Eyes, sinus, mouth, lips dry suddenly

[jasonsmith]

Forgot to mention when sudden dry eye started. I started gaining alot of central weight at that time. It just keeps getting bigger even after eliminating alot of snack food. Never had that before.

Also within a week or two of the sudden dry eye. Developed a strange floater in one eye that I've never had before. I think another one started in the other eye. But it's a long strand hanging from the top of my eye ball. And when I look to the left or right, it sways back and forth. When looking at the sky, it looks like a piece of hair swinging by. I thought that was like winning the lottery twice in one week. but the doctors say it's all "coincidence." I don't believe that as it's just strange having two weird things at the same location develop at the same time.

I had read of diseases that can cause the strands inside the eyeball to fall off.

I'm also trying to get into the Boston Eye clinc for that Prose lense. If I can get in, I'll see what kind of eye tests they can do. As the 5 eye docs I've already seen for the dry eye haven't really done much other than a basic eye exam.

[littlemermaid]

You are pretty much immobile sometimes? Do you have work temporary to accommodate the ill periods? I've found it really difficult to find work that fits round these illnesses. Do you have a decent support network round home? This is not easy for you. Have you managed to find activity or diet support that suits you? La Diva had some good advice there.

Have you had endocrinology tests and full blood tests (thryoid, liver etc)? Is the low testosterone being treated? I'm wondering whether you are snoring (related to IH or neuro), and whether your eyes close completely at night (lagophthalmos).

When are the headaches at their worst?

[jasonsmith]

You are pretty much immobile sometimes? Do you have work temporary to accommodate the ill periods? I've found it really difficult to find work that fits round these illnesses. Do you have a decent support network round home? This is not easy for you. Have you managed to find activity or diet support that suits you?

The immobililty is like non-stop. I can still move around, but it is insane amount of fatigue, weakness, and joint problems. It affects my ability to walk to where I had been made fun of for over 10 years that I walk funny and talk funny. I used to could talk to someone for hours on the phone. Then with brain fog, I quit calling people, then quit hanging out because it's like your mind being blank all the time. The other thing is my muscles start burning and quit working real easily. i.e. cleaning a bathroom mirror. In seconds my arm is burning, and my arm quits working so I have to stop.

I haven't worked in like 3 years. I had a job in grocery over 10 years ago that I struggled just to do. Then they moved me pushing carts. Which sounds real easy. But I could barely do it, and it took everything I had. I felt like I had fallen off a mountain every morning. Only did that for a week and asked to be moved somewhere else. They moved me to unloading trucks. Well I did that for like 2 days as I could hardly make it. And asked to be moved again due to my fatigue/weakness. Well they said they moved me to enough places and fired me.

Then got on at a factory as was real easy at some jobs. You just stand there and clip pieces of plastic. Though alot of jobs I could not do. Got moved around and was lucky the main jobs I did I could tolerate. i.e. you just stand in one place. As I could not do a job where you were bending up and down as my muscles would give out doing that, also couldn't go alot of walking. But it was still hard nontheless. As some jobs had you squeeze a trigger to install a screw. Just squeezing that trigger all day made my finger muscles and joint muscles kill me. Luckily I hardly had to do that job. Just was lucky but got layed off even though I managed 4-5 years perfect attendance some how. It was getting to the point to where I was going to have to ask them to move me doing something real easy due to illness. Like inspecting parts or something. But I got layed before that happened. I had been dreading having to ask that as I knew from before, they usually end up firing you.

One thing I hated was I could barely do the job I was on. And the next guy on the line was lazy and would try and pass some of his work off over to me. Was irritating since I could barely do the job I had every day.

The other thing is walking funny and talking funny meant I didn't really fit in with people. So I tried to just do my own thing. But some people like to pick out certain people to try and get into trouble all the time. And I find people seemed to like going around trying to get me in trouble here and there. And when I got layed off, I asked the head manager why since I had 4-5 years perfect attendance and a near-perfect performance score.

