CFS linked to Sjogren's Syndrome - weird auto-immune disorder

[Mya Symons]

I am bumping this back up. I am hoping someone who also has Sjogren's can help me. I have had to use my Restasis eye drops lately 4 or 5 times a day. I am only supposed to use them twice a day. I also have been having difficulty swallowing and my tongue is swollen and has a lot of red bumps. And, I have been getting hard lumps on the inside of my lips. They are not cold sores because they are too hard and painless. However, they come and go. It is my understanding that the saliva gland problems with Sjogren's are permanent and don't come and go. Is that right? I don't want to go to the doctor, however, because they usually don't believe me until things get really bad. And, I really loathe doctors. Really. I am trying to get over that. Hopefully some day.

How do they diagnose Sjogren's when a person also has CFS? It seems like a lot of the symptoms would over lap. It also seems like many times we will have an illness, but it qualifies as A-typical (meaning it does not show up on antibody tests or other tests like it normally would). Has anyone here who also has Sjogren's had an Sjogren's antibody test? Did it turn out positive or was the only way you could be diagnosed was through a lip or mouth biopsy?

If you have any information that would help, please let me know. My husband just got out of the hospital and we are really low on funds. I would like to avoid unecessary tests and unecessary doctors if I can.

 

[heapsreal]

I am bumping this back up. I am hoping someone who also has Sjogren's can help me. I have had to use my Restasis eye drops lately 4 or 5 times a day. I am only supposed to use them twice a day. I also have been having difficulty swallowing and my tongue is swollen and has a lot of red bumps. And, I have been getting hard lumps on the inside of my lips. They are not cold sores because they are too hard and painless. However, they come and go. It is my understanding that the saliva gland problems with Sjogren's are permanent and don't come and go. Is that right? I don't want to go to the doctor, however, because they usually don't believe me until things get really bad. And, I really loathe doctors. Really. I am trying to get over that. Hopefully some day.

How do they diagnose Sjogren's when a person also has CFS? It seems like a lot of the symptoms would over lap. It also seems like many times we will have an illness, but it qualifies as A-typical (meaning it does not show up on antibody tests or other tests like it normally would). Has anyone here who also has Sjogren's had an Sjogren's antibody test? Did it turn out positive or was the only way you could be diagnosed was through a lip or mouth biopsy?

If you have any information that would help, please let me know. My husband just got out of the hospital and we are really low on funds. I would like to avoid unecessary tests and unecessary doctors if I can.

Mya, meryl posted a thread a few months ago on dry eye type symptoms in chronic viral infections, i have this problem and recently got tested for sjorgens and was negative, so im rack it up to my chronic viral infections. But its worth getting tested for though.

cheers!!!

 

[Lotus97]

In the cfs book 'fatigue to fantastic' yet to get to fantastic, drT has a saying that alot of cfs people drink like a fish and pee like a racehorse, this discribes me to a T, i know we have alot of hormone and adrenal problems and also wonder if its got alot to do that as some of these other adrenal hormones that control our water intake etc, although i dont have pots, i wonder if this is the reason why many do get pots, maybe dont have the urge to drink and are always dehydrated slightly, for me my urge to drink is almost constant, as my trips are to the dunny can, or the nearest tree in an emergency.

I find myself getting a dry mouth and feeling a need to drink a lot. I also have adrenal issues, but didn't realize there was a connection. I have a lot of the symptoms of Sjogren's, but I also have Lyme so my symptoms might be from that instead. My possible Sjogren symptoms include:
-high Rheumatoid Factor (20 IU/mL).
-sensitivity to smell
-sensitivity to light
-dry mouth
-cold feet
-joint/back/neck pain
I'm not sure about getting tested. I don't know if my doctor would be willing to get the tests done.