First I want to start off with saying hello. I'm new to this board. I came here, because I really don't know what to do, and I am hoping to find out some information.
Anyhow, Lupus we found is in my family. My Aunt has it, and my cousin died from Kidney complications at the age of 26 due to Lupus. Ok, here's how my symptoms started out. I was a young girl when I was experiencing pain in my knees and other joints, although I had a few broken arms and legs when growing up. I complained to my parents about the pain, and they said it was just growing pains. Well the pain never went away and I'm 39. I now have other things going on as an adult. It seems much more since I had a miscarriage at 37 and then a healthy baby at 38. I have been waking up with pain in my hands, with a lot of stiffness. I suffer with nausia usually in the evening, sometimes I also have complete exhaustion, and I have missed periods. Although I had missed periods when I was a teenager too, but now I can go as long as 6 to 8 months without one. It's amazing I got pregnant in the first place. Anyhow, I have also been diagnosed with high blood pressure, having a baby saved my life, as it let the doctors know I needed to be on blood pressure meds the rest of my life. My other symptoms have been mouth ulcers I get every so many months, plus I seem to get strange skin rashes that appear, and a couple days later are gone. I have had hives once in a great while. Oh, and almost forgot the joint pain I get comes at anytime, I don't have to be in damp weather to get it. I have gotten bad pain on dry sunny days. Now my most recent issue is that I have started getting blisters on my finger tips for no reason, and I get a lot of sinus and ear infections too. Sorry if this is a little lengthy, but it's driving me crazy, when new things start popping up. I thought aside from the pain in the joints and stuff I was pretty healthy, however this last year I ended up with Pneumonia.
I don't know much about Lupus, but my symptoms come and go. Some weeks I'm fine, and feel great, so that is one reason why I haven't gone to the doctor. Plus I don't have insurance. I am afraid if I go as self pay the doctor might treat me, (as it's happened before), like I'm just a hypochondriac nut! Meanwhile these symptoms continue.
Ps. I forgot to add I had Gestational diabetes along with Preaclampsia when I had my baby. Diabetes runs in my family not sure if this could play a part in anything. I know I don't have Diabetes now because my blood sugar was normal after I had the baby. Just thought I'd mention it though. Again sorry for the lengthy post, hope someone can give me a little more insight about Lupus.
Mojosfire, hi & welcome! Obviously I'm ONLY a patient, but several of your points rang bells with me...
Have you read the three "sticky posts" (informational posts) at the top of the thread list? One lists the ACR criteria for diagnosing & clasifying systemic lupus (SLE). Generally you must meet 4 (or more) of the 11, not necessarily all at once; so visualize checking them off in indelible ink. You'll find oral ulcerations listed. Also skin rashes, of two pretty *specific* kinds. What do your rashes look & act like? Where do they appear? Is sun a trigger? Do they itch? Scar? Depigment?
Another "sticky" lists "alternative criteria", things that are seen earlier on in people who later go onto to develop lupus. "Growing pains" is one. (Ditto with me: at age 13 I spent a miserable year seeing doctors and being hospitalized with low-grade fever, elevated sed rate, WBC way off, etc.)
Another "sticky" discusses antiphospholipid syndrome (APS), a blood clotting disorder that can exist with lupus---or can be seen "standalone". It can cause strokes, migraines, miscarriages, etc.
Do you have a library closeby? There are several authors whose hardcovers were written for patients & cover all aspects of lupus (symptoms, tests, differential diagnoses, other conditions more common in lupus patients, treatments, etc.) One is Dr. Daniel Wallace; another is Dr. Robert Lahita.
In your shoes I'd want to do a little reading, then try to see a rheumatologist (the specialists for lupus, similar conditions, many kinds of arthritis, etc.) Maybe your local hospital could offer some pointers to rheumies in your area who would agree to work with you, knowing that you don't have insurance.
