luvbnmom3

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Everything posted by luvbnmom3

  1. I'm wondering if these pictures are what tightening looks like. I mean, I know it's tight, but I don't know if there are other things besides scleroderma that can cause these symptoms (that include raynaud's, swollen hands in the morning, etc.) Some day I'll get brave & post pics of myself...lol. Oh, I don't know how to put pictures on my post, but I think if you click my name you can see my album.
  2. Thank you. I got a couple others in there, 4 I think. Is that what tight skin looks like in Scleroderma? I don't know if I should show my doctor since my hands don't look that tight 24/7. It used to be once a week or so I'd notice them a little tight across my nuckles (at the base of my fingers, where they connect to my hand) but over the year it has spread over the wrist & happens daily, much tighter, much more skin. I feel it on my lower back when I bend over, & my abdominal skin when I sit or lean & in my face too. I don't know what to do, the rheumatologist I saw 2 years ago said my ana was neg, I'd go ask to have it checked again so that maybe things can be slowed down, but if it is negative...then what? Because I am shrinking & if it isn't going to show up in an ANA test... what could cause all this?
  3. My primary care physician prescribed some Elcon 60mg for my hands when I told him the skin was getting tight, would this help or do you think he prescribed it because he thought the "tears" on my knuckles were from what he referred to as ecsema? I told him those tears on my knuckles happen when the skin on my hands gets too tight for what I'm doing at the time. Is tissue pad loss in fingers when, like on my thumb pad, it is thinner than it used to be and leaves a big indentation from pushing gently don on it (not like pitting edema though)? I know raynaud's in the thumbs is supposedly rare, but both my thumbs are that way, touching something cold makes the finger pads white and burn like grabbing something out of the oven.
  4. My fingers feel like super-glue-ish when they're swollen & it is humid, like I can't golf because my fingers all stick together & are too fat. I don't know if that's the kind of sensation you're speaking of. My fingers stick together like... like 2 rubber/silocone type objects that don't slide if rubbed together... they just stop eachother from sliding & kind of stick. That's how my fingers are. OOh Ooh! I know... ever experienced the texture of a baby-bottle-nipple that is getting worn out some & fuzzies start to stick to it (or a pacifier)? My fingers are sticky JUST like that... is that what you mean?
  5. I use the disposable things like the charcoal ones you described only no black stuff. They run about the same price & you can get them at any sporting good store that sells hunting supplies, etc. They have them for toes, feet, hands, & even a larger one for your body... I put that one inside the back of my coat! I too find that when I keep my head & torso warm enough I have fewer attacks. When I'm am a stickler altogether about not letting myself get cold it does a pretty good job of preventing attacks. Lately I have slacked off (out of irratation with the fact that I have to stay warm...lol) & I'm constantly having attacks throughout the day if not all day. SO... for sure wearing a hat & keeping torso warm will help. Also make sure you don't thaw your toes out too fast. I use the microwave bags every night in my bed but I always test the temperature on my abdomen because my hands & feet don't always know when they're getting burnt. A few weeks ago I burnt my thumb on a flat-iron trying to see why it "wasn't" getting hot. Drrrrrrrrrrrr....lol
  6. Do everyones symptoms come and go all the time, like, do you have pain in one hip for a while, then somewhere else, muscle weakness in the arms for a while, which subsides, vision problems, tendon issues; waking up with stiff achiles tendons in both legs for a while, etc.? What a bout skin tightening? When it is somewhat insidious, as it gradually gets tighter, does it have days where it is worse, but gets better to some extent, for example, if I have to do something outside & my hands get too cold, the skin will get so tight that I can't open my hand all the way, or sometimes after washing my hands the skin is completely tight. My face feels like the skin is less "moveable" like when I rub my eyes, & sometimes if my face gets too cold, the skin is so stiff I can hardly squint my eyes enough, but it improves when my face warms up. My doctor mentioned Sclero, since my hands keep getting tight, then the skin tears some on my knuckles. He says my whole body being freezing cold isn't the Raynaud's... anyone hear of that? what is "induration"? Is that when the skin is less flexible, like you could poke it & it isn't soft & squishy?
