Hi, I'm Evan. Diagnosis pending. Maybe Sjorgen's syndrome.

[Evan1]

My name is Evan. I'm glad to have found this site. After several months of several baffled eye doctors having no idea why my eyes hurt, I was starting to think I would never find an answer. I thought maybe I was the only person in the world like this. Now I know it's not just me. Now I know there are diseases with names that can do this to people, and people with names who are going through this too.

I think I might have Sjorgen's Syndrome, but I'm not sure at this point. Still working on the diagnosis. I have a lot of joint inflammation as well as dry eyes. Probably have gut issues too, as a recent stool sample had blood in it. I've seen 3 eye doctors and currently I'm seeing a rheumatologist.

Pain prevents me from doing much computer work, so my business is falling apart. I'm spending my life savings on getting by and medical bills. I have moments of despair and utter frustration. I manage to bring myself to an optimistic state of mind from time to time. Not knowing is hard to deal with.

My symptoms:
- Eye pain, mostly when looking at computers
- Dry eyes, especially when I wake up
- Headaches after using computers
- 2 visibly inflamed finger joints
- more finger inflammation in x-ray
- Costochondritis (inflamed chest cartilage)
- Achilles tendon pain
- Pain and slightly inflammed Sacroiliac joint
- Blood in stool sample
- Seborrheic dermatitis on my face and chest (autoimmune skin disease)
- Fatigue
- I wake up to pee 2 or 3 times per night

Anyway, I'll post my questions in other threads. Just checking in here. If anyone has similar symptoms or want's to talk about Sjogren's, I'm here

[PAllen]

Sorry that you're struggling, Evan. Hang in there. Don't give up. I hung in there, finally got a diagnosis, the the right doctor, the right treatment, and now I feel so much better. Try not to let the stress take you down.

[farmgirl]

HI Evan: Wow, no wonder you are frustrated and in despair. I am sure that the added stress is not helping you any either. I too am a Sjogren's sufferer, negative for blood work but diagnosed with a positive biopsy.

So lesson #1 negative blood work does not mean you do not have Sjogren's. Push for a biopsy if your Dr. says you don't have it based on blood work.

Having said that I do not have many of your symptoms but I am primary Sjogren's not secondary, it can be a very complex condition. Mostly I just have the dry eyes and mouth.

What you need to know thought is that you are in the right place to find help. Mostly ideas to try that have worked for others until you find that combination of things that work for you. I have improved vastly in the year since I found this forum. Here is what has helped me personally in no particular order.

Unpreserved eye drops as needed.
Cauterized puncta uppers, removable plugs in lowers
Serum eye drops
Wiley X goggle dark sunglasses
Restasis eye drops.
I also take Omega oils in a formulation specifically for dry eyes (not sure it helps but I take it anyhow)
I have installed F.Lux on my computer to change the background color to something more tolerable and adjust the light down.

All of the above has combined to make my eyes much more tolerable. I still have dry eye and still struggle at times but I am about 80% better than I was a couple of years ago. What i have really had to watch out for is sensitivity to drops that I put in my eyes that can make things worse. Twice I have developed problems and had to switch products. I totally cannot tolerate Gentel Gel at night.

There are many good ideas on this forum from many people who have been there done that. What you need to do is find the right combination, through trial and error, of things that work for you.

I wish you well...hugs...F/G

[Evan1]

Sorry that you're struggling, Evan. Hang in there. Don't give up. I hung in there, finally got a diagnosis, the the right doctor, the right treatment, and now I feel so much better. Try not to let the stress take you down.

That's great you feel better. I hope I can get a diagnosis and treatment as well. Having less pain actually being able to catch up in my computer work would be so great. Thanks for the support.

HI Evan: Wow, no wonder you are frustrated and in despair. I am sure that the added stress is not helping you any either. I too am a Sjogren's sufferer, negative for blood work but diagnosed with a positive biopsy.

So lesson #1 negative blood work does not mean you do not have Sjogren's. Push for a biopsy if your Dr. says you don't have it based on blood work.

Having said that I do not have many of your symptoms but I am primary Sjogren's not secondary, it can be a very complex condition. Mostly I just have the dry eyes and mouth.

What you need to know thought is that you are in the right place to find help. Mostly ideas to try that have worked for others until you find that combination of things that work for you. I have improved vastly in the year since I found this forum. Here is what has helped me personally in no particular order.

