View Full Version : my first time today.
08-04-2008, 08:25 AM
hi everyone. i am also on the long haul to know whats wrong with me. here is my history. and i want to know what you guys have to say. have fibromyalgia and chronic fatuige. got that diganosis about 9 yrs ago. after i started going to a new dr. he ran an a n a. it came back at 1.40 every 3 months i get new tests the next test was 1.80 then 1.160 they said deffently auto immune. now the test is 1.320 they say very high. and my blood now has homogeneous pattern.. i'm so sick of being sick. and i do have 4 sometime 5 of the criteria for lupus. i have another dr. who has said i have lupus. the other one says he is not sure yet.. i have made an appointment for a rhueatoligest. this is driving me crazy. im so disabled from this sickness. i can't do anything. and have to be taken care of. and that really hurts...
08-04-2008, 11:04 AM
Hi and welcome to the forum. I am sorry that you are having such a hard time. I think that the doctor is doing the right thing by testing you and all before he gives a final diagnosis. It is very hard to get a diagnosis of Lupus, because this illness can mimick so many other illnesses. The Rheumatologist should be able to sort it all out for you. I am wondering if you are sunsensitive and do you have the malar rash? There will be others that come in here that are very knowledgeable and they are wonderful.
08-04-2008, 09:52 PM
Hello and Welcome to our family :lol:
Kathy is correct, Lupus is a very difficult disease to diagnose. It can take months to a year (it took me a year) before we get a definitive diagnosis. Lupus is a disease whose symptoms resemble other auto-immune/connective tissue diseases. Also, as has happened to you, lab tests can change depending upon the activity of the disease (labs can be negative this month, and positive next month; tests can be low this week and high next week!). Also, symptoms come and go...some go away entirely while new ones appear. Finally, the disease can progress very slowly and until clinical symptoms appear, doctors cannot make a diagnosis. The disease is a frustrating to doctors as it is to us!
The best thing that you can do right now is to take all necessary precautions, make all necessary lifestyle changes (like avoiding the sun!), and request appropriate treatment for your symptoms. It is possible to live a relatively normal life with Lupus if those things are done.
The fatigue is debilitating, I know (I also have Lupus and Fibromyalgia - so I have double-whammy in the fatigue department!). I have found that the best way to help my fatigue is to get regular exercise. I know that sounds impossible when you are already so tired that you cannot move...but it is the absolute truth. You have to find some form of exercise that you can do on a regular basis. This will not only help with fatigue, but it will also help you to manage other symptoms of your diseases.
In the forums on this web site are many, many members who have posted great information about how to live with and manage Lupus. Please read some of the insight that our members have provided. Also, we are always here for you if you need answers, information or just support and understanding!
Peace and Blessings
08-07-2008, 12:24 PM
Welcoming you with open arms...sorry for the difficult time you are going through, the limbo diagnose speil...hugs.
It is hard being vulnerable, feeling unable, not because we don't want to be able because we can't... over things we have no control over, except to find someone, a doctor to help us manage our symptoms...
But there are ways you can help contain some of the pain... find ways to clear your thoughts, relax...eat for your health. Evaluate a day in your life of being ill and what things can you do at home to find a bit of relief. Laying about, dwelling magnifies the pain, the blues, the self pity and boy do I know pity. I've had a few of them myself where I was the only guest, the guest of honor...
I have to ditto what Saysusie says, about Fibro and exercise..even It with exercise. It does seem to make the pain more manageable. At least stretch everyday. Stand and reach for the ceiling while on your tippy toes, reach...release and take a deep breath and exhale slowly. Reach again. Even those who are reading this now, do a stretch..you will love yourself for it...don't forget to breath deep.
Being ill has no patience..but we have to find a way. I hope your doctors are treating you for your symptoms, are they?
Again welcome and keep looking for your wellness...
08-18-2008, 05:30 PM
My rhum. Doctor sat down and explained everything to me. He watched over me for a while to see for certain, because once you are diagnosed then "everything" will be blamed on Lupus. I am now taking plaquinil and am waiting the results.
I too have gone to differenct doctors but I believe the Rhum. Doctors are the "masters" to lupus. See what yours thinks about your symptoms and don't forget to bring a list of questions for them.