I am still not diagnosed....however, last Saturday I went to a doc-in-the-box for what I thought was a kidney infection. She gave me bactrim and darvocet. On Tuesday, I was worse...aching all over with no relief. I went to my primary...he did blood work and started me on lortab and robaxin. Thursday, I felt like I was dying. Went back for more blood work and he brought up the word lupus. For the time being, I am on the steroid pack, tylox and flexeril. These 3 meds have actually given me some relief. I am having a bad night, though. I just can't get comfortable. I am discouraged by some of the posts I've read on here. I didn't realize lupus was so hard to diagnose. I have already missed a week of work. I cannot imagine going indefinitely without knowing "why" I am sick.
Yes, Lupus is a very difficult disease to diagnose because many lupus symptoms mimic other illnesses, are sometimes vague and may come and go. There is no single set of symptoms that are uniformly specific to lupus and there are no laboratory tests yet available that can prove conclusively that a person has or does not have lupus. Almost every symptom of lupus can also be easily attributed to other illnesses or disorders. Also, many symptoms come and go, like fever, weight loss, fatigue and weakness. All of us, at one time or another, experience these symptoms. But, they can also be symptoms of other illnesses..so doctors have a difficult time pin pointing exactly what is causing the symptoms and if the underlying cause is Lupus.
The diagnosis of lupus is only made after a careful and thorough review of the your medical history, plus a thorough analysis of the results of your blood tests from both routine laboratory testing and some specialized tests related to immune system status. Since some symptoms of Lupus present themselves slowly or they only evolve over months or years, it is important that your doctor follow you during that period of time to see what happens. This "wait and see" approach often infuriates Lupus patients, but it is an important part of the diagnositc process. Therefore, it can often take years for the diagnosis to be made. This can be a very difficult time for the person seeking relief from the many, and often painful, symptoms of Lupus. But, it is only by this comprehensive examination can lupus be diagnosies and even then, it is sometimes very difficult to be absolutely sure. Most doctors will, in the meantime, begin treatment for our symptoms so that we can have relief while awaiting the diagnosis. Despite advances in medical education and technology, it is still not uncommon for lupus to be incorrectly diagnosed or require a lengthy period of time to be diagnosed mainly because the symptoms vary so widely, come and go frequently, and because the disease mimics so many other disorders.
An important fact to remember concerning the treatment for lupus is that the diagnosis of Lupus does not indicate the particular therapy to be used. Lupus affects each of us differently and, so, our therapies are all different. So, in the absence of a cure, present-day treatment of lupus is still primarily tailored to relieve the sympts and not to the diagnosis of Lupus.
Peace and Blessings
Thanks so much for replying. I have not heard back from my additional lab tests yet. I am psyching myself up to try and go to work tomorrow. I am very lucky because my boss is very understanding. Today is the first day I've driven in 12 days. I still do not feel well AT ALL. I am discouraged, though, for not knowing how long I'll be this way. I don't know how long I can take feeling so bad. I just want someone to help me. Is it common for the symptoms to go away while not on meds? I am just curious as to how long I can expect to feel sick. Again, thank you!
re to lupus symptoms
I have suffered probably for 10 years, no sleep,severe fatigue, just in pain. After my bout in the hospital for 4 day with my hands ice cold and my feet, 3 doctors came to the conclusion I have lupus however the tests showed negative. I will get a rash bad if Im out in the sun, and I have the ulcers in my mouth, just when Im sick with something small it makes me just lethargic. I started on Plaquenil twice a day and I feel so much better Im sleeping and I have so much energy, Im still in pain, but the darvocet, and skelaxin and lunesta help on those bad days and nights. So good luch and I wish the best for you.
believe it or not... I'm on xanax for my anxiety... .5 mg and then I take the tylonal brand sleepytime 3 hours before bed and I actually sleep through a night and feel refreshed. I feel better than I think I have in years. Althought I've forgotten what its like to feel well...
Could also be that I just got engaged!!!!!! :D :D :D
Congratulations Alloweyo!!!! :lol: