Sjogrens World Forums

Thought i was doin so well. Got back to work fpr 4 days, feelin good, gettin on with it. Came home last night felt a bit 'off' then as the night wore on i felt worse. my eyeballs were screaming. massive sinus headache, stuffy nose, feelin weak limbs, so so tired and as has happened all week sweating buckets. i am losing fluid faster than i can replace it. I am sweating profuse;y and still passing urine. i can only drink so much. i have slept most of the day today.

I had to call in sick today. i am so not happy. When is his going to end? I was starting to come off the prednisone but have put it straight back up. I just want to stop sweating. It is winter here. my partner has the heater on in the loungeroom. i cant take enough clothes off. i dont have a temp.


AAAARRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!



Unhappy Pud :(

Awww I'm so sorry you're not feeling well!  I was wondering though if your symptoms might be withdrawl from coming off the prednisone too quickly.  I know I feel miserable when I'm tapering.  I've had weakness, fatigue, mood swings, night sweats, and so on just from the withdrawal and I found when that happened I needed to tapper much more slowly.  Might be a flare, but when you said you were coming off of prednisone that was my first thought...

In any case I'd call you're doctor if you haven't already and let them know what's going on!  I really hope you feel better soon!

Take care!

-Lauren

Hey thanks Lauren,
I will check with my dr on Monday and stay at 25mg till then. I had a fleeting thought that it may be the prednisone but wasnt sure as this is how i've been feeling for the last 5 weeks.
I think the thing that is most concerning me is how hot i feel and the fact that i cant seem to replace the fluid that im losing. its like i have a direct line from my mouth to the pores of my skin. Water goes in my mouth and straight out my skin. My appetite is gone again and i am so so so tired. i have slept the majority of the day and still feel like i want to sleep.
I am getting teased mercilessly by my neighobur and my partner is annoyed that im sleeping and that is making me just a TAD angry.
Anyway tomorrow is another day

Pud

Hi Pud  :)

I'm sorry you're feeling so rough. Hopefully raising the Pred again with level things out. I really sympathise with the sweating. I thought I'd cleared menopause - though I never knew whether the sweating was meno, SjS or thyroid but I'd had less of them. All of a sudden the sweats are back with a vengeance. Kinda feel them 'rising' and then the discomfort and fatigue just sweep over. Jumpers are out. I need things I can take off quickly and put back on as things subside. I just really feel like my thermostat's broken.
I've been sleeping a lot too and getting back to work next week is going to be hard. I just don't sleep the same hours as most of the rest of the world!
I wish my appetite had gone. I want to eat a lot but I also want to lose weight - and it's not happeneing!  heaven help me if I was ever put on Pred!

I hope the Pred does its job and you are feeling easier.

Take care - Scottie  :)

Aw Pud,

I'm so sorry you are feeling so badly - hope raising the dose of Prednisone will alleviate some of the misery.

My thermostat is broken too - sweating buckets drains the life out me - keep putting that water in - I know it gets tiresome sipping water constantly.

Hope this passes for you soon,

Sue

Hi Pud,
I feel so sorry for you with the sweating.  I've been there, done that, don't want to do it again.

I am so sorry you are so miserable with this, but please give your doctor on Monday and let him/her know what is going on.  Losing all that fluid is not good and you may need to get some replacement.  If it were here in the states, I would go for the Gatorade that the sports people drink.  It will replenish and rehydrate the fluids in your system.  

I know I've said this so many times, but when the Autonomic system in our bodies goes haywire, it causes us more problems.  One of which is this profuse sweating.

Please call your doctor and let him/her know about this.

Hugs, Pooh

Hi Pud,

I'm so sorry that you're feeling so badly and that you have people around that don't understand! Yes.....I agree with the others...please call the doc as soon as you can to insure that you are taken care of asap so you don't lose too many fluids. You don't want to become dehydrated!

Please let us know what the doc says and I hope this passes soon for you and you are back to feeling better!