  7. You know, I have posted here off & on for the last year probably, ever since my skin started to get tight anyway, and I've been in & out, asking questions and every time people have responded and been so kind & so supportive. I know some of you post regularly & I've been a member in forums before where I was a regular along with several others & often times most of the regulars have this us four & no more mentality and are not so welcoming, especially to those who are busy & pop in once in a while. Anyways, I just wanted to acknowledge & thank all of you for how great you have always been to me & to the numerous others that I've seen you respond to who's posts begin with "I'm new here" or "I haven't been here in a while" or "Is this sclero"...lol. Y'all are beautiful! :rolleyes:
  8. That makes complete sense, the tribes... history, etc. I just took a psychology course & history seems to play a big role in a lot we humans do! Now that you mention it, I recall the comfort of the coziness with familiar friends & the uneasiness with newcomers... not knowing if they'll disrupt the beautifulness you've got going in the group of friends already formed & stuff. So yeah... your point makes it even more amazing how supportive & kind everyone here is. When I first got sick, I was in so much pain every where, I was experiencing Raynaud's for the first time, major brain fog, people were getting upset with me for "playing the sick card" and even though I'd been there for a couple years, pretty much daily, when I wasn't able to keep up with the forum anymore they weren't so nice. That was a very difficult year when all that happened, not knowing what was happening to me, I never heard of Raynaud's & doctors didn't know what it was (told me that blood was pooling in my hands for too long & being cold was my new normal & to move to a warmer climate if I couldn't deal with it.).
  9. hey barefut, I SO get that pudding thing, like when I wash my daughter's hair I am on my knees by the tub & when I stand up there are major dents in my knees that last forever. On my eyebrows I can push one up with my finger & it'll stay, if I hang onto hangers with clothes on them for 5 or so minutes, I'll still have dnets in my fingers a few hours later. Is that "pudding thing" a sclero thing? I haven't been diagnosed as having it, my doctor has mentioned it but about 2 years ago my ANA was neg. However, today I started feeling scared about it because last year my skin would feel tight once in a great while, but the last couple of weeks it has been everyday, all day & I've been sick to my stomach, my WBC's were low 4 weeks ago... don't know what that's about but the doctor said probably nothing, I wake up with bladder & hip pain that goes away after going to the bathroom, I'm SO tired.... I'm scared that if I do have sclero and it doesn't get diagnosed soon enough that more damage will be done to my insides that could've been prevented or slowed down you know? I mean, my lungs are a mess but I don't even know how to explain it to my doctor, whenever I get talking or reading outloud, after a couple of minutes I start smelling ammonia (it seems like because your breathing changes when you do a lot of talking (which is normal) that whatever accumulates in my lungs (the not normal part) & I smell ammonia...something like that) & often breathing some things makes me cough, like my lungs can't take the fumes... like a sucker, coffee grounds, etc., it isn't always the same, sometimes certain things bug me sometimes they don't... allergy tests were negative. Anyways... blah blah blah Thanks for "listening" this turned into a vent for me.
  10. Ah shucks... I'll jump in on this one since it cracks me up when a doctor corrects me... It is funny because I've heard it come from the mouth of a Rheumatologist, Immunologist, primary care physician, Cardiologist, & Neurologist & I swear they all pronounce it differently. SO... it inspired me to do a little pronunciation research & I found that "aud" is pronounced "Oh" like hot is French is Chaud & pronounced the same way we pronounce "show" and I think some others mentioned that since it was a disease named after him, there is the "s" on the end.... making it sound the way we say "shows". I couldn't find "Ray" exactly, so I say "Raynose" I've heard from the "pros" Raynowds, ruhnowds, ruhnodes, ruhnose, ray-knawds, ruhknawds, raynows, & ruhnows. That's why I can't help but have a slightly ammused smile each time I hear one pronounce it.
  11. Thank you for your responses. The tightening skin seems almost everywhere to me, like, my ankles, actually, ankles feel like the skin is thicker and I get what looks like edematous stripes across the front of my ankle when I wear socks, which seems so weird since my socks are not tight. My skin on my abdomen must be thicker because sitting is uncomfortable like it was when I weighed 165, right now I am 125. In other words, when I was heavier... bending over & stuff was uncomfortable, my skin wouldn't "crease" as easily, once I lost all the weight, that was no longer an issue, now it is an issue but I'm no heavier. I feel the skin on my lower back pull tight when I bend over, and my calves often feel tight. I thought maybe the doctor was right that it's probably raynaud's making hands tight except that I don't see Raynaud's attacks in the other places that are tight. What happens with my skin sounds just like what epasen says... coming & going but progressing at the same time. So in some ares, like my hands, the extent of tightness comes & goes but it is permanently tighter than it was a year ago. I saw a rheumatologist about 2 years ago who did a full lab workup for autoimmune disease stuff. Just the RF was slightly positive & his report he sent to my primary (a different primary doctor at the time) says "possible occult connective tissue disease, although to date labratory workup is negative." Something like that. He also said I had some "dilated and irregular" nailfold capillaries. Which, to my knowledge is not seen in primary Raynaud's... atleast everything I've ever read says that.
