Bad sinus's

[joannebond360]

Hey everyone. Just wondering if anyone suffers with inflammed blocked sinus's? Feels like an infection but constant. My nose is always dry and my consultant said its likely that I have sjrogens along side lupus. I do all that the ent doctor said, sinus washes, drops, moisture spray and they still hurt so much can lupus cause this inflammation?

[DonnyJM]

Yes I do, I am always having sinus pain, blocked nose and associated issues - it was always thought to be allergic rhinitis or hay fever - I am still suffering now.

In fact it was during treatment for blocked nose and sinus issues that my ENT specialist decided to test me for autoimmune disorders including SLE.

I have had what was believed to be allergic rhinitis for about 5 years and after trying all options of sprays and medication nothing seemed to make any difference. After referrals, in February I ended up having septoplasty (operation on my nose) to help make the nose clearer and wider. During the op my surgeon notice that I had a thinning of the septum and a perforation which is a sign that Lupus or vasculitius may be the cause so she sent me for a load of blood tests and that's where the abnormal ANA and RF factors were found.

Seemingly when I saw my Rheumy this week he said it is often a symptom of SLE as it can attack any tissue anywhere. Therefore make sure you mention it next time you are at your GP or hospital appointment.

[joannebond360 in reply to DonnyJM]

Hey. Thank you for your reply. Sorry to hear that u have suffered so badly with it. Did the operation help you atall? I am under addenbrookes and have seen an ent doctor who is attached to my clinic, had a camera put up my nose and swabs done which came back with not a lot! So painful and always so dry, gives me terrible headaches and makes my throat sore also. Seems to be worse with a flare so it does make me think that it's the lupus causing it, eyes so dry too. All fun and games hey? Started on methotrexate last week so really hoping for a bit of releif very soon!

[DonnyJM in reply to joannebond360]

Yes to some degree in that having now a wider passage on the side that was operated on it is easier to breath through - less blocked but it hasn't cleared the cause of the sinus issue which is of course SLE. I'm in the middle of a flare at the moment and so it is worse again.

My ENT work was done at Peterborough but I'm under Addenbrookes for Rheumatology as it is not much further for me but seems to have a very good team in place.

Hopefully your methotrexate will help, I'm not on any meds as yet but hope to start soon as my diagnosis was only confirmed on Thursday.

One thing that does seem to help me a little was a nasal rinse spray called 'Sterimar isotonic nasal hygiene' which they sell at Boots. It might help ease the dryness but I'm no expert.

[gillw in reply to DonnyJM]

I can't believe what I've read about blocked sinuses, well I can, because I've had them for 2 years. I've had various treatments, steroid nasal sprays, long term antibiotics etc, one visit to ENT specialist who briefly look up my nostril and said there was nothing there. That was a year ago, since then have managed the symptoms reasonable well my self, using Neilmed sinus rinse and Flixonase nasal drops. My GP thinks I have nasal polyp/s.However sinus headaches and dizziness remain so all your replies have given the the oomph to pursue this further and get referred back to the hospital. We lupies are, by necessity, a resilient lot aren't we? My lupus was diagnosed in 1979 so I'm an old hand and used to the ups and downs of it all but i shall be glad when this problem is sorted.

[mountainlady in reply to gillw]

