Transcripts
March 26, 2000
Fatigue, the Hidden Symptom
<Guest1> Hello - it's actually stephanie, but used mom's name last time....
<SpringOP> well then hi steph!
<Guest1> Can anyone explain the fatigue to me ...
<SpringOP> oh boy, it's the bluebird of happiness! yippee!
<CareOP> like you have the flu fatigue
<Guest1> tired? Too tired to get out of bed?
<Guest2> I made it
<CareOP> yes but sometimes just fatiguing very easily
<SpringOP> glad you made it Guest2
<CareOP> like when shopping or cleaning
<Guest2> Flu! Always-Slow,slow, slow
<CareOP> yep Guest2- slow walking!
<Guest2> It seems that my legs are like lead at times
<Guest2> I seem to have developed some real CNS symptoms lately, has anyone else?
<Guest1> what in the realm of cns??? i think so.
<CareOP> like what Guest2
<Guest2> I have numbness of the feet and disequalibrium
<CareOP> yes me too Guest2
<Guest1> Numbness sometimes comes and goes?
<Guest1> Mine usually goes right up my left side into my head
<CareOP> yes
<CareOP> left side seems to be worse for most of us strange?
<Guest2> I have had a severe bout with pain in the hip and legs as well. My Rheumy has referred me to a neuro
<Guest1> I feel like there is fluid in my head and cannot think at times
<Guest1> pain in hips and knees for me.
<CareOP> where is the hip pain? what does it feel like?
<CareOP> sciatic nerve pain?
<Guest2> Guest1, yes that is also what I experience
<Guest2> sciatic pain, sort of but I can still walk, just not sit or bend
<CareOP> Guest1 - a "tunnel like" brain feeling?
<CareOP> yep! me too Guest2
<SpringOP> Guest2, when I had the bad pain in hip and knees, that is when my neuro sent me to the rheumatologist and I got diagnosed with the Sjogrens
<Guest1> yep - a tunnel like brain feeling. it's scary
<Guest2> CareOP, you seem right on
<CareOP> yes it is I have them also - feel bad!
<Guest1> sometimes I cannot seem to communicate because it is so debilitating
<Guest1> I haven't even been diagnosed yet ..... tests back this week
<CareOP> what all did they do Guest1?
<Guest2> Yes, Guest1, sometimes the the brain seems to be on slow mode
<Guest1> lip biop., SSA SSB and will do schirmer on wedn.
<CareOP> MRI Guest1?
<Guest1> the brain is the scary part, eh?
<Guest2> Well, that should say something
<CareOP> yep, but it does come and go Guest1
<Guest1> MRI two years back when they thought my left leg numbness was MS
<CareOP> sometimes I feel like I am going to die, then get better! :o]
<Guest2> At least, my rheumy and neuro are both aware of the Sjogrens symptoms
<SpringOP> The brain, when mine totally loses things somewhere inside it, that is scary, cause it makes me wonder what else I have lost or forgotten
<Guest1> CAREOP - feel like dehydrated or were you?
<CareOP> no didn't feel like it, drinking and all - but was!
<Guest2> Dehydrated all the time, it seems. Ive always been one that could go on without a drink
<SpringOP> Guest2, I take VIOXX when the hip and knees hurt bad, it really helps! That is why my neuro, has told me to stick with the rheumatologist now and only come to see her when rheumy thinks I need to. I agree with that, as the neuro kept waxing and waning on the MS dx.
<CareOP> had hyper reflexes and ataxia
<Guest1> I felt like I was dehydrated, but took a lot of sinus meds and
<Guest2> Yes, Im already on the Vioxx
<Guest1> actually got dehydrated ..... that was terrible!!!!
<Guest2> Ataxia, yes
<CareOP> no - I didn't feel dehydrated - electrolyte imbalance
<Guest1> hyper reflexes?
<CareOP> low sodium
<CareOP> yep!
<Guest1> vioxx for what part?
<Guest1> Now I just feel dehydrated at times
<Guest2> hyper reflexes, yes. I gave the surgeon a real surprise when he injected me for a block to work on my shoulder.