  12. I have an appt. with a dermatologist today & I'm trying to decide what things I should tell her. I have no diagnosis other than the Raynaud's and the dilated & irregular capillaries 2 years ago with a neg. ANA. & Pos. RF. I know this sounds weird, but for several months now I keep getting this feeling just above my belly button (not on my skin, but subdermal) that feels like it's being ripped. When I tried to find what could cause belly button pain all I found was appendicitis or something that couldn't be the case because if that was it, whatever it was I read, then I would've needed treatment probably that day, so it couldn't be something that comes and goes all the time. Then this other weird thing... goosebumps on my legs... sometimes I feel a patch of skin get tight on my leg, I look down & it's a patch of goosebumps. That may be just some normal thing, I don't know, it happens all the time, I will have a few patches at a time here & there. But lately, I've been feeling that same kind of sudden tightening on the upper portion of my face, like from my temples up into my scalp only there's no goosebumps. It just shrinks up, feels like I just received a facelift! When I bend over, I feel skin pull tight across my lower back. and sometimes, if my hands aren't tight then just the skin pulls from the sides of my fingernails down and tips of fingers down, kind of pleated looking.
  13. Thanks a ton for the info, it's good to know what other people have that is normal or unrelated because I have no clue. You know how it is, anyone who had to go through this for a couple or few years until they found out what was wrong & got help, every new thing that comes up you wonder if it will ring any bells for the doctor. My dermatologist had about 5 minutes with me....lol. She's my husband's dermatologist, he saw her once I should say. Anyways, I made the appt. to see if she could make my nails better like his got better with a month of lotrimin, so she took a couple of scrapes & said she'd have the results in 2 weeks. I asked her, briefly about skin tightening, she asked if my hands ever change color, like blue.... rofl. She doesn't know anything about me. I told her I have Raynaud's & about the nailfold capillaroscopy and that I had ana tests done 2 years ago & they were neg. Well, the ImG or something wasn't so they did it again & the next time it was neg. She said it might be a good idea to rerun those tests & that she wants to wait for the culture to come back from my toe nails because she's going to have to run some labs then anyways to keep an eye on my liver because of the Lotrimen (sp). She didn't give the sores (that you can't see) on the end of my toes the time of day. Maybe I shouldn't have called them sores...lol. They just are really sensitive to touch & hurt on the inside, just the big toe, in a pea sized spot. Maybe she thinks it has to do with the toe nail issue?
  14. Sorry you're dealing with so much. I hope the doctor you see this morning is much better! I hope you post how it goes.
  15. Hi all, I haven't been here in a while or posted in a while, been going back to school. I haven't been diagnosed with Sclero, but have had Raynaud's with irregular & dialated nailfold capillaries & a high RF test & negative ANA, that was 2 years ago. Haven't had any ANA tests since. I of course have a gazzilion other rediculous symptoms. One doctor thinks I have Myasthenia Gravis (labs were negative though), another just ran an MRI for MS, but I don't think either of those explain all the symptoms I have. Anywho, I was wondering, in the beginning, is the skin tightening gradual in a way that you have days where it's tighter than others? I have had swollen hands & fingers for over a year, they're much worse in the morning when I wake & if I don't have my wedding ring on before I go to bed (sometimes my hands are too swollen to wear it) then I definetly will not be able to get it on in the morning. For example, I notice sometimes when typing that the skin on my hands gets tighter after a while, so much so that I can't flatten my right hand out as much as the left AND my skin is shiney & tight, looks polished, & it's my entire hand, over part of my wrist. I also notices lately that sometimes my face feels tight up around my temples, like too tight of a pony tail. Sometimes my upper lip feels tight and the other day, I went to take a bite of a donut & it just crashed into my lips...as in, it wasn't going to fit! But, this tightness seems to come and go, it's not that tight all the time.
  16. Thanks a ton for the info. My Neuro just called, actually, my Primary did, with the results of an MRI the Neuro ordered (looking for MS again) and they said I have sinusitis & are calling in a prescription for me. I just chuckled to myself when I got off the phone because I got sick the day AFTER the MRI was scheduled & had the MRI done about 2 weeks after that. The reason it made me chuckle was because when I saw the Neuro, I told him that when I lay down, saliva sits in the back of my throat & goes up my nose & burns like I just choked on pool water, chlorine stuff you know? Anyways, I'm certain that's where the sinus infection came from. Well, I see a dermatologist Dr on Friday for my toe nails, but I'm hoping that maybe she'll be able to figure out some of this other stuff, if my skin gets tight again like that I will get a picture to show her. I've had it for a year now where it would get tight just over my knuckles on my right hand, now the left hand does that & the right hand is the one that gets completely tight, sunken in in the center of my palm. OH, the cold temps, that too can decrease swelling & also make my finger tips look just like I got out of the tub. One morning, I stuck my fingers out my bedroom window & flicked snow off the window sill to see if it'd bring some of the swelling & aching down.... sure did!
  17. I believe for certain it is possible to have it, but I disagree with the doctor implying it's [all] due to Fibro & then not having a patient come back now & then to check up on them when they have signs of other things going on. I know Fibro is a real thing & I know of people that have gotten fibro as a result of cancer, other autoimmune diseases, etc. So, Fibro I think can explain symptoms in addition to other diagnosis, but I don't like it when doctors use it as a catch all when they don't have an answer.... like they often do with depression, especially when you don't even meet the criteria for that diagnosis. One thing that does make me wonder about haing it is the fact that the tops of my feet are unusually sensitive to... this may seem weird, but when I wear my rubber sandals (those popular ones with the crocodile on them) if any pieces of grass or anything get stuck on the upper inside, feels like I'm getting poked but anywhere else on my skin those pieces of grass are nothing. That seems to me like an over sensitivity-fibro type thing.
  18. Do any of you struggle with your fingers sticking together when they're swollen? I used to just have a problem in the heat only, like if I was golfing & it was hard to grip the club & swing it because fingers were swollen & sticky. But yesterday, in the house with the air on (& a sweatshirt...lol) I kept having to get my hands wet while trying to cut potatoes (I know many of you probably have a hard time cutting potatoes period & can't golf) but I kept getting them wet so that my fingers weren't stuck together. I haven't been diagnosed with SSC, I have Raynaud's & the nailfold capilaroscopy showed dilatated & irregular capilaries but my ANA was neg so rheumatologist said, "We'll call this fibromyalgia for now". He put me on NSAIDS. I haven't been back to see him since November I think. Now I'm getting these up & down lines above the right side of my upper lip (I'm 33) which is the side of my face I first felt tightening by my eyes, I've felt tightening by my eyes for months now & my nose is shiny & tight & now this morning I noticed when I was putting mascara on (holding mouth open & eyebrows up like a dork) that there are shiny tight areas above my upper lip & when I open my mouth, I feel the skin pulling by the corner of my eyes. The skin on my knuckles & back of hands gets taut & shiny, feeling it pull over my "outer wrist bone" whatever it's called. But they're not like that 24-7 & sometimes I notice it after washing hands. Any advice greatly appreciated. I'm exhausted & have PMS....lol, & every month I get frustrated with all this stuff, waking up with swollen achey fingers, etc. Just want to feel better. Oh, I my friggin' ears... always having fullness sensation but there's no fluid in them. I forgot to mention that I'm getting I think telengiactasias (sp) on lips & eyelids (upper & lower). On eyes looks like a brownish purple spot but when pulled is a vein. On lips, dark areas that when pulled is a vein. Is that part of it all?
  19. I was told "Let's just call it fibromyalgia for now" & put on an NSAID for pain... which I read painkillers don't help with it, but who knows. I didn't meet the criteria as far as the pain points, I had 7 or 8 I think the first appt. & none the second (1 month of NSAIDS). I don't buy the Fibro bit at all, maybe as a result of some underlying issues, but fibro isn't what's behind all that pain I was in before taking the NSAID or the clubbing fingers or the pitting edema in my legs & eyebrows (In the morning, I can push in/up undermy eye brow for a few seconds & that eye brow will stay up from the fluid in there), or the dilatated & irregular nailfold capillaries, or the tight skin on my knuckles & backs of hands, or the dry eyes & mouth, or the tight skin on my calves & the patchy hairloss there, etc. For me, I've decided to educate myself, take precautionary measures, not worry about the diagnosis for now & just have a heads up for stuff. Like, I noticed my Creatinine levels increased consistantly over 10 months & my eGFR dropped aroun d 2.5ml a month for 10 months straight. I also had petechiae on my toes (in the same spot where it taqkes forever for color to come back to them & where they are ususally blue) & I read NSAIDS can affect both kidney function & can cause petechiae. I quit the NSAIDS & I no longer see the petechiae. Coincidence... maybe. Either way, I don't rely completely on the doctors. If I think something might be going on, I take precautionary measures regardless of what the doctor says unless they have solid evidence. BUT.... I do this with in reason... things like stopping the NSAIDS, increasing water intake, cutting back on caffeine, stretching my hands, keeping skin moisturized, etc., but I wouldn't do anything that should not be done without a doctors go ahead.
