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Shelley Ensz

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Everything posted by Shelley Ensz

  1. Shelley Ensz

    Support for partners

    Dear Maz, I'm thinking of you today and sending warm thoughts your way.
  2. Shelley Ensz

    Hi everybody! So nice to see others like me.

    Hi Jennuwhine, Do you have any word on your referral yet?
  3. Shelley Ensz

    New member..Alone and a bit afraid

    Hi Steve, How is it going for you? Do you have your appointment set up yet?
  4. Shelley Ensz

    Interstitial lung disease and Scleroderma

    Hi Ron, Yes, that's absolutely a very official way to get an accurate oxygen saturation reading, but three of our members, including me, just virtually fainted at the very thought of taking our sats that way all the time. Just out of curiosity, do you recall if your wrist draws showed a substantially different reading from the (finger) oximeter(s)?
  5. Shelley Ensz

    Interstitial lung disease and Scleroderma

    Hi Ron, I've had pulse oximeters (and even wrist blood pressure devices) not work during an attack of Raynauds. It can definitely be a problem getting accurate readings with circulation issues. It's important to make sure you, and your hands, are warm and not attempt any readings during a Raynauds attack. You can also clip the oximeter on to an ear. That said, I also get Raynauds in my ear lobes, so ear readings might also not be entirely reliable for everyone all of the time. I had Raynauds after a day surgery a few years ago, which is nearly unavoidable with the combination of medications and the walk-in freezer settings in many recovery rooms. They were reluctant to release me with zero sats, but I pointed out I obviously had fine sats and that Raynauds was already documented, and thus normal for me. So beware, readings of zero can create some awkward situations with you needing to explain that you are still really alive. 92 is still acceptable but it's not bouncing off the walls terrific, like higher readings, including the elusive but still idealized 100%. It will be good to see what your evaluation shows. Meanwhile, it's time to follow the classic advice for single people with scleroderma: Stay warm, and keep circulating!
  6. Shelley Ensz

    Interstitial lung disease and Scleroderma

    Hi Ron, Those tests definitely need interpretation, don't they? It sounds to me, with my dire lack of medical training, like pretty standard findings with scleroderma lung involvement. By normal sats, do you mean entirely normal normal (at rest), or just 88 or above? (The cut off for oxygen supplementation.)
  7. Shelley Ensz

    Saw my sclero doctor last Wednesday

    Hi Quiltfairy, I'm delighted you have started a treatment that is reducing your Raynauds. I had a marvelous fourth and got to see some great fireworks!
  8. Shelley Ensz

    Comic relief.

    Kathy, we are always reasy for more funny stories, whenever you are!
  9. Shelley Ensz

    I have to report one of my care workers.

    Hi Quiltfairy, I'm sorry this has occurred and it will be good for you to get it adjusted for the future. I'm not horribly surprised by it, though. There don't seem to be many standards (if any) for training cleaners in most positions. I've been surprised to watch even hospital housekeepers at work, using techniques that really raised my eyebrows! Ah, and I just found an article to back up my personal observations: Hospitals Reap Rewards for Focusing on Quality Cleaning. A scary quote, "The lack of training and focus on cleaning standards combined with the pressure to clean quickly sets hospitals up for not only poor patient satisfaction scores, but cross-contamination and an increased risk for hospital-acquired infections (HAIs), Babcock added." So you may want to be concerned at home, and downright frightened in most hospitals.
  10. Shelley Ensz

    Scleroderma affecting my Sex Life

    Hi Dee, The medical term for painful intercourse is dyspareunia. Your issues sound significant, especially with bleeding. See the Mayo Clinic article on this at http://www.mayoclinic.org/diseases-conditions/painful-intercourse/basics/definition/con-20033293 It would be a good idea to get a thorough exam with a gynecologist, and then also to report this issue to your scleroderma expert, but likely there is no different treatment if it is somehow caused by scleroderma or its complications. Also be sure to maintain a close physical bond with your partner, no matter how many work arounds you need to employ. Counseling can also help restore affection whenever physical impairments are throwing a damper on things, which I mention for others who might stumble across this thread. It sounds like you are still keeping the home fires burning. ; )
  11. Shelley Ensz

