleared up by then. Thanks! Keep warm and well! red
  16. Hi Lynn Sorry to hear about your nose bleeds; they do sound very scary! You should definitely follow up with your doctor. They must have already put a scope up your nose when they did the cautery, and as ETR pointed out, your doctor will be able to deal with any bleeding during the examination. Perhaps you have multiple areas of problems, and the first cauterization missed a few spots. Also, have you had recent bloodwork done to rule out any platelet deficiency or clotting problems? I had lots of nosebleeds when my sclero symptoms first started; certainly not as bad as yours, mine were only annoying. Always on the left side, it bled during sleep, sometimes when I exercised, and lots of times when I ate (very unappetizing, especially for my family!!)... It was the same time I developed lots of the telangiectasia on my face and nose; I always assumed there were more up my nose. Anyway, for the last couple of years they've become very infrequent, and now that I think of it, I haven't had any since I was prescribed high blood pressure medicine last Novemeber. Is your blood pressure high? Hope they get resolved quickly, red
  17. 2 weeks ago, seemingly overnight, I developed a hard lump, about 1/4 inch, near the end joint of my pinky finger on the palm side. Since it was bruised-like in appearance, and mildly tender, I assumed I must have hit it or pinched it, although I don't remember doing so; it hasn't changed or gone away yet. Last week, while my daughter was helping me dress (my hands don't cooperate with bra fastening anymore), she told me I had two bruised areas about 2 inches up from each elbow - they both have quite large and firm lumps under the skin, more than an inch across, again, just a little sore when I press them. I showed them to my primary last week when I went for a blood pressure check, and he said that the elbow lumps were "rheumatoid nodules" but he thought the finger lump was just bruised from a pinch. Today I've found another pebble sized lump near my R elbow. Curiously, my elbows, along with my knees, are the only joints that don't hurt me. Before this, I've only had one quite painful lump on my thumb knuckle, it opens occasionally and leaks a whitish fluid, but always heals up quickly afterward. I've always figured it was calcinosis, but the rheumatologist says it is a synovial cyst. I do have a few painful "bone spurs" in my feet per xray. Does anybody know if bone spurs and calcinosis look similar on an xray? Am wondering if this is just another common part of the sclero package? My next rheumatologist appointment isn't until February, but am starting to worry about this rather sudden development. Would there be any treatment other than surgically removing them anyway? Thanks for listening, red
  18. Thanks all, for your replies - and Shelley - thanks for the laughs, you are too funny! You and miocean remind me of my oldest daughter, who as a child was always trying to sneak a good whiff of gasoline when I filled up my tank, and yes she was a champion pimple popper and sunburn peeler too! I myself prefer the smell of freshly cut wood. Back when I was able, I helped my family with cutting down trees and splitting for firewood. I am pretty good at identifying the type of wood just by the smell! My family calls me "wood-crazy" as I still love to sniff the woodpile. Since my primary didn't seem too excited about the lumps, I've decided to ignore them until after the holidays. If they've gotten worse or more widespread by then, I'll call the rheumatologist and see if he wants to move up the February appointment. It makes sense that these bumps are related to arthritis as I've had quite a flare up of joint pain over the past few months. I am already on an anti-inflammatory med which helps a bit but I think I'm ready to try something different or stronger. Stay warm everybody! This morning we have wind chill factors below zero and a fresh few inches of snow blanketing upstate New York. Pretty but no way I'm going out today! Red
  19. Here in Upstate NY (near Albany) we are at about 30 degrees - had freezing rain yesterday, snow predicted for today, although that's better than the 7 to 10 degree cold snap we had last week -- when it's that cold it takes my breath away, and I find when I get chilled lately, it takes hours for me to feel warm again. Am contemplating hibernation until Spring! I have a portable electric heater which warms my feet and legs up nicely, and my daughter has crocheted me a pair of fingerless hand/forearm warmers. Along with my heating pad for my back and hips, am very comfortable in my recliner, and have a nice view of our woods and birdfeeders. We are visited by bright red cardinals, colorful woodpeckers and bluejays, delightful chickadees and yesterday even had a large flock of wild turkeys forage across our lawn pecking at seed that the other birds have knocked to the ground. And it's beautiful to watch the snow softly fall knowing you don't have to venture out of the house! Shopping is done and only need to wrap presents now. My husband and family are very supportive, they've spread the word that I'm staying in for the Holidays this year, but any and all are welcome to visit us at our home. My son will be home from college soon and has offered to give the house a good cleaning for me. Life is good! Wishing you all warmth and wellness, red
  20. Congratulations, you're doing fantastic! :emoticons-yes: red
  21. Hi Nildasus, you have come to the right place, welcome! I have cREsT with bowel incontinence too, tried, unsuccessfully!, to hide this problem from my family and former co-workers (I can no longer work because of this disease). My family knows about my "code brown" issues now and they are very understanding about my need to stay home when I'm having a bad day, or the importance of making a shopping visit brief or checking out where the bathroom is upon arriving at a new place. My daughter is very vigilant about making sure I have a change of clothes with us and a disposable pad for my seat when we travel in the car, just in case. I first told my rheumatologist about my incontinence at my diagnosis two years ago and even though I was very embarrassed about discussing it, he was very matter-of-fact about it as he told me it was a common problem in scleroderma patients. He referred me to a rectal GI specialist, but it has taken me 2 years to build up the courage to go!! I saw this specialist 2 weeks ago, and again was put right at ease talking with this doctor. After an exam, he told me I had a very weak anal sphincter typical to scleroderma, and also possibly a torn muscle due to a forceps delivery years ago that was not sutured completely. He advised a teaspoon a day of a dissolvable fiber supplement, added to my morning coffee, to add bulk to the stool - so far I've found this helps to reduce the leakage, but definitely has increased gas and cramping, hopefully that will lessen as I get used to it. We also set up an appointment to start biofeedback training to strengthen my muscles. I'll have 3 sessions about a month apart each, then a reevaluation of the muscle tone. He said if these treatments don't help appreciably, there are surgical options we can discuss. I have to echo what the others have said - don't try to figure this out on your own, talk with your doctor or find another one with whom you're comfortable discussing the issue. A treatment that works for one person might even worsen the condition for another. But do know there are understanding doctors out there and treatments available to try. And there are lots of us fellow sclerodermians here who will listen and support you and we don't hide anything from each other!! Looking forward to getting to know you, red