Gosh, I feel like I wrote your stream! I liked that "ent looked up my nose & said nothing there" LOL IT MAKES U WANT TO LUNGE AT HIM! ANOTHER STUPID DOC! NO I VERY MUCH RESPECT THEse WELL PAID KNOWLEDGABLE PROFESSIONALS. If only they would listen. He did tell me to use the saline stuff which I had in the past somewhat. He said use two bottles that's about3/4 cup solution per day. Also I added some hydrogen peroxide to give it a kick. H202 is chemical name. I started out in pre med tech but y memory went to hell. Actually I couldn't remember anything I had read. That s bad if your taking organic Chem. Bacteriology, etc and grew up.in the mountains & had come to the big city to go to college. I did pretty well in anatomy though. Got an a in Zoology!!! ONLY A I GOT EXCEpt FOR SPEED READING. That's one if those cources like basket weaving where they give u an A for coming to Class. The fog was starting to descend on me then. You guys know about fog. LONDON FOG. LOL I'm silly I know. This is my only chance to express my literary prowese?whatever. My vocab not to expansive at all. Never read much literature in my life. Wish I had had that desire. So much to learn from books. In just a hillbilly girl from the Shenandoah foothills of va. That's where a load of scotch-Irish settled in usa back then. I'm sure the great potato famine sent us here. my daddy made the best damn hard apple cider you would ever taste. He died in his mid forties .wonder what from? Just Joking. I'm sure it had something to do with all these autoimmune diseases I inherited from him. My twin brother & I were just 3 yrs of age. My poor mother had to make the decisions about the handling of the farm. A difficult thing for her to have to take on. It was a hugh apple orchard. Total acrage of land,1600 acres. Not totally in apples. I know my apples, baby. My father was a timber man too. He a turner . My mom a harris. Unfornately my mom liked the cider a little too much. I guess that's why she married him. My stupid older mean sister 74 yrs of age now it's 2015 said daddy had had to move the barrel of cider backup in the holler to keep her away from it. Those harrises had it bad. The etoh abuse.

I guess they had to self medicate for all the autoimmune disease they had. ie depression etc. I'll take a break now . Gosh I think I can write that novel now. Thanks guys for giving me this revilation. I said I always wanted to put it down in a book. That I wish I could write!!! Maybe I can!!!! To be continued. I luv u guys!!! My dream has come true thanks to you

[miseryislupus in reply to DonnyJM]

What a great, smart , wonderful Ent Doc YOU had. If only my ent had tested me for autoimmune disorders 40 or so years ago. He needs to be honored what s his name.

And I wanted to add of great importance that I read in "arthritis today " magazine that arthritis patients have 25 percent less chance of

Getting certain cancers: breast, prostate, & colon and I forget possibly the others because we take nsaids (non steroidal anti inflammatory drugs)-asprine, ibuprofen , and Naprosyn sodium!!! I think the world should know!!!!

[joannebond360]

Yeah mine is definitely worse with a flare, have got that nasal rinse, also got the nelimed sinus wash bottle and saline sachets, the specialist recommended it and it works so well, really soothing with warm water and that nelimed range do a moisturising spray that helps when it's dry.

I am under the vasculitis clinic at addenbrookes who are brilliant! I see dr Jayne.

Really hope your flare passes quickly and your sinus's settle down soon.

[joannebond360]

Also hope that you can start on some medicine really soon that will hopefully give you some relief.

[DonnyJM]

Thanks Joanne - I've got the Nelimed rinse too - forgot about that one. I saw ad Shenker for my first appt this week and I was really impressed. He's going to give me a phone consultation in a couple of weeks once he has my new set of blood tests and hopefully start me on something then.

Sinus pain is not fun so I hope yours eases off soon.

[DonnyJM]

I also meant to add that the operation is really painful for about 2 weeks afterwards so I would not recommend it without a lot of serious consideration. A lot to go through and not so much benefit.

[joannebond360 in reply to DonnyJM]

I bet it is. Sounds horrible. Thanks for that.

[joannebond360]

Good luck for the consultation. All a lot to take in once diagnosed, so good coming on here for advice from everyone. Keep us posted on how you get on. No it's not fun is it? just something else on our big long list of symptoms.

Take care.

[DonnyJM in reply to joannebond360]

My Mum was diagnosed with SLE when I was born so I am fairly well clued up for a newbie but it really great to be able to share things with others in the same or at least similar boat.

Great site and I'm pleased I found it.

[EOLHPC]

I've had. Lot of this sinus stuff all my life too. Thanks for your posts, donny & Joanne. Wouldn't wish this stuff on anyone, but good not to feel alone & isolated

Mostly, I've managed to cope alright with OTC & Rx and no ops. But 2 years ago (following on from finally be rediagnosed with SLE at addenbrookes (long story), starting plaquenil 400mg daily & having a flu jab (I'll never have one again if I can help it)) something dramatic happened:

An acute left sided sinus symptoms with a +++ staph nasal passage infection and the flare of osteomyelitis is my upper left jaw bone......

turned out I'd had the osteomyelitis & infection simmering in there for 20yrs.

