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About Elehos

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    Upstate NY

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  1. Hi Vivdustbunny, Love that name! As far as the insurance goes, most states will give an override for Medicaid or other state insurances in medical emergency situations, but you would have to find out. It basically works by keeping track of your medical expenses, and when that takes up a certain percentage of your income, they will consider you as technically within their income guidelines. They will take certain possessions into consideration at times, like cars, and what you might or might not be able to sell, but it doesn't sound like you've got a shiny new Mercedes in your driveway (and neither do we!) I've never been tested for the malabsorption, but suspect it since my digestive tract has been horrible on and off for years, and there are so many foods I can't eat. Muscle loss comes with the territory, and I hate the way it looks, and the way it affects daily life. Have you been tested for Polymyositis? Find out about the insurance and talk to your rheumatologist to do the tests for the PM and SC since she will know which ones to do. I wish I could offer more help. Sincerely, Elehos
  2. Hi Lynn, I began having problems driving at dusk some years back, and then it worsened with certain meds. Have you started any medications recently, even a few months before this started? If so, talk to your doctor about that. The visual changes, especially the annoying amount of floaters turning up seem to be part of the changes in my body, and my eye doctor has said that otherwise my eyes are healthy, so you may want to consult an opthamologist to be safe. I hope that things will improve for you! Best wishes, Elehos
  3. Hi Peanut, For years I seemed to have enough lactase in my body to handle a small amount of lactose, but over the past year it bottomed out completely. There's not much in the Lyrica, but someone extremely sensitive might have trouble. Glad to hear that you're handling it well! Best wishes, Happy Holidays, and wishing all a wonderful New Year! Elehos
  4. Hi everyone, I got so excited about walking again that I forgot to mention this about the Lyrica...the brand name (I don't think there's a generic yet) drug has lactose as a filler ingredient, and since I'm lactose intolerant, I take it with a small amount of a chewable "dairy tab" (contains lactase). If anyone is lactose intolerant and has ended up with stomach problems after taking Lyrica, that might be the problem, so talk to your doctor to see if a lactase supplement might help. It doesn't take much of one, about 1/8 to 1/5 of a chewable tab helps. Best to all, Elehos
  5. Hi Margaret, No doubt you have to keep track of Gareth with the sclero, but it was odd that the hacking during a bout of pneumonia in April started after the antibiotics. Until then, there was serious pain under my left shoulder blade, but no coughing or lung pain. The doctor told me that pneumonia can upper cause back pain, so if he has that, it most likely is pneumonia. Also, what he coughs up may look horrible (brown with some blood), but at least he might be able to get some of that out now. Best to you! Sincerely, Elehos
  6. Hi MicheleM, Quite often it's a medicine "cocktail" that keeps us moving, so if you still have to take some other meds, don't feel discouraged. Also, just as a note, I tried to increase from 100mg to the full dose of 150mg/day within two weeks of starting and it backfired. If you increase the dose and get sudden muscle weakness, call your doctor immediately since that's the first sign of too high of a dose. I took the full dose for three days before calling and it caused bizarre "bugs in the bones" sensations and muscle twitching and crawling that felt like severe withdrawal symptoms, so keep track of any symptoms with the increase. Then again, the increase might work beautifully for you, so please don't think that what hit me is guaranteed to happen to anyone else. My body weight has also been a problem with taking full doses of anything since I tend to fluctuate between thin and emaciated. You know how it goes with meds; just keep track of what's going on, and always hope for the best! Best wishes to you, Elehos
  7. Hi again to all! Thanks, and I do hope all of you get great relief as well! For about a year I was resistant to trying Lyrica because it was mentioned as an option along with Cymbalta, and it sounded like another antidepressant, which don't work well with me. It's actually an anticonvulsant, which makes sense for nerve pain/damage, especially if that's the source of muscle spasm and pain. Interestingly, the area of my spine that was causing the most severe problems didn't hurt like the other areas that had been previously damaged, but over time I realized that symptoms worsened when that one particular area in the mid spine would begin to feel hot or burn slightly. Sometimes I wonder how many people have nerve damage and have no idea...and many doctors don't consider that possibility. Or they figure the damage is to your mind! Hope all of you have a good, if not great day! Hugs and best wishes, Elehos
