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About HouckRN78

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  1. Welcome Lucy! It's always easier for me to bring up those embarassing questions here since I know everyone has a few once in a while themselves. I'm with you on every single symptom. It's so strange to have my fingers feel swollen and stiff yet not look swollen! It's hard to convince your doctors that it's not in your head too. As far as itchiness, my ob/gyn said in sjogrens and scleroderma the mucosal lining of the vagina can be a little dry, just like the eyes and mouth, which leads to mild yeast overgrowth. Not enough to be treated, just enough to be irritating at times. Yuck! :angry: Hope you continue to ask questions and find answers! Best wishes - Heather
  2. I have noticed a loss of sensitivity to my skin, too. Mostly just in the hands and feet so far. As far as dryness, petroleum jelly is about the only thing I've found that really helps. I put it on my lips throughout the day and on dry patches at night (face, elbows, feet, hands). Such a simple thing and it works better than the pricey creams. I wondered if anyone has noticed that their skin scars very easily with even minor scratches? My skin has become fragile so it scratches easily and just doesn't heal as quickly or completely as before. Hope you find some relief! Heather
  3. The sclero brain fog has struck again! I've experienced this: unable to find the right word, losing train of thought mid sentence, jumbling up words or even syllables. More recently I've noticed my typing accuracy is deteriorating and I used to type dictation at 60 words per minute! Strange thing is, I recently noticed it is not so bad when I regularly take a prescription stimulant for the fatigue. It sharpens my concentration and reduces the "mental pauses" that regularly interrupt my day. So maybe it is related to fatigue and being mentally tired? Anyway, hope it helps to know you're not the only one at a loss for words. ;) Heather
  4. Stef, Sometimes the frustration is worse than the disease! :wacko: I also have had more than one positive Scl-70 but no skin thickening (thank goodness). Unfortunately that seems to cause more confusion among the doctors than conclusions. Then thanks to my HMO (Health Maintenance Organization) (grrrrrrrr) my specialist can't seem to get my internist to order the right type of ANA. I think it's the old fashioned one with complete reporting that she wanted. Guess I'll be donating some more blood samples again so they can try to get it right. Hang in there. Best advice I ever got was to keep a symptom diary. I got a calendar with enough space to write down my symptoms each day (most days there's enough room, hee hee). It helped me to see patterns and associate some symptoms with triggers in my daily life. Hope you find the answers you're searching for! With good thoughts, Heather
  5. Hi Eos, I've had tingling and numbness along the right side of my face from the upper lip, along my nose on the cheek, and under the eye to the outer corner. Sometimes just putting on chapstick makes the tingle go all the way to my eye! They haven't actually given me a definite diagnosis yet so I can't say whether this is just a coincidence, damage from repeated cold sores, Sjogren's, scleroderma, or what! Either way I totally sympathize but think you should definitely get it checked out soon. Call an ambulance if you begin having weakness (facial drooping), difficulty speaking, or any of those symptoms elsewhere. With good thoughts, Heather
  6. I remember watching my mom deteriorate with lung cancer a few years ago. She was adamant that she wanted everything done to treat the cancer. Unfortunately, it spread throughout her body including her brain and left her confused and only semiconscious. In the end, she slipped into a terminal coma before we reached the point of deciding her code status. I was thankful not to have to watch her pass away on a ventitlator. As a critical care nurse, I knew she would never come off if put on one but I wanted to follow her wishes. The most important thing you can do for your mom is to find out what she wants. The time may come that you must make decisions for her and you will need that power of attorney for healthcare form. Think of the life your mom has lived and her beliefs. It's very difficult to put aside your own grief and fears. You may not agree with your mom on many issues, but this is a decision she trusts you will make in accordance with her wishes. Peaceful thoughts for you and your mom, Heather
  7. Hi EH, I just noticed over the last month that my ankles and calves feel tight and stiff. I first noticed it while walking down the stairs and now my ankles hurt when standing sometimes. I thought maybe it was tightening of the tendons along the back of the ankle/leg or just inflammation. The best advice I can give is to take whatever you would for other pains and keep gently stretching through your range of motion for each and every joint. With good thoughts and hope, Heather
  8. I've had the raynaud's for maybe 5yrs but didn't think anything of it. My thyroid problem makes me cold intolerant anyway so it didn't seem strange. A little over a year ago I began having terrible fatigue then this spring my feet were going numb and tingly. I've been to my doctor 3 times, a neurologist who found the Scl-70, and a rheumatologist who knew less about SSc than I did. That was 2 1/2 mo ago and things have been getting worse in the last month so I'm heading back to my doctor this week to push for a referral to a scleroderma specialist. I'm hoping the labwork, raynaud's, neuropathy, and now arthritis to my fingers will be enough to convince him to let me look deeper into this. I guess the short answer to this question would be more than a year and still waiting. I would appreciate positive thoughts for perseverance and an open minded doctor. Love to all, Heather
  9. Fatigue has been the most intense of my symptoms until I started having arthritic pain of my fingers this summer. I finally got my doctor to take the fatigue seriously last winter when he found out I was falling asleep sitting up on the couch with my 2 yr old just 1 1/2 hours after getting up. It was also concerning that I would feel like I'm about to pass out (sort of a drunken type of drowsy while totally sober) while driving to the store during the day. He gave me Adderall XR which worked wonderfully but cost a fortune! (No generic form yet) My primary wasn't happy with me being on Adderall and had me try the provigil for a week or so. It helped some during the day, but I had trouble getting to sleep. Now I'm back to Adderall, but not the XR so I can get the generic. It's a small dose that I can repeat around noon if needed on those really bad days, but don't usually have to. It seemed strange to be taking a med for ADD when I was having problems with fatigue but it really helps me be alert enough to concentrate and focus. I hope this bit of info is helpful to anyone with unrelenting fatigue despite getting adequate sleep. Warm fuzzy thoughts for all!