It was having a root canal filled (20yrs ago) infected molar (that had most likely led to the osteom.) extracted and replaced with an implant, it seems, that led to the osteom. flaring more acutely and segueing into a one sided staph sinus/nasal passage staph. infection. The drs (max fac & ENT at addenbrookes + my rheumy, oral surgeon & gp) all had a field day. I was on high dose long term oral antibiotics (flucloxacillin) for 5 months. It was a nightmare. But it left me feeling I could survive almost any Rx treatment.

Scans seem clear of infection & osteom now, but low grade left sided symptoms remain & I've been advised to keep a sharp eye out cause this could all flare again.....and the drs really really want to avoid surgery to remove bad upper jawbone (argh: that's my face....). Diagnosis & treatment via the NHS was a long & drawn out affair: took nearly 5 months to finally see ENT. This slowness is partly cause my sort of prob hits an overlap btw max fac & ENT.....

So, I've been told that upper jawbone teeth roots can protrude into the sinus above, as we age (I'm 60 on Tuesday: yippee), and this has happened with me. Even my implant has slightly gone into my left sinus. Apparently this sort of tooth root into sinus protrusion is common place, making infection sharing possible.

So, the lesson for me was that I shouldn't have believed my (excellent) dentist during those 20 yrs since his root filling left me with some slight symptoms in the roof of my mouth that he thought "normal". Probably I should've got a second opinion. But, hey, my SLE diagnosis had been lost when I was a teen, so I was only vaguely aware I wasn't well and the infections I'd been prone to all over my bod all my life were actually a sign of something systemic....not perfectly "normal" as I'd lways been told (I'm not bitter, no!)

Whatever...stuff like this IS vvvv unusual, and it seems others are unlikely to experience tooth root/sinus/ jawbone infections....but, hey, please take extra care of your upper teeth re your sinus symptoms & conditions! Forgive me if you're already well up on all this.

Sorry to go on & on, but your great series of posts makes me feel you could be interested in my experience. By the way, during all that, ENT got me onto neilmed sinus rinse, and I still use it at least 1x per week as a maintenance/preventative measure...interestingly, since those 5 months on flucloxacillin, my sinus flares have been much less of a prob generally. But I still have constant left sided symptoms (post nasal discharge, slight aching etc

Take care

[JJKANE in reply to EOLHPC]

I get tooth root sinus as well

[miseryislupus in reply to EOLHPC]

Hi.this is diane from usa. I had 3 cysts removed from my sinus & upper jaw over 25 Yrs or so. (Cysts From Impacted Wisdom tooth. These cysts leave baby cysts &return again & again. I had a hard time trying to convince Dr's of cyst. They are odontogenic cysts. And they could be cancerous from what I understand. I also have read that infection can be a cause of lupus- a long term infection like I had that does not get treated. Or removed. through surgery. cyst was causing infection. I'm tired of thinking now. Just wanted to express my experience with sinus problems too.

[EOLHPC in reply to miseryislupus]

Hello there

Just read through all your replies to this thread

Thanks so much for replying to my stuff too

Your experience is vvvv interesting & helpful to me

I suspect we may have quite a lot of stuff in common

Please: do you have the internet link to the article you're recommending? I think it's on the mayo clinic site ?

If you feel like private messaging ever, I'd be glad to stay in touch with you

Take care...am so glad you had that brain wave re peroxide & BS toothpaste: WOW: what brand are you using

Hope you really are seeing some improvement & feeling a bit less fragile!

XO

[mountainlady in reply to EOLHPC]

High blood pressure.an autoimmune disease? I just found it online . Check it out: ABC NEWS Australian broadcast news . Some really interesting stuff on antibodies. I just started reading it. I got to get back to it. Antibodies are difficult to understand by me.

[diane_love in reply to EOLHPC]

By

[diane_love in reply to diane_love]

Hi barn clown. I really like you alot. You know life is hard w lupus.. People can be mean #####. My life has been a living #####. Did you read my info about EPI. &lupus.

Ilupus ust so technology Challenged I have difficulty With media stuff. Those passwords etc, are a pain. I put alot in info about EPI & lupus on this website.