    Saw my ENT

    Hi All, There's an interesting way to try to figure out if dizziness is caused by ear crystals or something else. I have typanosclerosis (an autoimmune ear disease) and dizziness, also. However my dizziness is caused by orthostatic intolerance and not by ear crystals. You see, ear crystals cause dizziness when laying down, or even rolling over. But orthostatic intolerance causes dizziness when getting up or when standing for too long. In orthostatic intolerance, the blood pressure drops upon arising. Therefore anyone experiencing chronic dizziness should really pay attention to precisely what position, or other situations such as heat or anxiety, triggers it for them (if any) as that can speed up diagnosis and reduce visits to unnecessary specialists.
  12. Shelley Ensz

    Are there any younger sclero patients here? (30s?)

    Hi Trinity, I'm glad you've found us and that you now know how much it is you don't know. This is one disease where self-education is absolutely vital to know even what questions to ask your doctor. Sometimes they just need to mention that amputation is a potential "treatment" on the horizon. They are especially likely to bring up that topic if you are doing anything at all that could be making your illness worse, such as smoking, alcohol use, caffeine, street drugs, not avoiding cold and keeping warm at all times, not properly managing blood sugar, high stress, medications with vasoconstricting side effects, or not following all of their instructions. I've known people who have had several amputations before making necessary lifestyle changes, and then again, some never do. If by any chance you are not following *all* of your doctors instructions to the absolute max, then amputation might be a very high likelihood, especially when combined with any type of scleroderma. Our rule of thumb is that whenever any of us are inclined to be noncompliant or self-destructive, it is a good idea for us to start (or continue) counseling to learn tools and techniques for enabling self-love and establishing and reinforcing new and better habits. Most unfortunately, with some illnesses, including scleroderma, it is possible to do absolutely everything right, and still suffer amputations. Sometimes people get discouraged by that idea, and take it as meaning they shouldn't even try. But of course, surrounding yourself with great support and encouragement to be as healthy as possible under the circumstances, and getting the best medical advice possible, can make a world of difference and at the very least keep unavoidable damage to a minimum. Please continue to find the specialists that you need to help address your health concerns, and the support you need along the way.
  13. Shelley Ensz

    Saw my ENT

    Amanda, thank you for the explanation of otoconia (ear crystals). I'm continually amazed by how much I can learn around here every day, and that chalks up as one of those cool new things to know. Quiltfairy, I'm sorry for your injuries. Thank you for explaining them. That sounds like an awful lot to deal with, on top of the effects of scleroderma.
  14. Shelley Ensz

    Waiting on diagnosis

    Hi Khuenner, Welcome to Sclero Forums. I'm sorry you have lupus and concerns about scleroderma As Amanda and Jo have suggested, I recommend you see a scleroderma expert as not doing so could delay diagnosis for years. It's just so rare that there are very few experts, and it is a tough illness even for experts to identify.
  15. Hi Ron, That's a normal selection of blood tests for scleroderma. Who knows, at some point blood work might provide additional clues. But overall, clinical symptoms are more important both for diagnosis and for disease management.
  16. Shelley Ensz

    X-ray false positive for pulmonary fibrosis

    Hi Quiltfairy, I have tympanosclerosis, which is an autoimmune ear disease. The scarring it causes creates an optical illusion of water on the ears, and it can fool very experienced doctors. So maybe you have water on the ears...or maybe you have some scarring. It will be interesting to hear what the ENT has to say. Read more at Autoimmune Ear Disease.
  17. Shelley Ensz

    New member..Alone and a bit afraid

    Hi Steve, Just to make sure, you used our ISN Guide to Scleroderma Experts, right? The reason I ask is because thousands of rheumatologists claim to be scleroderma specialists, but real experts are very few and very far between, because it is such a rare illness. However, most rheumatologists list scleroderma as one of their specialties, even though the average rheumatologist may only see one or two cases in their entire career. It's just that it is one of the rheumatic diseases so it is often just listed automatically, and does not necessarily mean the sort of expert we are talking about. The field of real experts is very small, so they network together and collaborate on clinical trials. Most people need to go out of state for an expert, and it's not uncommon to have to wait months for a first appointment.
  18. Shelley Ensz

