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Everything posted by Lyn

  1. Thank you everyone. I was diagnosed with the sclero in 2002, and second opinion agreed, though my rheumatologist said undifferentiated autoimmune at the time. I was diagnosed with fibro back in mid 80s, and I have had 4 doctors since and all agree. I know what I have. I just could not believe what I was hearing, or he would have been stunned himself! I will move on, see my primary care physician and start again. Thank you all for being so supportive. I have not been here as often as I could be, but I visit and read more than I post. You all are great!
  2. I saw my new rheumatologist yesterday and he pretty much dismissed everything other doctors have told me, saying there is no such thing as fibromyalgia and I do not have a scleroderma esophogus no matter what the 2 gastroenterologist have said. He said it was sleep troubles and my weight. I am devastated by this experience, and feel dismissed and belittled. Even thought both gastro doctors told me never allow surgery on my gut for my weight, this doctor wants me to have bypass for weight loss. He also wants me to have a sleep study, which I also think is a good idea. That is the only thing he said that made any sense and my own primary care physician already decided that. How do you deal with such an experience?
  3. It took me about 6 months to calm down about my diagnosis. Every new thing that came up, or every recurrence of a symptom had me in a panic. Then I came to realize that what I had was moving in slow motion in my case, that maybe what symptoms I had were as bad as it was going to get. So every 6 months I see my doctor, every year I get my inner workings tested, and so far in 7 years nothing has changed. Scleroderma is different for everyone, and no one can tell you what will happen for you. Once you see what it is for you, you will get 'used' to it being a part of your life. Like I have seen here.. scleroderma is something you LIVE with.
  4. I have not had a lot of internal organ damage, so my perspective may be off, but I want to keep my hands. The changes are just beginning, and I am a quilter, and I would hate to lose my ability to quilt.
  5. I was diagnosed by trigger point exam after all other tests were normal, and MRI was finally done and excluded the MS. I didn't believe there was a name for how bad I felt, so the doctor got his medical book and showed me the tender points to diagnose the FM. I had every one of them. I was so relieved I cried. I had to get this diagnosis after 3 years of other doctors, and went to a specialist clinic where they had several doctors look at me. When I went home and told my rheumatologist what the diagnosis was, and asked why he did not tell me this himself, he said "I didn't want to have you labeled"... what did that mean! Granted, this was in '84, so he had a little excuse. He had been treating me with arthritis meds, one of which sent me to the hospital with toxic hepatitis for 10 days and it took me 8 months to recover from that. What makes me nuts is that every time I have to change my doctor due to insurance or moving, they just have to put me through the exam again to prove it to themselves, what agony! Makes me want to scream!
  6. I was diagnosed with fibromyalgia back when they called it fibrositis. I got sick with it in 1981 and it took 3 years to get the diagnosis, and by then I was hardly able to walk, they thought I had MS it was so bad. A long recovery from the worst of it, and it has been a stable roller coaster ride since. I say stable, because even though I get flares, I get treating it fast and I haven't been in a wheelchair since '85. I was diagnosed with the sclero in Dec of 2001.
  7. Since you fear what the future holds, just know that you can pour all your love onto this baby and no matter what happens, 10 years down the road, or 30 years... that child will know in its' deepest parts that it was loved to the fullest. There is no greater gift you can give. Enjoy your unexpected blessing! Many mothers have challenges to face, and we face them with happiness since we are finally holding a child in our hearts! Lyn
  8. I had a severe case of facial pain, felt like it was a toothache... ended up being a salivary gland stone! It took a long time to unplug, and then it recurred several times. I am sorry to hear you are having such pain, it probably is way worse than mine was! Lyn
  9. Sometimes my throat spasms hurt so much, they feel like a very painful hard hiccup that just won't finish... like I am stuck in the 'hic' of the hiccup! It does feel like everything just stops, and then it finally eases after about a minute or so. Never figured out why it happens. Sorry to hear you have this. Lyn
  10. Does anyone here have this? I got it in the summer of '05 and at first the slightest touch across the skin on my thigh felt like someone was slashing me but otherwise the skin was numb, then deep severe pain in my thigh muscle started and has not let up. The doctor says it is a compressed nerve in the groin, not related to the sclero. Some days it feels like my skin is being torn off the muscle. It is awful, and the skin itself is numb, yet feels like a slash when I run my fingernail lightly across it. Lyn
  11. People just don't know what to say. We just want a listening ear, and not advice or whatever else they come up with. I hate it when they say: <_< #1-it can't be as bad as all that, stiff upper lip now. #2-we all have our crosses to bear. #3-I know what you mean, I have this terrible cold... #4-I think you look great! #5-You worry too much. #6-I'm sure you will be fine. #7-that isn't true in your case, I just know it. #8-maybe if you sleep more/take vitamin C/keep busy... :blink:
  12. I applied the end of Oct '04, that was when I finally gave up my part time job. When I got my approval, they said I was considered disabled in August, even though I was working part time, because it was so little. It would be good to find out what they consider few enough hours to be that way, I do not remember at all. I had been working more part time hours for 3 months before August, but had to leave that second job due the my disability. Lyn
  13. I have a history of itchy sores, which end up painful in the end though. I started getting them when I used any hair color treatment. It is impossible for me to color my hair at all. I now get it with every period. This started in my late forties, and I am 52 now. I am imagining it is homonal for me. I look forward to never having one again, but so far I am regular as ever. I use an over the counter anti-itch scalp treatment during the worst of it, to relieve that horrible itch. Lyn
  14. I have tried both ways and end up sliding down with them all. How do you guys stop that from happening? I took the wheels off the bottom of the bed, thinking that was only about 3", and I still slid down. I wake up often and climb back up. I use regular sheets. Maybe I should get flannel, so I stick to it better! Like a flannel board? So right now I use pillows, but not a lot. I do suffer no matter what. So, what is your secret to staying at the head of the bed? Lyn
  15. I bought this bed heater a few years ago, it is about 3 feet long and 2 feet wide, and I slip it under my balnket at the foot of the bed about half hour before I go to bed. I get hot flashes at night so I cannot endure it on all night. But I take it out, crawl into bed, and it is heavenly! My feet are so happy! My sister uses a regular heating pad and takes it out before going to bed, same result, foot heaven!
  16. Lyn