I changed my name too. In Diane from usa,though. It is an "under diagnosed" medical condition. Exocrine pancreatic insufficiency. There's alot of info. I will get the website to you ASAP.

Also . now this is really bizarre. I found a site that says DE or diatomaceous earth lupu cures a lot of lupus problems itsays. Its likena miracle natural cure. They say on the website that is selling it. Shipping cost is 27.00. So I will see what I can find in the healthfood drug store. The bag of stuff is 10 pounds. And $14.00 for 10 poupounds. the quanties are large& cheap. That particular grade is for he

Human consumption they state. I was shocked to read the website about DE.

Imhad usedDE in the past and I still. Might have an agriculture grade around this place somewhere to put on animals for fleas!!! Its also for internal parasites in the

E animals & to kill any insect you need killed. One problem w it, although a minor one if u are careful not to shake the stuff around in the air. Dispersing it so that u inhale it. It is natural product from shelllike critters from millions of yrs ago. Kit is so fine like talcum powder it is easily inhaled. Nobody needs to inhale ypthat gins particle into the lungs. Just maybe wear a mouth cover . face mask thing. Or something. Over your respiratorybtract/ mouth & nose.

I am anxious to buy some. I justbp wok

Ildvlikecto see if its cost is reasonable in th e health food store. If they have it there. I mean $40.oo is not bad for a ten pound bag. Since u only use 1/2 teaspoon in a serving. Guess in some juice or soda. I forgotbwhat they said to put it in. That's enough for a year or two. I can't remember the specifics. Was reading fast to learn abou it. Like I said I had used it in the past and not to long ago. No problem. I did not know about its use as a lupus "cureall". I also did not have the for human consumption variety. I used it around the rooms down near the base ofvthe walls for any bugs that might come along. For fleas too for cats. Just be careful not to stir it ups they inhale

It. Its silica. It states. I believe it said it was used for many yrs in history ago to prevent almost everything.

I can't wait to get some. I need to sleep or lie down now

[mountainlady in reply to EOLHPC]

I jus wanted to thank you for your appreciating my information I have learned.barn clown u sound like a very sweet person. I HAVE Made A Miraculous Discovery OnLINE Yesterday. A Beatles song. I JUST watched THEir Video online at the hotel w all the screaming girls. I'm 60 yrs old. So I love them always. I think I might play their video at my funeral. LOL

[behappy1]

Omg, I have had this for 2 years but didn't realise it cd be connected to my lupus. I also use sterimar nasal rinse. It permanently feels stuffy and, if I close one nostril, I can barely breath. I sometimes put vasline in the nose or olive oil. This helps the dry feeling. Donny I'm in Peterborough too. Which ENT person did you see? I might ask for a referral myself. Xx

[JJKANE]

Yes I am on antibiotics for it again ... It's constant and horrible ... Could be sjorens or lupus , but it's horrible . I use vapour as well .

[joannebond360]

It is so horrible. Wow it sounds like a few of us are suffering with it! It's so horrible and painful! hopefully once medicine works for us it might work for the sinus's too. I get that too when I close one nostril I can't breath. It's like my nose just won't clear! Very annoying.

[KeiraMcC]

Constant nasal congestion too!!! Mentioned it to rheumatologist a number of times and he's always says it's not connected to Lupus!!!

Very interesting reading all the above posts......Thank you

[miseryislupus in reply to KeiraMcC]

Sjogrens can be secondary to lupus as well as Raynards disease can be secondary to lupus. My rheumy never said I had sjogrens. I just finally realized I did. Had the dry eye test &tested 4 out of 10 for dryness. Maybe see eye doctor

[anbuma]

i finally got a referral to ENT after a year of going back and forth between 2 doctors(about a year ago).I was getting nose bleeds and sores inside my nose and my nose was swollen at sides (bone which was also painful and sore to touch).when I saw ENT consultant he arranged a scan and then i got a letter saying my sinuses were normal and no more.i phoned his secretary and she was less than helpful.my nose is still the same today-with pain and swelling.one of the symptoms of lupus is nasal sores and when I see my dr on the 3rd going to bring it to his attention that my nose and eye area is still swollen and getting head pain.as well as the other issues i have- along list written down so I don't forget anything.

