Transcripts
April 9, 2000
Finding Support, When No One Understands
<Guest1> Hi people!
<CareOP> How U doing Guest1?
<Guest1> Sunny day, but I'm really stressed.
<CareOP> why?
<Guest1> My husbands father just died this am
<CareOP> oh, I am so sorry to hear that!
<Guest1> Need some helpful stress advice
<SpringOP> evening Guest1!!! so good to see you!
<CareOP> Spring her father in law just died
<Guest1> You guys are so special
* SpringOP likes Guest1 also!
<CareOP> so R U Guest1!
<CareOP> she is one terrific lady!
<SpringOP> so sorry to hear that...how sad for you and your family
<Guest1> My walk is a little slow with the CNS stuff, but I think Im winning
<CareOP> did U mention pain last week?
<SpringOP> I love that winning attitude!
<Guest1> Ive been seeing the PT people about 3 times a week
<CareOP> helps?
<CareOP> what do they do Guest1?
<Guest1> Pain-really, really...
<CareOP> oh yees - U see a neuro the end of this month - right?
<Guest1> Theyve been "zapping" me in the rear-Hee hee
<CareOP> the zapper!
<Guest1> Yep,the zapper!
<CareOP> I use to love it, but finally I couldn't stand it any more made my nervs go crazy!
<Guest1> It seems to be helping right now
<CareOP> I got a horrible "buszzing" all up and down my leg and butt!
<Guest1> There are eves and early ams that the "buzzing" is there just like that CareOP
<CareOP> really?
<CareOP> did any of you ever get "goosebumps" all over for no reason?
<Guest1> Yep, cant sit hardly, let alone sleep
<CareOP> butt pain?
<Guest1> butt pain
<Guest1> Leg, feet too
<CareOP> Guest2 how u doing tonight?
<CareOP> nerves can be the pits!lol!
<Guest2> I think I'm doing better. Rhumy put me on Vioxx
<Guest1> Great stuff Vioxx
<CareOP> joint pain? Spring takes it
<SpringOP> i get goosebumps at times, and they are not exactly all over, they are in patterns on my skin. usually on my legs.
<Guest1> Oh, I havent experience the goose bumps yet
<Guest2> I get things that are almost like Chicken pox, only 1 here 1 there
<CareOP> much better after I began prednisone
<Guest1> I do get real red spots however, after Ive done a lot of walking
<SpringOP> do they itch Guest2?
<CareOP> really Guest2? like hives? or blisters?
<Guest2> Yes
<Guest2> Both
<CareOP> me too Guest1 - like blotchy skin?
<Guest2> Then they're gone in about 2 days.
<Guest1> Yep, blotchy
<SpringOP> my pores show up like red spots, is yours like that Guest1?
<CareOP> sounds like hives - possibly
<Guest1> Gone in about two days too
<CareOP> my skin becomes "mottled" as they say
<Guest2> But they are fluid filled and very small.
<SpringOP> but wouldn't hives be in patches, and not in solitary places?
<Guest1> Its my understanding that its more circulatory related
<CareOP> gee Guest2 - where do you get them?
<Guest2> And always at night time. Arms and legs only
<Guest1> Guest2, it sounds like what I had from time to time
<Guest1> Itch?
<CareOP> yep probably correct Guest1, but our nerves govern the circulatory system
<Guest2> Yes, a lot.
<CareOP> did your doc get to see them Guest2?
<Guest2> It's almost as if I had nerve bumps, nervous like, only I'm not.
<Guest1> I thought I was going to scratch myself to death-Cortisone cream helped
<SpringOP> I have had a few of those come to think of it, but I just figured I might have got into some poison ivy or something bit me that I was not aware of
<CareOP> yes Guest2 - I understand!
<Guest2> You guys are great, you know that?
<Guest1> Yes, I was even diagnosed as poison-ivy at one time, I dont think so now
<CareOP> now that one thing I have not have -gotten hives and strange rashes before
<SpringOP> you are too!
<CareOP> any of you allergic to penicillin?
<SpringOP> hmm, well, I will watch and take note next time those itchey spots happen to me
<Guest2> Yup
<CareOP> yep me
<Guest1> Not allergic to pen here
<SpringOP> yes
<Guest1> The Sjogrens Book covers info on the rash
<CareOP> it's common in SjS and Lupus to get hives from penn and other antibiotics
<Guest1> Im beginning to think rashes are very common for us types
<Guest2> Yes, me too Guest1
<CareOP> any eye problems?
<Guest2> Just normal red and dry.
<CareOP> flashes of light - little ones?
<CareOP> lasts a millisecond - blip and done
<Guest1> Lightening like flashes. Thats what is bringing me to the neuro
<Guest2> Some flashes, but Eye Dr said was normal.
<CareOP> small one Guest1?