    New member..Alone and a bit afraid

    Hi Steve, Welcome to Sclero Forums. I'm sorry you have symptoms of scleroderma and positive blood work. I strongly recommend that you consult a listed scleroderma expert to garner an opinion you can rely on. Perhaps it might be too early for any diagnosis, so you may need to be followed awhile before anything is settled. But in the meantime, anyone with your risk factors should see about nailing down life or disability insurance beforehand. It's not that you are going to need those benefits right away, just that they will probably be impossible to get once anything becomes official.
  19. Shelley Ensz


    Happy Birthday, Quiltfairy!! And thank you for the kind words for all your friends at sclero.org.
  20. Shelley Ensz

    Teeth and Scleroderma

    Hi Ron, Dentists are likely to give you prices for implants or bridges, and perhaps not quite mention less expensive alternatives, such as flippers. I have a flipper, which is also known as a partial. They are particularly wonderful with scleroderma because when you lose more teeth, you can simply have them added to your existing flipper, for cheap. Odds are your dentist will discourage it, extolling the many virtues of the far more expensive options, but I've been tickled pink with my flipper for several decades. I even had them specially made without any tooth rests (because a tooth rest yanked out an adjacent tooth, yes, I'd probably have lost it anyway, but I'm happier not taking that risk, thank you.) They will probably tell you that you'll need to take them out to eat, which to me defeats half of the purpose, but I am able to chow on steak and corn on the cob and everything with no problem, and certainly no breakage. Even cheaper but definitely not a long term solution are temporary teeth or even extremely cheap "instant teeth" (neither of which I can vouch for, as I haven't tried or used them). The problem with missing but unreplaced teeth, that I've discovered, is that 75% of my perceived intelligence and 90% of my perceived sexiness escapes through the air tunnel created by a visible missing tooth, and I really don't have the wiggle room to overcome either loss. Another thing your dentist very likely won't tell you is that there are such things as "dental discount plans", which are not the same as dental insurance (which usually put a very low cap on total annual coverage, but strangely most of the discount plans, which are lots cheaper, don't put caps), that you can get for probably as cheap as $10/month in the U.S., no qualifying and no waiting and no ongoing commitment necessary, that typically give about 50% off all dental prices. I even had one dentist that wasn't a provider for my plan but agreed to match the discount prices so that I'd stay with them. My plan also functions as a discount prescription card if you have prescriptions that aren't covered by a prescription plan. In short, don't assume that you are entirely out of options, yet, as you join our special scleroderma toothless wonder of the western world club!
  21. LIST OF APPROVED AND UNAPPROVED ALTERNATIVE THERAPIES FOR POSTING SUPPLEMENTS ** You should always consult your physician before taking any supplements/herbs/or using natural remedies Approved for Posting Aloe Vera—Okay, but only when mentioned as hand cream or ointment. Acidophilus—Fine. It is mentioned on our Bowel Involvement page. We advocate for scleroderma intestinal problems using 1 to 2 tablespoons of yogurt with live cultures per day, every day. Arachidonic Acid—Okay to mention, but it is a catch-22 in that some arachidonic acid is vital for good health, but too much increases inflammation. Thus, discussions about it should be tempered with the message of “balance”. Flaxseed oil capsules Glucosamine—Helps make cartilage stronger and more rigid and there is some research that shows glucosamine supplements relieve pain in some people with osteoarthritis of the knee. Possible side effects include nausea,diarrhea, and increased blood sugar (people with GI problems or who are taking diuretics may especially experience problems with nausea and diarrhea. See Mayo Clinic: Glucosamine for more information). Probiotics—Okay but cannot mention specific products or brands. Slippery elm - Okay for heartburn and sore throats. Not Approved for Posting Aloe Vera—Not okay when promoted as a drink or "cure" for scleroderma. Emu Oil—No studies yet support its usefulness in humans (2009). See Dr. Weil. Papaya