Lots of hugs to you.......(http://www.freesmileys.org/smileys/hug008.gif) (http://www.freesmileys.org)....please take good care! 

Hello pud, isn't a blessing to have such support when things go south?  Hope you will feel better soon.

Seeker


Up and down all around
Some people face trouble with a frown

Those who are special in every way
Face their troubles and stay gay
Then their troubles seem far away
And they can face another day

Anon

Hey Guys,
Thanks for your support. It's so nice to know i can come here and vent and people will understand.
I am still feeling a bit yuk today but i think im in abetter mindeset to handle it. It is raining today so hopefully i wont feel so hot, but can't guarantee it. My thermostat is definately broken and is stuck on hot. I really hate to think what i'll be like when i reach menopause- thermonuclear reactor.
I think i may be brewing another sinus infection. nose is stuffy got thr taste and all that. I'm getting a sore in my nose and have woken up with another cold sore this morning. Think the candida might be coming back cause i'm feeling all furry in the mouth even tho im still on the fluconazole.
Still all in all i woke up so thats a good thing. I have been drinking gatorade especially at work to replace all the salts and stuff. Mixed with water.

I hope everyone has a good day or good nights sleep.

Pud

Hi Pud,

Know EXActLY what you are feeling. I am in the same boat today. Hope you feel better soon. ((( Pud ))) Sending you warm thoughts Pud, and a lavender candle.

I was finally starting to feel better. In massive pain toady. Can't hardly walk, heart rate high, just feeling so horrible :( Just exist today is about all I can function with today. Wish I could cry, but no tears. Eyes are just plain too dry. :( :( :(

Denise

pud, Sorry that you are feeling so down again. I can't remember---are you on any of the heavy duty meds like methotrexate etc????So often the docs don't hit the sjogrens hard enough with these meds. I think they are still stuck on the notion that it is dry nose and mouth and not all that serious.

I am wondering how many days you are working cause I know when I was working a lot 4 days in a row would do me in. I did better on 2-3 days in a row with a day off inbetween. Hopefully, you can get rested up and treated for the sinus infection and back on your feed as they say. Have they ever checked your immune system as in the t-cells or IgG subclasses? People with autoimmune disease seem to have their fair share of immune deficiencies and wondering if you are more prone to infections than the average sjoggie. Keep us posted. Irish ;D

Hey Irish,
As i am working full time i need to work five straight but am looking at moving to a less physically taxing area of nursing. I have had immunology done and i consistently come back with low IgA levels. Noone has been able to tell me what that means though. I am going to ring the immunologist tomorrow and see if i can get in for a review. Currently my meds are
Prednisone 25mg
Fluconazole 200mg
Plaquenil 200mg twice a day
Nexium 40mg
Lexapro 20mg
Mobic 15mg
I am also taking supplements
Flaxseed oil
Digestive enzymes
Acidophilus
Ginger capsules
Lysine.

I rattle in the morning. I don't need breaky i just take my "lollies"

Pud

Hi Pud,

I'm so sorry to hear you are feeling bad again. I sure hope whatever this is will be short lived. I know how much you want to get on with your life and work. Good luck and please keep us posted as to how you are doing.

Hugs,
quiger

Hi Pud,

I hope you are feeling some better today.

Denise

So i went to the specialist yesterday and he showed me my Ct scan of my sinuses. NOt pretty let me tell you. And as has been mentioned elsewhere i am now on Clindmycin for three months to try and clear them up. He also increased my prednisone to 37.5mg. I gotta say today i have felt yipee beans i haven felt for a while. I hope something starts to work soon. I go back to work tomorrow so it will be interesting to see if i can go past four days without falling down like a bag of *****.
Can someone jog my brain a bit does plaquenil cause one to have larger than normal amounts of wind. My stomach is so full of air that i need someone to stand on it to squeeze it out. Also im disturbing the air quite a bit and it is a bit more aromatic than normal if you catch my drift (actually i hope you dont, but then again it might clear your sinuses Irish).