<CareOP> it is?
<Guest1> Yep, small ones.
<CareOP> me too
<Guest2> You on Plaquenil?
<SpringOP> i get those light flashes, but never mention it as they do not last
<CareOP> one time I have sparkles - like flashes, both eyes - lots of them
<Guest2> That's different Care
<Guest1> They re worse after work and exposure to lights and sun?
<SpringOP> no plaquenil
<CareOP> like eyes full of sparklers
<CareOP> right! wouldn't want to take it
<Guest1> Like sparkers-yep
<CareOP> gee Guest1 don'r know - but don't think so
<Guest2> I can't take it-intestional problems with it.
<CareOP> I see my eye doc next Friday
<SpringOP> My rheumy told me about a new eye drop medication and she is going to call my opthamologist tomorrow and talk to him about it
<Guest1> Im on Plaquenil. Keep a watch on the eyes
<CareOP> wow Spring Good news!!!
<CareOP> how often you see eye doc Guest1?
<Guest2> What is the eye drop called?
<Guest1> The sparklers, I think are related to the CNS inflammation
<SpringOP> something I cannot remember, but is usually taken in other ways, but she said there is very good success with it
<Guest2> Let us know if you can
<CareOP> that's great Spring! is your surgery eye doing better Spring?
<Guest1> Let us know when you find out about the eye drops.
<SpringOP> foe my aching in my extremities she gave me a mdeicine for circulation to try out.
<CareOP> what's its called Spring?
<Guest1> Whats the name.
<SpringOP> Trental (generic is Pentoxifyl ER)
<CareOP> I'll write it down Spring - what kind of drug is it?
<Guest2> I;m surprised not many people here, think it's because it's kinda hard to figure out this site?
<SpringOP> and no, my eyes are not much better, optho. gave me more tears samples to try out and I am to take them every 2 hours.
<Guest1> The weather is nice here maybe it has people outside
<SpringOP> for circulation to the very end of capillaries
<Guest1> SpringOP have you tried Celvisc?
<CareOP> is it helping Spring?
<CareOP> so for vasculitis - I suppose
<CareOP> I wonderr too Guest2
<CareOP> sometimes they come late
<SpringOP> yes I have, and sometimes I use that at night. then in the am I have to unglue my eyelashes, hehe, but eyes feel good
<Guest1> Yes, it seems a lot of the chat people are late birds
<SpringOP> Careop, if I have vasculitis, she did not tell me that.
<Guest1> I like it since it feels cool, but yes a little gluey at night.
<Guest1> I use it most in the daytime
<CareOP> my eyes are not too bad, but my nose is terrible - totally dry
<Guest2> Do you guys find you have way too much saliva and mucus, then nothing at all?
<CareOP> I don't think they volunteer that info Spring
<CareOP> kinda Guest2
<Guest1> Gosh, Ive only used Ayr for the nose. It would be nice if there were something better
<SpringOP> the kind I am using today seems pretty good, it is Tears Naturale Free bu Alcon
<CareOP> I chew gum all the time, it helps
<CareOP> that's what I use Spring
<Guest2> That's what I use, Spring, in the daytime.
<Guest2> Celuvisc at night.
<Guest1> My syliva seems to have settled down these days. I use gum mostely
<CareOP> that's the heavy stuff
<Guest2> Gum here too, to help with the paratoid glands.
<SpringOP> well, I could not even breathe through my nose, it did not let air through and was soo dry, she gave me some nose drops that I think are for allergies-Nasonex
<CareOP> I use the ointment at night when my eyes are bad
<Guest1> Yes, I use the ointment at night when theyre bad too.
<Guest2> I just got Rhinocort Aqua to use in my nose at night, and it really helps.
<CareOP> I just use saline and KY jelly when it gets real bad! lol!
<CareOP> really Guest2?
<Guest1> Oh great, I'll check the Rhinocort out.
<CareOP> is it prescription?
<Guest2> Try Vitamin E oil.
<CareOP> ok got some of that
<SpringOP> Guest2, I do not ever have lots of salive, but I take Salagen for moisture in the body 4 times a day, and after 1 hour I get spti! lol lol, it is supposed to help all your moisture glands
<Guest2> Yes, just got it about 2 wks ago. And it does help a lot with the breathing at night.
<CareOP> my nose is terrible - skin too
<Guest1> Thanks people-
<CareOP> is it expensive?
<Guest2> Prescription, on a plan, so don't know the total cost.
<SpringOP> spti=spit!
<CareOP> probably expensive - all the good stuff is!
<CareOP> Spring!!!!!
<Guest2> But I wa waking up having trouble getting air into my nose, and it has helped that problem.
<Guest2> It's new.
<Guest2> The aqua part is to help with dryness.