extract—Not allowed when promoted for scleroderma per se. It may be dangerous for pregnant women, may stimulate the immune system (which is often ill-advised with scleroderma), and can cause esophageal problems. Protandim - See Pursued by Prodandim Proselytizers. VITAMINS **No vitamin, herb or mineral should be promoted as a “cure” for scleroderma, nor can discussions of specific brand names or links to sites that sell herbal supplements be allowed. All Vitamins Are Approved for Posting Vitamin A—It is fat-soluble and can build up in fatty tissues if used to excess. Vitamin B6—Can cause nervous problems if used to excess. Vitamin B12—Is often helpful for pernicious anemia (anemia is a possible complication of scleroderma). Vitamin C—When taken with iron it can help the absorption of iron. Also, too much of C will just be excreted as will most of the B group. Vitamin D—It is listed on our site, as Vitamin D deficiency may be a cause of scleroderma or other autoimmune diseases. (Also see: Causes of Scleroderma: Vitamin D Deficiency) Vitamin E—Vitamin E can cause hypertension if taken in excess. MINERALS **Calcinosis is NOT caused by too much calcium in the diet. (Also see: Calcinosis) Approved for Posting Calcium—Should not take calcium supplements within 4 hours of thyroid medication. Iron—Should only take this with doctor's permission or instruction, as iron accumulates in the system. Magnesium—Can be useful for heartburn and constipation; is the main ingredient in Milk of Magnesia and many antacids. Liquid Magnesium—Okay to mention, but without any brand name. HERBS **"Natural"does not mean that it is harmless or without side effects or interactions with other prescribed medications. Things that are healthy for healthy people are not necessarily healthy for someone with systemic scleroderma. Approved for Posting (with cautions as noted) Parsley—Can be a diuretic. However, prolonged use or abuse of any diuretics without medical supervision can lead to dehydration, which can cause kidney damage and an imbalance in normal levels of electrolytes (e.g., sodium and potassium), which are vital to heart, kidney and liver function.When electrolytes are out of balance, you’re at high risk for heart failure and sudden death. If you have a medical condition for which diuretics are prescribed, you would be much better off following your physician’s recommendation than trying to treat yourself with alternative remedies. Gingko Biloba—Can help prevent Raynaud’s. Ginseng—Ginseng is another famous tonic product. It comes from a species in the genus Panax, whose name comes from the same root as “panacea” meaning“all-heal." Used regularly, ginseng increases energy, vitality and sexual vigor, improves skin and muscle tone, and builds resistance to stress. Dr. Weil often recommends ginseng to chronically ill patients and to those who are debilitated or lacking in vitality. But he also says to make sure that no medication you're taking is contributing to high blood pressure. (Steroids, birth control pills, decongestants, NSAIDS and diet pills can raise blood pressure. So can over-the-counter medications containing licorice root, guaraná, kola nut, yerba maté, ginseng and yohimbe.) See Dr. Weil: Herbs for Hypertension. In general, these would not be recommended for systemic scleroderma patients since high blood pressure is a frequent complication of the disease. Senna, is sometimes suggested for use as a laxative, HOWEVER, senna is an "irritant" laxative (seeConquering Constipation Naturally by Dr. Weil) and other methods of dealing with this problem should be considered first, especially the intake of ample water and fiber in the diet (not one without the other; too much water alone can cause diarrhea, too much fiber without water can cause constipation.) Senna side effects: If senna is used in high doses or for prolonged periods of time, it can lead to reduced potassium levels in the body. Low potassium levels can result in muscle weakness and potentially dangerous changes in heart rhythm. Chronic, long-term use of senna may also result in aching joints, weakened bones or muscles, and loss of weight due to decreased appetite. Cases of "clubbing" or rounding that occurs at the ends of the fingers have also been reported from taking senna for long periods of time. Not Approved for Posting Black Cohosh—Overall,the jury is still out on whether black cohosh reliably relieves menopausal symptoms (and, if so, how) as well as whether it