[miseryislupus in reply to anbuma]

Check out Mayo clinic research on protein toxins in sinus mucus! THE Mucus Is WHERE THE PROBLEm is. Happy. Happy happy!!

[joannebond360]

I am sure it is lupus causing it! Mine is worse with a flare too. The ent doctor that I see is attached to my clinic at the hospital, he prescribed me nose drops called flixonase which help a lot, he gave them to me for a 6 week course, once they had finished it all came back and got worse so my consultant has prescribed some more which again have helped. Can't use them forever so I don't know what will happen after them. So horrible. Get a sore throat too and roof of my mouth.

[JJKANE in reply to joannebond360]

i get the sore roof of mouth and throat all the time ..and lesions in soft tissue in mouth ... horrid .... and disgusting taste from partoid gland as it leaks ...

[joannebond360 in reply to JJKANE]

I get the horrible taste too. Not nice atall.

[DonnyJM in reply to joannebond360]

I think Flixonase and the other one that is also used, Beconase are both steroid sprays and they can help with the inflammation - probably in a similar way as taking steroids can help with other Lupus symptoms

It did help me too but I always seemed to get extremely irritable when taking any nasal steroid spray so came off them. GP thought it was me having a side effect of the steriod so I am a little worried if and when I'm prescribed steroids in the future...

[joannebond360 in reply to DonnyJM]

That's interesting Donny.... I know if I take over 7.5 mg of steroids I am crazy! Irritable, tearful and don't sleep as hyper. Maybe they can give you a low dose if need be.

[DonnyJM in reply to joannebond360]

Yes I think it will be just something to consider and look out for - I have no wish to be a grumpy old man although that may be too late already.... my Mum has always hated taking steroids cause of all the side affects.

[pirate-yaker]

I have SLE and had my nose "scraped" about five years ago. The Surgeon gave me a Neilmed irrigation system but told me to use warm (boiled) water and add rock salt to make a saline solution. I think the fine table salt has an additive to make it run more smoothly.

Really interesting post folks, I thought I was alone in this one.

Malcolm

[joannebond360]

I don't know what I would do without the nelimed range! Does help and soothe everything. I did also think I was alone in having this problem! Is a relatively new symptom for me and never had any sinus problems before having lupus.

[Bebe76]

I also had this problem of sinus pain, but no blockage. I also get a sore throat often, without any swelling of the tonsils, so there's no sign of an infection. I was sent to the ENT who looked around with a camera but didn't see anything except some dry white patches at the back of my throat. He said the pain could be due to the dryness (I have SLE with Sjogren's overlap), or a side effect of the hydroxychloroquine, but I had sinus pain before starting any meds. The worst of the pain subsided after I started on new meds (which also made my other lupus symptoms better), so in my case it seems to be related to lupus. The pain comes back when I have a flareup of other symptoms. I still use the Neilmed wash and saline sprays in the morning, since I still I wake up every morning with dry nose and throat.

[DonnyJM]

I think I feel a survey question coming in here perhaps? Might help to poll a few more to see if it is common like this thread seems to suggest?

[miseryislupus]

Yes I know exactly what u are suffering through.I too have a "mild or stable" lupus. I also have sjogrens. I am now suffering really bad with the extreme congestion & extreme weakness. I don't have any suggestions for u. I can only guess alot of water. If I feel any better tomorrow, maybe the hot tea worked today. I doubt it. I have been really sick for several days. I just try to take a sleeping pill &maybe sleep it off. I might have to go to doctor & they will I've me a nasal spray probably. I also use saline spray by Neil med. Just have not been using it enough yet this time. I need to try more frequently I think.good luck to you

[miseryislupus]

Oww. I did have one of those sores on the "outside" of my nose. It was so ooh sore I had to take ibuprofen for it. I couldn't even touch it. It was so swollenand red!!! I actual applied some watered down ibuprofen on top of the thing I was so anxious to get some pain relief. I hope never again

[miseryislupus]

I just read that rhinitis in lupus is not due to allergy. It just is a part of lupus from what I understand from the reading.

[miseryislupus]

I just read this.morning about new research about the mucus in sinuses having protein toxins--mayo Clinic!!!