  8. Hi Everyone! I have been too busy to check in often, and it has been ages since posting, but I wanted to let everyone know of something extremely good that has happened on the odd chance that someone else might benefit. That "something" is Lyrica, and my doctor prescribed it on October 3rd, and after far, far too long, I actually feel human again. No, it's not a cure for everything, but it certainly eases so many symptoms. For those that haven't seen any of my posts or don't remember, here's a quick overview of the past...well, let's just stick with the past year and a half! On April 3rd, 2006, I was hit with one of the worst Lupus flares ever, and it not only landed me in bed for 4-1/2 months, I lost the ability to walk without a walker, couldn't move my right leg without "hip-hiking," and even then it wouldn't move past my left leg. When trying to lift my right foot off the floor, the muscles in the groin and inner thigh would shake violently, and it was impossible to lift my leg for more than a second or two, and only an inch or two off the floor at best. It was also common to have severe muscle spasms down my neck and most of the right side of my body that would land me on the floor, either jerking in a seizure-like manner or pulled painfully and involuntarily into a fetal position. The pain in my groin was unbearable at times, and the bladder pain and spasms were at an alltime high. The muscles in my lower abdomen wouldn't contract either, so trying to support my body weight was impossible when having to lean or reach for anything, and it became common to tip over. To top it off, a number of other muscles had contracted permanently, causing severe headaches, hip pain, foot pain, a "claw" for a right hand, and difficulty (and pain!) trying to breathe. The nerves in my spine had become even more damaged than before, most likely from the high fevers in April, and it was wreaking havoc with my body. Ok, now for the light at the end of the tunnel! In desperation I asked on of my doctors for Lyrica, anything but more "strong meds," and the first day my right leg began to move again after the meds hit. I went outside, walked around the house, then sat down on the front step and cried like a baby! Over the next 6 weeks more muscles began to loosen, and the nerve pain in my spine diminished enough to be able to drop about 90% of the "stronger meds." Actually, I dropped 50% of them within 24 hours! It was amazing to be able to walk again, to do even basic things like going to the grocery store, or just go out into the back yard. It's especially good to be able to inhale without great effort and pain! I've noticed posts about so many of these symptoms, so maybe this will give someone hope that things can and do change. It was completely unexpected, and I'm actually working at getting my business back up and running. Or walking. It might take a bit, but little by little there are good changes coming. I wish the same relief for everyone else, and wish that I could send some along to you! Best wishes to all, Elehos
  9. Hi Jennifer, I'm also vegan, and it has made a world of difference. About 10 years ago I was knocked over after eating a bite of meat, and after eliminating meat and poultry completely from my diet, my joints became more flexible and hurt far less, the borderline anemia was cured, and my digestion improved drastically. For some reason my body couldn't process iron from meat or supplements, but all the veggie foods did the trick. It's interesting that Claudia was told to avoid canned food, and that's another thing that always threw my digestive tract into fits, especially since they tend to be extremely high in sodium and preservatives. Dairy was causing serious foot pain and swelling, finally giving me a nasty battle with gout, but of course it took me a while to realize that was the culprit. I would ask your doctor about any changes you might want to make so you can find suitable substitutes. Best wishes to you, Elehos
  10. Hi Kamlesh, I don't want to sound trite, but I just wait it out. Perhaps it's due to the fact that I've had many, many, many down days that I realize that they will pass, and knowing that always gives me hope. Certain meds can cause depression, so if you notice that you you began to get depressed after starting a certain med, please let your doctor know. Health issues alone can cause this, and weather has a profound effect on many of us, especially when there's a drastic change from one day to the next. Feeling down can change quickly, or you might have to wait longer than you want for the cloud to lift, but remember that as long as you're alive things can change! If it's far too deep to deal with alone, please seek medical attention, especially since they can offer help not just with meds, but also by being able to talk about everything. I do speak from experience here, and wish that I could give you at least some of the hope that I've regained. Best wishes and thinking of you, Elehos