may pose any long-term dangers. As far as side effects go, the herb may occasionally cause mild digestive distress. Studies in rats have not found any significant toxic effects at 90 times the therapeutic dosage over a six-month period, but studies have not looked at long-term effects in other animals or humans. Even if black cohosh relieves your hot flashes, there’s no good evidence to show it protects against the postmenopausal bone thinning that leads to osteoporosis as hormone replacement therapy does. See Is Black Cohosh Safe to Take? by Dr. Weil. St. John’s Wort DGL/Licorice—Licorice contains a chemical called glycyrrhizic acid, which is responsible for many of the reported side effects (see below). DGL (deglycyrrhizinated licorice) has had the glycyrrhizic acid removed claims to reduce the dangers, but there are no definitive studies to back this up. Adverse effects include sodium and fluid retention, low potassium levels, and metabolic alkalosis, irregular heartbeats, heart attack, kidney damage,muscle weakness, or muscle breakdown. Licorice has been associated with acute pseudo-aldosteronism syndrome, paralysis, metabolic alkalosis and seizure. Licorice has been reported to cause high blood pressure, with symptoms such as headache, nausea, vomiting, and hypertensive encephalopathy with stroke-like effects (for example, one-sided weakness). High doses of licorice may cause temporary vision problems or loss. Ocular side effects have been reported. Central retinal vein occlusion has been associated with licorice. A case report exists of licorice-induced hypokalemia associated with dropped head syndrome(DHS). Neem (any products where Neem is the primary active ingredient)—All of the research we could find has been done with animals only; no human research showed that it is efficacious. OTHER NATURAL FOOD REMEDIES Not Approved for Posting Quinine—Although it seems to be used frequently for leg cramps, recent studies have found some very serious sides effects ranging from blindness, pulmonary edema, and death. Here's a short statement from MedicineNet:“Quinine has been used outside of malaria as a remedy for fever and pain and to treat and prevent leg cramps. Prolonged administration of quinine may produce toxic symptoms such as deafness, disturbances in vision, skin rashes, and digestive upsets.” Grapefruit Seed Oil—Do not post anything about using grapefruit seed oil on the message board at the present time. It is definitely NOT to ever be discussed as a cure for scleroderma and we are currently looking for more research to support its use as a digestive aid. Caffeine, chocolate, peppermint or ginger can all exacerbate problems with heartburn or Raynaud’s for those with systemic scleroderma. Also, these things may never be discussed as a cure for scleroderma or associated ailments (e.g., ginger for migraines). (Also see: Raynaud's) Approved for Posting Manuka Honey—This is a rare exception to our “brand name” rule. Manuka honey is not just“regular” honey and there is research to indicate it may be useful for healing of skin ulcers. Fish Oil—Useful for arthritis and reduces inflammation. Green Tea—An article discussing its possible benefits in preventing autoimmune disease has been posted in the sclero.org news room: Green Tea INTERNATIONAL CLAIMS OR CLAIMS FOR CURES Approved for Posting DMSO—OK when mentioned for Interstitial Cystitis as a treatment or cure; and with some disclaimers, for use for scleroderma; listed in our Clinical Trials section of the main ISN website MSM—OK when mentioned as an anti-inflammatory; MSM is a form of DMSO (which see). India—There is some scientific merit to the claims for Turmeric, Curcumin, and Curry. Nonobacteria—We track this item on our Alternative Treatment Page on the website Not Approved for Posting Antibiotic “Cure” for Scleroderma—Disproved with major clinical trial; see our Clinical Trials page. Chinese “Cures”—they haven’t cured scleroderma in China either; we have a link to read on our Alternative Treatment page. Mexican “Cure”, “DNA Cure” Minocycline “Cure”—Disproved with major clinical trial; See our Clinical Trials pages. MSM—Not OK if touted as a “cure” for scleroderma (only okay in context of an anti-inflammatory). Roadback Foundation—David Trentham-Solely promotes the Antibiotic “Cure” which has been disproven with major clinical trial: See our Clinical Trials pages. Low Dose Naltrexone—Is currently being touted as an effective treatment for all autoimmune