luvbnmom3

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Everything posted by luvbnmom3

  1. So... I was at a graduation open house the other day where it happened to be cold & rainey. I'm walking around talking to people & whenever I moved my right hand, it felt like my finger pad (in my thumb where I have the most tissue loss) was jiggling!!! It was weird, I could shake my hand & feel it, like there was water in there or something... maybe the underside of the skin loose or something & being that cold, there wasn't any swelling in my hands so I felt it move? Anyway, I know that probably sounds crazy but I thought I throw it out there in case anyone else has been there done that. I'm sure it just had to be loose skin...when I get cold enough, my thumb pads get so flat, they're also the least tight compared to my other fingers.
  2. Welcome! Yeah, that's exactly it, it is like it happens when they get deflated...even then though it seems there have to be some other specific things that are just so...lol. Yup...weird....& interesting...lol
  3. I can relate to some of the jaw pain, but my other jaw symptoms seem different, my jaw/face/cheeks feel like they're stiff & tight as if I was in a pressure chamber or something. That's the only way I can come up with to describe it. It is like all the muslces in my face are contracted as tightly as they can be but at the same time feels like my face is going to explode....lol. Maybe it is sinus stuff...who knows. I hope you get to feeling better. I see the dentist tomorrow & am NOT looking forward to it. I don't know if my mouth is smaller on the inside, or if that is possible, but when I brush my teeth, I am constantly crashing the end of the toothbrush into the back/sides of my mouth... that didn't used to be a problem & I don't have a bigger toothbrush before. Oh & YES on the migraines with the jaw, I ALWAYS get a migraine after the dentist.
  4. I'm sorry to hear so many have to deal with depression on top of everything else. I had dealt with it in the past at one point, early 20's, but lately I feel just plain old angry & some depression because of how unpredictable & unmanageable my body is... If it is cold, then I can't get warm, if it is muggy & hot, then my fingers all stick together & I swell up & my joints ache from all the pressure. Sometimes I am so tired I could cry, other times I'm fine, sometimes my arms work, sometimes they don't, sometimes I can smile, sometimes my mouth is too weak so my mouth trembles when I smile! Add to that I don't have an official diagnosis (I don't think, although the radiologist today came in & said, "Scleroderma huh?" when preping me for barium swallow). Anyways, I'm glad you came in to say hi & let everyone know what's up, everyone here is so kind & caring, it has been a great support to me. I have felt so alone with this at times but I come here & suddenly I'm surrounded by people who care & understand. Hang in there & stick around when you can! (((((HUGS)))))
  5. ROFL...no doubt. Is it especially so when your doctor doesn't know for sure what is going on....I always wonder if once they just figure it out & start helping me if I won't notice stuff as much...you know... once you have your answer you can move on idea... but then I know some symptoms you can't ignore...lol.
  6. Does Narvasc help with being so cold in general? I ask because my Internal med doctor says that Raynaud's doesn't cause me to be so incredibly cold, where it takes a couple hours sometimes in a heating blanket before I start warming up. There are nights, & days too, when I just want to cry because I am cold to the bone & can't seem to get warm & I would LOVE to have help with that. Anyways, that is great news either way that the narvasc is helping your Raynaud's!!!
  7. Welcome! It sounds like you have a good Dr. that is paying attention & sending you out for a second opinion. I hope you get some solid answers at the end of the month! From what I've read over the last year, it seems that no Ssc patient is alike, symptoms range all over the place from mild to extreme & they present themselves differently in many & not everyone experiences the same ones. Hang in there!
  8. Mine is pretty much always on the low side, I do take Verapamil but a small dose & to help with migraines & maybe raynaud's... can't say it has helped the Raynaud's because it has gotten worse anyways, but maybe it would be even worse than that with out? I haven't ever had high blood pressure either but I do get palpitations now & then. I'm glad the doctors caught yours & are treating it.
  9. I twitch like crazy all the time, but especially when I am laying down & trying to go to sleep. I will have going through another EMG on Wednesday (had one a year ago that was fine). To me, it feels like my body is trying to relax into the matress but everything has to jerk into a relaxed postion & it takes a while to get there. During the day, I twitch all over, especially legs, like I've been startled... maybe I do it in my sleep too, I don't know. My toes twitch, like pop up quick (1 toe every now & then). Who KNOWS....lol. I hope somebody has some good answers for ya~!