  20. I didn't have time to read all the responses so I apologize if some of my info is a repeat, but I have Raynauds as well. I get a handicap plackard in the winter months, I use many different heating tools like microwavable things, heat packets for toes, feet, & hands that you buy at a sporting goods store, hunters use them. You peel the tape off & that activates the heat. I put them on the balls of my feet & toes when I go out in the winter & in my gloves. I have problems in the summer as well, still use the heating blanket etc. I believe that this is how it goes in regards to raynauds attacks & damage done, & I may be wrong, but a raynaud's attack means a lack of oxygen in that area, your body is made of cells, cells need oxygen to function & survive. When the cells in the affected area are lacking in oxygen, damage, even slight damage, can occur. The more attacks there are & the longer in duration they are, the more times those cells go with out oxygen & the longer they go without oxygen & the more damage is done. The more damage is done, the more suseptable they are to raynauds attacks that are longer in duration & it's kind of a viscius cycle. Again, I may be wrong on this but from what I've learned in Biology & rad about Raynaud's.... I think that's sort of how it goes. So it's important to protect your body as much as possible & keep attacks & duration of attacks to a minimum. Also, in regards to warming them, when extremities are warmed up too quickly damage gets done & I am pretty sure that that is how chilblains occur. It's important to warm up slowly in warm water. I admit that I have been guilty of breaking this rule though.
  21. I wish I had some good advice or words for you, I am only just recently dealing with a changing face, only I have no diagnosis, haven't been to rheumatologist in several months. I have vertical lines, more prominant on Rt side of upper lip, one afternoon I did a double take in the mirror because I saw a crabby looking lady in the mirror...not crabby though... just tight lipped with those lines. I notice in the morning sometimes I don't see them because my face is puffy, but for the most part of the day, I have this look on my mouth that looks like vertical lines & a horizontal indentation just above lips & then swollen eyebrows & eyelids sticking out & a smooth shiny nose. The lips bother me the most because I look mad. I have always had VERY young looking skin, I'm JUST 33 & people think I'm early 20's at most, I've even been accused of not being old enough to serve alcohol!
  22. I've had a weird sensation like that just above & on the side of one knuckle. I have NO idea what it is but it almost stings like it's a splinter or something only it's been there for months & there is nothing visible that I can see. It hurts more if something rubs over it than it does if pressure is applied though.
  23. First, according to this website, if you have at least 2 of CREST then you have CREST and somewhere I read if you have 3 of ABCDCREST you have systemic sclerosis with a 90-something % accuracy. I have Raynaud's (with positive nailfold capillary test), esophageal, and according to the ABCDCREST, the S in CREST can be either sclerodactyly or bilateral non pitting edema of the fingers, especially in mornings...which I also have. Anyways, that said.... So, I'm at my primary care physician (internal medicine though) and I asked him about the skin on the top of my hands being tight and shiny/smooth, sucked in between hand bones, pulling over wrist bone and swollen fingers (swollen worse in the mornings). Well, there is some hardness on my knuckles with darker skin and it's dry. He says I have eczema and prescribed some lotion for it. Insisting it's causing both the dry/tough knuckles and the smooth tight skin ∧ saying my fingers don't have much edema in them (it's 3pm and if I'm freezing cold for a long enough period of time, some of the swelling reduces, but in the morning...I can't even interlock my fingers and they ache...as it gets warmer, it's hard to write or...don't laugh....golf). I looked it up. Eczema begins with intense itching, rash shows up later. Diagnosed by finding out if there's severe itching, how the scaly rash appeared (intense itching then rash), and is identified by a characteristic scaly rash (which they can scrape off and test to make sure it's not a fungus before diagnosing eczema). He never asked about itching, I never said itch, it's farthest thing from scaly! SO, he also said that my fingers would be much more swollen and skin on top of hands and fingers would be so tight I wouldn't hardly be able to move. True...but... when someone has scleroderma....does your skin just automatically go from normal, healthy, very elastic skin to overnight sclerodactyly with contractures or can it take months of fingers swollen (especially in the morning) and slow tightening? Especially if you don't have the fast progressing type?
  24. Ok, the ABCDCREST article is on the ISN website CREST syndrome Also, the last few times I've seen my mom, when she holds my hand, she always asks me why my skin feels thick and hard. I don't think it feels hard, I think my fingers feel think and the palm of my hand. BUT since she's my mom, I guess she would notice when she touches my hands that they feel different. I also have tissue loss in the finger pads, but no calcinosis.
  25. Morning could have some to do with it, I always thought ti was because cereal is grainey.....lol. But then I still have the peanuts & what not. Late yesterday I had popcorn & didn't seem to have the problem...so maybe morning is worse?