diseases, but only has one phase II study to date and that was for Crohn's disease. Although it has received funding from NIH for a phase III study, it's still for Crohn's, so any mention of this treatment for scleroderma should be "unapproved" until more studies are done. SPECIAL DIETS **A well-balanced nutritious diet is important for people with systemic,unless doctor advises otherwise. See below for information for specific diets/foods that might be discussed. (Also see: Diet and Scleroderma) Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications.Excessive use of alcohol and scleroderma really do not mix well at all. (Also see: Raynaud's) Allergy Diets—Allergy diets help with allergies, but scleroderma is not caused by allergies. Anti-inflammatory diet—There are some articles about it on the sclero.org website so okay to mention. Just remember that this diet has not been proven as a treatment or cure for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet. Atkins—A high-protein, no-carb diet, which can be dangerous for systemic scleroderma or anyone who is susceptible to kidney problems. Caffeine/Coffee—Not advised if Raynaud’s or digital ulcers or heartburn are not under adequate control. (Also see: Raynaud's) Dash Diet for Hypertension—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure”for scleroderma. It is possible, however that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet. Elimination Diets—Sometimes doctor advise for allergies or GI problems, but NOT a cure or treatment for scleroderma; however gluten may be a factor in causing or exacerbating scleroderma. See Celiac Disease and Gluten Sensitivity. Gluten-Free Diet—There is evidence that gluten may play a significant role in causing or exacerbating symptoms of scleroderma in some people. See Celiac Disease and Gluten Sensitivity. People who are sensitive to gluten may also be sensitive to casein(milk and all milk by-products) and soy because they are very similar proteins. Gluten is found in wheat, barley, rye and all their by-products. Liquid Diets—Are sometimes necessary with severe GI involvement in scleroderma. Even recipes are okay in this regard. Fasting—Very dangerous with systemic scleroderma, attempt only with a doctor’s supervision. Jenny Craig—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion. Mediterranean Diet—Some articles about it on the sclero.org website, so okay to mention. Just remember that this diet has not been proven as a treatment or “cure”for scleroderma. It is possible, however, that it might be beneficial for some symptoms. Also, people should always consult their doctor regarding changes in diet. Milk/Dairy/Casein Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk andall milk by-products) and soy because they are very similar proteins.See Gluten-Free Diet, above. Peppermint—Can induce heartburn in some people by relaxing the lower esophageal sphincter (LES). Pop/Soda/Soft Drinks with Caffeine—Not advised if Raynaud's or digital ulcers or heartburn are not under adequate control. Brands with lots of caffeine like Mountain Dew can be major causes of Raynaud's from the combination of the cold can and the caffeine jolt. Some of us can tolerate caffeinated coffee but not pops. High Protein Diets—Can be dangerous for systemic scleroderma or anyone else susceptible to kidney problems. Raw Foods Diets—Can disrupt G.I. function in systemic scleroderma. South Beach—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion Soy Elimination Diet—People who are sensitive to gluten may also be sensitive to casein (milk and all milk by-products) and soy because they are very similar proteins.See Gluten, above. TPN—Stands for Total Parenteral Nutrition,or tubal feeding. This is often necessary in end-stage GI involvement and discussion about it is entirely allowed. Tubal Feeding—This is often necessary in end-stage GI involvement and discussion about it is entirely allowed. Vegetarian—Vegetarianism does not “cure” scleroderma and should be attempted only with doctors guidance to make sure essential nutrients are included. It’s okay to mention being a vegetarian, but not to promote vegetarianism as a cure for scleroderma. Weight Watchers—Well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion. Whole Foods Diets—Usually well balanced, but wording should be changed to just "diet" or “weight loss program” to avoid brand name promotion. DRUGS Alcohol—Can disrupt sleep, cause heartburn, induce Raynaud’s, interact with