Unpreserved eye drops as needed.
Cauterized puncta uppers, removable plugs in lowers
Serum eye drops
Wiley X goggle dark sunglasses
Restasis eye drops.
I also take Omega oils in a formulation specifically for dry eyes (not sure it helps but I take it anyhow)
I have installed F.Lux on my computer to change the background color to something more tolerable and adjust the light down.

All of the above has combined to make my eyes much more tolerable. I still have dry eye and still struggle at times but I am about 80% better than I was a couple of years ago. What i have really had to watch out for is sensitivity to drops that I put in my eyes that can make things worse. Twice I have developed problems and had to switch products. I totally cannot tolerate Gentel Gel at night.

There are many good ideas on this forum from many people who have been there done that. What you need to do is find the right combination, through trial and error, of things that work for you.

I wish you well...hugs...F/G

Good idea farmgirl. I just put that on my Talk to Doctor list "get biopsy for Sjogren's, even if blood is negative".

I've been given regular eye drops, and the non-preservative ones too, but not serum drops or restasis drops. the 3 opthamologisits I've seen haven't even mentioned those. I'll bring that up in my next eye doc visit.

I have my computer at the darkest possible setting. I've also adjusted the color so it's really red, and as little blue as possible, as that's s'posed to be easiest on the eyes. I'll checkout F.Lux to see if it can do more.

I'm worried about developing problems to eye drops as well. now I have 4 kinds, and I kind of cycle them, using a different one each day. Not sure if that will help with preventing intolerance or not, but seems like it could.

I've looked at WileyX, but the website won't let me order them without a US military ID. Maybe I should join the army. Oh darn, I'm Canadian.

That's good to hear you feel a lot better. Thanks for sharing that. I have something to hope for.

[Katewest]

I have had dry eye for about 5 years developing slowly. I don't really have any dry mouth but sometimes in the morning it will be a little dry. So my only real symptom is dry eye. I'm 30 with no other health problems. After my blood work came back all negative with very low numbers, my rheumy said he did not think the lip biopsy was a good idea. It's apparently a pretty invasive procedure. I think there are lots of reasons for dry eye, MGD, etc but it doesn't always lead to Sjogrens. Especially in males.

[Evan1]

I have had dry eye for about 5 years developing slowly. I don't really have any dry mouth but sometimes in the morning it will be a little dry. So my only real symptom is dry eye. I'm 30 with no other health problems. After my blood work came back all negative with very low numbers, my rheumy said he did not think the lip biopsy was a good idea. It's apparently a pretty invasive procedure. I think there are lots of reasons for dry eye, MGD, etc but it doesn't always lead to Sjogrens. Especially in males.

Good point, Kate. I'll just have to keep testing til I find out what the cause is.

I had lots of eye tests, but they didn't exactly tell me the results or what they were testing. I think my TBUT was 5 seconds, she said 15 is normal. I'm gonna go back and ask for details. I also want a Schirmer's and a meibomian gland count.

I think they can use ultrasound instead of a lip biopsy to same effect. Less invasive apparently.

Sounds like you are still working on getting a diagnosis. I hope you can figure it out soon.

[bakunin]

Hi Evan,

Inflammation in your body, and if you think you have problem in your guts either, I really think you should try a more systemic approach. Guts are linked with a lot of diseases, with autoimmune diseases, inflammation etc. Try funcitional medicine, a good naturopath or nutritionist.
I don't have joint inflammation (just the "dry eyes"), and I think the change in my nutrition that I have started following a vegan nutritionist 3 months ago is beginning to work (or I hope so).

Basically, a lot of raw food, fruits, veggies (as juice or not), some nuts, integral rice, beans. No wheat, no gluten, no milk, no meat, and 1 liter of water kefir everyday, and some germinated seeds. It is not easy, maybe it is not fast, but I think it is worth to try. because it is not easy, it is better to achieve it with the supervision and prescription of a nutritionist.

[Evan1]

Hi Evan,

Inflammation in your body, and if you think you have problem in your guts either, I really think you should try a more systemic approach. Guts are linked with a lot of diseases, with autoimmune diseases, inflammation etc. Try funcitional medicine, a good naturopath or nutritionist.
I don't have joint inflammation (just the "dry eyes"), and I think the change in my nutrition that I have started following a vegan nutritionist 3 months ago is beginning to work (or I hope so).