<SpringOP> for hip and knee pains, but actually it makes me feel so good all over, weird.
<CareOP> dry mouth- I drink all the time and chew sugarless gum in between
<CareOP> my lips were stuck to my teeth this am when I got up! yuck!
<Guest1> sugar free lemon drops seem to really work
<SpringOP> I take Salagen for the dry mouth and it works wonders for me
<Guest1> anyone with TMJ?
<CareOP> I'll try that Guest1
<Guest1> al of a sudden - that too!!!
<SpringOP> I do but got it under control with lots of work in my mouth. teeth removal and braces.
<Guest2> TMJ, I just snapp all the time, but no real pain
<CareOP> don't think so - once when the illness began I couldn't open my mouth for a week - had pain but couldn't open my mouth - locked!
<Guest1> springOP - dentist told me that is important and we need to work on it now.
<Guest1> It makes my CNS symtomps worse, I tried to explain
<SpringOP> I had lots of pain with my TMJ
<Guest1> did it go away?
<Guest1> Mine was gone from being a little kid - got locked once.
<Guest2> Has anyone gotten the New Sjogrens BooK? It's great!J
<Guest1> Anyone with diarrhea - nonstop
<CareOP> is it? how new Guest2?
<Guest1> at least every 3 days
<Guest3> Do you think the new book is very different from the old one?
<CareOP> sometimes Guest1
<Guest1> it is good. The book
<CareOP> brand new?
<Guest2> It offers much insight and many suggestions
<Guest1> careop - what do you do?
<SpringOP> yes, Guest1, the dentist actually listenend to me about how I said I needed my teeth to fit together for comfort, and it helped bunches. Only if I am under lots of tooth grinding stress does it hurt(well, allergy season sneezing all the time hurts my jaw)
<CareOP> any CNS stuff in it?
<Guest2> I don't know about the old one, I hear it is better tho
<Guest1> I think so .... haven't read it yet.
<CareOP> diarrhea sometimes Guest1
<Guest1> does talk about the thyroid relation and other autoimmune relations
<SpringOP> whcih Book, Guest2? I did not know there is a new one
<Guest2> Yes, it does cover it somewhat. That may be the new part
<Guest1> My feet are cold when I sit
<Guest1> Then it goes up my legs
<CareOP> The last one did briefly didn't say much except it was "rare"
<CareOP> me too Snady cold feet
<Guest2> The New Sjogrens Book came out in January, I believe
<Guest1> This time they say it's NOT RARE disorder.
<SpringOP> do you mean the SS book? the one from the foundation
<Guest3> Me too Guest1.
<Guest1> yep!!!
<Guest1> then goes numb????
<CareOP> let me know Guest2 about the book - CNS stuff?
<Guest2> Yes, I bought it from the Foundation
<Guest1> I have it right here.
<Guest3> What does everyone/anyone take for inflamation of joints?
<CareOP> it's about time Guest1 - CNS not rare with Sjogrens?
<Guest1> It does talk about CNS
<CareOP> my butt goes numb all the time!
<Guest2> Vioxx, Prednisone, Tylenol Arthritis
<CareOP> like novacaine
<Guest1> They say the whole sjogren's thing is probably the most commom
<SpringOP> Guest3, I take Vioxx when it gets bad
<Guest1> rehumatological disease out there.
<Guest2> I have to smile at the butt comment. I would hate to let my boss know how often Im a little scarred to get out of my chair
<CareOP> yes Guest1 knew that but they said CNS-SS was rare - I don't think it is!
<Guest1> My family was somewhat good to begin with..... now I get left in the back room
<CareOP> ha! Guest2!
<Guest1> kidney relations, extraglandular relations, etc.
<SpringOP> do you have trouble with that kind of pain Guest3? how are you otherwise?
<CareOP> Guest2 - big butt problems too! lol!
<Guest3> Yes, lots of pain last 3 wks, in hips
<Guest1> Peripheral Neuropathy and all that stuff is in the book.
<CareOP> goodie Guest1 - I'll buy it!