<CareOP> I'll ask my PCP next time - she gives me drugs when she has any I need
<Guest1> What does anyone do at night when the pain hits the legs
<CareOP> does it have cortisone in it Guest2?
<SpringOP> I will sure ask about that Rhinocort....if I do not get any success with what I got. I have exactly what you say, no air will go in
<CareOP> Neurontin Guest1 - the best!!!!!!!!!!!!!!
<Guest2> I just remembered she gave me the first one, so they problably do have samples out because it's new.
<CareOP> yep my PCP is terrific!
<Guest1> Ok- I guess the PT will help me until I can get to the Neuro
<CareOP> I see a rheumy the end of the month- maybe I'll ask about it
<CareOP> how soon Guest1?
<Guest1> The 26th
<Guest1> Seems like forever
<CareOP> Neurontin is a god send for me!
<CareOP> I know Guest1 - try heat or ice
<SpringOP> my rheumy said something about those drugs, the neurontin and that class of drugs and causing/confusing symptoms of Lupus. that is why we are trying the circulation drug first
<Guest1> Using both heat and Ice
<CareOP> not Neurontin - Tegretol doses Spring, but not Neurontin
<SpringOP> she mentioned so many in one sentence, I got confused! can you imagine that?
<CareOP> don't think so Spring - it is entirely different than the other anticonvulsants
<Guest1> Yes, I understand Neurontin does work on the nerve rather than circulation
<Guest2> No, it doesn't contain cortinsone, Care
<CareOP> gee confused! no!!!!
<CareOP> that's my name!
<CareOP> doesn't thanks Guest2
<Guest1> Names can be confusing
<CareOP> Guest2 - what else do you take - and any pain for you?
<CareOP> U said it Guest1
<Guest2> Yes, leg and arm pain, a lot.
<Guest2> That;s why the vioxx
<CareOP> ancy? or burning? or both?
<CareOP> aching
<Guest1> Does exercise help or make it worse
<Guest2> I take ex-tylenol.
<CareOP> does it help Guest2?
<CareOP> Spring still taking Vioox?
<Guest2> I think I'm better, have been walking 3x week. That makes it hurt
<Guest1> Ive found that VERY slow gentle range of motion stuff helps a lot of things
<SpringOP> I am taking it again
<CareOP> yep like stretching stuff
<Guest2> I'll try that Guest1
<Guest1> It takes a while for Vioxx to work
<CareOP> it helps stretch tight muscles
<SpringOP> the vioxx helps me with the leg and hip pain and stiffness. but an days I have really worked my feet hard, they still hurt. maybe it is too far down the body! roflol
<Guest1> My girlfriend and I are going to try swimming next week
<CareOP> does it help any kind of joint pain? Muscle pain?
<Guest2> I have a lot of pain around my hips, but it's not the bone.
<CareOP> ha Spring!!!
<Guest1> LOL-my feet too
<CareOP> near sciatic nerve Guest2?
<Guest1> Guest2-you sound just like me
<CareOP> we all sound alike! Now Really!!!
<Guest1> They thought it was sciatic but now know its not
<SpringOP> the vioxx helps my joint pain especially
<Guest2> No, not the sciatic nerve, like tissue pain, deep, like a tooth ache.
<SpringOP> Guest2, I describe it like having the flu-ache deep inside there
<CareOP> oh yes! I understand like a spasm - labor pains ?? like those?
<Guest1> Real deep ruGuest1ing seemed to help stim that nerve and even thou it hurts a little it does seem to help in the long run
<CareOP> my butt gets labor pains sometimes! roflol - butt true!
<Guest2> Yeah, and use Mineral Ice
<Guest2> Lots of it.
<SpringOP> oh my! labor gets you babies, what does butt pain get you?
<CareOP> on my butt? don't think so! lol!
<Guest1> Oh yeh, butt pain- like spastic bowel?
<Guest2> You guys!
<CareOP> nothing butt grief Spring! lol!
<Guest1> You guys are really making me chuckle
<SpringOP> hehehehe
<CareOP> butt it isn't Guest1 - it's nerves in the piriformis muscle!!
<Guest1> Yes, that's the one
<CareOP> don't be too impressed - the doctor told me about that muscle
<SpringOP> now where is that? and what shape is it in?
<Guest2> Anyone have tingling?
<Guest1> really!!!!?
<Guest1> Tingly feet or ?
<Guest2> Numbness/tingling
<CareOP> well it holds in the pelvic organs
<Guest2> Up legs, arms
<SpringOP> fingers and toes, sometimes
<Guest1> Numb butt and feet and occasional hands
<CareOP> and runs from the pubic bones to the hips - I think
<Guest1> Toes too
<Guest2> Well mine must be shot, then, if it hold that in.