I hope you *don't* let previous bad appointments stop you from trying. I bet people here could write VOLUMES about bad appointments, terrible comments, names we've been called, etc. () I only recently found some (weird ) humor in some of my own misbegotten medical endeavors.
And I hope something above gives you some leads to follow & that you keep posting here. Meanwhile, sending my best wishes to you. Sincerely, Vee
Last edited by VeeJ; 11-04-2008 at 11:06 AM.
Reason: added phrase
Thank you so much for replying. I did read the sticky notes. That's what's weird, is because it seems like I have quite a few of the symptoms. I am going to have to do that with going to the hospital and see who they could recommend that might be able to work with my financial situation. The other week I had a rash appear just below my buttox area on my leg. It was raised bumps. It just appeared out of nowhere and after a couple of days or so, it dissappeared as mysteriously as it came. I do get rashes sometimes from the sun on my chest. In fact I used to have a smooth chest at one time, but many years ago when I was out in the sun I got these like raised bumps all over it, some of them look bright red in color while others are much more pale. None the less, it made me self conscious, and I don't feel comfortable about wearing v neck shirts, because I don't feel very attractive with the way it looks. It doesn't look real bad, but I'm just self conscious about it, because I remember how I used to look. I get sometimes red blotchy patches too, when I have been in the sun. I don't know if any of that is what the sticky notes meant or not, but thought I would mention it.
Mojo its interesting you mention the rash when you are in the sun. I too question if I have lupus. I never thought about it till I read your post, however, often when I am in the sun too much I get little itchy bumps like a heat rash......Wonder if it could be related
Hmm, I don't know, as I don't know a lot about Lupus. I just know I get blotchy and raised bumps. When I'm in the sun too long, I also end up not feeling well at later on. I don't know though if that could be a common thing with most people.
The Following User Says Thank You to Mojosfire For This Useful Post:
Mojosfire, I was told that a rash can be diagnosed as lupus-specific *only* via skin biopsy & (usually) additional immunofluorescent stain tests.
In his hardcover, Dr. Daniel Wallace discusses various lupus-specific rashes, starting with the most famous, the malar (butterfly-shaped, on face). He then describes other lupus rashes, such as
* subacute cutaneous annular (targetlike; deosn't scar/depigment)
* subacute cutaneous papulosquamous (looks somewhat like psoriasis but isn't; doesn't scar/depigment)
* discoid (does scar &/or depigment)
* tumid (I *think* this one likes the V-neck area & has pretty solid coloring)
* bullous (raised fluid-filled blisters)
In other words, in lupus, not just "any rash" is meaningful---rather, one or more of these *lupus-specific* rashes, as confirmed by biopsy & immunofluorescent stain tests.
I've read that most lupus rashes DO NOT itch. I think one exception is lupus urticaria (hives).
What do your "bumps" look like? I ask because for the first 4 years of rashes, mine looked like red raised bumps on upper arms & back, like big juicy mosquito bites but NOT itchy. But then my "bumps" started expanding into circles that looked like targets. The circles faded after some weeks, I'd be rash-free for maybe a month, then I'd get brand-new circles. Don't laugh, but it took me a VERY LONG TIME to realize my rashes were triggered by sun, because early on it took weeks after sun for lesions to appear. But by the end of my journey, I was getting new lesions in less than a day after even brief sun exposure.
My Dx was subacute cutaneous (SCLE) annular form, bloodwork positive for anti-Ro. Plaquenil has helped me a lot. Sun avoidance is a "must" for me.
Hope something in this is useful to you. Bye for now, Vee
Hello agian. The raised bumps that I have but not like covered just here and there, look like pin pricks of blood. I have had them for a little while now. The other type is just blotches I get from being out in the sun. My rashes don't itch either. The one I had gotten on the back of my leg near my buttox area was raised bumps. I wanna say like hives, that didn't itch either. I guess I will have to check into things with a doctor that can work with me on a payment plan, or reduced fees.