medications. Excessive use of alcohol and scleroderma really do not mix well at all. (Also see: Raynaud's) Cocaine—This can literally cause scleroderma.Our link to the study went bad on the site, but just FYI, it can cause systemic scleroderma. Can be discussed, but only within the context of being a known cause of scleroderma. Marijuana—It is illegal in the US, so we do not discuss even medical use of marijuana or the ongoing debate about it. Nicotine—Definitely not good for systemic scleroderma, not good for health in general. OK to discuss when used in context of not healthy or about people who want to quit or have quit. Brand names of cigarettes are not okay. An ingredient in cigarettes is suspected of being beneficial to scleroderma so news articles about potential clinical trials for it are also okay; but this topic is allowed to come forth only through our newsroom articles. Pain Medications—Okay when used generically but not okay when mention specific drugs such as "pain medication"or "Oxycontin" etc. (edit to be just "pain medication") and such,because some drug users haunt message boards trying to look for sources they can burglarize or con out of drugs. EXERCISE **Everyone should check with the doctor before beginning a new exercise program,due to considerations such as heart, lung or muscle involvement (this includes Tai Chi, Yoga, Qigong, etc.). THERAPIES **We do not promote any certain clinics or doctors for alternative therapies. It is one thing to have your back feel better after chiropractic adjustments; another to say all your scleroderma symptoms have gone in remission due to chiropractic treatment. Approved for Posting Acupuncture—OK for symptoms, but it is not a treatment or “cure” for scleroderma. Do not mention doctor’s name or clinic. Ariculotherapy—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic. Chiropractic—OK for symptoms, but it is not a treatment or "cure" for scleroderma. Do not mention doctor’s name or clinic. Not Approved for Posting Chelation Therapy—Not approved for posting. Chelation therapy is not proven to be a treatment for scleroderma, and has been known to cause death. Also see: How the "Urine Toxic Metals" Test is Used to Defraud Patients on Quackwatch.org. Colonic washouts—Could cause perforation in SD patients, so should only be done under the advice of a medical doctor, preferably proctologist, if things are that bad. Compression Gloves - Not yet proven to be beneficial for Raynaud's or Scleroderma. In addition, avoid wearing tight wristbands, rings or footwear that compress blood vessels in your hands or feet. Link here to Cedars-Sinai for more information. Copper (bracelets, etc.) Crystals, Quartz Infrared therapy/Anodyne (pain relief) system—There is currently no manufacturer or brand of infrared therapy or anodyne(pain relief) system on the market with an FDA approval specifically to treat neuropathy. Anyone may claim a patent to treat neuropathy or other conditions, but a patent has nothing to do with FDA classification. Essential oils regimen for Scleroderma. Although they're widely used, we don't include them on the forums as there appears to be no evidence to that they are beneficial to Scleroderma sufferers. See link to Anti-Arthritic Effects and Toxicity of Essential Oils of Tumeric (curcuma longa l) Magnetic beds, bracelets, shoes, etc. Naturopaths—Naturopaths are only licensed in a few states so we do not mention them on the forums. Ozone and O3 therapy.- This is a quack treatment (Read more) which should never be discussed on the forum. Shaman Healing—Not OK for posting as it is specific to a certain belief system and we avoid all mention/discussion of specific belief systems (can discuss our faith and beliefs in general terms only). Other Alternative Treatments approved for posting: Banana Peel Treatment for Calcinosis: There are no scientific studies to support this. However banana peels are commonly used for household remedies such as removing warts and splinters. If your doctor agrees, you could try cutting a square of banana peel on the calcium deposit each night, yellow side out (away from the skin), and adhering it with a bandage. Use a new piece of peel every day for two weeks. If you try this experiment, please take photos, before, during and after. Whether it works or not, we’d love to hear your experience. Send an email about it to [email protected] with the subject line “Banana Peels and Calcinosis”. (Also see: Calcinosis)
  22. Shelley Ensz

