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Medical Forum / Diseases and Disorders / Lupus / May 2004Concerns re: Lupus & Me .....RA & OA? new to board
Hi all. New to board. I have a few questions for all of you with lupus and the premiere diagnosis. A little about my situation. I am 35, mother of 3(4 if you include hubby). Last year I had pain in my right hand (ring & pinky) and some stiffness in my feet when I woke up. Talked to my Dr. and she basically said I was "getting older" and it "could be" arthritis. Ok, I bought it. So....Last February, I woke up one day and had this huge blister at the top of my ear lobe, which turned crusty and yucky. Called the Dr. about this too, no appt needed "It's nothing". I had had crusty "stuff" at the top of my ears,many times in the past, but attributed it to Hair styling products.... Right after the blister, I developed this pain in my left thumb (feels like I pulled something in it), well it has never gone away and seems to be getting worse every day. I can not use it with out extreme pain. I can not button, zip, open a jar or anything that uses direct pressure. Now about amonth ago, I developed a pain in my right elbow, and it seems to be radiating out and I can not straighten out my arm all the way with out pain. The pain is continuous and hot at times like the heat of a candle is under the joint area, but more severe when use is necessary with hands and arm. I am not a medicine taker, but now I feel I find myself popping motrin all the time. I have had fatigue alot lately, (used to be insomniac, now my head hits the pillow and I am out until my alarm goes off, and I could use a nap in the afternoon, but kids don't permit it. Always cold.....and now somewhat depressed. (not suicidal but just kind of blue and could cry when the pain starts bad) I usually am a very happy person smiling all the time, but I feel like I am a little sad)??? I feel like I can not concentrate or finish a task. Is it ADD too? (hehehe) I have gained 10 pounds, due to fatigue and pain of working out. I have always been a very strong "girl" but now I feel like a weakling. Here is my question: My Grandfather had RA & Grandmother had OA. My mother shows no traits of anything (73 and acts like 53). I don't want to sound like a hypochondriac or self diagnosing. I have no siblings to compare to. Hubby is realatively supportive (but unless he is in pain he has little sympathy-not that he is uncaring - normal man reaction)(sorry boys reading this)...... But I have been living with some pain for some time, I know I am getting older, I can handle it, but this much pain all at once is weird. Any one care to comment? Leslie Hi Leslie, Welcome to the group. I hope we can be of some help to you. I would suggest that you see a rheumatologist. You need to have blood work done to check for autoimmune problems, but also for thyroid function. A thyroid problem was the first thing that popped into my head when I read your post. It can be responsible for all sorts of things. The weight gain, fatigue and the "blue feeling" made me think in that direction. Please keep us informed as things unfold. Any blood test results you have would give us more to go on. Post them, if you would like to do so. We have another Leslie on board here. Could you add a number or letter to you signature, so we could keep you straight in our minds? We are easily confused around here. Well, I am anyway. <g> BJ-Sk. Canada > Hi all. New to board. I have a few questions for all of you with > lupus and the premiere diagnosis. A little about my situation. [quoted text clipped - 38 lines] > Any one care to comment? > Leslie I agree with BJ. Have them do a full arthritis panel. Thats how I was dign with RA. I have RA and Lupus. Just whatever you do do not give up until you are satisfied. > Hi Leslie, > Welcome to the group. I hope we can be of some help to you. I would suggest [quoted text clipped - 51 lines] > > Any one care to comment? > > Leslie This is the "new Leslie C." Hi all..........Thank you for all your concern and responses. I am going to call my Dr tomorrow and schedule an appointment ASAP. I have bugged them about my thyroid it is normal, but low normal if that makes any sense. My mom was here today and looked at my fingers and said some of them are crooked. My Grandmother had Osteoperosis and not OA. (my bad) But a strange thing happened today that has happened in the past, is that I was in the sun for about 30 min's and I got a rash on my legs that was Lacey like. Almost like the rash you get with 5th's disease...and it