<Guest1> LET ME QUOTE THE BOOK YOU GUYS
<Guest3> I'm pretty tired of being sick. What does anyone else feel?
<Guest2> Way to go Guest1-
<CareOP> My butt is my biggest problem followed by cognitive problems
<Guest1> "A frequent target of this extraglandular assault is the nervous system."
<CareOP> I will buy the book!
<Guest1> it's worth it!!!
<Guest1> I would just like someone to believe in me... no dx yet
<CareOP> hope U feel better Guest3!
<Guest3> Thank you.
<Guest1> They don't even think I sound like it, I try to tell them - same symptoms
<Guest1> you guys have
<CareOP> welcome! I know how U feel Guest3
<Guest2> Hey, Guest1-We have it and we understand
<CareOP> Guest4 how are you tonight?
<Guest4> is it just me, or does everyone else get told to get over it?
<SpringOP> Guest1, my rheumy diagnosed me even with the negative tests, she did it on symptoms...and what she could see herself. She said that the test show how you are progressing. But maybe she is brave to diagnose clinically like that. BUt I am glad to know what I have and what I can take to do something abou tit
<CareOP> kinda Guest4 - just ignore it!
<Guest2> Yes, it was a relief just to know it had a name. And that it wasn't in my head
<Guest3> Yes, but is there really anything we can do about it?
<CareOP> trying to stay positive is the most important and ,ost difficult thing we need to do
<Guest1> It feels good knowing you are not the only one in the world.
<Guest4> my rheumy keeps telling me more exercise will help, but how am I supposed to add that to everything else?
<Guest3> Yeah, how to exercise when it hurts?
<CareOP> yes Guest3 - there are treatments/drugs that can help
<Guest2> Sometimes, I just cry- on my way home from work (tired, i gues) but then I take a deep breath
<Guest1> thank you! found a lot of great friends!
<Guest4> and when you have to work, and have to clean, and try in between to have a life?
<Guest3> I can't take plaquenil, diarehha
<Guest1> Guest2 - how come you cry?
<CareOP> yes Guest3 - the one doc I saw said walk a mile a day when I could barely stand up! He was a real moron!
<Guest4> that's a shame, Guest1 -- it helps me a lot.
<Guest2> Just because I get so -o tired and
<Guest1> Guest3 - do they say diarrhea will go away? part of sjogren's too ya know...
<SpringOP> Guest4, I exercise 2 times a week. I think it really helps my flexibility. On bad days I do not exercise as hard, but I still do it.
<CareOP> stretching helps me flexing back
<Guest3> Well, I don't have it unless I take the plaq.
<Guest4> I do manage a half hour four or five times a week, but I have to give up a lot to do it, and I haven't noticed the benefits my MD thought I would get.
<CareOP> anyone get BAD back pain?
<Guest1> Guest3 - do they say it will go away in time????
<Guest2> I wake and do some strech and relaxes every morning, just to get the motor going
<Guest4> oh, yes -- and still problems from a herniated cervical disc three years ago
<CareOP> I did PT for months and didn't notice much difference
<Guest1> what was pt for?
<Guest4> the PT helped me some
<Guest2> That was something I learned in the Living with Lupus Bo0k
<CareOP> I had spinal surgery for a "herniated disk" - but is didn't help
<Guest1> Guest2 - you have lupus too?
<Guest3> It happens about 20 min after I take it. Tried it for 5 days, and had to quit.
<CareOP> it was CNS sjs instead
<Guest2> Well, that is what started to be in the cards
<Guest1> Guest3 - did you ask the pharmacist if it would go away and take immodium or donnatal in the meantime?
<CareOP> for back spasms and severv butt pain!
<Guest3> No, I didn't.
<Guest2> Now, it will just take time to see what plays out
<Guest3> They just said it wasn't for me-The rhumy did.
<Guest1> Does anyone feel like they have muscle spasms in their legs after the coldness or pain starts moving?
<Guest2> CareOP, back spasms - yes.
<CareOP> right Guest2 time
<Guest3> I have the spasms everynight.
<Guest1> like little twitches??????