  10. I had a bad cold or something, during that cold, whenever I inhaled to cough I would get this vibration in my chest, felt like someone held a pager against my chest, & after the cold went away, I have had all this popping in the exact same spot ever since. I think this was also during the time that we had a few deaths in the family with in a few months of eachother as well & it was about 18 months after having a baby. But 3 months after the cold, I started experiencing an intolerance for hot or cold, night sweats, Raynaud's, myalgia's, arthralgias, heart palpitations, period changed, muscle spasms everywhere, needing naps, swallowing difficulty, in the spring (6 months after the cold) the swollen hands every morning started & edema everywhere (face, legs, back included) & 1 year after onset of Raynaud's, my skin started to feel tighter just over my knuckles on my hands. ...The myalgias & arthralgias got almost completely better after about 10 months of NSAIDS & I haven't had near the problem with them ever since, but everything else has gotten worse. I've only recently been experiencing more arthralgias.
  11. Do any of you or have any of you experienced your scalp feeling burnt, like it would with chemicals from a hair product, as well as itching & what do you do for it? My scalp started to itch about a month ago, lately it feels burnt & itchy, but my friend says it doesn't look red or irratated, but that it looks "tight". I don't know how a scalp looks tighter than it normally would though. I thought maybe it was sun-burned except that I have thick hair & I wasn't outside that long & nothing else got burned...not to mention I've been out in the sun for hours before that day I first felt the burn & didn't have that problem.
  12. Oh & thank you for mentioning that forum, it never occured to me to look into a forum for dermatomyositis. When you're going through something that is just so rare & your symptoms don't present classically (like my doctor says raynaud's just doesn't normally affect the thumbs & that it doesn't attack lungs either... I think the lungs thing is ignorance, but my thumbs are worse than my fingers with tissue pad loss & pain) Anyways, add to that that I love research & reading medical literature & am going to school... so I have a greater knowledge & understanding for some things so when I go to my doctor, he sometimes treats my like a hypocondriac because I suggest possiblities to him... the other day I asked him if it was possible that when I start smelling ammonia when I've been reading outloud for 10 minutes or so, that maybe there is something with my lungs that makes the gas exchange not as efficient as it should be... then he says, "Oh, so now you think you have obstructive lung disease from Scleroderma?" lol. I said, "I didn't say that at all; YOU have no idea why I am smelling ammonia so I decided to do some reading & this is MERELY a suggestion of something to look into, you are the doctor & have a better understanding of that stuff, that is why I am asking YOU!" Anyways, my point is just that going to a fuorum is a great place not only for support but for getting a better idea of what goes on from the patients perspective...I'm rambling, I know, & probably making no sense...lol
  13. Huh....that is interesting about the Dermatomyositis & the scalp... I have not received a diagnosis of Sclero, my doctor says it is a possibility but that my ANA is negative (he is an internist & hasn't seen a sclero patient or heard about it in 17 or so years). He thinks my skin is getting tight because of Raynaud's...but I don't have Raynaud's on my face or legs or neck, etc. Anyways...Drematomyositis has never been brought up but I often wondered if that is what has been going on except that I don't know if tight skin goes with dermatomyositis. Thanks a TON everyone for your imput... just hearing that yes, some of you & some that have Dermatomyositis have this issue confirms for me that it probably isn't some unrelated fluke thing going on & to go see my dermatologist. I did see a Rheumatologist (who is in the office with one who is a member of the American college of Rheumatology) a couple years ago, he wrote "possible occult connective tissue disease" in the report & that I had some enlarged & irregular capillaries in my nailfolds, but when I went back to him last winter because my toes kept getting petechiae on them & I was smelling ammonia & the skin of my knuckles kept getting tight... he didn't have any answers for me so I am reluctant to go back.
  14. Thank you for the detailed updates! I was wondering if she was seeing improvements with Sclero related things, like her lungs & skin, so that is so awesome! I saw on "Mystery Diagnosis" (which is kind of funny because when it is your normal you forget it is rare enough to be on that show) ...I think that's the show anyways... a young lady, close to Lisa's age, received a Stem Cell transplant as well & immediately started having results with her skin getting softer & her lungs got stronger. They showed her how she is doing now & other than some scarring from a few things, her skin is awesome & her lungs are great & she gets to do so much... it went well & it sounds like Lisa is well on her way to the same. That is just such a miracle to me!