    Teeth and Scleroderma

    Hi Ron, Our elaborate dental involvement pages are largely compliments of my own dental issues. Bone resorption of the mandible is probably what you are referring to. I've had a number of teeth affected by that and along with microstomia (mouth getting smaller), my old dental hospital called it "classic textbook scleroderma dental involvement" decades ago. Generally speaking though, you are extremely unlikely to find any dentist with even minimal awareness of scleroderma mouth involvement. Therefore, I recommend you print off any relevant dental involvement pages on our site and take them along to your appointment.
  23. Shelley Ensz

    Amanda Thorpe's Blog: Crash.

    Hi Margaret, Please continue to cut Gareth a lot of slack. Fatigue can look and feel like laziness, but you know for sure it's not when you're missing out on fun things that you were really looking forward to, for lack of endurance. It's a very real issue with scleroderma, and other chronic illnesses, that fatigue can make it simply impossible to do all the things we would normally do. It often exerts a shock on all aspects of our life: work, hobbies, and socializing. When I realized this, I eventually rearranged my whole life to accommodate my varying and diminished energy levels. Now all my close associates know that there is an inherent "IF" in all the plans I make. I will prioritize whatever we have planned on, and I will do my best to pace myself and rest to try to be in shape for it; and I will look at other alternatives, too, such as maybe suggesting take-out at my place rather than dinner out, etc., whenever that's possible. I've learned to never agree to do anything I don't really want or could reasonably plan to do, because with fatigue and illness, those things are the very first to bite the dust, so it is kinder to just firmly but gracefully decline the invitation, right up front. And to let others know, as soon as I do, that plans are going to have to be changed. For what's left, I try to schedule and pace myself. I also expect to bite off more than I can chew occasionally -- because it's very challenging to predict the largely unpredictable -- and I try not to be too hard on myself when I pay the piper (because self-denigration and remorse also defrays that precious vital energy). I strongly recommend simplifying life to the absolute max. Sometimes that simplification includes focusing our social life entirely around people who are flexible and understanding. As Amanda so aptly and cogently pointed out, it is very stressful for us to try to maintain contact with people who are prone to being inflexible or not understanding. And it is pointless for anyone with low energy reserves to try to tolerate poor behavior or impaired relationships, simply because we just plain don't have the extra energy to invest in trying to sort those relationships out. The unending stress of chronic illness will eventually cause us to either bend or break. I personally prefer bending rather than breaking, so I try to keep my goal as being flexible and resilient, instead of trying to plow along without realistic adaptations to the changing circumstances that less-than-exuberant-health imposes. I know it's probably really hard for you to figure out what end is up with Gareth. But there is a handy rule of thumb to try to figure out if we are depressed or fatigued at the moment. Depression makes us just not want to do things, even fun things. But with fatigue, we really want to do things, but we just can't muster the energy to do them (or to do as much of the activity as we'd like.) Since depression can cause fatigue (and vice versa), it's helpful to figure out what's missing, the desire or the energy. Depression can zap both at the same time, but fatigue will only zap the energy, and not the desire. Because fatigue leaves us still straddled with the desire but often not the ability, I've found it is most helpful to be frank and accept the situation as soon as possible, so that my own rebellion or guilt or disappointment doesn't drain my batteries even further. Give Gareth some extra hugs, just from me!
  24. Shelley Ensz

    Are there any younger sclero patients here? (30s?)

    Hi Trinity, Welcome to Sclero Forums, I'm very happy you've joined us. I'm a little confused by your post, because you say you have localized scleroderma (which is like morphea, linear, en coup) but your description sounds more like limited systemic sclerosis, because of it affecting your hands and causing digital ulcers, and also because of the RA, too. Since it is extremely easy for all of us to mix up the words limited and localized, I thought I'd better check before running off my mouth in the wrong direction. See Types of Scleroderma. I look forward to hearing lots more from you.
  25. Hi Ron, For more information on B12, please see our page on Anemia of Chronic Disease. A B12 deficiency is called Pernicious Anemia. Interestingly for you, it can also cause shortness of breath, palpitations, and fatigue.