<Guest3> In legs.
* CareOP yes Guest2!
<Guest4> the leg spasms are pretty common I hear
<Guest2> Recently had severe bunches of "twitches
<Guest3> All of my legs, kinda bouncing here and there.
<CareOP> yes Guest1 I have the twitches also
<Guest3> That's interesting.
<SpringOP> not me, mine just ache like flu is in them by the end of the day, or earlier if I spend a lot of time on them
<Guest3> The neuro just said she didn't know what it was.
<Guest1> spring - I know the feeling.
<Guest2> legs, mostly, but back and arms too. Sometimes eyes
<CareOP> My muscles get very stiff in the cold Guest1
<Guest4> I think the fatigue contributes to my twitching and spasms -- do you?
<CareOP> yep Spring - my back is a killer at times
<Guest3> Possibly, I kinda shake when I'm tired, too.
<Guest1> I don't feel tired all that much, but this just started in January.
<Guest2> Yes, fatigue seems to play a big part of mine
<CareOP> it might Guest4
<Guest1> Had left leg numbness a year ago for 4 wks - neuro thought ms
<CareOP> how often do u have them Guest4?
<Guest4> all the time, more when I'm overtired
<SpringOP> I get stiff and kind shake when I overdo. or get overheated
<Guest2> The weak shakies -tried to find something that looks like a jiggle
<Guest1> any thyroid or kidney troubles?????
<CareOP> yes - trembling limbs people?
<Guest4> Guest1, when were you dx? I've developed some kidney/UT problems since my dx three years ago
<Guest3> No kidney, yes thyroid.
<SpringOP> my limbs ehn overdo, get more like spastic movements
<Guest2> hate to go shopping without someone with me,
<Guest1> I started to feel older when I got Graves' disease - maybe it wasn't that disease according to this book - maybe just the other way around.
<Guest1> Guest3 - what with thyroid?
<SpringOP> hello Guest4!
<CareOP> yes Guest2 - like parkinsons trembling sometimes
<Guest2> Thyroid disease frequently goes along with the Sjogrens, I understand
<Guest3> Had to take synthroid, then had growth, had thyroid removed in 92
<Guest5> thanks, my name is Marty, typo
<Guest2> Ive had tremors for a long time, My kids wouldn't let me cut their hair!
<Guest1> what do you mean by leg tremors?
<SpringOP> are they afraid of ear loss, Guest2? eeeks! hehe
<Guest4> sorry all, have to run. big day at work Monday
<Guest1> like a shaky thing in there?
<SpringOP> bye flora
<Guest3> Does anyone else's doc say the shaking, tremors, and twitching is SS? Or something else?
<CareOP> gee Guest2 last time I cut my kids hair I cut his ear - last time I ever cut hair!
<Guest2> Yep, you guessed it. I did nip an ear
<Guest5> Hi, I am new to this. I would surely like to ask some experienced folks some questions.
<Guest1> Guest3 - i think it is SS with CNS
<Guest1> but what do I know - I'm not a doc.
<SpringOP> go ahead Guest5, ask away
<CareOP> it can be due to coffee and stuff - but I don't think so!
<Guest1> All I know is that the flexeril and ativan started to help - at least took
<Guest1> the edge off
<Guest2> I dont think so either.
<Guest3> Well, it seems like more than SS to me, but I don't know what.
<Guest1> cns maybe?
<Guest2> I did find that extra Vit. Bs helped for a long time tho
<Guest5> I am intersted in the CNS thing. Has anyone out there had any involvement of their eylies, lips, tongu burning, stinging. Also lips very very dry?
<SpringOP> did you know coffeine can be drying too?
<Guest3> Marty, yes to all.
<Guest1> I used to be vit. B12 deficient when I had graves.
<Guest1> lips very dry
<Guest1> feel like the sahara desert
<CareOP> yes me Guest5
<Guest2> Caffiene had to go. It also causes irritable bladder
<CareOP> I can't functions without it Guest2
<Guest1> I have irritable bladder anyway - take urocit - part of SJS
<Guest5> I started sjogrens about 3 years ago. still have an indefinite diagnosis. beteween lupus sjogrens and just connective tissue disease. very high ANA
<SpringOP> my eyes burn and sting....and my lips and omuth is dry, but Salagen helps lots with the dry mouth for me.
