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Everything posted by red

  1. red

    Update on bowel problems!

    Hi Summer, sorry to hear you've suffered so much with this for so long, hopefully you will have some good options through the surgeon. My mom had a colostomy for years (unrelated to sclero - she had an abscess because of diverticulitis which destroyed some of her colon) but she always said it was most convenient because she never had to use a public toilet! The daily care became very routine and she never had any problems with the stoma. I have GI problems too, with bowel urgency, and never travel in the car without a pad on the seat and an extra change of clothes just in case, but am fortunate that it only happens a couple times a month or so. How long do you have to wait to see the surgeon? Wishing you well :emoticon-hug: red
  2. red

    News about transplant

    Susie, I'm so sorry to hear of your troubles. Please know we are all there for you, you are in our thoughts! I've gained weight on prednisone too, and could stand to lose 30 - 40 lbs. If it will help you to have diet pals, I'm in with Jeannie on this! Please let us support you in any way we can, red
  3. red

    Sleep Apnea and CPAP

    I love the image of you and your husband with matching CPAPs, now that's togetherness!! :happy1-by-lisa-volz: :girly1-by-lisa-volz: My pulmonologist recommended a sleep study last Spring, I blew her off. No way I have sleep apnea, I have no problem sleeping, I can fall asleep at a long red traffic light! She insisted I should have one done, I told her I'd consider it, then left the office and didn't give it another thought..Then my rheumatologist told me this month, after I complained again about excessive fatigue, that I should have a sleep study too, said sleep apnea is also associated with high blood pressure, which he newly diagnosed me with. Like you, Jeannie, I don't snore, wake up with gasp, etc, but I do immediately start dreaming as soon as I fall asleep and always wake up in the middle of a dream, 5 or 6 times a night. So I spent Halloween night in an awesome sleep study costume complete with wires, electrodes, tubes in my nose and breathing straps on my chest and stomach! (They should have at least given me some trick-or-treat candy!) As usual, I fell asleep almost as soon as the lights were turned off, dreamt the night away and left thinking what a waste of insurance money. But now they've called and want me to come in for a follow up visit, wouldn't give me the results over the phone, I guess that means it was abnormal, I'll find out on the 17th and will let you all know... All I know is my husband is already putting up with being randomly struck with my hand splints during the night <_< ...wonder what he'll say if I need the CPAP too!! Trying to hang in there, red
  4. red

    hand and feet

    Hi Liz, I have the beginnings of finger/hand curling, I can straighten the fingers out but then they recoil to a loose fist when I'm relaxed or upon awakening in the morning. I've been fitted with "resting splints" - to wear on alternate nights to extend the fingers, has been about a week, so it's too early to tell how much they are helping. After a night with the splints, my fingers are quite stiff, but are straightened more than they would be without them. I've also been taught hand exercises that I do at home, I am hoping to keep my hands as flexible as possible for as long as possible, but I've lost quite a bit of strength in both hands. Also have had surgery on both wrists for carpal tunnel syndrome, so the loss of strength could be a result of that as well. My feet are stiff too, have bunions, but the toes are not curling as yours are. I've tried orthotics - padding and shaping inserts for my shoes - but didn't really help. They are recommending surgery for the bunions but I'm putting that off - I'd need to be in a wheelchair for at least 2 weeks if I have surgery -- I wouldn't be able to use crutches with my hands, wrists, etc. Have you been to physical or occupational therapy for your hands? Perhaps a surgery consult for your toes? Hopefully you can get some relief soon. Thinking of you and wishing you well, red
  5. None of us are alone, because we have each other! Hugs to all! :emoticon-hug: red limited systemic sclerosis: GI, cardiac, larynx, joint/muscle involvement
  6. red

    Fecal Incontinence/Bowel Control

    Hi Jeni and all, I did take that first step and made an appointment with a rectal/colon specialist, will be seeing him Nov 24! I knew if I posted that promise yesterday, I'd have to go through with it!! I'll let you all know how it goes. I've already had a colonoscopy and am due for another next summer, but at least for that you're sedated - no embarrassment there! It's a whole 'nother ballgame relating bowel problems face-to-face. And the worst part about it is that I blush super easy, which makes me feel even more embarrassed that everyone knows I'm embarrassed!! You'd think at 51 years old, I'd be too old to blush like a teenager, but it's the truth. Oh well, maybe it makes me look younger... red
  7. red