I thought about trying something online. But I do know alot of that work from home jobs are scams.

There is no activity period for me. Activity for me is getting out of bed and going to the toilet. That is pretty much my limit of activity. I can't really do much more than that physically. For me, it's like being really really sick every day that never ends. The kind of sickness where someone calls out from work and goes and lays in the bed all day. That is where I'm at all the time. Which makes me think this whole thing could just be a chronic illness. So I'm hoping I can get into that Stanford clinic. As I was on those meds before, they just made my diarrhea alot worse and made it hard at work. But I'm not working now so I could tolerate it better.

[littlemermaid]

This is like living with fibromyalgia? http://www.nhs.uk/Conditions/Fibromy...roduction.aspx

What meds have the docs tried to manage the symptoms?

What I'm really asking is, have you got regular patient support groups and networks for living with fibromyalgia-like or central sensitivity symptoms or however docs can currently describe it, as you say, as well as us of course? what's available to you through the hospitals, charities and internet? What do they normally do in Rheumatology to support patients living this hard life? I'm thinking of physical and mental and spiritual therapy groups too, as LaDiva is saying. Are you OK hanging out with people with similar conditions in real life like these guys, helping each other and working on the diagnosis testing and treatment research together?
http://www.fmaware.org/
http://www.fibromyalgia-support.net/
http://www.patientslikeme.com/conditions/8-fibromyalgia
I've been reading on the internet about US gov programmes for veterans of eg Iraq and this might be something you're interested in reading about, strategies for how these guys cope with that.

Maybe it's important for you to counteract the depression that comes with this by joining up with other people and that it doesn't really matter where as long as you're happy with it, whether it's based on medical or social or interests. And it means getting out the home a bit as much as possible. Some of your ex-workers were mean but there are other kinder people out there for mutual support, working on looking for the medical solutions, and for us, it's been a question of following-up little opportunities in case they work out good. Sometimes we feel we don't belong where we used to, but we work it out and belong in a new place with new people.

Do you want to post what area you're in, Jason, in case anyone has US suggestions for contacts?

[farmgirl]

I don't know where you live Jason but I found this guy/video and if I had your problems Jason I would be running, not walking to see him. What he has to say hits the nail on the head. Maybe they can do the same thing at the Stanford Clinic if that is closer to you but from what you describe you go way-y-y-y beyond dry eyes. It sounds to me like you need specialized testing and care. I wish you luck...F/G

http://www.youtube.com/watch?NR=1&v=...ture=endscreen
Speaker is Richard I. Horowitz, M.D., a Board Certified Internist and Director of the Hudson Valley Healing Arts Center, in Hyde Park, New York, USA. He starts in French but changes to English so don't shut it down before you get to the English...F/G

[LaDiva]

Jason, have you tried Reiki? It has been a real lifesaver for me. I was terribly ill last year, and am 100% better. We are still working on my eyes, but they are better too. Reiki is energy healing, and it works. There is nothing scientific about it, but sometimes when symptoms and a traditional cure seem so enigmatic, it can be just the thing. It would supplement your traditional care. Just something to add to your list of considerations. Best wishes to you. I am truly sorry you are so ill.

[Tanner]

I didn't read everyone's replies. Maybe you can get tested for allergies. I wouldn't just take otc allergy medication because that can dry you out more depending. A qualified dr may help

[jasonsmith]

Jason, have you tried Reiki? It has been a real lifesaver for me. I was terribly ill last year, and am 100% better. We are still working on my eyes, but they are better too. Reiki is energy healing, and it works. There is nothing scientific about it, but sometimes when symptoms and a traditional cure seem so enigmatic, it can be just the thing. It would supplement your traditional care. Just something to add to your list of considerations. Best wishes to you. I am truly sorry you are so ill.

I looked that up. And I just don't believe in that type of stuff as far as treating/healing disease. I'd much rather run tests and figure out what is wrong and treat that.