I'm just a great big windbag at the moment and there's only so many you can blame on the patients.
Next appointment 12 Sept.

Pud

Hi Pud  :)

I believe Plaquenil can do that. It doesn't do it to everyone but I'm sure I've read about it before. Not sure what to do about it though! (Stand downwind when possible?  ;))

Take care - Scottie  :)

Pud

You are a star!  Love your sense of humour.

Kathyx

LOL Pud, thought I was the only "windbag" around. I have that problem too. My stomach is very distended right now. Not only full of air but edema.

Hope things get less "windy" for you soon.

Denise

I didn't take any supplements this morning and i won't take them tonight either. I have a feeling that it may be one of them thats adding to the bloating. I certainly no where near as distended in the tummy. Still windy tho.
OH well the patients wont need their sleeping tablet tonight!!!!!!!!



Pud

I am so so so over tis sweating thing. Last night at work I was so hot I was sweating buckets and glowing so red that if we had a power shortage i could have lit up the ward. My face my neck my arms. It was horrible. On the other hand, my eyes were so dry and gritty i couldn't get enough moisture into them. I got home and was tired but couldn't sleep and spent the whole night in a kind of twilight sleep. This morning i feel bbbblllllllllaaaaaaaaaaaaahhh.
I have a meeting with my boss this afternoon to see about dropping down to four days a week. I am going to try for two on one off two on three off to see if it helps until i can get over whatever it is im fighting at the moment.

I really hate this!!!!!!!!!!!! I know there are people way worse than me and i am only relatively mild but im only 35. I dont want to feel like this.

Sorry guys feeling frustrated today. the humour has deserted me. Im going to bed before i have to go to work

Pud

P.S I hope everyone is doin ok

Hey Pudmott,

This plaquenil !!!  Oh yeah to the GAS!!

I've been on it over a week, for the first time.

I have had great bouts of diarrhea and wind enough to blow me off my feet.

This evening I have been up and running about every 5 minutes. The past couple days were better than this evening.

I took it with yogurt a few hours ago.

Has any  one else had bad diarrhea with it?

I hope your better pud !
I was working 3 days a week. I just recently cut back to 2.
I hope you are able to cut back your work hours .

kimbo

Sorry for the rant. having a minor pity party. i got through my shift. only minor fluid loss tonight.
its midnight & im wide awake but feeling emotionally ok. my eyes are killing me but hey whaddaya do?
i'm snuggled in bed. its cold and wet outside i love it and i'm smoochin one of my corgi's. lifes pretty good.
i have dropped back to four days a week until christmas to see if i can shake off whatever is happening. then i can re evaluate. i'm also looking for a less physical job.

thanks everyone for their support. you guys are great.

pud

Well done with the hours, Pud. I hope it helps you get back on top of things.

Kathyx

Hi Pud,
I read down your list & saw you & many others are on Nexium, or another stomach acid blocker.  I read that many people w/ autoimmune disease have to take this med to "protect" your stomach from the pain meds.  I read something interesting & worth looking into.  It's a book by Dr Jonathan Wright & he says many patients actually test out for low stomach acid & get sicker when they suppress it more.  Just thought maybe something interesting to read.
jd

Thanks for the tip jd im on nexium cause i have reflux and a nice little (not so little) stomach ulcer.
I know when i havent been on it im really bad.

Thanks

Pud

Hi Pud,
I also read in a doctor's book that mastic & pepto bismal will kill H pylori & heal the ulcer w/o much side effects.  Antibiotics will kill all your beneficial bacteria & not any candida or yeast which will flourish in your body.
jd

I am aware of the information that many people actually have low acid in tummy but I would venture to guess that these people don't have sjogrens. With sjogrens we don't make enough saliva to dilute the acid in our stomach so our stomach acid trys to eat a hole in our gut which is why pud has an ulcer.

It really is rotten to have to take long term antibiotics for infections but there is no other choice when one has a bad infection. Those darn sinuses just love to breed those bugs. I hope you are irrigating your sinuses/nasal passages pud. It really does help increase the moisture on the mucus membranes which in turn helps keep the bacteria from getting through the cracks in the dry membranes.

