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bunker_57
07-14-2008, 12:25 PM
For the past few weeks, I have had swollen knees and joints, also my face is swollen, especially my eye lids. My vision seems worse and my ankles are really painful and week. My wrists and elbows too. Is this just the heat or should I be concerned about something more serious?

Oluwa
07-14-2008, 12:41 PM
Hi Bunker,

Are you between appointments? I would make an appointment...the key to managing Lupus is not to wait until the symptoms worsen.

It could be many things, from kidneys, to heart, sodium intake to your medicine that is causing fluid retention.

I could go into depth about each potential reason, but I think the best advice I can give for you is to make an appointment today. Please don't wait.

Be well.
Hugs.
Oluwa

bunker_57
07-14-2008, 12:50 PM
I don't know if this counts, but the only one I can see is my family dr. who has only delt with one case of lupus, and that would be me. My rhuemy only sees me once a year, and if you don't have an appt. six monthes in advance, you don't get in. Makes my family dr. mad, and I am not due til Nov. Then I have to request twice a year because of problems in the summer and my family dr. recommends this. But thanks for the input as I will call my family dr. tomorrow and she will get me right in, at least I will have an idea what to tell her. :oops:

Oluwa
07-14-2008, 01:09 PM
Hi Bunker...

I think it is great idea to call your Primary. Your family doctor can diagnose you...just make sure she has a list of all your prescriptions. She can order all tests to assist in a diagnose of why the retention of fluids..

If you are unable to see your Rheumatologist every two months to keep track of the activity of your disease I would schedule every two months with your primary. She can order your labs, blood work, UA just as well as the Rheumatologist.

The reason for regular visits, every two months, every three months is to allow the doctor to note any changes and to identify and treat flares early and new symptoms. And so your treatment plan can be adjusted accordingly.

If new symptoms are identified early, treatments may be more effective.

Some of us get better care from our Primary than our RheumBAs...this maybe the case for you.

Keep well...
Hugs,
Oluwa

bunker_57
07-14-2008, 01:15 PM
I try to follow all the rules about staying out of the sunlight at certain hours, wearing long sleeves and hat and sunglasses and sunblock. I ate well take vitamins and for over 3 yrs, by counts have been good. Last year I didn't even put in a garden, I mostly stayed in the house, with the air on and all the shades pulled. Kinda like living in a cave and couldn't quite force myself to do it this year. My family said it was so dark in the house, that I was like a vampire. So I painted all my walls and rooms brighter colors and it was still to depressing, so I put in my garden and started to go for walks again. Blew up like a balloon and my family dr. said no more walks outside. Wanted me to go to the armory and walk around with the other people that do it. That defeated the purpose of the walk. Tried it at dusk and the bugs ate me alive. :shock: Guess I looked like a giant lupie smoorgasboard! Bug spray just seem to season the food. Anyway, I went back to doing my gardening and waiting til the sun wasn't out so high, but before dusk. Could I have set my counts off doing this?

Oluwa
07-14-2008, 01:49 PM
Hey Bunker.

Some of us are more photosensitive than others that it may or may not trigger a flare. And some of our medications can make us more sun sensitive.

It is hard to say the cause as all of us are so different, and it maybe more than a flare as Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain.

Inflammation is considered the primary feature of lupus. Inflammation is characterized by pain, heat, redness, swelling and loss of function, either on the inside and/or on the outside of the body..skin, organs...digestive tract.

Sometimes we take all the precautions and still develop symptoms and/or flare. It is just best always to be diligent with your care. I know it is hard...but when we don't we pay the piper.

How are the bugs in the morning, for a before breakfast walk. Key is to avoid the sun at it's most intense. Most areas that would be between 10am - 4pm....

There have been new studies on sunblock, a family member, I believe it was Hatlady who posted articles about it, have you read it and seen where your sunscreen was rated as.

Were you able to make an appointment with your primary?

Keep well,
Oluwa

bunker_57
07-14-2008, 03:48 PM
My doc is gone in the afternoon hours, but she will be back tomorrow and I am to tell them to get me right in. I looked up Sjorgens and I really fit it to a tea. Printed out a paper for her to read and will see what she says. Most of the tests are simaliar to my lupus tests. Developed a new symptom, my little finger on my right hand feels like I stuck it into a nest of fire ants. Actually I had that feeling before on my forearms when I put in my garden. Might have spent a little too much time in the sun though. Thanks for all the info, sometimes I just want to talk to someone who knows, as I am kinda in a world of my own here...., very small town and if I say I have an auto immune disease, everyone presumes aids and even the doctors when I go as they take an aids test everytime. If you tell them no, I have lupus, the next thing you have to say is no it is not contagious. :lol:

Saysusie
07-14-2008, 09:12 PM
Bunker;
Let us know if your doctor agrees with your assessment and, if not, what she thinks is going on and what she is going to do to treat it.
I feel you about small towns and people who are ignorant about Lupus. No, not every auto-immune disease is AIDS (for crying out loud). I guess it falls upon you to educate your doctor and those folks in your town :(
In the meantime, you can always come to us. Everyone here understands what you are dealing with, someone will always answer your questions, and someone will always be here to listen!