<CareOP> do we all have the "irritable bladder"? I do
<Guest2> Yes, I expect it is SJS - I think the Neuro can help
<CareOP> what is your ANA Guest5?
<Guest1> do you take anything for the irritable bladder????
<SpringOP> irritable bladder is part of SjS?
<Guest3> Irritable bladder, as in accidents?
<CareOP> yep
<Guest5> I have the irritable bladder but never equated it to sjogrens. My ANA was 1:2560
<Guest2> Not yet, I expect I should tho
<Guest1> My ANA was fine once and RH factor too....
<CareOP> yes Guest3
<Guest3> Then I have it.
<Guest3> Thought it was old age.
<Guest1> I have read - it has something to do with the tubes in the kidneyes
<Guest1> UROCIT IS PRIMO FOR URINARY frequency if it feels like acid
<CareOP> it can be caused by a neuropathy also Guest1
<Guest1> okay - i go with that..... all i know .... it hurts
<Guest2> When everything is inflammed like we experience - the delicate membranes all suffer
<Guest1> not really hurts ....... burns
<Guest5> My most puzzling symtom is that my eyelids turn a reddish purplish color when I am flaring. I can not take any medications without this either.
<SpringOP> lol Guest3, I think of myself as aging before my time....good thing I married an older man! roflol
<CareOP> Guest5 what was your ANA?
<Guest5> Guest5's ANA was 1:2560
<Guest1> see a couple of the symptoms I don't get - the tongue thing and reddish purple stuff
<CareOP> sounds like MCTD to me Guest5
<Guest2> My eyelids do that too, expecially in the a.m. Ive even had to pack them at time to help the irritation
<Guest5> Could be but I don't have a positive RNP.
<SpringOP> wow Guest5, that sounds like something special to me
<Guest1> my eyelids used to get stuck to my eyes and rip my cornea
<CareOP> any other abnormal blood tests Guest5?
<Guest1> or at least feel like it.
<Guest1> Saw cornea specialist - so dry.
<Guest5> I don't know about it much it is just one of the antibody tests for MCTD
<SpringOP> what is MCTD ?
<CareOP> RNP is usually associated with what Guest5?
<Guest2> yes, Guest1, thats really sore
<Guest1> Guest2 - have you had that?
<CareOP> Mixed Connective Tissue Disease
<Guest2> had what?
<Guest5> Mixed connective tissue disease. I forgot what it stood for.
<Guest1> Guest2 - eye steroids work, but they work against you after time I hear
<CareOP> Guest5 with an ANA that high might be MCTD
<Guest1> I take a sleeping pill lately (prescribed), because I was so wired and
<CareOP> my highest ANA was 640
<Guest1> couldn't go to sleep ....... like I would fall into a coma
<Guest2> MCTD-Well, I haven't been dxd as that, but it is really a bunch of all symptoms and I think tough
<Guest3> I use ambien at night, and am wired until it kicks in.
<Guest1> I use ambien too!!!
<Guest1> Takes an hour or two
<Guest1> something whacky with sleeping patterns....
<Guest2> Are you taking the Vioxx at night? It can keep you awake
<SpringOP> what wires you guys? are you just that way all day? I got off my paxil and now I do feel sort of wired, tile yesterday, and now I feel wi[ed out
<Guest1> I don't take vioxx at all yet - not til dx
<SpringOP> I din'dt know that about vioxx Guest2
<Guest1> just flexeril, ativan, because I began to think I was going crazy and
<Guest2> I take the Vioxx in the afternoon. Takes about 2 hours to really kick in but lifts me for a while
<Guest1> that's it other than synthroid
<CareOP> I have wired days and don't know why! Hyper can happen with SjS
<Guest1> I think I had a really bad reaction with a nose inhaler...... wanted to commit myself ..... can't explain it.