Glad to hear that you are going down to 4 days a week. That should help you considerably. It will give you the 6 days off a pay period and help you stay more rested. When you get so hot at work try using a wet wash cloth around your neck. It really used to help me. Also, I know that they make ice packs that fit around the neck. It seems that if we can keep the blood cool when it goes to our brain our body cooperates better as does our brain. Good luck and let us know how things are going. Irish ;D

Hi Pud,

Sending you a hug ((( hug )))  Hope you are feeling some better tonight. Sorry that I missed you last night. I wasn't feeling well either.

I can't afford to take Nexium, so I take prilosec OTC. My Dr said that if my stomach was really bad, I can take 2 of them. 12 hours apart. That helps a lot. Can you try some yogurt? That also helped my stomach.

Take care Pud. ((( hug )))

Denise

Hey guys,
thanks so much for your support. I managed three shifts in a row and am still feeling ok. wasnt on today so indulged in a bit of retail therapy to buy gina a birthday pressie. Nearly had to swim to the shops tho we have had two months worth of rain in two days. nearly got caught in a flood driving home from work last night. scared the heck outta me. i have only had my drivers license for 5 months. first scary epsiode. I work tomorrow morning (Sunday) then have three days off so that will be nice. Doing the rounds of dentist, optometrist  monday then ginas birthday tuesday. Wednesday is a day of rest then thursday friday saturday sunday i am on night duty. I don't mind that cause i can sleep all day and do nothing.

Generally apart from my eyes i am feeling not too bad. just taking each day as it comes and really concentrating on resting when i can so i can do the things i absolutely have to do like go to work.

Now i have a question for you all (y'all). Does anyone have a spare Protazoan? A Protazoan u ask? Why? Well the answer is this. So far in the last 8 weeks or so i have had bacteria in my sinuses (ongoing), fungus in my mouth (candida holding off with fluconazole at the moment) and possibly down the gi tract as well and now have  viral conjuctivitis (eyes & getting worse as we speak). I figure if i can find a protazoan it can find a nice little spot to invade and settle in my body and i will have a full complement of bugs. Whaddaya think? My body is a germ wonderland at the moment.

Will have to try the ice packs at work. i am getting so hot and sweaty and my unform and hair and everything is just soaked. I was doing some googling last night and im thinking that my thyroid may be getting a bit hyperactive. My TSH levels are consistantly showing that my thyroid is high side of normal. i am wondering if with all this stuff going on in my body at the moment my immune system is heading after my thyroid. Im going to ask the immunologist on friday when i see him. i'd say i will be having a new set of bloods done then anyway.
Without going into too much detail i think the clindamycin may be having an effect on the excretory system too. Oh joy.

One of my work collegues actully gave me a diagnosis the other day and it actually makes sense. He says in his professional opinion i have lesbianitis..........i'm an inflammed lesbian. It made my day i had to laugh.

Sorry for the long winded post lots going too many germs. Hope you are all well in your own little scopes of wellness

Pud

Pud,
Don't ever lose that great sense of humor.  It's the only thing that keeps me sane.  I hope your themostat burns out soon and gives you some comfort.  I went through those sweats and I can sympathize with you.  The laundry sure can pile up fast from changing clothes so much. 

I hope your modified shifts help out and you get some rest. 

Take care and take comfort in knowing that "this too shall pass". 

Hugs, Pooh

yes Pooh,
my humour and the thought that evetnually this will pass is keeping me going, although at this time (3.30am) with swollen almost gooey eyes-im sure they'd be gooey if there was enuff moisture  but i can feel it- im getting a bit over it. I have just called in sick yet again cause i cant keep my eyes open long enuff or get them clear enuff to see at work properly. they are so gritty and even hourly drops are not working. My lids are getting swollen im wondering if it might be that blepharitis thing. going to the after hours doc at a reasonable hour.
My face is starting to look funny too-funnier than normal that is. Not sure but think the glands under my chin may be up and also the parotid might be on the up.