I have been also using the Neil sinus saline solution as I should have been doing anyway. & I'm really feeling pretty good. I just have to be religious about it.

It is the mucus that is the big problem!!! And yes this is in reference to lupus patients-- the mayo clinic research on sinus mucus!!!!

[miseryislupus]

Dear Joanne bond. I have been thinking about your sinus problem, since I have been having a terrible horrible time myself with the sinuses.

I too have lupus. But I believe it's the neuropsych type of lupus. Rhemy did not specify. I would have thought he would have enlightened me with such info. He described it as "stable" lupus once & "mild" lupus another time.

But I have been reading up and have found out about the neuropsychological type of lupus.

I have been loosing my sense of smell & therefore my sense of taste. I have read that can be the result of many different sinus problems, polyp & infections are a few.

I have been so very very congested &weak & just wanting to sleep & very depressed.

I had been using the Neil nasal spray off & on, But not as much as i should. I was so sick i didn't really want to brush my teeth.

Finally a light bulb went on in my Foggy brain & I thought "WHy not use the tooth paste with proxide & baking soda? " I thought also ,why not use the mouthwash with peroxide &baking soda too. I keep the mouthwash in my mouth for a while & try to flush it all around to get up in sinus area. And it seems to have worked very well getting rid of the really bad congestion problem!! I actually am getting some stuff done after being sick for so long with sinus weakness problem.

I want to read the article on the dental care& lupus relationship very soon. Hope you try it. It really is unbelievable so far. I just need to do this dental sinus washing religiously. Good luck.

[DonnaldIW]

Hi everyone, I haven't been diagnosed yet but had polyp removal and scraping of sinuses about 25 years ago (yukky and painful) followed by years of nasal soreness until going gluten and dairy free. Recently I had a large nasopalatine cyst removed from the middle of my upper palate which was happily eating away at my bone. It never occurred to me (or the docs) that it was autoimmune but I have many Sjogren's symptoms and recently a high positive ANA. A poll would be very interesting x

[Marfarm]

So happy to find others as miserable with nonallergic rhinitis and its connection to LSE. It often appears when I have migraine, but can also be triggered by airconditioning. I am going to mention it to my rheumatologist next vist. Over the counter remedies irritate rather than relief. Will try the netipot again.

[mountainlady]

I'm out of it. I'm blue ridge from the past communications.I'm sick also now as usual as always. I diagnosed myself yesterday. Halleleuyah!!!. It's CALLED ENDOCRINE PANCREATIC INSUFFICIENCY. EPI. MUCOUS& SWEAT GLAND AUTOIMMUNE DISEASE. THE LAB Results are the same for SLE as I UNDERSTAND. positive ANA SPECKLED.I BELIEVE THATS HOW ITS CALLED. SPECKLED ANA OR WHATEVER. YES ITS BEEN A LONG ROAD TO DIAGNOSIS. I KNOW I HAVE REACHED MY DESTINY. Finally. Let's hope I find an endocrinologist to also to diagnose me!!

Symptoms are kinda disgusting. Lol.

Some of the symptoms I should say. Are u ready? I don't know if I can do it. I not feeling well today. Just look it up online. I need to get a soda first.

[mountainlady]

I keep losing my communication. I'm not doing so good. I'm diane/ blue ridge/ whatever. I just trying to get out the message. It's endocrinn pancreatic insufficiency. EPI. AUTOIMMUNE DISEASE LIKE THE LUPUS, RAYNARDS, SJOGRENS, ALL OF WHICH I HAVE. ITS THE MUCOUS GLANDS & SWEAT GLANDS I HAVE RECENTLY LEARNED are the culprit this time.

They say if u have 1 autoimmune disease U probably have several. How true. Anyway.AGAIN. EUREKA. ITS EPI. ENDOCRINE PANCREATIC INSUFFICIENCY. DNA FROM BOTH PARENTS OF NORTHERN EUROPE CONTRIBUTING. From what I have learned maybe a cousin to cystic fibrosis??? Thick, I mean rubber band like thick mucus. Salty skin like just having been sitting I a saltwater solution. Very concentrated saline solution!!! Are clues. I want to send u this before I lose it. Spitting up mucus now. On antibiotic finally. It will hold me til i get to an endocrinologist. ALSO ON fluticasone PROprionate FOR WHAT ITS worth. I went tothe emergency room yesterday. Was too sick to keep my doctors appointment earlier this week. Started TakiNg musinex-dmv to try and break up the mucus. Got a really good speed buzz from takin alot. Desperation to feel better. LOVE THE SONG DESperado DO BY THE EAGLES DONT YA? I will send this before I lose it.