  10. I recently read a medical journal that documented the existence of "chemo brain" as mentioned by gocartmoz and I really think they need to look into "sclero-brain" next. One of the first symptoms I recognized was my difficulty remembering simple things like the name of the person I'm talking to whom I have known for years! My 5 yr old has even noticed that I have trouble finding the right word at times. I thought I was having TIA's or early alzheimer's but I definately believe this is a sclero-thing now. My critical thinking skills are still sharp as a nail but I sometimes can't tell you what that "metal thing" is that you hammer into a piece of wood! :D It has given me great empathy for stroke and alzheimer's sufferers. Take heart that your memory loss is common among us sclerodians and use it as a convenient excuse for missing those not so enjoyable events! Love and Blessings! Heather
  11. I often wondered how feet that were so cold could sweat so much! And then to go from ice cold to burning up on the soles was such a shock. I didn't realize my night sweats and "feet hot flashes" might be related to scleroderma. It's so reassuring to hear that others have these problems and realize that I might not be totally crazy. (Just a little crazy is ok!) I would definately avoid those sandals until this subsides. Meanwhile, you can always get a nice foot powder for your sneakers if they get a little funky smelling. Keep your spirits up! Heather
  12. Smurfette - First, let me say I love the nickname! I had a variant of it through high schoool. As a nurse I am dismayed to see that nurses have lost their position of patient advocate in so many settings. Patients have a very difficult time trying to navigate both their medical conditions as well as insurance company requirements. Unfortunately, I have also found most of the responsibility lies with the patient these days but it wouldn't hurt to get to know your doctor's nurse. Or even better, to find a good friend to accompany you to your office visits and help with the aggrivating red tape/forms neccesary to ensure you receive the appropriate care. Best wishes to you! PS Nina - I know quite a few medicare patients on Ativan (generic is lorazepam). You really need to look into why they won't cover it or the generic. Best of luck!
  13. Hello to All! I was diagnosed with hypothyroidism at 20 and my doctor said at that time that an early manifestation of hypothyroidism puts a person at higher risk of other disorders, often autoimmune in nature. He sent me to a rheumatologist for chronic joint and muscle pains who told me to take ibuprofen and basically quit whining! Almost ten years later I learn I have a positive ANA and high Scl-70. No skin symptoms yet so I am still waiting for the definite diagnosis. Anyway, my answer would be a definite yes! Thyroid disorders, from what I have been told, have a relationship with autoimmune disorders. It's often hard to distinguish thyroid related fatigue/symptoms from sclero symptoms so just keep a close eye on your TSH. Even when stable I would recommed having it tested every 6 mo. at least. Oh, and be sure to take your meds consistantly or you will feel so much worse! Best Wishes! Heather
  14. I am also trying to nail down a diagnosis and so very much sympathize with you. How did you get your doctor to take you seriously? Being a nurse myself I thought he would understand that I'm not making this stuff up, especially after positive ana/scl70 tests! I am trying to get up the courage to demand to see a specialist in Chicago or find a new doctor. I sometimes wonder why they (doctors) are so resistant to make referrals to specialists. I suspect that since I take an antidepressant they dismiss my symptoms as psychosomatic, but I'm just venting a bit! I hope you keep searching. It sounds like your symptoms are quite serious and deserve further investigation. Best of Luck to you!
  15. Hello All! I'm waiting for a doctor to have enough courage to give me a definitive diagnosis but being an ICU nurse myself I am not inclined to wait on them for much. ;) My symptoms of the last few years and positive Scl70 have me convinced and I am so thankful to have such a wonderful community of support online. Anyway--I have noticed during a flare when my fingers are swollen like sausage in the morning, they feel deflated and even "jiggly" in the evening. This is definitely one of the "weird and weirder" symptom finalists on my list. I'd love to see someone compile that list. It would be both hilarious and encouraging that I'm not totally losing my mind in all of this! Thanks again to all who contribute to this site! Love to all! Heather
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