    Getting disability is not easy. I am on it only because I have other issues, not from the sclero. I was in pretty bad shape, so once it got started it was out of my hands, doctors in charge of the rest of the paperwork, thankfully. My sister has tried more times than I can count. She is finally going to get a lawyer like she should have after her first rejection. There is info on the web, and I think on the mother site of this forum, about this, but remember, there is a six month waiting period, once you are accepted. You have to be out of work for six months before the checks start coming in. That said, I think saving your hands is the most important thing of all. If your work is making you lose your hands, it cannot be worth it! Ask anyone who has lost the use of their hands, no matter the cause, and they will tell you to take care of your hands.
  17. When I eat anything salty I cough uncontrollably. I always have. But I never felt like I couldn't breathe. I sure hope you find out what it is, there is salt everywhere!
  18. Lyn

    Vitamin D

    No, but if low vitamin D can effect mood, I am all for taking it, as I have a mood disorder. Anything to stabilize that is good! I am doing it whatever, but thanks for the info.
  19. My doctor... family... has told me to start taking 5000mg of vitamin D once a week, then after a month to go to every other week, then down to once a month. She said it may help with my hand pain. Has anyone heard of such a thing? She told me my x-rays showed NO arthritis. This was relayed to me by her nurse. Lyn
  20. My ankles swell every summer. I am told to elvate my feet, walk about.... nothing changes the fact that my feet swell in hot weather. I wake up in the morning with beautiful, slim ankles, and in an hour or 2 they can look like tree trunks. My sister has this also. She has undifferentiated autoimmune disease, I have sclreo. I have no idea at all if that means anything! If I go from my bed directly to my recliner and elevate my feet, they stay skinny. I do not know who can live like that, but I cannot! If it was circulation, why doesn't it happen all year?! I gave up, and just live with it. They get quite tight and painful. I am sorry to hear that you have this probem.
  21. You know there are products that once exposed to air stay warm for 8 hours. For hunters there ones that are simple rectangles with no sticky back, that you slip into your pocket to keep hands warm. Well, they are cheaper than the sticky back ones, and I put one in each pocket on days where I just cannot stay warm. It is like having a personal heater! I do not put my hands in my pockets.. danger of burn (they are not really that hot, but tender skin is easily burned), but having 2 little heaters in my clothes is a real help. If my hands are really cold, I do put them in my pockets until they feel warmer, but I wear gloves. These heaters are not made to keeping against the skin, but to stay in pockets. I love them!
  22. When I hold a needle when I quilt, the indentation from it stays forever it seems. It is almost like my fingertips are dehydrated. When I worked at a doctor's office, one test for dehydration was how long it took for the fingertips to rebound. But I am not dehydrated, just my fingertips are! Thankfully I do not have pain, it just feels like everything I touch has a paper layer on it! I would also love to know what your doctor says about it.
  23. Lyn

    Hello again

    WOW! I had no idea such a thing existed! I will mention that too, it could help me walk more, I have terrible hip and ankle pains that slow me down from that activity that the doctor really wants me to do. I have a compressed nerve in my hip, sort of like carple tunnel syndrome in the hip, it runs in front of the groin and effects my thigh. It is a show stopper. The burning and throbbing pain is just awful, and when it hurts like that I need a stronger pain medication that puts me off my feet. I am getting such helpful advise here, thanks you.
  24. Lyn

    Hello again

    I do have those gloves, just haven't thought of them. Good idea. I do take tylenol for the pain, but you are right, taking it before the work could really help! I also have had bilateral tunnel releases done, and the symptoms improved for a bit, but now it is back, though nowhere near what I had before the surgeries.. yikes! 17years ago for the right, 8 years ago for the left!? I guess the surgeries helped quilte awaile, time has slipped by me! Thanks for the ideas. As far as meds go, my doctor says since it isn't a frequent or severe problem, she would rather avoid it. I am on many different meds for a different problem, and squeezing in a new one is just hard. They do not go white, and the symptoms go away with other treatment... hot wax, heat wraps... you know the ones. I have tried the thermacare hand ones, wow how good do those feel!?! Can't do a lot with those things on, but sitting and stitching can be! I will talk to her next time I see her about the benefit of taking meds for the Raynaud's, for the pain if for nothing else.
  25. Lyn

    Hello again

    I would love to get relief with advil or such, but I am allergic to aspirin, ibuprofin and naprosyn. I cannot even take the prescription types of anti-inflammatories. I miss the pain relief I used to get from them, but my body turned against them all. I get hives and my kidneys stop working when I take them, and the doctor doesn't want to trigger a kidney crisis. Some days I can live with it, but others I just want to sit and cry with the pain. I don't stop using them though. I am afraid to!
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