Hi, I'm a newbie here and have some questions about Lupus which I'd be most grateful for any info. I've been reading a bit on various sites. I've had chronic fatigue for years but just put it down to being a busy single mum of three,with an active lifestyle, I use a chainsaw, chop wood, do heavy gardening work, car mechanics,diy etc. Since Christmas I felt more tired than usual enough to go get blood tests done, my energy levels dropped big time and I could hardly keep my eyes open. I feel odd. My vision feels odd but eyetest was clear. Everything came back fine, kidneys, liver etc but I got an ANA 1:160 for lupus, pattern homogenous, a fairly low count I know. As I started to read about the symptoms and the disease I realised I've had many for years, chronic fatigue, severe joint pain mostly my right knee, walked with a limp when that flares up but it got a lot better without coffee, sugar, but still flares, my joints make a lot of noise all the time when I bend them. I've always been very sensitive to shop lights and sunshine and wear sunglasses a lot, migraines, very headachy recently but no rashes that I think are out of the usual. When pregnant with my last 2 babies my legs were badly affected and I could hardly walk, one was a premature birth, my back gave in 4 years ago, my spine just like collapsed from the neck down and I couldnt walk without a stick and very slow and painful for 6 weeks, I put that down to back probs which are very common. I've been referred to the rheumatologist which will take a while and my fatigue is not improving making it difficult to get work done, motivation is low. My half-sister, who I only got to meet once due to family breakdown, had lupus and unfortunately at 38 lost her battle and her kidneys broke down, she had been on dialysis for years. I think I need to get my daughters tested also and am just totally confused and worried. I'm researching as much as I can but find the most informative info is from people who are actually going through it themselves as they've 'been there'. As I have read an ANA is no diagnosis and the further tests will not be a diagnosis probably unless sufficient for medical protocol as I've seen folk on here with high positive tests at the rheumatologist and still don't get a diagnosis for anything and it could take years. What should I be looking for from the rheumie? I read about the further blood tests, xrays, urinalysis etc, are most rheumie's dismissive of symptoms and stuff?I'm going to do my own urinalysis in meantime, what can I do about the chronic fatigue? I have to get veg planted and have a part-time too and I fell asleep at work last week feeling naseous and dizzy, I'm 41. Love and healing to you all, thanks.
GreatestHoax, hi & a hearty welcome. From your post, you've already scouted around for info. I found the most comprehensive info was in library books, written for patients by famous rheumies. In the UK, Dr. Graham Hughes is a top rheumie/author. Maybe you can find US authors: Dr. Daniel Wallace &/or Dr. Robert Lahita.
I found particularly helpful their discussions on
1. how lupus is differentiated from other autoimmune & non-autoimmune conditions featuring positive ANA;
2. what add'l tests beyond ANA help nail down one Dx vs. another;
3. how lupus is more properly viewed as having "subsets", meaning people can have lupus without full-blown acute SYSTEMIC problems. (I stayed milder; getting answers proved very difficult.)
A good rheumie takes your *lifelong* medical history, because understanding that history is esp. critical in conditions that flare and recede, &/or evolve slowly; plus your FAMILY history, as you mentioned. Rechecks *basic* bloodwork & urinalysis (for example, anemia is common in various chronic inflammatory conditions). Looks at everything in the ballpark; for example, migraines are seen in antiphospholipid syndrome, which can accompany lupus.
I once read that Dx'ing milder lupus is very challenging. Certain things scream "It's lupus!" to many doctors, e.g., high-positive ANA, butterfly rash, anti-ds-DNA, anti-Sm, and kidney involvement. Yet people can indeed have some type/degree of lupus without those.
You mentioned rashes that you think aren't out of the range of "the usual". I'm not sure what you mean...? Rashes can be helpful to Dx, IF proven lupus-specific by biopsy, stain tests, etc.
I hope you post more when you can. Hang in there! Sincerely, Vee
Last edited by VeeJ; 03-27-2009 at 05:51 AM.
Thanks for replying Vee, your information is very useful indeed, I have got to read those books and will try library or buy one online. I'm very grateful you have enlightened me to the fact that you can have a milder form of lupus as I had been wondering that. I don't get rashes at all but get itchy red blotches on forehead, arms but they really aren't anything much at all, I put them down to just irritated skin. I'll have to do a lot more reading before I get to rheumie, I get that it's hard to diagnose and at least I'm starting to think about my health which has been going down for years, I'd love to have less joint and bone pain so at least hopefully I may get some advice if not answers. For me the UV sensitivity connection was a revelation, it blinds me and I get headaches that last many hours after but mostly from the shop lights. I'm sorry you are suffering with lupus, it seems so exhausting from what I've read I hope you are having a better day, this site is amazing, thanks so much again, Mary.
GreatestHoax, there are numerous conditions with symptoms that overlap. I read there are more than 100 kinds of arthritis alone (surprising, huh?). I had a distant cousin with a condition called "psoriatic arthritis". (With the RA a childhood friend has & lupus, that exhausts my store of "knowledge".)
I think lupus rashes "generally" don't itch, which probably means they sometimes do...? With all you described, I hope you see a rheumatologist soon, as that sure sounds like the most logical place to start. Let us know how it goes. Best wishes, Vee
hi ... hope you are making progess no matter how slow ... just being dx can sometimes give you hope as you know which way is forward again ...
PS: don't push yourself too hard ... take it slower if you need to ...
i have adopted a policy of ... if i am unable to do it today, maybe tomorrow if not then tough ... but i am naughty and have not stuck to my treatment plan ... when the treatment starts working you will have the 'back to normal' days again!
Last edited by Angel MJ; 04-20-2009 at 11:45 AM.
Reason: revised message