Okay, I have read a lot of the discussions in here and it is good to know that I have some place to go to possibly get some answers. I've had a very poor immune system pretty much my whole life and yet I am still not diagnosed with anything!! Very frustrating. I live in a small town where our doctor choices are slim and hospitals are slimmer, which is why I decided to branch out. I think I am on the right track now and just trying to keep the momentum going. I found a new doctor who had me tested for SS, which came up negative in the blood so far, I found a new dentist who had me fitted with a mouth guard which has helped a lot of my TMJ and ear issues I was having. I'm on the look out for a new allergist/immunologist next. My main "daily" issues are: sandpaper eyes (some days it hurts just to have them open), dry parched mouth (I drink and drink all day long) chronic headaches, extreme fatigue and general body aches and pains (always feel like I have the flu). My bad days are bad, but the good days are great! I go through phases. Don't get me wrong, I never feel "great" anymore, but most days I'm able to work. We'll leave it there cause most days that's about all I get done besides holding down the couch. Weekends I might clean, work on projects, hang out with the family, do some grocery shopping and maybe cook dinner. I also suffer from severe depression that I've been on meds for years for, so the guilt of not caring for my family the way I want to really gets to me. All I ever wanted to do was be a mom and wife. I also have other health issues, but these are the main ones. I think. I will probably post some of the others later, but for now this will do. My main issue is the eyes. I use Pat a Day, which is a prescription, but it normally works, then for about a week I will just flare up and sleep as much as possible. Work, then bed. My family needs more than this. Any advice on the eyes would be great.
Warm eye compresses can help, (either a warm flannel, or you can buy eye pads to warm in the microwave), plus it might be an idea to try a different form of artificial tears- I'm in the UK so have Xailin eye drops which are quite good, but US members can probably give you some suggestions- ones that don't contain preservatives are best as you'll probably need to use them 3x a day. I think Restasis seems to be a common US brand of eye drops Some members have tried having punctual plugs/ occlusion done to stop what tears you have draining away. It is important to get your eyes checked regularly by an ophthalmologist as you could get scratches or ulcers on the cornea if they get too dry. We're not medical professionals on here, but I think you would be better to try artificial tears, as from what I've read about the drops you're on they're to stop inflamed eyes, whereas if your eyes are inflamed because they're dry, you need moisture in them.
It seems to be quite common to have the blood tests come back negative (mine did), but if you can find a good doctor hopefully they will treat the symptoms you have. A lot of members have tried medication such as Plaquenil which can suppress the overactive immune system, so it can help with joint pains and tiredness- if you look in 'all discussions', and put plaquenil into the search box it'll come back with lots of discussions!
The dry mouth is really annoying, and you need to get regular dental check ups and be careful with dental hygiene as you can be more prone to tooth decay. Some people find artificial saliva helps (I use Biotene gel sometimes), or chewing gum, although if you have jaw problems then you might find that too painful! I'm thinking of investing in a 'camel back'-one of those water pouches runners wear on their backs- as I'm so fed up of carrying a bottle of water everywhere now!
The good days/ bad days/ flare-ups is common. You sound like you have a positive attitude, and a good sense of humour- you made me laugh with your description of holding down that couch! I like that- I've done a lot of that myself today!!
Hope this helps, and if you have time have a good trawl through old discussions as they can be really useful sources of info!
Everything Jules says, plus,. . . .I use a night time lubricant for my eyes at night. I’ll also add in that starting to use evoxac for the severe dry mouth has been a real game changer for me. At the bare minimum the symptoms need to be treated in order to ensure that you don’t have damage or lost teeth.
I have been using a warm compress the last couple nights and that seem to bring me a lot of relief in just a few minutes, which is great. I need to make an appointment with the eye doctor and make sure everything is good there. Put that on the dr. to do list.
I did allergy shots for two years and they did absolutely nothing for me so my allergist/immunoloist did some tests and they came back that I was IgA deficient. I had some pneumonia shots (two-they wouldn't do the one without the other) and a 6 month round of antibiotics and my tests came back that I was not deficient anymore. We tested for 80 more things 6 months later cause I still felt the same--came up nothing. He opted NOT to retest my blood! Even when I asked--he told me that I would just need to learn to live with it! Oh--I was angry to say the least. I am basically allergic to nature, but I always feel like my sinuses/allergies are acting up. I never had allergies until about 4 years ago.
I see my pcp in March, so I think at that time I will suggest bringing in the rheumatoid dr. She was going a little slow with me cause she knows how many specialists I went through last year and multiple tests and doctors.
I also have the brain fog that I saw one of the members post about and THAT is driving me crazy! Feel like I'm 75 with the way my memory and speaking skills work anymore. My latest "issue" has been itching with hives and welts all over my body.
Most of the time I try to keep a positive attitude but I'm not always like that. I have an awesome support system as I mentioned. My little family is my anchor. Everything I do I do for them. It gets frustrating when I can't do for them as I want. I have a very sarcastic sense of humor and I'm at that point in life when I know I'm not normal and I'm okay with that. I talk about my depression, people need to know about it and what people suffer. I'm not quite as open with everything going on in my body cause as I'm sure you all know it's invisible and a lot of people just think we're hypochondriacs.
I'm paying a little today cause yesterday was a decent day and after using the compress my eyes didn't hurt so bad so we had a family game night and I think I overdid but it was worth it for the memories.
Jules said:
Warm eye compresses can help, (either a warm flannel, or you can buy eye pads to warm in the microwave), plus it might be an idea to try a different form of artificial tears- I'm in the UK so have Xailin eye drops which are quite good, but US members can probably give you some suggestions- ones that don't contain preservatives are best as you'll probably need to use them 3x a day. I think Restasis seems to be a common US brand of eye drops Some members have tried having punctual plugs/ occlusion done to stop what tears you have draining away. It is important to get your eyes checked regularly by an ophthalmologist as you could get scratches or ulcers on the cornea if they get too dry. We're not medical professionals on here, but I think you would be better to try artificial tears, as from what I've read about the drops you're on they're to stop inflamed eyes, whereas if your eyes are inflamed because they're dry, you need moisture in them.
It seems to be quite common to have the blood tests come back negative (mine did), but if you can find a good doctor hopefully they will treat the symptoms you have. A lot of members have tried medication such as Plaquenil which can suppress the overactive immune system, so it can help with joint pains and tiredness- if you look in 'all discussions', and put plaquenil into the search box it'll come back with lots of discussions!
The dry mouth is really annoying, and you need to get regular dental check ups and be careful with dental hygiene as you can be more prone to tooth decay. Some people find artificial saliva helps (I use Biotene gel sometimes), or chewing gum, although if you have jaw problems then you might find that too painful! I'm thinking of investing in a 'camel back'-one of those water pouches runners wear on their backs- as I'm so fed up of carrying a bottle of water everywhere now!
The good days/ bad days/ flare-ups is common. You sound like you have a positive attitude, and a good sense of humour- you made me laugh with your description of holding down that couch! I like that- I've done a lot of that myself today!!
Hope this helps, and if you have time have a good trawl through old discussions as they can be really useful sources of info!
Yes, I have bad teeth as it is and I think I missed my appointment in December, so I have some calls to make. My TMJ doesn't bother me as in pain, I do have earaches because of the thinning of the bone though. Thank you both for you replies. It is good to have somewhere to go.
Stoney said:
Everything Jules says, plus,. . . .I use a night time lubricant for my eyes at night. I'll also add in that starting to use evoxac for the severe dry mouth has been a real game changer for me. At the bare minimum the symptoms need to be treated in order to ensure that you don't have damage or lost teeth.