    Fecal Incontinence/Bowel Control

    Hi Jeni, welcome to the forum, sorry about your health issues that have brought you here. I am diagnosed with limited scleroderma and I have the fecal incontinence as you described. I have very little, maybe only a minute or so of warning, and if I've not gotten to a bathroom in that time, I can't hold back a bowel movement. I've had accidents in stores, in the car, at work, you name it -- terribly embarrassing, but yes you should mention it to your rheumatologist. I don't know if the other diseases you mentioned can cause the loss of bowel control, but your doctor can advise you. My doctor said it's definitely due to the scleroderma in my case, he said when someone has esophageal dysmotility as bad as I have, the rectal muscles are invariably affected as well. He's recommended seeing a rectal specialist but I haven't yet built up the courage to go, dumb I know, I am resolving here and now to put aside the embarrassment and make the appointment tomorrow! Good luck to you and know that we are all here for you! red
  8. Hi Mando and all, I never got insomnia per se, but one PPI I took years ago gave me horrific nightmares, always shortly after I went to sleep, waking me up repeatedly during the night. It was right after the 9-11 attack on the World Trade Center. At first I thought it was a coincidence, but finally stopped the med after about a week, no more nightmares, then tried the medicine again after another week and they started right back again. I think the doctor thought I was crazy when I told him about this side effect but I was really afraid I would have a heart attack, the dreams were so vivid and terrifying! He did change me to another PPI (a capsule) and I never had the problem again. I can sympathize with you about the fatigue, I dozed off all the time at work, and continue to do so at home now that I'm out on disability. Hope your doctors can find some solution for you. Enjoytheride - I get those 2 kinds of fatigue too just as you described. I am also taking Vitamin D 1000 u a day which my doctor recommended, but without any relief. How much did you take? Am going for my yearly appt withrheum in two weeks, I plan to ask if I can try plaquenil or some other remedy. red
  9. red

    Disability finally

    Congratulations Sam! Wow, it is very discouraging to see you've been fighting this, with a lawyer no less, for 7 years!!! I just took the disability plunge in August, after getting a not-so-good echo report. My primary has been encouraging me for 2 years to go on sick leave due to worsening GI issues with 30 lbs weight loss; joint and muscle pain; fatigue; bilateral carpal tunnel with only partial improvement after surgeries; vocal cord fibrosis; asthma and now diastolic dysfunction because of cardiac fibrosis. He says I certainly have enough medical evidence to qualify, but even he said it's a tough road and takes a long time to get approved even when it's clear you have a well-defined disability. I'm fortunate that my employer is covering me with full salary until next June (guess they were tired of waking me up every afternoon when I fell asleep on my desk!!) but after that I don't know how I can manage financially if I haven't been approved. Did you find your lawyer helpful? Any suggestions on how to be successful in getting approved? Hope you're not getting the flu or even a cold, and congrats again, red
  10. red

    I'm new and confused...

    Hi and welcome to the forum, although sorry you're having the problems that have brought you here. I was diagnosed with limited scleroderma (crEsT)2 years ago, even with a negative ANA, and it sounds like you have a lot more going on than I have! For me, the diagnosis was made largely due to my swallowing/esophagus/stomach/intestinal/rectal dysmotility, along with voice hoarseness, fatigue, painful joints, telangiectasia on face (which a couple of my doctors had previously diagnosed as rosacea). I have only very mild tightening of skin on my face and across my wrists and the knuckles of my fingers, and have bilateral carpal tunnel syndrome. Since my diagnosis, I've developed mild Raynaud's and early signs of cardiac fibrosis. I don't have any calcinosis or sclerodactyly (the C and S of CREST), so yes a diagnosis can be made without having all the criteria. I'm sure many will chime in on this, the signs and symptoms of scleroderma are very unique and very different among us. Even more important than the diagnosis itself, however, is treatment of your symptoms and difficulties, as well as monitoring you for new problems. Are you under the care of a rheumatologist, preferably one experienced in scleroderma, and how are your doctors treating your GI and lung issues? Looking forward to getting to know you, red
  11. red