  15. Thanks ladies! You know, maybe switching to a really mild shampoo like you suggested may help incase there is some kind of irratation for whatever reason. I do notice that sometimes my upper face (eye level & up) feels like I'm wearing a pony tail that is too tight, but I can't recall if the 2 happen around the same time frame. Anywho... no matter... it is all power for the course. It seems everytime I have to go to the doctor I have "bad news" or more or different symptoms... I have a check up with my neuro (for headacheless migraines) & I have to tell him my muscle weakness is worse in shoulders & that they tremor with movement now... but I don't even want to go there!
  16. What'd the doctor have to say birdman? I hope you get it resolved soon! I have had the same kind of pain on both feet, but it is probably something entirely different, it has come & gone a few times. My podiatrist, about a year ago, said I had something growing in there...I don't recall if he said a corn or not... I just know there is such a thing as a corn...lol. Anyways, walking seems to irratate it but the moon has to be right or something too because there never seems to be any rhyme or reason to why sometimes it is there & sometimes not...lol. Anyways, let us know what the doctor says, hopefully you can be painfree there shortly!
  17. Welcome Razz! I like the chocrazz... idea too...lol. I LOVE Raspberry ANYTHING & especially in chocolate....mmmmm.... now you're making me hungry! It is awsome here, I have not been diagnosed with Sclero, it has been suggested by a few doctors, lab work is neg. except for the elevated RF. At anyrate, I seem to struggle with several of the same symptoms from the raynauds to the tightening skin & the digestive stuff and everyone here has always been precious & fun... very supportive. It is the only place I go & can go when I feel alone with all of this.
  18. Hi Sadie! It sounds like you're in great hands over there. I have seen Hospice care in action a few times & they have always been the sweetest & most caring people. I am curious too as to what it is that you are holding, it looks like a little puppy!
  19. I just popped in quick to see how she is & couldn't find a post, I don't know everyone in this forum yet so I'm not sure how anyone even finds out or if they can. I've had my nose buried in a microbiology book so I have just had time to pop in for a minute here in there. Anyways, either way, I'm thinking of you peanut & hoping you are feeling better & better everyday!
  20. Thank you for the update, That's great she's doing better, it has been like 4 or 5 days since your update, hopefully she's been able to go back to the hotel or home by now!
  21. That is good news that she is more responsive & getting good rest. I've been thinking about her a lot. Thank you for the update!
  22. Hang in there Peanut! I hope you're feeling much better today!
  23. I hate going to the doctor! I'm sick of going, they never know anything. For the last several months, sometimes when I lay down at night my entire abdomen (around to my back) feels like...well, I hate to say a seizure...sounds so dramatic & it's not that dramatic, but like a contraction or something... never painful. Last night though, as soon as I laid down on my stomach... very painful & contraction feeling, just like labor. I can feel it in my lower back... it's so painful. I tried to just lay there thinking maybe my body was tense & needed to relax... that lasted about 30 seconds & I couldn't take it so I turned to my side which eleviated it about 75% & it slowly went away. I get these vibration (like your cellphone feels in your pocket when it is on vibrate) down the inside of my left arm, in my left flank & across my chest. My back often feels rigid & I have to make a conscious effort to relax which helps very little. Anyways, I know nobody has answers but I just feel like crying, I'm sick of feeling sick, I sick of being tired. I have plans! I want to be a nurse practitioner! I LOVE school, I LOVE my life & I'm sick of everything getting in my WAY! I seriously should just go to Mayo or Uof M or something, show them my pictures, have them check my skin thickness & tell them the whole story. I realized the "wrinkles" on my ankles are just thick skin. Thank you for listening. I'll cheer up... I swear....lol :P
  24. AHhhhhh another good topic! More fun reading for me when this class gets done! Speaking of class... I've been a stay at home mom for the last 12 years & am now in school getting my associates in nursing. Truth be told, I'll probably never stop going to school though & just keep building on that degree as I love research & would like to be a nurse practitioner. I went to college briefly right out of highschool but didn't go for more than a semester because I was planning to get married to who knows who someday & be a stay at home mom. I never wanted a career... I was A.D.D. & didn't know it then, so school was hard. Now that I know that I wasn't a matter of not being able to do good & that I can get A's, I love school & love the idea of a career.
  25. I can't wait to go through all of your posts & read them, I never noticed the Sclero Den till today! I'm studying for a microbiology test, but taking a quick break, when this class is done I'm SO coming here to read. I've always wondered about everyone's names. Barefoot always sticks in my head....lol. Anyways, I love being a mom, I have 3 kids.... so... there ya have it!