I read some of your stories and I could actually feel your pain and frustration. I am 44 yrs old and been suffering with alot of the symptoms of Lupus for abt 10years. Back in 1996, I had all the symptoms of diabetes and was diagnosed in 1997 with it - a month later I was told I had Mono. After getting my sugars and getting over the Mono - which took all abt 6 mos - I still felt bad. I was told it was all due to the Mono. Starting 1998 I started with more aches and pains then ever. My symptoms were fatigue, headaches, skin rash on face and chest area, my wrists, knees, ankle, feet and hips all hurt. My legs hurt soooo bad I had trouble walking - could not do too much with my hands either. I have been tested for sjogens, lupus lyme, ms,and few others. All tests came out normal - I did have a very low positive ana w speckled - but it was so low it negative. I have also have confusion memory loss, my hair is thinning, sun-sentivity, Also, I was told that I do not fit your typical diabetic - they think there is something that is causing me to be diabetic. I do have a severe vitamin d def which is very hard to treat because of my sun sensitivity.
So, sorry this is soooooo long but I need anyone who has any input of whats going on. I do have a great team of drs working on this. But I just feel I should talk with people who have this disease - they do know first hand abt it. Kind of like been there done that.
First and foremost, I am soo sorry you're going through this with little in the way of answers. I went 9 years without answers. I finally told myself I DO have Lupus, no matter what the doctors say. Someone wrote on here that the only way to get a higher ANA titer was to spend a day in the sun, then get your labs drawn the next day, when your body is wreaking havoc. The titers will be much higher and create a positive result for the doctors. I would do that also, If I could stay awake the day after being in the sun. I will try it next time, for sure. Any UV rays, including flourescent lighting in an office or school, will cause the fatigue and rash, depending on your body's reaction. So, next time you go to the doc and they want labs, let them know you don't have time to go right then, and will wait till the weekend. Spend allllll day in the sun, and the next day have a friend drive you to the lab, get the tests done, go home and get in bed. You'll have a chance at treatment that way. After all these years of no diagnosis, I FINALLY got into a Rheumatologist, who has diagnosed me with Lupus, Sjogrens, and Autoimmune Hepatitis. With the diagnosis, she is treating me for those diseases, whereas nobody would bother to treat the problems. I am now getting Plaquenil and Methotrexate daily,and will probably be getting Humira by Feb. 1st. I also just read about the antibiotics helping, if you take them daily for 1-3 years. I will ask the doc about that on Jan. 27th. She was upset that nobody was treating me with plaquenil or methotrexate all these years, when they don't have to be a rheumatologist to prescribe them. So, tell your doctor you would like to try these things. No, they don't make it go away altogether. But it helps tremendously. the winter weather is wreaking havoc on my joints right now, so I don't know if I'll be disabled soon or not. I'm hoping the Humira will help also. But I've gone several months with less pain that usual, since going on Plaquenil. Love it! Good luck. Just ask for the same meds that Lupus patients get and forget about the true diagnosis. Plaquenil works on most autoimmune diseases and you obviously have a autoimmune SOMETHING going on.
Thank you sooooo much. Thats what I do - I say that its Lupus. My doctor wanted me to start taking Celebrex for the inflammation. I go back in 2 weeks to discuss the results and where to go from there. I don't have appt w a rheum til April -but i will def do the sun thing because I do get very tired and moody from the hot weather even if the shower is too hot I get tired.
Did you just get diagnosed this year??? How are you tolerating the medications??