Peace and Blessings
Saysusie

bunker_57
07-14-2008, 09:49 PM
Thanks loads all of you for being here, wish we could do this under different circumstances, :idea: but I sure am glad you all are here. Will let you know what she says. :wink:

KathyW1958
07-15-2008, 02:24 AM
Hi Bunker,
I hear where you are comming from as far as the community goes. You mention Auto-immune disorder and they freak. I am wondering if maybe you may have a B12 deficiency as well due to the tingling or stinging of your finger. You could ask your doctor to run a test for that as well. I would mention the Sjorgrens symptoms as well, because that can be an overlap of the Lupus. I hope that you can get some answers and let us know how it goes ok.

Hugs,
Kathy

laurid8967
07-15-2008, 05:30 AM
OK - thats lousy as far as no one knowing what lupus is. Up to 2 million people have it in this country for God's sake!!! Talk about much-needed awareness...
Bunker - when Im in a flare, the first way my hubby can tell is my eyelids - they are almost swollen shut when Im in a flare...My knees are what swells the most too! I do have Sjorgrens, too.
Hope you get some answers soon. Is there a university hospital in your state close by? Maybe you should look into it...
Love Lauri

Oluwa
07-15-2008, 11:06 AM
Hi Bunker...

Were you able to get in to see your Primary today...

There is a book out called The Lupus Book Third Edition by Daniel Wallace...a good read. It touches on other illness....Sjogren's, Fibromyalgia...check it. It will help with your appointments with your doctor...

Joints still swollen? Try hot and cold compresses...or heating pad. Move the joints a bit so they don't stiffen up.

Sometimes splashing the face with ice water, a basin with H20 and ice refreshes the face so it doesn't fell so tight. And moisturize with a light lotion.

A little help, hope it helps till you can get into the doctor..

Hugs..
Keep well,
Oluwa

bunker_57
07-15-2008, 11:17 AM
Waiting for a call back, she is gone this afternoon again, she goes to all the little towns around,(they are even smaller than this one) and so in the afternoon she is gone alot. Will call again in morning if I don't hear tonite. I just don't sit too much to keep my joints working and then at nite I sit in a warm tub and do excersises. The swelling is not as bad today, but the headache is still here. Headaches are normal though, so I just ignore them and continue on, unless they get too severe. Brain fog seems to be my major problem today. Worse than normal anyway. :oops: Can't seem to remember anything short term. Thanks for they check. Will let you know. Gotta go do some house work so I can do outside work this evening. Husband sprayed for skitters this morning! :lol:

mnjodette
07-16-2008, 03:25 AM
Sorry you're having a hard time, Bunker. I get the swollen eyelids thing too - quite a lot lately, in fact. Sure wish you had better access to your rheumatologist, but maybe your primary will provide you all that you need. Let us know what you learn when you get back from the doctor. Hope today is a better day....

Jody

bunker_57
07-16-2008, 10:40 AM
Well I called again and again they told me she was gone. I am so tired and fed up. I called my rhuemy in Rapid and she is spose to call back too. :mad: My eyes are swollen so bad that the lids look like balloons and my knees are so aggravated that if I bend down, I can not get back up without help and now my ankles are getting week too. The headaches are continueous and my frustration level is about to peek , as I just am shakey from anger.Can't wear my teeth cause of the dry mouth, they not only gag me, they cause blisters. My rings don't fit and my skin itches. Especially around my neck and head. Sometimes I feel like the only way I can get the dr. to take note is to collapse. My digestive system has been a mess for well over two years and my scope showed inflamation in my stomach, which could be from the fact that the only way I can have a bowel movement is laxatives every other day and most of the time I have to take them twice. :( I guess this is the part of the lupus that causes mental issues, as you feel like you are putting the dr. out. Sorry about the complaining, just feel like :x On the funny side, yesterday I was filling the sink to do dishes and got out the vaccumn to clean out under the appliances when I heard the sound of dripping water, and I looked up to the sink and my whole cupboard was full of water and it was running behind the stove. Just stood there, which seemed like forever, which was probably just a few seconds, before I reacted and figured out to shut the water off. What a mess! Told my husband as he was pulling out the stove, which I found filthy behind it, that it was god's way of telling me I needed to clean behind it and wash down the stove! :lol: Not too funny at the time, but funny now. Anyway thanks for the thoughts and all. Bunker

Oluwa
07-16-2008, 11:05 AM
Hey Bunker,

You have every right to be miffed and complaining, though I don't agree with the word complain. We are just telling our story.