Though I'm sure it is possible it may help one to relaxe or reduce stress. Like doing yoga or something.

[jasonsmith]

I didn't read everyone's replies. Maybe you can get tested for allergies. I wouldn't just take otc allergy medication because that can dry you out more depending. A qualified dr may help

I had been tested for allergies a long time ago. Had allergy to dust mites and ragweed. I used to have alot of sinus congestion and alot of mucus build up in my sinuses. I did do allergy shots for like 5-6 years, and started noticing for example after like 5-6 years that all that sinus mucus went away to where I didn't need to blow my nose anymore. As I used to wake up alot at night having to clear dried up mucus and blow my nose all day.

That is when I started noticing slight eyes, nose, lips, and mouth dryness when I'd lay down to sleep for some reason. Then maybe a year or two later is when the sudden dryness started as far as it bothering me.

[jasonsmith]

I don't know where you live Jason but I found this guy/video and if I had your problems Jason I would be running, not walking to see him. What he has to say hits the nail on the head. Maybe they can do the same thing at the Stanford Clinic if that is closer to you but from what you describe you go way-y-y-y beyond dry eyes. It sounds to me like you need specialized testing and care. I wish you luck...F/G

http://www.youtube.com/watch?NR=1&v=...ture=endscreen
Speaker is Richard I. Horowitz, M.D., a Board Certified Internist and Director of the Hudson Valley Healing Arts Center, in Hyde Park, New York, USA. He starts in French but changes to English so don't shut it down before you get to the English...F/G

Looks interesting. I'm sure I've probably come across that place before back when I was looking into Lyme. As there was a list of doctors who treat Lyme and chronic infection who take it seriously.

But I don't think I can go there because I have no insurance and limited income. Reason I was looking at Stanford is they do the chronic Lyme and viral, but I think they have financial assistance for those without insurance and low income since they are a hospital and not just a clinic.

If I was rich, I would have gone to one of those fancy clinics that don't take insurance because they run the tests they want to run and not the ones the insurance company lets them. Problem is they are expensive, so never could go there. Had to rely on local doctors and insurance. Problem is I wasted my time that I had insurance with crappy doctors. And I explained to them that I can't work forever and that insurance won't last forever. So my diagnostic time was limited, but they didn't seem to care.

I have contacted some Lyme and chronic infection research clinics just to see if they want to run tests and things for research, as that would help me out diagnostically. But they never get back to you.

[jasonsmith]

This is like living with fibromyalgia? http://www.nhs.uk/Conditions/Fibromy...roduction.aspx

What meds have the docs tried to manage the symptoms?

What I'm really asking is, have you got regular patient support groups and networks for living with fibromyalgia-like or central sensitivity symptoms or however docs can currently describe it, as you say, as well as us of course? what's available to you through the hospitals, charities and internet? What do they normally do in Rheumatology to support patients living this hard life? I'm thinking of physical and mental and spiritual therapy groups too, as LaDiva is saying. Are you OK hanging out with people with similar conditions in real life like these guys, helping each other and working on the diagnosis testing and treatment research together?
http://www.fmaware.org/
http://www.fibromyalgia-support.net/
http://www.patientslikeme.com/conditions/8-fibromyalgia
I've been reading on the internet about US gov programmes for veterans of eg Iraq and this might be something you're interested in reading about, strategies for how these guys cope with that.

Maybe it's important for you to counteract the depression that comes with this by joining up with other people and that it doesn't really matter where as long as you're happy with it, whether it's based on medical or social or interests. And it means getting out the home a bit as much as possible. Some of your ex-workers were mean but there are other kinder people out there for mutual support, working on looking for the medical solutions, and for us, it's been a question of following-up little opportunities in case they work out good. Sometimes we feel we don't belong where we used to, but we work it out and belong in a new place with new people.

Do you want to post what area you're in, Jason, in case anyone has US suggestions for contacts?