I just got diagnosed FOR SURE by a rheum. this June, so it took FOREVER!!! But, I was on Celebrex for a couple years, still am. It works great for me, but once in a while it seems like it isn't doing anything to help. So, then I go off it for 2 weeks, then start back up and all the pain goes away. It seems my body gets used to it. Once I go on the Humira, I will stop the celebrex, I'm sure. The meds are not a big problem for me. With the AIH, I have to watch my liver closely. But, so far, as long as I am taking the B Complex and a multi-vitamin daily, I don't get as tired as I would without it. The Folic Acid in the Vitamins keeps me going. I am very tired, and wonder what I would be like without coffee, which I need to give up for my blood pressure (360/240 usually without my blood pressure meds), but would be much worse without the folic acid. The doc gave me a Rx for just Folic Acid, but I need the multi vitamins for the other ingredients, so why fill the Rx for folic acid if it's in the proper amounts in my vitamins. Too much Folic acid is toxic, so I stick with just the vitamins.
FYI: If the shower makes you very tired, maybe you can get ahold of your electric company and see if they have a "medical utility rate" like ours does. If you have a disease that requires a certain temperature to keep your symptoms at bay, some utiltity companies allow you to be rated in the lowest possible expense for medical reasons. !!! worth checking out. It's a matter of getting your doctor to fill out the forms, tho.
Good luck with the Rheumatologist. Remember, by April there will be a good amount of sun, and you can take a day off work and sit outside ALL DAY (with a friend to make sure you don't fall asleep and look like a roasted turkey), and go do the labs the next day. I think you'll be surprised by the results. The day before Easter this year, I spent only 2 hours in the sun washing my windows and screens. I was fine when I went to bed that night (saturday), and didn't wake up again till MONDAY a.m.! My family had easter without me. I couldn't wake up. We have an extremely loud doorbell that is heard for one mile radius around our house....I didn't hear it Easter day. I didn't have a fever either. I also noticed if I'm stressed, like when traveling in the airport, I sleep the entire next day.
For a while, the primary care physician put me on muscle relaxors, heavy pain killers and the celebrex. All together, they made me very sick. I was vomiting at work and would need two people to hold me up while I walked to their car and they drove me home. The muscle relaxors were for the muscle spasms I was getting all over my body, including around my heart. They would work on about 80% of the spasms, but not all. Once I got on the plaquenil, I was able to give up the pain pills and the muscle relaxors. I only have about 1% of the usual pain, and no spasms anymore!
Oh! The reason the doc put me on the chemo (methotrexate) is because even with the plaquenil, my joints were warm to the touch. I hadn't noticed it. But she had me feel the upper arm/bicep area and take note of the temp (cool) then wrap my hand around my wrist and note that temp (hot!!!). She said when they are hot, even without pain, they are in the process of damaging my joints and will cause total debilitation of that joint. Eventually, I will not be able to use those joints, unless I stop that damage NOW. So, the methotrexate was to STOP the progression or stop the disease altogether, and it isn't doing it completely. I had an increase in the chemo, but it still isn't stopping it. I hope she doesn't increase it some more, cuase when she does I will DEFINITLEY lose my hair then. Right now it thinned out, but is mostly still there. The humira also causes hair loss, so maybe I'm destined to wear a wig! LOL! Anyway, I need my joints if I plan on living for many more years, so I best get them cooled down!
Keep in touch and let me know what the doc comes up with in April.
Boy oh boy I feel your frustration but have to say I did not have to wait as long as you for a dx. Let me say that you need to get hooked up to a Rheumatologist to help you with this dx. Also, other members are suggesting to try to produce "flare" prior to the MD visit. I can sympathized with those that feel this is an appropriate avenue to take but I have to say that I do not think this is a good practice as these "flare-up" symptoms do reek havoc to your system. Remember SLE can have harmful effect on major organs(Kidney, Heart, Liver, Pancrease, lungs) due to the immune response that is waged! Please see a rheumatologist, practice proper diet and exercise, quit smoking and alcohol use and finally get enough rest.
Thank you both - It is just frustrating. You know you have something wrong but no one can tell you what. I know my sugars are not good - I could have better control but they are not that bad to cause these problems. So the diabetes complications was ruled out completely. I really would love to do the sun thing once just to see what happens. I was told to go out in the sun because I have a severe low vitamin d count. We will see what happens. I will keep reading the comments on here.
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