  11. Hi Sharon, I've been in the same situation all too many times with the "specialists," but eventually the breakdown from being dismissed passes, and I do look for someone that will investigate further. There are times it feels like having one horrendous blind date from you-know-where after another, doesn't it? My comfort in all of this is in having a general practitioner and another doctor that do believe me, even if they're not certain about making the formal diagnosis. Whenever you feel frustrated, please do let it out, especially since so many of us can relate and may be able to give some comfort and even a bit of good advice. It can feel like life is somewhat on hold while trying to find "Dr. Right," but please remember that your hubby believes you regardless of the doctors' opinions, and frankly I'd rather have my husband believe me since he's the one I kiss goodnight. I hope that you can get your strength back soon and do continue to seek out good medical care! Hugs to you, Elehos
  12. Hi Loriann, I decided to have a number of rose bushes removed from my yard since they would always cause the worst infections in my hands, even from the tiniest scratch or pinprick on a finger. It's hard to say if it was staph or not since I used a particular natural remedy recommended in a book by Dr. Andrew Weil (there are some links for him in the medical section), and that did the trick. Either way, it's amazing how many types of bacteria are lurking outside, and I have to be extremely cautious gardening, but it's not sclero related--just a "dirty" world we live in! Hope you are feeling better! Elehos
  13. Hi Tammy, For years I went into denial with the laundry list of symptoms that were turning up, saying things such as, "Oh, it's nothing, I just overdid it yesterday," or "It's just that time of the month," after waking up on several occasions where I couldn't even move my legs to get out of bed due to excruciating back pain. This was way back at the age of 19, and I didn't want to believe that anything was seriously wrong. Finally I had to find out, and all my ignorance and denial was far from bliss--so much could have been dealt with much earlier on. This was a habit learned from my parents who denied everything and blamed it on "growing pains," and it was a stupid habit for me to keep! Not that I'm calling you stupid, please don't think that, and the fact that you've already been seeking medical attention is good to know. However, if you end up in the ER without a formal diagnosis, you probably won't be taken very seriously and could be sent home without any treatment at all, which could potentially (and all too quickly) be deadly if your kidneys or heart are involved at that point. I say this from experience. Aside from all the excellent advice you've received, please do go for a formal diagnosis, and realize that there are many more options and treatments available now. Maybe a cure will come along at some point, but there's no sense not fighting like mad in the meantime if you can improve your life until that day. I'm so sorry that you're also in this battle, but we're here with you, and it's so encouraging for us to read all the research articles as well as the questions posted here, and hopefully you'll also be encouraged! Best wishes to you, Elehos
  14. Hi Patty, Others have mentioned Cellcept (and I think Plaquenil too) for skin issues, but since I don't take any of the "sclero meds" at this point, someone else might be able to fill you in more on meds. The skin on my hands has been getting tighter on the back and on the fingertips, and thicker on the palms, but I don't have the typical curling you see in pictures either. The fingers aren't as straight anymore, and I can't make a fist with either hand anymore, but the only thing I'm doing at the moment is stretching like mad to keep them from getting worse. At one point they were beginning to curve terribly, and it took about 3 weeks of constant stretching, sometimes feeling like the skin and tendons would break, but my hands did begin to improve. My knuckles began to hurt like mad for several weeks afterwards, but eventually settled down, and I would prefer that to unusable hands! I'm sorry that you're having the problems with your hands too. Hugs and best wishes to you, Elehos
  15. Hi Craig, I have the same trouble with breathing, on the left side also but it travels down the back, and myalgia does come along with sclero as well. Why a doctor would throw in fibro after the other autoimmune issues have been diagnosis'ed is odd since they usually start at that point then progress to something more definitive. My blood work still seems unclear in certain areas, but nucleolar pattern ANA with a 1:320 titre doesn't fit fibro at all, yet the rheumies I've seen don't want to look into anything more for the moment. It's not so much the additional diagnosis that's a problem for most, but that too many doctors seem unwilling to help their patients with the pain. Fortunately, I've got a doctor that does, but that seems to be a rare bird these days! Best wishes to you, Elehos
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