I don't believe in Fybromyalgia as I don't think it means anything diagnostically and shifts focus from diagnostic to labeling. As all doctors do is use it as a label to get you out of their office. Just like IBS, I'd much rather a doctor run tests to figure out the cause of my chronic diarrhea instead of just labeling it as "IBS" and calling it a day. It's just being lazy and causes significant misdiagnosises.

A rheumy I saw a long time ago before the dryness started gave me some prednisone to try. I tried it and reported back that I didn't notice any difference. And he said for people with muscle and joint problems, he gives them prednisone and they feel better. So he said he could do nothing more.

My latest crappy rheumy gave me some gabapentin, but I didn't notice a difference.

Doctors generally don't do anything. If mechanics did that, they'd be out of work. But doctors can do that and still charge you as they get paid whether they do anything or not. I bet doctors would do alot more if the patient didn't have to pay for non-treatment.

I've had doctors say "Hypochondriac", or "you look fine". Problem is after all these years I've had some things come up abnormal like 0 Shirmers. So doctors can't say these things anymore, instead they just say they "don't know", and so still don't even try. It's just excuses to get out of doing work. You have to run tests to be able to "know", you can't just know everything off the top of your head.

I'm not really insterested in support groups as my point in starting the thread was what can cause wide spread dryness other than Sjogrens? If someone has a wide spread dryness problem and doesn't have Sjogrens, what could be the cause? I figure there would have to be some ideas out there or known conditions. It's hard to look it up on the net as you keep running into Sjogrens.

[littlemermaid]

http://rarediseases.info.nih.gov/res...seases-program US government rare disease research and information website. This is what I mean about finding information websites of people with similiar undiagnosed rare diseases. They are same as you, looking for diagnosis and treatment - some dry eye patients here got diagnosis that way eg lupus, Behcets, erythromyalgia.

Maybe post a full list of symptoms to see if anyone recognises an autoimmune disorder inc the smaller things like eye discolouration or cold hands.

Does anyone in your family have genetic tendency to similar symptoms?

What meds are you on?

I'll keep looking for a list of dry eye causes from autoimmune diseases and post up if I find one. It'll be a long list though. I usually use Medscape http://www.nlm.nih.gov/medlineplus/a...ediseases.html

Info about testing http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/ Dry eyes, sinus, mouth, lips would be described as secondary Sjogrens ie the main cause is something else.

What would be really annoying is if it turned out to be something easy like diabetes or ferritin or vit B12 deficiency - have basic tests been done?

[jasonsmith]

http://rarediseases.info.nih.gov/res...seases-program US government rare disease research and information website. This is what I mean about finding information websites of people with similiar undiagnosed rare diseases. They are same as you, looking for diagnosis and treatment - some dry eye patients here got diagnosis that way eg lupus, Behcets, erythromyalgia.

Maybe post a full list of symptoms to see if anyone recognises an autoimmune disorder inc the smaller things like eye discolouration or cold hands.

Does anyone in your family have genetic tendency to similar symptoms?

What meds are you on?

I'll keep looking for a list of dry eye causes from autoimmune diseases and post up if I find one. It'll be a long list though. I usually use Medscape http://www.nlm.nih.gov/medlineplus/a...ediseases.html

Info about testing http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/ Dry eyes, sinus, mouth, lips would be described as secondary Sjogrens ie the main cause is something else.

What would be really annoying is if it turned out to be something easy like diabetes or ferritin or vit B12 deficiency - have basic tests been done?

I will have to check that website out when I have time. It looked like one of those 100 hour a week things. I used to look up illnesses and things on the net, problem is with fatigue couldn't really do it anymore so quit looking as it was too tiring.

I'm not really on any meds other than I take Evoxac sometimes and every once in a while take Ambien.

Right now the dryness hit pretty hard as it all starts bothering me alot and it goes into my throat, and you can feel it in your lungs.

