Dercums and Eye Issues?

I am having weird problems with my eyes…they feel different…I have blurry vision but not all the time and its like if I rub on my eyes it makes it worse…if I blink it makes it worse…if I open my eyes wider it makes it worse…Anyone have this too?? Is this what is meant by dry eyes??

I do too have those problems. it sometimes scares me as i think my eyes are deteriorating (sp). I had them checked last year as i see floaters, but i was told they are normal and not to worry too much about them. easier said than done. i am not sure about the dry eyes if they become blurry, i havent noticed. i wear contact lenses so usually use eye drops alot. if you are worried, get them checked out…for your peace of mind.

My eyes do the same thing, blurry, and just feel different. Its like the tear ducts are clogged and the moisture is too thick. That sounds strange but its kind of hard to explain. Occasionally I use the artificial tears, it helps most of the time.

Myself and my father both have the same problem with our eyes. I did read some where that its part of DD. Some times they feel like sand paper rubbing on them. Sensetive to light and scents in the air too.
Could be part of lack of sleep aswell.
I hope they feel better soon

The eye doc told me to use Systane eye drops. I have that roblem too and that’s why I don’t drive anymore. It has gotten a little better. I can’t hardly get through reading a newspaper anymore. I also got reading glasses per the eye doctor. Good luck, hugs, linda

Hypothyroid is a condition of sandy eyes,and blurred vision hypothyroid is a common disease with dd suffers as I’ve been told. Possibly Autoimmune system.

hi all
i know it ha been a while since you all heard from me been in hospital with a severe asthma attack for 3 weeks, while in there had problems with my eyes they became blurry then rolled up into my head this lasted for about half an hour. has happened before and is really weird as specially as no one knows why its happing.
oh by the way i am home now was back for 4 days when i tripped and broke my right ankle can’t believe this is happening to me and to make matters worse i cannot use crutches and keep my foot of the ground i just have not got the strength in my arms, but hubby and family cannot understand this ,keep nagging me about not given it time heal and making worse by putting weight on it.
oh well that’s my moan over with take care all
from helen


I’m so sorry you have been so ill again! And to break your ankle on top of everything else!

Someone on another site mention and roller device that allows you to rest the knee of the bad leg in a sling and just push yourself along with the other foot. (Kind of like a walker on wheels) Maybe you could check with a medical supply in your area to see if you can rent one? When I tore my Achilles tendon years ago, I used an office chair on wheels much the same way, using the chair back to hold on to. Just a suggestion.
Feel better!


The dry blurry eyes are part of DD. I don’t know if it is from the pills or just part of the disease. Mine has been bad for many years. I am getting plugs put in my tear ducts again (third time). This time he ordered in really big ones. They plug up the tear duct so the tears stay in your eyes to lubricate them. The plugs have always come out in a few days before so he is putting in big ones this time. The The RX drops for dry eye don’t work for me or his other patients either. I have Sjogren’s which is dry eye, dry mouth and dry joints…and I think people with DD have it also! My eyes get progressively worse as the day goes on. Be sure and use good eye drops at least six times a day. Use the expensive kind in the individual packs. Don’t blink them out right away…keep your eyes closed for a minute or so. Nothing can be done about the floaters. Your eyes rolling back in your head sounds like a form of seizure. Did they do an EEG? Your asthma must be really bad. Have you had allergy shots? My kids had allergy shots when they were young and they both got better. My grandkids did not get allergy shots and they are still getting better. My granddaughter still has some attacks but none that last as long as yours. You need to monitor yourself closely and take your meds and use your inhaler and steam right away. Asthma is such a serious condition. And your poor ankle! I can’t use crutches either due to having no elbow and bad shoulders. We should talk shoulders! Mine are full of DD! I hope that you are better soon. You poor thing! Rent a wheelchair! Hugs, Grandma Sylvia

Hi all, my eyes are also blurry on and off, I can actually see a film if I stay really still, also have floaters and recently have been waking up with crusty eyes to the point where my eyelids are briefly stuck together, twice this week so far. I get very gritty eyes as well and use drops too. The crustiness is something I would like to know if anyone else has?? Man, what a difficult disease…LadyMary

I wake up with crusty eyes too…They take a while before it goes away(the blurriness) but it will til night time…Then its back…I am so tired of the pain and all that goes with this disease…

Hi, sounds like crustiness, blurriness etc. all go with DD. I have read about S’joerns (mispelled I’m sure) disease going along with DD. I think Grama Sylvia mentioned it. I guess that would explain some of it but it would have to be diagnosed. Profusely sweating now, amazing how it just comes on and gets you soaked. Bye for now, LadyMary.

Yep. My eyes get crusty too, and very dry and sandy.


The interesting thing about Sjogren’s is that you get not just dry eyes and mouth but dry joints as well. My mouth is so dry my tongue sticks to the roof of my mouth and it is hard to talk.I have to constantly sip a liquid. My eyes get infection a lot as they have no tear film to protect them. This white screen is so blurry I can barely see what I am typing and the black floaters are all over the place. I haven’t got the tear duct plugs put in yet. I don’t think they will help as I don’t produce any good quality tears to be plugged up in the eye in the first place. My tear quality is poor. My shoulders always feel like they need a lube job as they are so dry and my hips and knees as well as the fluid in the joints is poor. I have been taking fish oil capsules for a few months. I don’t know what else to do for it. I use a toothpaste and mouth wash that is for dry mouth and I have a mouth spray but I don’t see much of a difference. I need cataract surgery but the doctor does not want to do it until he tries the new plugs for the dry eye which I don’t think will do anything. : )

That sounds beyond miserable, Sylvia! I can’t go five minutes without a sip of something liquid either, and my eyes are dry and sandy feeling, but I don’t think to the extent that yours are. The dry joint thing makes sense too. I feel creaky all the time in all my joints but, again, yours sounds far worse. Wish there was something I could do to help you.


Thanks for your good wishes Pam…as usual we have the same symptoms…we are indeed sisters under the skin! It is like “what fresh hell is this?” everyday. I feel like the tin man in the Wizard of Oz…I need an oil can to lube my joints…I creak and snap like crazy…my neck is so loud my husband can hear it across the room. At least I am not alone…I know I always have you to suffer along with me! Hugs from Grandma Sylvia

Happy to do it, if it makes you feel better, Sylvia! lol


I wondered if anyone else has lipomas above or around their eyes…I have one giant one above the right eye and a smaller one above the left eye and the right eye looks like its swollen and its closing on me…Anyone have this too?? Anyone have them removed?? I was supposed to see a plastic surgeon about removing them but I am afraid that they will grow back…

My eyes have been puffy lately and there is a purple spot at the outside corner of one and the inside corners of both of them. I don’t feel any lumps there yet. I don’t think I would have any removed for cosmetic reasons, but I would seriously consider it if they were endangering my sight. I would see an opthamologist, though, not a plastic.


The eye Dr is the one who said I should see the plastic surgeon but I am still afraid that if he removes it the things will come back"…