Needing some words of advice..
Hi all! This is my first posting ever on a website - don't you feel lucky that I chose this website!!
I'm really looking for some guidance and advice. Starting last fall/early winter, I started having severe fatigue and was sleeping as much as I could. I also had trouble with motivation, concentration, short-term memory. I'm a physical therapist and I was really having trouble keeping up with the fast pace of the clinic I work at. Then I started getting stiff hands and feet, especially in the morning, but it stuck with me all day. Then I started getting achiness in the hands and fingers.
I was seeing my doctor about these things, going for all sorts of blood tests. Everything has come back negative and nothing on x-ray either. Saw a rheumatologist who couldn't find anything wrong with me. Then once when I was at the doctor's, I happened to mention this sore in my nose that hadn't gone away for 3 months. He suddenly paid more attention to my complaints and said that some arthritis presents with sores in the nose. And that's the first I heard of lupus, but from my own research, not his words. So I got some antibiotics and the sore cleared up. I see an ear/nose/throat specialist next week, but since the sore is gone, I'm sure he'll look at me like I'm an idiot.
Now in the last week or so, I feel a lot better. But I've had these "good spells" before, just to drop back into the bad days again.
Does this story sound like anything anybody else has experienced?? What do I need to do to make the doctors take me seriously - the last one told me to go on a holiday with my spouse and get away from it all!
One other question-does the rash that goes along with lupus feel hot and flushed sometimes? I do get red cheeks, and ears, it seems, but it's often accompanied by a feeling of warmth.
Thanks for any input you can give me - I hate complaining to friends/family, but I really do feel that there is something wrong with me.
I think a lot of us here will sympathize with what you're going through because it's very hard to get doctors to take your symptoms seriously when they seem to come and go. Unfortunately, the pattern of relapsing/remitting illness that goes in cycles is very common with many illnesses, including lupus, but it also happens in diseases like multiple sclerosis. Fatigue, joint pain and stiffness are common symptoms in many illnesses, particularly the various forms of arthritis, but they are also common complaints in depressive illness. So doctors sometimes tend to go for the easy explanations like stress or depression when they aren't sure what's causing your symptoms, rather than admit you might have a physical illness they simply can't diagnose. So it's important to have a doctor who will really listen and work with you.
Lupus can cause nasal sores, but most patients with nasal sores will also have mouth sores, called apthous ulcers. They are typically on the mucosal membranes, and may be painless. They tend to show up when the disease is more active and often go away on their own. But there are many other conditions which can cause nasal ulcers, so your doctor has to look at the pattern of all your symptoms. Lupus can be extremely hard to diagnose because it can look like so many different illnesses. So doctors must look at your symptoms and lab work, and it can sometimes take a very long time to get an accurate diagnosis.
You mentioned bloodwork, but do you know what specific tests were done? Because tests for auto-immune disease are fairly specialized, they are not done as part of a routine physical unless the doctor suspects an autoimmune process. So it's a good idea to get copies of your medical records so you know exactly what tests were done. That might give you a better idea of how to proceed and what additional tests to discuss with your doctor.
The Lupus Foundation of America website, lupus.org, has some good articles about lupus and the process of testing and diagnosis. I would suggest their website as a good place to start. The website arthritis-about.com and the Arthritis Foundation website have a lot of information about non-lupus forms of arthritis. Reading up on the different forms of arthritis may help you make a closer match with your particular pattern of symptoms.
Thanks for responding and offering some information about lupus/autoimmune diseases.
What's your experience/knowledge on the rash that typically comes with lupus - can it feel like a warm flush? This seems to be a more frequent occurrence with me lately.
I managed to get the energy to go for a run and a bike ride this past weekend - now I'm paying for it. Feel like I could fall asleep in a second today, and the stiff, sore hands/feet are back!! I'm 33, but feel like I'm going on 80!! Anyone else get that effect from exercise??
Only about 50% of people with lupus have the "butterfly rash" - it usually affects the cheeks and the bridge of the nose, but not the folds of the nose. It may be photosensitive and show up or get worse after sun exposure. It can range from a light flush that looks like sunburn to a red, blistery rash, or raised patches of red skin. Sometimes it can be hard to tell apart from rosacea, and even a dermatologist may have a hard time identifying it. Like everything else with lupus, it can vary a lot from person to person. And a lot of times you can have it for days and then it disappears right before your doctor's appointment, kind of like the Chesire cat. So you might want to take a picture if it comes and goes so you can show your doc.
I'm new here too. I know exactly what you mean about the exercise! In my 20's I was very active. I was a regular at the gym, lots of outside activities, no problem. After the birth of my second child in my 30's, exercise became a nightmare. I would get so hot, flushed beet red, and the pain in my joints was more than I could bear. When I pushed myself and exercised anyway, I would hurt for days. I was not diagnosed right away, so it was years before I understood. Every 6 months or so, I would work myself back up and go at the exercise again, only as I got further along in my illness, the days of aches turned into days unable to get about of bed. When I feel up to it, I can exercise 10 minutes a day, and outside of flares, gradually working it up to an hour or so.