<Guest2> Be careful with the Ativan-
<Guest1> how come?
<Guest1> addicting?
<CareOP> Guest1 what drugs are you taking?
<Guest2> It can be dependant producing
<Guest1> I am taking Ativan during the day, Ambien at night, Synthroid in A.M.
<Guest1> ativan for now ......... losing it last week after the episode with nose inhaler
<CareOP> what is synthroid?
<Guest2> The Ambien intreges me
<CareOP> whay Guest2?
<Guest1> synthroid for thyroid - stimulator
<Guest2> What happend to the nose?
<Guest1> Guest2 - ambien what? My nose was swollen.
<Guest1> I used Astelin and I felt like I was on strong dope!!!!!
<Guest2> LOL - sorry, i goofed
<SpringOP> my Dad has taken Synthroid for years
<CareOP> Guest1 - sinus problems?
<Guest3> I've been on the ambien about 5 years, anyone else that long?
<Guest1> Last year astelin worked fine. I wasn't having these problems then.
<CareOP> I take Pamelor - for sleep and pain
<Guest1> careop - many sinus problems..... they thought it was asthma .... maybe related with SJS?
<Guest2> A while back, I went throu severe sinus events - after every stressful time
<CareOP> yes common is Sjs
<Guest1> why did someone say be careful of ambien or ativan was it?
<CareOP> not me..
<Guest2> I too was diagnosed with asthma before the SJS
<SpringOP> I have sinus problems.....since age 32
<Guest1> I don't get that......
<CareOP> common too Guest2
<CareOP> my sinuses forever!
<Guest1> I mean I do get that, I just don't understand .
<Guest1> Mine are worse in the winter - Jan/Feb/Mar - sometimes during the year too
<Guest2> I think the sensitivity of the membranes just did me in
<CareOP> dry heat does me in
<Guest1> ahhhhh - I always get a lot of pain in nose and a polyp like thing that bleeds before all this happens.
<SpringOP> it is bad in feb/march here in florida, the pollen is killing me
<CareOP> furnace is awful
<Guest2> Winter dry air can make a lot of things worse. I use a humidifier all the time now
<Guest1> humidifier does seem to help recently
<CareOP> use saline nose spray and KY Jelly in nose - helps!
<Guest1> does anyone else get that - inflamed nose and this dry thing that hurts and eventually goes away, then asthma starts.
<Guest2> Yes, sometimes I use saline nose spray just so I can blow the scabs and renew things
<CareOP> I need a humidifier - but gotta clean frequently or they can make you sick
<Guest1> the scabs of what - what are they?
<Guest2> Dry nose stuff
<Guest6> I couldn't get on my daughter had the nerve to do her homework
<CareOP> well reallY!!!!!
<Guest1> Guest2 - my eyes are getting buggy with white screen better go.... bye all
<CareOP> mind gripes too Guest6!
<Guest6> are we talking about booogers?
<CareOP> ha sure are! booger haven here!
<SpringOP> roflol, I should have had my kids act like that@
<Guest1> bright screen, I forgot!!!!
<Guest2> Yeh, dry nose stuff
<Guest6> What went on tonight
<CareOP> everything Guest6!
<SpringOP> i have a real dry nose, and sometimes cannot breathe...good.
<CareOP> fatigue, boogers, poopin, and lets seeeeeeeeeeeeee.
<CareOP> ha!
<Guest2> Yes, talk goes from one to another
<Guest6> Is anyone on TalkSjo
<CareOP> no - when do they meet?
<CareOP> chat room?
<Guest6> it's just basically emails everyday LOTS
<Guest2> You know, for fatigue my biggest help was the B vits
<CareOP> oh - yep, was for a couple days -too mch mail already Guest6
<Guest2> Know it takes more than vits
<Guest6> I have either all fatigue or no fatigue
<CareOP> I take em too Guest2
<Guest6> No happy medium
<CareOP> yes Guest6 = hyper times?
<SpringOP> do you do the full B complex Guest2? I tried to find the B2, riboflavin, but could not find it alone
<CareOP> ME too! Guest6!!!!!!!!!!
<Guest2> Oh I give a bunch for a "happy medium
<Guest6> I have been rushing around trying to get caught up before I get sick again
<CareOP> U get hyprt Guest6?
<Guest2> I do Stress Tabs or B complex
<Guest6> I am always hyper even when I am fatigues
<CareOP> ha! sounds like me!
<CareOP> egadsssssssssss me too Guest6!
<Guest2> Yes, hyper and then collapse
<SpringOP> a heck of a way to live Guest6....
<CareOP> yes - then the horrible pain hits - that slows me down!
<Guest2> Tomorrow is a killer
<Guest6> That is the deal. I get the order of the day in the morning
<Guest2> Yes, morning is a clue
* CareOP says Right Guest2!
<Guest2> I have always been big on the hiking, gardening, conoeing etc
<Guest2> I work full time
<Guest6> How do you manage to work if you have real bad days?
<CareOP> I loved to work on the house - painting wallpaper, etc, now I am not steady enuf to do anything and spill everything! :o[
<CareOP> eeks!
<Guest2> This is a tough year, trying to find out how much I have to give up
<Guest6> I hate to start a project and then run out of steam!
<CareOP> I would be fired if I worked - no doubt
<Guest2> Real hard to keep going
<CareOP> hoe do you work Guest2???
<Guest6> How long ago were you diagnosed Guest2?
<CareOP> must be!
<Guest6> that's Guest2...
<Guest2> Some days its hard to jiust walk
<SpringOP> yep, Guest6, right now I have time to catch up on some of my projects...if I can manage. hehe, before I start another one!
<Guest2> The hallways gett pretty long
<Guest6> Do you work at a desk?
<CareOP> cry? Guest2?
<Guest6> I usually just wander around blaming it on being over 40....
<Guest2> Yes, I work at a desk. So far
<CareOP> ha Guest6! sounds good!
<Guest2> Yes, the oldtimers stuff gets in there a lot
<Guest2> Hey, that sounds great
<Guest2> Work - Somedays, I fake it
<CareOP> what do u do Guest2?
<Guest6> Are you exhausted on the weekends?
<Guest2> Ive been lucky, my job has changed just in time
<SpringOP> I really hate to leave, but I have to go now, everyone, nice to see you....see you next time
<CareOP> can u retire soon Guest2?
<Guest2> I work at a hospital - fight with insurance companies
<CareOP> bye Spring!
<Guest6> You have to be nice to insurance companies....
<Guest2> Ohhhh Id like not to be nice
<Guest6> Then they pay all of your bills :o)
<CareOP> well Guest6 I find that difficult to do sometimes!
<Guest2> Well, its my job to fight for the patients
<CareOP> only after I threaten them Guest6!
<CareOP> I love Guest2!!!!!!!!!!!!!!!!!!!
<Guest6> I tought all the insurance companies were nice out there
<CareOP> right Guest6! har har har!
<CareOP> I suppose they do what they are told to do...
<Guest2> Well, it is interesting to say the least
<CareOP> but you have to fight for your rights - or you don't get them
<Guest2> Yes, exactly, they do what they are told or PAID to do
<Guest6> Only so much money to go around....I just feel like I am a very big user of health care dollars
<CareOP> if you don't complain - U R ignored....
<Guest2> Im for the preventative approach - keep well all
<Guest6> I have had every test known to man
<CareOP> Guest6 my medical bills are around 450 a month
<Guest6> Has anyone had a breath test for bacterial overgrowth?
<CareOP> I don't feel sorry for my ins co!
<Guest2> Ouch,
<CareOP> no Guest6 - have you?
<CareOP> ouch is right!
<Guest6> Yikes Mine are all covered
<CareOP> no Rx for me
<Guest6> Don't you have pharmacy coverage?
<CareOP> Neurontin is over $1 a pill
<CareOP> I take 7 a day and then four other drugs
<Guest6> My prescriptions are $3.00 each
<Guest2> Oh dear, I expect that I will be on that soon
<CareOP> my hubby is amall business
<CareOP> do U have Rx coverage Guest2?