Does it end? I even considered fleetingly of going to the er and asking for some magic iv antibiotic that will take this infection onslaught away

Pud

Aww Pud!  I'm sorry you're still sick and fighting off such a collection of bugs!  I'm inspired by how hard you continue to try through to go to work despite everything.  I really admire your ability to recognize your limits and try to get yourself in a work schedule that you can manage and not make yourself worse!  It's such a hard adjustment to try and make and I can't ever seem to get it right myself.  Hang in there and I really hope your infections clear up soon!  And if things don't seem to be getting better or are getting worse, do go to the doctor and get it checked out.  *hugs*

Take care!

-Lauren

it's official!!!!!!!!!!!

[/glow]


PUD

I think the eyes are on the improve now. they are not as gritty today and dont feel as swollen. However as always there's something else to take its place.
Yesterday i noticed that i am feeling a little lumpy under the tongue. It feels a bit swollen and is very very dry under there. The parotids are also coming up and the tmj is sore.

oh well such is life. I see the immunologist on friday. Will see what he says.

Hope you are all well and having a good day (or nice sleep as the case may be at this point in time)

Hugs to all

Pud

Aww Pud, I'm with you on "Will this stuff never end?".  I wonder that on a daily basis with "Fred".  Some days he gives me a break, well, not all day, but some of it.  When "Fred" gives me a break, then my eyes start, and if it isn't the eyes, it's some other part. 

I'm with you, I HATE MY BODY too!  Or is it just the Sjs we hate so much.  I would say at this point............BOTH!!

Take care and have a good day.  I wish that for all of us.  Just for today, have a good one.

Hugs, Pooh

Pooh sorry to hear Fred is giving you trouble. Yes like you i just wish all of us to have just one day of feeling good and happy and be able to do all we want.

Are you hearing me universe??????????

Saw optometrist this arvo. Eyes are definately gettig better. Feel as tho i have golf balls under the tongue. Does anyone else get this?

Not sure if the face thing is glands or steroid bloat.

Too many questions

Pud

Hi Pud,
Glad to hear your eyes are feeling better. 

"Fred" will never really go away, but sometimes he lets me have almost a whole day without wobbling.  Then comes back with a vengence the next day. 

Take care and get some rest. 

Hugs, Pooh

Saw the immunologist yesterday. Still up and down like a yoyo. A good day or two then feel like crud. The sweating is getting beyond a joke. I have my house a/c on at 16 degrees and can still work up a swea just walking around. I glow so red i could guide a ship into port. The other night at work i drank 2 litres of water in 8 hours. I went straight fom work to the dr and he did blood tests. When i checked the results last night (perk of working in a hospital) it showed i was dehydrated. How much water has a girl gotta drink?????
I had heaps of blood taken. My white cell count is elevated so are my neutrophils so there is defiantely something funky going on in my body. Im still iron deficient and my b12 is going through my boots again. My inflammaotry markers are down but steroids will do that. I also have to do  a 24 urine collection cause im getting protein and he's sending me for a scintigraphy test on my salivary glands cause im so dry sore and feeling swollen. I have that on tuesday.
I have got another ologist. i got an ENT now. i hve to make an appointment to see hime next week. Hopefull he can work out why my face is so sore and my sinuses wont stop being infected.

So just generally im feeling like C***. I have done 2 night duties and have two more to do. Im hoping the body will last. It would be nice to do a week without calling in sick. I think i will just hook myself up to a saline drip to keep myself hydrated and keep plugging on. 8 weeks on im still none the wiser as to whats going on but at least im gettting tests and hay might shed some light. At least my dr agrees, this has been going on too long.

He asked me if i was depressed and was surprised when i said no. he said you should be with all this going on. I told him i have these wonderful friends who i talk to and are so supportive. It helps so much.