I've had that diabetes stuff and others you mentioned checked. That's about all the doctors who run tests do, they do a basic blood panel. Then say that is normal and they can do nothing more. I think most docs only treat generic mainstream illnesses like diabetes, broke bones, flu, etc.

I'm not hung up on autoimmune causes. Right now blood work for autoimmune is negative. So I'm looking into non-autimmune causes of the dryness. I think there is a neurological cause as real bad dryness will hit mutliple areas at the same time.

I don't think the doctors understand the seriousness of the dryness. Because I explained the sinus dryness can cause damage, and the eye dryness can cause damage. So I explained I'd like to figure this out now instead of waiting around for magic to happen later. And they don't seem to be in any hurry as it's been 2 years now and nothing has been done other than autoimmune stuff and some basic bloodwork like the glucose.

Imagine if you took your broke down car to the mechanic. And he just checked the battery and then said that's all he can do. So then you have to just push it out into the ditch and leave it there all the while the mechanic could have been checking other things and fixing the problem and get it running.

[littlemermaid]

You're welcome. Many of us here are dealing with chronic undiagnosed systemic disorders, seeing many docs, although maybe your 100 docs might be a record.

Jasonsmith, Do you have muscle pain? any dermatology rash symptoms apart from caused by dryness? did you have treatment for Lyme? can you grip a cup or do your hands shake sometimes? That link above on tests is quite good - it lists some causes of systemic dryness with neuro symptoms.

Have you ever met anyone with the same symptoms? Is there anything available to help you get around in your neighbourhood? I hope you get to Stanford or similar and you find what you are looking for.

my point in starting the thread was what can cause wide spread dryness other than Sjogrens? If someone has a wide spread dryness problem and doesn't have Sjogrens, what could be the cause? I figure there would have to be some ideas out there or known conditions.

[jasonsmith]

You're welcome. Many of us here are dealing with chronic undiagnosed systemic disorders, seeing many docs, although maybe your 100 docs might be a record.

Jasonsmith, Do you have muscle pain? any dermatology rash symptoms apart from caused by dryness? did you have treatment for Lyme? can you grip a cup or do your hands shake sometimes? That link above on tests is quite good - it lists some causes of systemic dryness with neuro symptoms.

Have you ever met anyone with the same symptoms? Is there anything available to help you get around in your neighbourhood? I hope you get to Stanford or similar and you find what you are looking for.

One of my early symptoms was bad dandruff. The kind you have to pick out of your hair. Also had skin peeling some in my ear and inside my nose.

Anyways some time after the dryness started. Started having problems of skin peeling off on outsides edge of nose, and on upper lip and some on bottom lip. It gets real bad on my upper lip. But it's like a layer of skin flaking off at the same time. Looks real bad, but luckily my facial hair kind of hides it. but I have to try and scrape off the flaking skin, also use a scrubber, but doesn't do a whole lot. But the skin peeling off is so big, I have to pull it out from my facial hair too. I took a picture of it when it was bad and showed my Rheumy, but he didn't really say much about it. I guess he hadn't seen it before.

I'd say I have muscle pain. My muscles burn when using my muscles. Like when squatting and standing up, my thye muscles burn. But anything really. Only way I know how to describe it is think how your muscles feel at the end of a hard work out. That is pretty much where I start off at.

I can grip a cup, no hand shakes. But I know if I use a muscle, like holding things for a while like in a store. Then afterwords when using that muscle, it will shake I guess from the muscle being wore out even thoguh I didn't do much.

Also some time after the dryness, did notice vision change. Like when looking at bright light, or sky or concrete. I can see hundreds of these micro dots. Actually looks more like micro glowing worms. And they are squirming all over the place at a high rate of speed. I first noticed it at a teeth cleaning at dentists while starting at a square floresent light in the ceiling. There have been a few brief moments when I saw some of them in the dark. But i think it must be similar to those very brief speck of light I see sometimes. Just lasts a millisecond.