    Hi Andrea, I can't help you with the finger issues, I have only mild Raynaud's and no skin or cuticle issues. I have however been prescribed prednisone many many times due to my asthma, but the drug also helps the joint pain and fatigue tremendously for me. I feel better within 48 hours of starting - but my starting dose is usually 30 mg a day and I taper off gradually from there. I lose the pain and fatigue benefit any lower than 15 to 20 mg a day. My rheumatologist is very adamant about getting me off the steroid as soon as possible, I've asked why they can't treat the pain and fatigue with it long term, as it works so well for me, but he says the side effects of long term use, especially at a relatively high dose of 20 mg/day, are prohibitive. Side effects/risks - renal crisis, GI bleeding (and I've already had this twice), bone density loss, risk of cataracts... he went on and on so I guess I need to believe him!! Also a major side effect - weight gain -- oh yes! It's a guaranteed 5 to 10 pound gain for a 2-3 week course for me, which I can never understand because I'm much more active when I'm on it, you'd think I'd lose weight! Bummer! Hope your doctors can adjust your med regime so you're more comfortable soon! red
  12. red

    Heart to heart?

    Hi, I was diagnosed with limited scleroderma 2 years ago with mostly GI and joint issues, and my first 2 ECHO's were normal, but the last one showed "early diastolic dysfunction" - not sure if this is just one or both ventricles, the doctor explained it to me as the heart not relaxing completely between beats, but the cardiac output is still normal. No treatment was given, they just said they will watch for any worsening at my next (every 6 months) ECHO and make recommendations if and when they need to. Did your doctor start any med or recommend further testing? red
  13. red

    Help Please.

    Hi again Andrea,I am a homeschooling mom too! My 2 older children went thru school without issues, but my youngest struggled with dyslexia and by 4th grade, was so far behind her classmates, she was in tears daily. When the school district denied, for the 3rd time, our application for special ed help, we pulled her out and started homeschooling to give her the one-on-one help she needed. She's now in 8th grade and has raised her reading ability up to around the 4th grade level, a major accomplishment considering she was only at a late first/early second grade level at the end of her 4th grade year. I applaud you for your decision to homeschool your children, no easy task even when healthy!! Even if your children need to go to public or private school for this year while you attend to your health issues, I'm sure that you have given them a wonderful experience and the necessary educational groundwork for them to succeed! Please let us know your blood work results, and hopefully your doctors can address your pain and spasm issues quickly. Our thoughts are with you! red
  14. red

    Help Please.

    Hi Andrea welcome to the forum! Sorry to hear you are having such health issues. As for the joint pain and body aches, I can sympathize totally with you. My problems started during my last two pregnancies - in 1996, I had a first trimester miscarriage, became pregnant again quickly, but started reflux, gallbladder attacks, and vomited every day til delivery, gained only 10 lbs throughout the pregnancy. I was fortunate to have a healthy, wonderful little girl! Unfortunately, the joint pain began with a vengeance shortly after her birth, and hasn't stopped since; Vioxx helped a lot but was taken off the market after a couple of years. The joint pain, fatigue, GI problems continued, without a diagnosis, until 2 years ago, when I had 2 GI bleeds which forced the issue. After lots of tests, I was diagnosed with systemic scleroderma, even tho my blood tests are negative. Last year I had H1N1 flu, then pneumonia, and since then have had the body and muscle aches, and much worsening fatigue. I've tried many meds but the only pain med that works well is very sedating, and with the fatigue in the background, I take a lot of naps! At least, my children are older than yours - 25, 21 and 13 years old -- I can't imagine trying to take care of your young crew feeling as you are now! I hope your rheumatologist can sort things out for you, and make you more comfortable. While we all hope you don't have scleroderma, it is very difficult to have such problems and not have a diagnosis. Know that we are here to support you as you continue through this journey! Please take care and try to get the rest you need, very difficult with your babies! Do you have family or friends that can help you with household chores and childcare? Looking forward to getting to know you, red
  15. red