[mountainlady]

Hi Joanne bond. This is diane in usa richmond. I'm very computer unsavy. 60 yrs old may explain why. And also antisocial. Oh well. When one is sick all the time it kinda puts one in The situation. Want you to read my stream about EPI. EXOCRINE PANCREATIC INSUFFICIENCY. I HAVE "mild" "stable"lupus sjogrens& raynards. Check it out. Good luck

[mountainlady]

Listen to some good classic rock can make u feel better!!!!!!! YeeeeeHii!!

!!!!!!

[mountainlady]

Joann bond360. Did u read my stream. I believe I have found the holy grail. A dIagnosis of EPI. ENDOCRINE PANCREATIC INSUFFICIENCY. ALONG WITH RAYNARDS SJOGRENS & LUPUS,OF COURSE

[mountainlady]

I just lost all that typing I had been doin. I not technology savy. Crap I need to try and send it all before it get deleted. So bear with me here. I don't understand the tech stuff very well at all. Just do the best I can. This is diane from n usa. I was talking about us Gov has dropped a ton of money on lupus research recently. I will send before I lose it now.

[mountainlady in reply to mountainlady]

I was expressing my thoughts about how many luppies are addicted to cocaine since no docs can help us very well. I had said no I can't afford that stuff. It really seems like a terrible waste of money. For such a small amount of drug. How many of us luppied might be dYing from cocaine abuse trying to self medicate ourselves because no docs can help us or listen to us. I'm only assuming the stuff clears the sinuses. Not promoting drug use.

[mountainlady]

Yes

[mountainlady]

Good morning , my fellow luppies. I'm up and awake again it's Monday morning Dec 14, 2015. Are u ready for the symptoms of EPI. The disease causing your miserable life. I'm just so happy to be on this earth and actually experience this horrible condition with u all. Yes we are alive right now. We know what suffering is all about. Nobody understands us. But we understand our fellow luppies.Lol. we need humor you know I love the comedian, Larry david. I think his name is larry. It will come to me clearer. Mayber after I have a few more sips of my early morning coffee. I can not believe he is such a genius!!!! A Jewish man said "he woke up this morning" when I asked him how he was doing. We all have to be grateful we wake up & see the light of day. Smart people I love em. I wish I had their minds. And taste. And comprension of fashion. Really I admire the jews. You know the jews and arabs are the same people. I bet u did. It's in the DNA. What a lot of fuss land will cause. I understand land. I can tell u later . Now back to EPI symptoms. Yes the mind does wander. I believe a symptom of foggy brain caused by our autoimmune disease affecting our brain. Itsthe psycho part of lupus I have expressed. Maybe the ocd. Pack ratting too? Now seriously. I will try to be a little serious. Yet all I just said is true. U know it. Do people think u r spacy too. They disrespect us. Just like Rodney dangerfield said. We get no respect.us luppies. Otherwise docs would or might listen to our symptoms. They think we nut, hypochondriac you know how it is. I will sent this before I lose it.

[iane]

I know I'm texting a lot today. Just haven't been online in ages. I just wanted to comment also on the sores in the mouth. I forget that is indicative of lupus. I also feel I'm very sun sensitive. I alternate between thinking I have sjogrens and not lupus. Its like I forget I have to put in sun lotion. I'm wondering if that's why I'm so weak all the time. The sun exposure. It just my latest rheumatologist does not seem to think lupus is a factor. And I forget to,mention mouth sores to him.. I dont always have them. And maybe the meds helped with keeping them at bay. My doc says I can go off the plaquenil to see if I feel worse or not. Since I don't have the bad pain characteristic of the lupus patients its Difficult to say i have lupus. My previous rheumatologists diagnosed me as having mild lupus... Later