<CareOP> I have tingling anywhere
<Guest1> what runs? CareOP
<SpringOP> roflol at Guest2
<CareOP> I certainly don't anymore Guest1! lol
<Guest2> I tell the docs about this tingling, and they just say 'huh'
<SpringOP> what kind of docs?
<Guest2> Reg. MD, Rhumy, Neuro
<CareOP> yes Guest2 and give you "the look'!! I've had it also!
<Guest1> NumGuest1utts-thats the PT joke I have
<Guest2> And then it went away for a few months, then now it came back.
<CareOP> like "she's nuts"!!!
<Guest2> Yup, or a hypochrondiac
<Guest1> Yep, I was even beginning to think I was
<CareOP> yep Guest2 - come and go ...that's what SjS is like
<CareOP> me too Guest1!
<Guest2> I just know EVERYONE of my files says that one.
<CareOP> NO!!!
<Guest1> Heaven help us!!! Were all nuts
<CareOP> sorry Guest2!:o]
<SpringOP> me, I am a coconut.
<CareOP> right Guest1!!! and MEN are telling us that!!!
<Guest2> I mean, how can they take us serious when things come and go so much?
<CareOP> dont' you listen to those stupid nuts! (docs!)
<Guest1> I just filled out the Review of systems for the neuro- and guess what? Its so full of complaints I hate to let her see it!!!
<CareOP> understand Guest2...
<Guest2> Well they don't say it, it is probably me putting the label on myself
<CareOP> lol! Guest1 - me too for my new rheumy!!!
<CareOP> I know Guest2 - we have all been there too - hang in there we believe you!
<Guest1> Ive decided that I hadnt done that in some time so will keep a copy!
<Guest2> Hmmmm, no one asks me to fill out a review form.
<CareOP> me too Guest1
<CareOP> just wait Guest2!
<Guest1> Guest2-it really helps to just start at the top and start writting
<CareOP> how long you been doing the rounds with all the docs Guest2?
<Guest2> 6 years
<CareOP> from the beginning, right Guest1
<Guest1> Yep, from the hair and day one
<CareOP> let me see - was about 5 to 6 for me
<SpringOP> when did you get your sjogren's diagnosis Sharry?
<Guest2> 6 yrs ago
<CareOP> and I still didn't meet all the criteria for Sjogrens - but he said I had it
<Guest1> Oh my, what did he do for you then Guest2?
<CareOP> did U get a definte anything yet Guest2?
<Guest2> I've not had the lip biopsy, but have pos. SS-B, dry eyes, mouth, etc.
<Guest2> Pos. ANA too
<CareOP> that's enuf Guest2
<Guest1> Did you all have a lip biopsy?
<Guest2> Then they're not pos, then they are, you no the routine.
<CareOP> very few fill all the criteria especially with CNS SS
<SpringOP> sure is enough, but maybe he does not understand the CNS type of SJS?
<CareOP> sounds familiar Guest2
<Guest2> I guess I have to get more tingling for them to diag. CNS
<Guest1> I didn't do it, and am now feeling that it may benefit if diagnosis is questioned by ins. or such
<Guest2> They just treat the symptoms, you know.
<SpringOP> not I Guest1. I am diagnosed clinically. all tests neg so far, but enough symptom history and visual sympotoms that my rheumy diagnosed me anyway
<CareOP> right Guest1
<CareOP> that's not unusual Spring - but all the published info - makes it sound like you need all - U don't!
<Guest1> I did read somewhere that the National groups are coming to an agreement on diagnosis criteria
<CareOP> SjS is a strange ilness
<CareOP> yep - they are changing Guest1
<Guest1> That should give some focus to treatment as well
<CareOP> if any of you find new info, please let Spring and I know - maybe we can put it online at Sjogren's World
<SpringOP> yes, we would be happy to do that
<Guest2> ok, will do. You see the other lists, right?
<CareOP> new blood tests out
<Guest1> OK-I'll send it for you to check otu
<SpringOP> we stive to have the best site on this on the internet
<SpringOP> strive
<CareOP> I will ask about the new blood tests - if I remember!
<Guest1> What blood tests?
<CareOP> anti-fodrin
<Guest2> You do, I think, I was really impressed with what I read.
<CareOP> heard of it?
<SpringOP> well, I have really enjoyed sharing tonight, but I have a house full of company and really must leave and get back to them now.
<Guest1> Wow-never heard of that one
<CareOP> thanks Guest2! we tried our very best!
<SpringOP> tks Guest2
<Guest1> Yes, me too, I was so glad to have a CNS site-
<CareOP> it can be a lonely road for us
<Guest1> See ya later-
<CareOP> night Spring!
<Guest2> Well, I'm gonna go now, have really enjoyed talking to you guys.
<CareOP> me too ladies - u guys are terrific!!!
<Guest1> See you--HUGS all
<Guest2> Thanks, bye for now.
Finding Support, When No One Understands