    Loss of voice

    Hi all, this morning I woke up with only a hoarse whisper of a voice. Other than a cloggy feeling in my throat and a mild cough, I feel okay, certainly no raging cold symptoms! This happened last month too and lasted around 3 days. My voice started changing about a year before I was diagnosed with crEsT (Raynaud's appeared later)- my doctors thought it was due to the reflux. I've had a fundoplication and no longer feel any reflux, although they say I still have "silent" reflux - when I've tried to stop the anti-reflux meds (against medical advice - I know, not a smart thing, but the reflux was gone after the surgery, I didn't think I needed it anymore!) I got more nighttime asthma attacks and worsening of the voice. I just completed pulmonary function tests and a consult with a pulmonologist recommended because of a bad winter with flu, pneumonia, increased asthma and still have a feeling of tightness in my chest, but passed the tests with flying colors! The doctor did double my reflux med because she thinks the surgery has "relaxed" and I'm getting more reflux. Both the pulmonologist and the rheumatologist referred me to an ENT because of the chronic hoarseness of my voice, which has worsened over the past year, haven't been to my appointment yet. I have had my thyroid levels checked, they are normal. Maybe coincidentally, I've developed more pain and stiffness in my hips and shoulders over the past 6 months, and I think the chest tightness is part of this -- all of this was much better when I was on prednisone over the winter, but quickly returned after I tapered off it, am now on Celebrex which does help some, but not nearly as much as the steroids did. Anyone out there dealing with voice issues? Is this just another part of the sclero? Thanks for listening! It is so frustrating not to have a voice, it helps at least to vent in writing!! red
  16. red

    Loss of voice

    Was evaluated by the ENT on Friday. They did a flexible tube video scope (thru the nose and down the throat - not pleasant at all but not as bad as the esophageal manometry, thank God!) My vocal cords are scarred and hardened - the doctor felt both were attributable to the scleroderma and the reflux. No polyps, infection or anything that can be easily treated. The damage is most likely irreversible, and she said she would discuss with my rheumatologist to see if any med could be recommended to prevent any further damage. In the meantime, she recommended another few days of voice rest, and advised no caffeine, chocolate, alcohol, mint or acidic juices, etc. to minimize reflux and more irritation to the throat. Have progressed from just the whisper to a croaky kind of voice, hopefully will improve more over the weekend. Am very discouraged, the body is just not being very dependable lately! With the voice issues, joint pain, diarrhea and running to the bathroom, breathing difficulties, not to mention dr appointments!...it is getting hard to get through a week of work without missing days. I am fortunate to have a job that I love with only 6.5 hours a day, a very understanding and sympathetic boss, (as well as a bathroom right in my office!), but am getting to the point where I need to consider a medical leave and/or long-term disability. Am planning to have a sit down with my rheumatologist and/or my primary soon and try to sort things out...Meanwhile I'm up at 4 a.m. writing this because I can't sleep!! Thanks for letting me vent!! Hoping you all are getting a better night's rest than me, red
  17. red

    Rheumatology visit

    Hi Debo, sorry you are having the joint pain lately! I also have limited scleroderma - mostly esophageal and rectal dysmotility, mild Raynauds, joint pain but negative blood work. Like you, too, I've had severe lifelong asthma, well before the CREST diagnosis. The doctors have been very hesitant to put me on the usual antiinflammatory pain meds (like ibuprofen, naproxen, etc) due to the GI stuff. They put me through 2 months of physical therapy - 1 month of just ultrasound, heat and massage, etc then another month of mild resistance exercises, and I also had 3 more cortisone injections - one shoulder, both hips. The heat treatments felt great but other than that, not any appreciable relief, so they finally put me on Celebrex. Have taken it for about 3 months now - it does help some but I was feeling a whole lot better on prednisone. They tell me prednisone is not a long term option because of side effects, though. Perhaps your doctors could put you on a short course of prednisone and see if it helps? Hoping you get some relief soon, red
  18. Me too! Maybe we can charter a plane to bring all us U.S. folk over to England! red
  19. red

    Loss of voice

    Thanks all, for your posts. Janey - the cold drinks do make it worse, I've found that hot tea soothes the voice the best, thanks for the suggestion. I saw my primary doctor on Monday - there is no sign of strep or other infection, put me back on prednisone (seems to be a magic drug for me - helps everything!) and got my ENT appointment moved up to this Friday..which of course means more and more tests...but hopefully some answers. Thanks for being there everybody. Nobody understands like a fellow sclerodermian! red
  20. red

    Hiatal Hernias....