itched. Go figure. I know you all are not Dr's or else you would have US all cured....hehehe, but I do apprciate your support and advice. happy mothers day, The New Leslie C. Hi new Leslie C, Make sure they check your TSH when testing you for thyroid problems. Low normal readings on your previous tests make me wonder. Good luck tomorrow. I hope you will let us know how it goes. BJ-Sk. Canada > This is the "new Leslie C." > Hi all..........Thank you for all your concern and responses. I am [quoted text clipped - 10 lines] > happy mothers day, > The New Leslie C. > This is the "new Leslie C." > Hi all..........Thank you for all your concern and responses. I am > going to call my Dr tomorrow and schedule an appointment ASAP. I have > bugged them about my thyroid it is normal, but low normal if that > makes any sense. no, that doesn't make sense (to me). I speak in terms of values (and normal ranges listed on the labwork). J Well hello Leslie! - Leslie here, this is a great newsgroup and you will find lots of good people and info here - welcome!! > Hi all. New to board. I have a few questions for all of you with > lupus and the premiere diagnosis. A little about my situation. [quoted text clipped - 38 lines] > Any one care to comment? > Leslie Hi Leslie here, <g> How are you doing? We haven't seen you for a while. BJ-Sk. Canada > Well hello Leslie! - Leslie here, > this is a great newsgroup and you will find lots of good people and info [quoted text clipped - 42 lines] > > Any one care to comment? > > Leslie Hi BJ - Well I'm haning by a thread these days - the nervous system is toast and that is not much fun, lol - seems my ups and downs are in a real tizzy lately. Thanks for asking. How are you? Thawed out yet? Leslie > Hi Leslie here, <g> > How are you doing? We haven't seen you for a while. [quoted text clipped - 45 lines] > > > Any one care to comment? > > > Leslie Hi Leslie, I hope that thead you are hanging by is a strong one. <g> I worry about you when you stop posting. Glad you dropped in on this one. No, I can't say we have thawed out yet. Still no leaves on the trees. We are expecting high winds and 6-10" on snow today. It is only around the freezing point, so this prairie chick is freezing her tail feathers off. Some days I just want out of here so bad. Hope my thread doesn't snap in the cold. BJ-Sk. Canada > Hi BJ - > Well I'm haning by a thread these days - the nervous system is toast and [quoted text clipped - 52 lines] > > > > Any one care to comment? > > > > Leslie BJ - I will stop my whining about our weird weahther now... hot, cold, sunny, then rain and there you are freezing your tush off! I am hoping this thread is made of kevlar or steel, it's thin these days Leslie > Hi Leslie, > I hope that thead you are hanging by is a strong one. <g> I worry about you [quoted text clipped - 75 lines] > > > > > Any one care to comment? > > > > > Leslie Hi Leslie, I am rather worried about you. Is depression a big factor in how you are feeling? I don't want to pry, but I hope you know that I would certainly listen if you want to talk about things in more detail. BJ-Sk. Canada > BJ - I will stop my whining about our weird weahther now... hot, cold, > sunny, then rain and there you are freezing your tush off! [quoted text clipped - 94 lines] > > > > > > Any one care to comment? > > > > > > Leslie BJ, I know you are not prying - yes depression is a big thing, but of course is it from being weird or am I weird because I am depressed? How do you determine whether to see a counselor or a shrink? how do you explain what you are feeling when you really don't even know yourself? Leslie > Hi Leslie, > I am rather worried about you. Is depression a big factor in how you are [quoted text clipped - 118 lines] > > > > > > > Any one care to comment? > > > > > > > Leslie I am a bit weird myself. I don't have a problem with depression though. Well, not often I mean. I have been down a lot since the death of my little Golden, but that is reactive and to be expected. I think a counselor or a shrink would ask the questions that might get to the root of your depression. They are trained to do that. It just might help. I hate to think of anyone being sad and depressed. That feeling of loneliness and isolation must drag you down even further. I wish there was something I could do to help. Please know that there are people here who really care. BJ-Sk. Canada > BJ, I know you are not prying - yes depression is a big thing, but of > course is it from being weird or am I weird because I am depressed? How do [quoted text clipped - 143 lines] > > > > > > > > Any one care to comment? > > > > > > > > Leslie Sorry - BJ I have to laugh - you have no idea how funny it is that someone might "get to the root of my depression" - this is how I knew my PCP (new as of last year) was going to work for me as he nailed my history on the first visit and I never said a word!!!!! He is brusque and a bit of a smart-aleck, but he does not beat around the bush and he hears me. so....................... root of depression............ dx'd w clinical depression twelve or thirteen years ago.... personal history is no wonder and now I have read countless articles about the body remembering traumas and how head injuries cause so much problems for people..... somedays no reason and other days plenty - it depresses me that I can't wash dishes or have to stay home or inside on sunny days, the nose and taste thing, the eyes are weird and I will pay for this time on the pc.... I keep busy on some days and you know as well as I do that other days it is a big effort to get out of bed... frankly it depresses me more to see smiling people sit across from me and nod .... when I know they have no clue - you know -? Leslie > I am a bit weird myself. I don't have a problem with depression though. > Well, not often I mean. I have been down a lot since the death of my little [quoted text clipped - 171 lines] > > > > > > > > > Any one care to comment? > > > > > > > > > Leslie Hi Leslie, Yes, I do know what you mean. Life is too hard sometimes. Folks here stuggle every day with chronic illness, well meaning people, and lack of understanding. Our physical problems alone are enough to get anyone down. We do the best we can-right? Sometimes I get an empty feeling because I know that I don't pull my own weight, or because there are so many things I had to give up. I guess those are feelings of depression too. Maybe I don't always recognize them as such. Is there anything that helps you when you are very sad? I think I could use some tips. BJ-Sk. Canada > Sorry - BJ I have to laugh - you have no idea how funny it is that someone > might "get to the root of my depression" - [quoted text clipped - 215 lines] > > > > > > > > > > Any one care to comment? > > > > > > > > > > Leslie Music! That is my best therapy - I put on something really upbeat, then I dance around like a maniac IF I can dredge up the energy. Sometimes writing helps, but then I get so pissed about not being able to hold the pen for long at all and the monitor on the pc gives me weirdness.......... I garden - or play in the dirt, when the morning sun is still low or it's cloudy, when I can - I even paint and do other creative things - but the inability to do them when I need to is the depressing thing, and not being able to pull my own weight - after so many years of taking care of everybody it is absolutely bizarre to me that I can barely manage to care for myself somedays. yes - those feelings you described are a type of depression - it's the uncontrollability of it that really sends me Leslie > Hi Leslie, > Yes, I do know what you mean. Life is too hard sometimes. Folks here stuggle [quoted text clipped - 259 lines] > > > > > > > > > > > Any one care to comment? > > > > > > > > > > > Leslie oh BJ, the other things I do - talk to you, go for a drive in the country with radio blaring, or find something to clean Leslie > Hi Leslie, > Yes, I do know what you mean. Life is too hard sometimes. Folks here stuggle [quoted text clipped - 259 lines] > > > > > > > > > > > Any one care to comment? > > > > > > > > > > > Leslie Hey Leslie. That is funny. Loud music boosts my spirits too. So does a drive with radio blaring. Do you think that maybe we are twins? I also clean like a crazy person. Nothing like a sparkling bathroom to make me feel like I had some useful purpose. A walk with my dog helps too. She is old though. I miss the exuberance of my younger dogs. They left me all too soon. I guess you and I will have to talk more often. Between the two of us, we may be able to come up with more things that will give us purpose. BJ-Sk. Canada > oh BJ, the other things I do - talk to you, go for a drive in the country > with radio blaring, or find something to clean [quoted text clipped - 133 lines] > > > > > > > > > > > > > > > > > > > > > > "Leslie" <lgc814@verizon.net> wrote in message news:7d45b675.0405090824.2d79b731@posting.google.com... > > > > > > > > > > > > Hi all. New to board. I have a few questions for all > > of [quoted text clipped - 146 lines] > > > > > > > > > > > > Any one care to comment? > > > > > > > > > > > > Leslie