Pud

pud, I know just how you feel with the sweating and drinking and drinking. I know that I get dehydrated as the days I sweat so much my urinary output decreases a lot and my urine is much more concentrated. I spend so much time drinking it is rediculous. I don't drink a lot all at once, but I still put lots of ice in water/pop etc and eat a lot of ice along with the other fluids.

It is hard to find fluids that agree with me as my tummy has so many taste perversions and ability to tolerate foods and drinks, etc. I usually find the carbonated mineral water goes the best along with my Pepsi. Also the decaf coffee several times a day.

I am sure that with all the running around you do at work that you get beyond miserable. I remember doing that for so many years. I always felt so weird and always felt like others could see it on me. I guess they couldn't thougoh. Take care of yourself and get straightened out. Irish ;D

hey Irish,
I know they can see it on me at work cause i literally have sweat dripping off me. my air is soaked and my arms. my uniform is wet. They all look at me as tho im something from outer space. Especially at night when they all have cardigans and jumpers on and im fanning myself and drying off with a towel.
I am mostly drinking water. i have the odd can of coke but since i have been sick and my taste has gn funny im not likin it. its god in a way cause i was addicted to the stuff. now it takes me all day to drink a can. i also drink powerade every now and then just to replace the salts.
and yes your right after an 8 hour shift i come home miserable. Even the mere thought of heat makes me ill. Today its 30 degrees and i just cant get cool. Im sick of being wet. Wow oxymoron. a sjoggoe sick of being wet. did i say that. OMG im getting delerious. Now if only i could put the moistue in my eyes and mouth and gut i'd be fine. Stupid body.

Pud ;D

Pud,
I'm so sorry you are still having this problem.  I can only tell you that once it stops, it will a long time before it happens again.  I went through several months, well a lot, but then I noticed I wasn't sweating at all.  Even in 90 degree weather, so I guess I blew my thermostat completely.  ::)

I hope the doctor's get this under control for you and you can once again be comfortable.   ;)

Take care and keep smiling, if nothing else, it makes people wonder what you are up too. :D

Hugs, Pooh

I found a great way to cool down yesterday while i was sleeping. I had my fan on and blowing on my face but i also had an icepack and laid it across my head wrapped in a pillow case- the icepack not my head. For the first time in weeks i actually woke up not covered in sweat and felt quite rested. I went to work last night and have just come home and actually feel quite human. I also used the icepacks at work. Each time i felt myself heating up i got an icepack and wrapped it in a pillow case and just rested it on my face. It cooled me heaps and i got through the shift so much better. I have one more night shift to do and then im finished for the week. I think i might actually make it through the week without calling in sick for the first time in over a month.

Yay!!!!!!

Pud

Hey windy,

How U doin???

Hope you are feeling a bit better, glad the ice packs are working, and especially pleased to hear you are finishing your run of nights.  Take this week to 'try' and relax and enjoy some downtime.  Sometimes the body is just screaming enough is enough and a couple of days in bed, complete rest, although not always practical can do a world of good.

((((((((((((Pud))))))))))

Mim xx

mimsy!!!!!!!!!!!!!!!!!!!!!!

How ya doin honey. If i had intrnet at work i woulda chatted on Thursday morning but we're not allowed we might do something naughty.

I got through my nights and am feeling really good. My body likes night shift so much better. Not so demanding. And i sleep so much better in the daytime anyway. So for the first time in a month i have done a weeks worth of shifts ( a week is 4 days for me now) without being sick and falling in a heap. I am a happy little pud this morning.

My bloods are showing theres defiantely something funky going on with my body but not sure what. My white cells are up and i have neutrophilia but that could be from the pred too. My kidneys are a bit of a concern and i have to do some tests there but i will probably have to wait until next week for them. i am having my salivary glands scanned tomorrow and have to have radioactive dye so i wont be able to do wee stuff for a bit. Otherwise it will light up like a roman candle. Not a good look for ones wee.

I just hope we find something definitive. Not that i want to be sick but there has got to be some reason why i feel unwell. This is certainly teaching me patience.

I have two days off now so am going to chill. Hope all is well.