<Guest6> Can't he join through the better business burea
<Guest2> Im lucky, my prescripts are about 3 dollars too
<Guest6> or the chamber of commerce
<Guest6> You just have to understand the rules
<CareOP> I don't know Guest6 - don't think it would help much
<CareOP> I am going to request from Park Davis for help with the Neurontin costs
<Guest6> If the drugs are price controlled, the research goes down
<Guest2> Let us know if it works CareOP
<Guest6> Your doctor can get free Neurontin for you
<CareOP> I heard Neurontin will be going generic next year - hope so!
<Guest2> Hows that Guest6
<Guest6> I used to work for a drug company and had tons of samples
<Guest2> Way to go Guest6
<CareOP> think they can Guest6?
<Guest6> Just have him call the rep and ask for some for a patient who can't afford to pay/ All of the companies have programs for it
<CareOP> wow - hope so Guest6!
<Guest2> Boy, thats something to know
<Guest2> I will certainly write that one down
<Guest6> Even if you don't get it all free, he may be able to give you enough to ease the pain
<CareOP> maybe my PCP doc could ask?
<Guest2> I hope so, that would be nice
<Guest2> My lungs hurt tonight
<CareOP> mine do that sometimes too - and other days they are fine
<Guest6> That would be a good place to start but they are more generous with samples with people who will use more of their drug, like neurologists
<Guest2> Think its time for a hot shower - that seems to help
<Guest2> all that steam
<Guest6> I feel too good tonight nothing is broken....
<CareOP> ok I'll ask my neuro
<Guest2> Great
<CareOP> yay Guest6!
<Guest6> They could get some from the drug rep if they callled him
<CareOP> hey - does your heart beat faster in a flare? mine does
<Guest6> Nothing is swollen, no neuropathy
<Guest6> Yes my pressure goes way up 145/90 or 95
<CareOP> well go girl Guest2!
<Guest6> It is back down to 120/70 so I am OK
<CareOP> gee should I check my BP?
<Guest2> Yes, pressure up and heart beats faster. Pain makes the pressure go up
<CareOP> my heart beast so fast!
<Guest6> I could feel the blood in my veins it was like fire and then it just stops when the flare disappears
<CareOP> what makes the pressure go up?
<Guest2> Pain
<Guest6> My heart rate also goes way up
<CareOP> me too Guest6 - why?
<Guest6> I aven't figured that out yet ;o)
<CareOP> hear my heart sound (swishing) in my left ear also
<Guest2> It goes down when I dont hurt
<CareOP> well work on that Guest6! lol!
<Guest6> same here I can feel my heart really loud
<Guest6> Interesting I am reporting all this to my immunologist
<Guest2> Gosh - we all gots hearts
<CareOP> we should all go to the doctor together - blow theur minds!
<Guest6> I think they might leave the field!
<Guest2> Yes, that would be scarry
<Guest6> Did anyone ever have that test I mentioned?
<CareOP> bet so Guest6!
<CareOP> what test Guest6?
<CareOP> Hi again Guest5!
<Guest2> Glad youre back
<Guest6> bacterial overgrowth breath test?
<CareOP> no - why doing it?
<CareOP> for yeast infection?
<Guest2> No, me either
<CareOP> burning tougue?
<CareOP> doing ok
<Guest6> The Gi doc thinks that is causing a problem in my GI everything else checked out ok
<Guest2> I understand we are very prone to yeast infect.
<CareOP> dry mouth
<Guest6> this is bacteria
<CareOP> does it
<Guest6> no yeast
<CareOP> oh yed - there is a diff!
<Guest6> I actually only feel great when I am on an antibiotic
<Guest2> Yeast can gettcha every where, even in the lungs
<Guest6> but the more antibiotics I take the more overgrowth go figure
<CareOP> dear guests....I'm a gonna go - but stay and chat
<Guest2> Watch out everytime you receive an antibiotic
<marty> careop thanks for your help tonight
<CareOP> bye...........till next week - stay well!!!
Fatigue, the Hidden Symptom