ROTFL! Yes - I too scrub the bathroom - Did I tell you about this dog of ours? She is a ten pound Yorkie (big for a Yorkie, but she is excellent), however she thinks she is a golden retriever, her favorite thing to do is fetch a ball! But she is an old soul at heart, only a year old, but born old - you know. Being unable to throw the ball is a grumper for me. Purpose - yes, oh yes! Hope you don't freeeze today - it is war m here, but I must hide from the sun (sun, in WA? yes folks it really does not rain all the time) Leslie > Hey Leslie. That is funny. Loud music boosts my spirits too. So does a drive > with radio blaring. Do you think that maybe we are twins? I also clean like [quoted text clipped - 329 lines] > > > > > > > > > > > > > Any one care to comment? > > > > > > > > > > > > > Leslie Good Morning Leslie, Glad you have some sun there. It is grey, showering, and the high for today is forcast at about 45F. That is a lot warmer than it was yesterday. It is far too cold for me though. You can bet I will be covering my tail feathers with snuggies. We don't even have leaves on the trees yet. This looks like a day for loud music and cleaning. Hmmm. Perhaps polishing the stove top would be rewarding. Your little dog sounds pretty sweet. Yes, big for a Yorkie. Good company I am sure. I don't know what I will do when my old Golden dies. I can't imagine life without her. She thinks I am cool, even when I look like a warmed up dead thing. Too bad people don't see me the same way. Enjoy your day. Go clean something. BJ-Sk. Canada > ROTFL! > Yes - I too scrub the bathroom - [quoted text clipped - 378 lines] > > > > > > > > > > > > > > Any one care to comment? > > > > > > > > > > > > > > Leslie Hi to all--- Quick Update This is the "New Leslie" reporting in. Called Dr. to get appt Monday, got appt. Tuesday. Saw the doctor and you all are going to be proud yet gasp.... made a list of ailments, aches, pains, crusty stuff, rash on legs when in sun, heart palp.'s, tired...blah, blah blah...gave it to the rn to put in chart. dr came in talked to me, told her what was going on, SHE NEVER LOOKED AT MY FLIPPIN' HANDS. Asked me if I had ever been to a counselor and told me that maybe I have not dealt nwith something from my past and it is manifesting in pain in my hands.........uh yeah. and monkeys fly. I asked her about the pain in my left thumb joint and my pain in my elbow (the right one) and this is where her observations would have been necessary- and she said they are connected by ligaments. I had to explain to her that they are on opposite sides of my body-"hello right and left". I came home and my "grumbling husband" bless his heart, told me to go and get a 2nd opinion and he changed (Bless him again) called this morining, his work to upgrade our insuraance for me - with out me even knowing. I called to do the same thing and they told me he had already called. I take back the things I have mumbled under my breath about men. (no offense) She did order an xray of my thumb, and lab work...CBC, Rheumatoid factor, ANA & ESR. So we will see. What happens if nothing comes back in the tests? Does taking a boat load of Motrin make a difference on the inflamation test? I am going for another opinion if it kills me. I will wait for lab results and xray to lug along for the ride. I will check in later, thanks for all your input and concern. Leslie C. The new Leslie. I dont recall who awsked about the depression, but I think I am PMS and nervous, so alittle more wstressed out more than usual. Life is wonderful in my little house....always a circus. 3 kids (2 teenagers) ;) , hubby, dog cat...who's life isn't.....but t hanks for the concern....I will vent trust me if I need to.... Hi "New Leslie, I read your post last night, but then had trouble finding it again. I often lose things when the threads get too long. Isn't it just so frustrating when you feel the doctor has not truly listened and checked things out thoroughly? That happened to me a number of times over the years. I don't think an autoimmune problem can be ruled out, even if your labs do come back normal. I would certainly get a second opinion, even if that is the case. I doubt the Motrin would change the results of your blood work, but I am not really sure about that. Keep in mind that you know your body better than anyone. Trust your instincts. Sometimes it is hard to keep that in focus when a doctor asks about conselling. Post your lab results, if you wish. Somebody here can likely help you interpret them. Try not to get discouraged. A diagnosis can be a long