  22. Hi barefut, I do hope that today you are feeling a bit better. I had quite a teary day yesterday too - I think a combination of exhaustion, sadness (first major holiday without both parents - my dad passed away this summer, mom has been gone 4 years now), and frustration, because even though I am not working anymore, I still can't seem to get anything appreciable done around the house. I think sometimes we just need to let our emotions out, have a good cry, accept our limitations, and get on with the day, even if that means just getting in the recliner for the rest of the day. On the positive side, though, my family is very supportive and I didn't really have to do anything for Thanksgiving dinner except show up at my sister-in-law's and relax. Most of my kin is very understanding about my home's disarrayed appearance too, except now I have a new son-in-law who is kind of a "neat freak" (to quote my daughter!), so I am trying to step up the housecleaning but in the end he'll just need to accept me for who I am! Shelley - I love your speed cleaning tips (and I need that sign about the urge to clean)! I spend a lot of time in my main floor bathroom (bowel issues!) so I do prioritize to keep this room as clean as possible, as well as my large eat-in kitchen, where I entertain most guests. Beware to those who venture further in my house! My den is affectionately referred to as "the clutter room" as it is most convenient to stuff it full of overflow from the living room when we have company. I almost always have a large jigsaw puzzle in process on my dining room table, so I use this as an excuse for not clearing off and cleaning the rest of the area ("we're not eating in that room anyway...")... you get the idea. Online shopping has also been a great tool for me to reduce energy expenditures. I get in my comfortable chair, with a cup of tea by my side, and can shop for the holidays on my laptop, chat with my family members by phone or computer messages... I take advantage of gift wrapping if the price is reasonable, and I even do a lot of my non-perishable grocery shopping this way .... Have to remember to get gifts for the mail and delivery people too, as they are frequent visitors to my front door! Yes, it is easier said than done trying not to overextend ourselves, but those who know us do understand and love us anyway. I think we are harder on ourselves than others are, and in that regard we really do need to give ourselves a break, and a pat on the back (figuratively if we are too stiff to reach!) for the little things we can accomplish each day. More flowers for you !! red
  23. Had my followup appointment with the pulmonologist to review my sleep study. As I suspected, it was "mostly normal" - she said I had just a few "hypopnic" (shallow and slow breathing) episodes, when O2 saturation fell to 90%, but I never got below the 90% which she said was the cut off for diagnosis of sleep apnea. We discussed my chronic fatigue issues, which she felt were most probably due to combination of scleroderma, pain and the pain meds, but thought it might be beneficial to get a neurology consult as a "fresh and new perspective". I am also having increased difficulty swallowing, speaking (over the past year), and walking with a newer (past few months) sensation of weakness in upper legs/hips and especially my neck and shoulders. I'm relatively ok in the mornings, but by noon or early afternoon, I'm done in by the fatigue and weakness sensation, and by evening it hurts just to keep my head up. Both my rheumatologist and primary physician have addressed my complaints only with increasing my Celebrex and pain medications, which I think have only made me more sedated. I asked specifically if Plaquenil might be helpful for me, and the rheumatologist even agreed it might be a good choice, but wanted to delay this until after I had my next GI followup (next week) and more of my cardiac issues were explored and treated. I started medication for high blood pressure couple of weeks ago and am due for another ECHO soon to see if there is progression of my diastolic dysfunction. In the meantime, I feel like I'm turning into a couch potato and I spend a good 12 to 13 hours out of 24 sleeping! :emoticon-bang-head: I love my current doctors and trust their care, but can't help wondering if there isn't something more that could be done for me. Anyone had success in treating fatigue through a neurologist's care? The pulmonologist wouldn't give me a script for it, but she mentioned Nuvigil might help. Thanks! red
  24. Hi all, thanks for your replies, I know that there's no easy answer for the fatigue. I have been tested for thyroid disease countless times, even before the sclero diagnosis, because my initial symptoms, years ago, were difficulty swallowing and fatigue, along with menstrual irregularity and joint pain. Results are always "borderline low", and sed rates are usually high. I do have asthma as well so the doctors attributed the sed rate to the asthma previous to the sclero diagnosis. I don't know if they've checked CK levels - I'll need to remember to ask them at the next visit. I know they are considering a Sjogren's diagnosis now, ENT doctor, speech therapist, and the rheumatologist all mentioned it as a possible cause of my voice and swallowing difficulties. The rheumatologist, at last visit, said my mouth was on the dry side and talked about a med that would increase saliva, but said he wanted to wait as he thought the medication might have some cardiac side effects. I did ask if he thought there could be a neurological problem, but he said he didn't think so. As he is one of the leading sclero specialists and clinical investigators in the Northeast, I have to trust his opinion, but it's so hard waiting all this time for them to figure it out. I have my GI followup next week and I'll see what he has to say. Guess I'm not a patient patient!! red
  25. Susie, congrats for losing 4 lbs, a great start!! :emoticons-yes: I've started eating better with a sensible breakfast (used to be just coffee!), now having oatmeal with half a banana. They say it gets the metabolism going more with a good breakfast..we'll see. Keep up the good work, we know you can do it!! red