Basically, a lot of raw food, fruits, veggies (as juice or not), some nuts, integral rice, beans. No wheat, no gluten, no milk, no meat, and 1 liter of water kefir everyday, and some germinated seeds. It is not easy, maybe it is not fast, but I think it is worth to try. because it is not easy, it is better to achieve it with the supervision and prescription of a nutritionist.

Nice post. I'm glad you shared that. I've been thinking along the same lines as you, as far as diet, gut and autoimmune go.

Although my research, has lead me to adopting a paleo diet, rather than a vegan diet. I was vegan for 2 years, and vegetarian for 10 years. I kinda wish I had never done that. I'll explain why. Although I'm by no means an expert, and I'm always open to hearing contradictory data and reassessing my conclusions. And if you are noticing improvements, that's really great.

I think it is good that vegan diets get a lot of veggies and no factory farmed meats. But legumes and grains are usually the main source of protein in a vegan diet. Legumes are hard to digest and are implicated in IBD and autoimmune diseases. Grains, especially wheat, can cause all kinds of gut issues, inflammation, and have been linked to arthritis and other autoimmune diseases. I see you are not eating wheat, which is one of the best dietary changes one can make. White rice is supposed to be the safest grain. Most vegans have a bad omega 3 to omega 6 balance, as it's really hard to get the right kind of omega 3s without eggs, fish and grass-fed meats.

Instead, I think a paleo diet is better for autoimmune, especially gut related, and general health. The basic premise is that we evolved over millions of years, eating a hunter and gatherer diet, and therefore that's the best diet for our bodies. When agriculture came along, we started eating foods that our bodies were not adapted to, like grains and dairy. That's the premise, but there is also a ton of supporting evidence, which I won't get into. Paleo diet is basically only nutrient dense foods: lots of good fats, meats like fish and grass-fed beef, no grains or legumes, and lots of veggies.

I've been paleo for 2 months. No noticeable improvements in symptoms so far, but I have noticed better blood test results in terms of blood cell type balance and inflammation markers. And I lost 10 pounds of fat.

[bakunin]

Nice post. I'm glad you shared that. I've been thinking along the same lines as you, as far as diet, gut and autoimmune go.

Although my research, has lead me to adopting a paleo diet, rather than a vegan diet. I was vegan for 2 years, and vegetarian for 10 years. I kinda wish I had never done that. I'll explain why. Although I'm by no means an expert, and I'm always open to hearing contradictory data and reassessing my conclusions. And if you are noticing improvements, that's really great.

I think it is good that vegan diets get a lot of veggies and no factory farmed meats. But legumes and grains are usually the main source of protein in a vegan diet. Legumes are hard to digest and are implicated in IBD and autoimmune diseases. Grains, especially wheat, can cause all kinds of gut issues, inflammation, and have been linked to arthritis and other autoimmune diseases. I see you are not eating wheat, which is one of the best dietary changes one can make. White rice is supposed to be the safest grain. Most vegans have a bad omega 3 to omega 6 balance, as it's really hard to get the right kind of omega 3s without eggs, fish and grass-fed meats.

Instead, I think a paleo diet is better for autoimmune, especially gut related, and general health. The basic premise is that we evolved over millions of years, eating a hunter and gatherer diet, and therefore that's the best diet for our bodies. When agriculture came along, we started eating foods that our bodies were not adapted to, like grains and dairy. That's the premise, but there is also a ton of supporting evidence, which I won't get into. Paleo diet is basically only nutrient dense foods: lots of good fats, meats like fish and grass-fed beef, no grains or legumes, and lots of veggies.

I've been paleo for 2 months. No noticeable improvements in symptoms so far, but I have noticed better blood test results in terms of blood cell type balance and inflammation markers. And I lost 10 pounds of fat.

Nice post yours either!

I read in this forum aht grains could be bad for us. But as I'm following a nutritionist who have treated other patients that had cancer and other stuff, I thnk she knows waht she is doing. Well, I'm eating a lot of integral rice and beans everyday, and some other grains in less quantity. I'm vegetarian for 16 years and was vegan for about 3 years.

My diet now will not be the same n the next monhs neither was the same in december. She changes my diet, because there is a time for each food in the treatment. In the last weeks I'm having more good days than I had in the las year. But in the last months my fatigue has worsened, and i don't know why...

best wishes