Is there an Urgent Care facility in your area..an ER. I think with all this swelling your body is telling you something. Slow down and forget the dirt...and go to the ER. Maybe they can prescribe prednislone..you maybe in the midst of a deep flare. Kidneys maybe being affected...heart not pumping the fluid, possible...

Have you tried Miralax for your constipation. It is available without a prescription now. It works. I have a slow digestive system, had my esophagus dilated. Taking hard core laxatives only promotes a slow tract..give it a whirl.

Maybe you need to get refitted for your dentures...sounds like your gums maybe swollen too, or atrophy of the gums, loose fitting causing friction to create blisters?

For dry mouth sip lemon water, suck sugar free hard candy or csugar free cough drops. There is also a prescribed drug for artifical saliva, ask for it. I have Sjogrens' and I use Aquoral.

For the itches, try an oatmeal rinse. One cup of oatmeal to two quarts of water. Stir till milky, sieve and pour on affected clean skin. Do not rinse, pat dry.

Do you have rashes?

Please slow down till you can see a doctor..dirt can wait..health can't.
Hugs,
Oluwa

bunker_57
07-16-2008, 12:07 PM
I have tried almost everything there is to regulate and doesn't seem to work. Did the miralax for a week straight, every day, til the bottle was gone and had to take laxatives for two days to go. Rhuemy called back and is setting up appts. Hopefully they will figure something out so I can get things done again. Thanks for caring, was up in arms and does good to talk to someone who knows, helps slow that feeling of desperation. Bunker

laurid8967
07-16-2008, 02:38 PM
Im glad to read they called you back. I was going to reiterate what Oluwa said about the ER. We have all learned the hard way here that we cant be concerned that we are "putting the doctor out"...that is their job, you know? One of the biggest regrets I have today is that I didnt go to the ER and/or pursue the doctor more this past winter. I got sick on Thanksgiving and didnt get treated until June. This was, in large part, to me not wanting to "bother" the doctor. I was REALLY swollen, really sick, and had symptoms that I just shouldnt have let go. Thank God, it wasnt my kidneys, or heart, or I may not be here right now!
I dont mean to sound dramatic, I just dont want to see anymore of us suffer needlessly...I have HAD IT with the medical community!! Please do yourself a favor and take Oluwas advice...Forget the cleaning and rest your body. Its trying to tell you something...Insist on seeing the rheumie as soon as you can. You will feel so much better that you did. I couldnt BELIEVE how much better I felt - and how SOON - after I finally went back to the doctor crying out for help practically. She put me on prednisone and plaquenil, and the prednisone started to work in two days. I had just left my JOB! I had been in bed almost 6 months! And all it took was a little persistance.
Please let us know how you make out...and NEVER feel as if your complaining...you are living with a chronic, son of a @!# of an illness, and we need to vent sometimes.
Take care of yourself and keep us posted...
Love Lauri

bunker_57
07-16-2008, 07:52 PM
Thanks for the ear, I have to go 280 miles to see my rhuemie, and the appt is next thurs day, she also set the ball rolling on getting me a gastrointestinal dr. They are spose to call this week and set up an appt. She was very understanding and got me in as soon as she could. We only have a few rhuematologists in this state and they are on the west side, and east side, and I am in the central part of the state. That is how most of the specialists are. Well any way thanks alot. Bunker

laurid8967
07-17-2008, 06:07 AM
Good for you, Bunker, for taking action. I know its hard to do sometimes. I cannot IMAGINE being that far away from things!! Im such a city girl!! I live on the beach in a city called Quincy, just south of Boston, MA. I can be in downtown Boston in less than a half an hour - by train, boat or car!!
Its strange, all the different lifestyles and areas, etc and we all have the same disease, you know?
So, until you see the doc, I take Excedrin RIGHT when I get up in the morning. It has ibuprofen, Tylenol and caffeine (dont be fooled, by the way. ALL Excedrins are the same ingredients - no matter what they say on the front i.e. Migraine, Arthritis, etc. EXCEPT for PM) I find the store brand is just as effective. I then take more around lunch time, and at night before bed I take Aleve and Benedryl. It helps me sleep and the inflammation.
Maybe this will help until you see your doc? Good luck and keep us posted..
lauri

bunker_57
07-26-2008, 08:24 PM
Went to rhuemie, she did all the tests, won't get an answer for two weeks. Swelling is going down a whole lot, usually does by the time I get to the dr., took pictures though. She thinks I have hepatitus A, don't know how that is possible, but on the ride home, we realized that we ate take out twice before I got sick, and that my husband had flu like symptoms too. We never eat out, so I had forgotten. Well she did all the regular tests and a few more. Will be glad when I know something. Have an appt in the middle of next month with the gi and then go back to rhuemie in Oct. Feel much better though , but at nite the hot and cold spells still come on and the light headed stuff. Mild headaches, she said I would slowly start feeling better and seems to be the case. I even will get a few things done during the day and that is great. :wink: thanks to all, bunker! My garden is calling :)