    Tally up one for me too, in both the hiatal hernia and the elastic waist pants columns! Mine was huge - most of my stomach was pushed up into the chest cavity, causing lots of bloating and chest pain when I ate. Once you have one, it doesn't go away - I had surgery to correct the hernia, which helped a lot, but still have to eat small meals (and I still wear the elastic pants!!) :D red
  21. red

    Shoulder Injury

    I'm with you barefut! I've been on the receiving end of 7 cortisone shots in various places - shoulder, hips, wrists...and it doesn't matter how smooth they go in - they hurt! Also, makes me remember a job I had, many years ago - I worked in a medical office as an assistant. One of my tasks was to help hold patients down while they got their cortisone injections (as you can imagine, I'm not exactly a petite woman). I literally have seen grown men cry getting their shots, so I'd say you did really well! I'll bet your doctor never got one himself... Heal quickly, red
  22. I had surgery about a year and a half ago to fix a large hiatal hernia and also to reduce reflux (open modified Nissen fundoplication). My hernia was so large that most of my stomach was in the chest cavity and pressing against my lung. I also have cREsT and my esophageal motility test showed absent measurable activity. Because of this combination, I had severe reflux, bleeding esophageal erosions, worsening of asthma/difficulty breathing. All 4 of my doctors -- GI, thoracic surgeon, rheumatologist, and my primary doctor -- agreed I needed the surgery. The surgeon said it needed to be done "open" (not laparoscopically) because the hernia was so large and also because he needed to modify the wrap of my stomach (the Nissen part) so that it was not so tight that I'd have worsening swallowing problems. The surgery was completely successful for me - I no longer have any signs of reflux - no pain, heartburn. I still need to eat slowly and in smaller amounts so I don't get uncomfortable. I have to tell you though, that it was major surgery with a tough recovery period -- I spent 5 days in the hospital, the incision was from the bottom of the bra line to my navel, painful to take a deep breath for at least 2 weeks, and eating was difficult at first - only soft foods for a few months. Rough, but I have no regrets, would do it again if I needed to, the relief from the reflux has been well worth it! You didn't say what problems you are having but if you are considering the surgery, I would suggest that you talk with a surgeon with experience in scleroderma patients, especially if you have esophageal motility problems. red
  23. red

    Long Term Disability

    Hi all, also sending my condolences in your hardships getting disability approvals! My doctors are also starting to encourage me to go on disability, but I'm very discouraged hearing your difficulties! I looked on the Social Security website but couldn't find scleroderma listed... Does anyone know where it is documented as a compassionate allowance? I did find sclero in the List of Impairments and it seems like I would qualify, but how does one "prove" they have severe fatigue, pain or malaise (which most us definitely have!!). Have plenty of GI tests to prove sclero involvement, with weight loss to back it up, and have documentation of bilateral carpal tunnel, shoulder arthritis, hip bursitis, goiter, asthma, and am going for pulmonary testing next week as I'm having increasing signs of lung problems....but, my goodness, Craig, if you've been denied, I certainly would be too!! And how do you all pay bills for 2 years while you're waiting for SS to come through!! Very discouraging. red
  24. red

    Just diagnosed

    Hi Susie! Welcome to your new family! We are here to listen to your fears, support you, lend advice and yes, we DO understand! It sounds like you have a great rheumatologist - thorough and understanding -- I'm sure he will take good care of you! I was diagnosed a year and a half ago, negative blood tests too, and very little skin involvement.. I do have the joint pain, fatigue, and carpal tunnel, recently developed Raynaud's too; but was diagnosed with limited sclero mostly due to severe GI dysmotility issues...I've had asthma all my life but recently the breathing issues are more resistant to my asthma meds and have been sent back to the rheumatologist from my primary to see if the worsening is damage from the sclero. It is scary, I feel for you! Keep in touch and let us know your progress, your questions. Lean on us for support, we are here for you! red
  25. red

    ANA negative result!

    My ANA and other blood tests have always been negative too (except for elevated sed rate), but have been diagnosed withsclero based on clinical symptoms and GI tests. I've been on inhaled steroids for 30 years for asthma, and also am on oral prednisone several times a year as well -- I'm wondering if long time steroid use causes changes -- maybe the steroids suppress the inflammatory response measured in the blood tests? Does anyone know? red