time coming. BJ-Sk. Canada > Hi to all--- > Quick Update This is the "New Leslie" reporting in. [quoted text clipped - 39 lines] > ;) , hubby, dog cat...who's life isn't.....but t hanks for the > concern....I will vent trust me if I need to.... Hi all. I havent gotten my labs back yet, going to call the Dr. after lunch to see if they have gotten them. I went this am to have my xray of my sore thumb area and left hand. I told them I wanted a copy of my film to take with me to another dr. for a 2nd opinion, so they gave them to me. OK, I am so totally new to this I need an explanation: Pain is in Left hand (the one xrayed). in the bottom thumb joint at the base, and in the base knuckle of my index finger. Pain is in other hand,but this one is the only one xrayd). XXxxxray's show in those same joints Thumb- has 2 small funny looking floating things. One in between the hand bone and thumb bone, but off to the side where my hand hurts (The size of a pencil eraser & The other is kind of squishy funky shaped like gum in between the joint) and one inbetween the hand bone and the index finger joint area (it is the size of a small pea). Just the new Leslie checking in........Hubby is the best! I patted him on the bottom for you Duckie! Leslie C. > Hi "New Leslie, > I read your post last night, but then had trouble finding it again. I often [quoted text clipped - 53 lines] > > ;) , hubby, dog cat...who's life isn't.....but t hanks for the > > concern....I will vent trust me if I need to.... [ >XXxxxray's show in those same joints Thumb- has 2 small funny looking >floating things. One in between the hand bone and thumb bone, but off >to the side where my hand hurts (The size of a pencil eraser & The >other is kind of squishy funky shaped like gum in between the joint) >and one inbetween the hand bone and the index finger joint area (it is >the size of a small pea). A bell rings... isn't there some variety of Lupus where you get calcium deposits in your body?  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! I am not sure about that, Andy. I do have rheumatoid nodules in various body parts. I was wondering if what Leslie C has is something similar. BJ-Sk. Canada > [ > >XXxxxray's show in those same joints Thumb- has 2 small funny looking [quoted text clipped - 6 lines] > A bell rings... isn't there some variety of Lupus where you get calcium > deposits in your body? In article <10ac5so3vjp2a87@corp.supernews.com>, BJ <Babs@sk.nojunk.ca> wrote >I am not sure about that, Andy. I do have rheumatoid nodules in various body >parts. I was wondering if what Leslie C has is something similar. >BJ-Sk. Canada Another idea surfaces in my fevered brain: Lupus Profundus is a form of Lupus Panniculitis. In the case of profundus, there is also discoid lupus (panniculitis does not have additional DLE involvement). In profundus/panniculitis, firm nodules (1-3cm) form deep under the skin, and usually *nestle* in adipose tissue (fat). The overlying skin usually becomes attached to the nodule, causing it to indent/depress. In profundus, those areas of depression often develop discoid lesions. Only a very small percentage of SLE patients develop profundus, and also only a small percentage of profundus patients develop SLE. Treatment ranges from topical ointments (for the discoid rash) to systemic steroids and even cytotoxic agents (in severe cases). Antimalarials (Plaquenil) have been shown to be effective in the treatment of the *discoid* part of the illness. Profundus is not life-threatening, but can be disfiguring if not treated. SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! "Occasionally, the soft tissues show evidence of calcinosis, or calcium deposits under the skin. More commonly seen in scleroderma than systemic lupus, these deposits may cause occasional pain or may break through the skin, ooze, and drain." pg 77 The Lupus Book, Daniel J Wallace, MD > [ > >XXxxxray's show in those same joints Thumb- has 2 small funny looking [quoted text clipped - 6 lines] > A bell rings... isn't there some variety of Lupus where you get calcium > deposits in your body? Hi Leslie C, Didn't the radiologist give a written report along with your xray films? Maybe you can get hold of that. Would you mind reposting this, thus starting a new thread? It might get overlooked way down at the bottom like this. BJ-Sk. Canada > Hi all. > [quoted text clipped - 76 lines] > > > ;) , hubby, dog cat...who's life isn't.....but t hanks for the > > > concern....I will vent trust me if I need to.... |
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