Lynnwood, Co-Moderator: Lupus ForumSLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, ValtrexOTC Daily: Multivitamin, Calcium, B-12, C, D; As Needed: Ibuprofen, Tylenol Sinus
Allergies: All Sulfa-based medications; Levofloxacin, Levaquin
DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions
Hi Lynn and sandspoker.
Thanks for replying.
I did test positive for systemic Lupus 14 years ago. Things settled down after a while and my doctors left or retired. When I brought up the subject with subsequent GPs over the years, I got ignored or dismissed. I am in Australia.
I learned to ignore my periodic aches and pains (some excruciating for a while) and passing tirednesses, except for a couple of times when a shoulder , and, separately, an elbow pain (two episodes) got too much. Cortisone injections fixed these nicely. My right "hip" has played up badly from time to time and can get so bad it is hard to walk and painful to sit for long, especially in cramped spaces. It is dreadful in bed.
Three liver functions have played up periodically and are doing so right now (quite high). I go periodically anaemic.I have two thyroid antibodies and the anticardiolipin antibody. I had numerous miscarriages at the 3 month mark but had four children -late (now teenagers plus 21 years).
I have been unusually tired lately, but my thyroid is functioning ok and I'm not pregnant. My thyroid only went underactive once, for a while, 17 years ago after the birth of my third child. I have also been quite stiff lately and my legs seem weaker, especially when I first get up (this has been a periodic problem). My leg weakness was really bad for a few months after the birth of my first child (now 21 years) and somewhat bad after the birth of my 2nd child, 19 years ago. After the bith of my 4th child, 15 years ago, I became incredibly stiff and weak and plaquenil helped with this. I also started having gallstone attacks and finally had my gallbladder out, which stopped the attacks.
I have a large calcium stone in the ligaments of my left shoulder; my heels and finger tips split in winter; I have lots of little red "blood" spots on my body (they came over time); I've been getting white lumps like pimples on my face; my nose makes white gunk; I've been growing lumpy skin things on my face and neck; and I have "arthritis" that comes and goes in various places but without deformity. My eyes have tended to be dry for some time now so I started getting flashes and floaters. My eyesight is worse too though it comes out the same on tests ?!
I hope this isn't confusing. Possibly I left out some things. I guess It's not all necessarily due to the same general cause.
Sorry, I forgot to say that I have so far had only one visit to the new GP, a few weeks ago,and so far he has focussed only on the hip. He has done no bloodwork yet, but I had some done a few months ago with the former GP.
The former GP was terribly reticent at sharing results but he reacted over the markedly elevated liver function tests and wanted to send me for a CT scan till I told him this had happened before so he had planned to do a repeat test about now. And he said the thyroid and most of my basic tests were ok only there was a problem with one, maybe the sedimentation rate only I can't swear to that. He wasn't a believer in autoimmune problems.
The new GP is very busy and told me to check in again with him after I saw the orthopaedic surgeon and I'll do that soon. He said he'll deal with more things then. Then I'll press him for some blood tests and a referral to a rheumatologist, at least.
Post Edited By Moderator (Lynnwood) : 5/18/2007 3:13:00 PM (GMT-6)
Thank you everyone for your kind help. I'm sorry I couldn't get back earlier.
Yes, I will definitely be seeing a rheumatologist and as soon as I can.
I was diagnosed with lupus about 14 years ago. At that stage some relevant blood tests re lupus gave a strong result and I was told at the time I had lupus. The strange thing is that, after these doctors retired and I tried to replace them with others who also understood and offered help (eg, I got given plaquenil originally and it unstiffened me like a charm), I found GPs who either just wouldn't even think about this stuff (how well I got to know the blank GP look as the shutters came down) or made sarcastic remarks such as it is pointless to test for this stuff as positive results come up with people with no problems. I just kinda got my belief in lupus, etc and relevant motivation snuffed out and have been lurching on from symptom to symptom over the years and relying on pain killers and sensible self-managment. But I've reached the end of that road now as my quality of life has sunk too low.
Thank you for that link about pseudogout, sandspoker. It was pretty spot-on except for the bit about joint damage - well, going by what the orthopaedic surgeon said on Friday. I do have damage all over the place but he wasn't concerned. I did wonder if he was a bit too dismissive about this as I have had X-rays of this damage at various points ( upper and lower back, hip, hand) looked at before at various times and it was referred to as osteoarthritis. So something doesn't quite gell here.
When I had really bad pain in my shoulder and later in my elbow (twice), a cortisone injection banished the pain really quickly. And I had been having the awful shoulder pain (with associated problems in sleeping) for a few months and the GP at the time gave me three goes at antibiotics (which improved nothing and ended up giving me a rash) and then tried to get me to go to a very expensive quack who was obviouslt falling off the edge of effective medicine. And I'm not knocking alternative approaches; I rang up and checked costs and what was offered. Both were unreal and you'd have to be either rich or at your wits end to go there. The first proposed "treatment" was non-rebatable as it did not come under a professional category. It consisted of a drop of my blood being shwn up on a screen and analysed to me by one of the doctor's receptionists. The way the procedure was described it sounded like a Rorschack inkblot test for the blood. I was not convinced this would help my excruciatingly painful shoulder so i gave it a miss. It would have cost hundreds of dollars anyway whereas one doctor visit plus a cortisone injection did the trick.
So I went to my now previous GP, who fortunately gave me cortisone injections till we got to my hip episode and then he just minimized the whole thing and said things such as I should have seen how he could hardly walk 20 years ago. Maybe he was a poor communicator. He was also a GP who didn't explain or share information. He didn't even like me to talk much at all. I kept feeling he was ridiculing me. I am glad I've sacked him. Hopefully the new one will be better. He seems promising so far, even if he was wrong about my probably needing surgery. As long as he keeps trying, maybe I'll get somewhere in the end.
Talking about this now, I'm wondering if that orthopaedic surgeon was right about its being my spine that is causing my hip pain. It feels like my hip ! When I walk I don't walk properly and I feel there is a sore spot right in my hip and it is so painful. When I lie in bed it is worse when I lie on that hip, just as it was bad when I lay on the painful shoulder or elbow, or years ago (14) on my back (I had a bad upper back pain episode and it was much worse in bed - I couldn't lie down for more than 5 hours at a stretch) .
And I told the orthopaedic surgeon all that. And I told him I didn't think it was sciatica as I had that after the birth of my first two children and it was quite different. But he later said that bit really definitely about the problem being caused by inflammation in my spine. Maybe he got it wrong? He was looking bored when I tried to explain and dialigue with him. I think I was making sense and was being succinct and clear. I wasn't there that long. But I was charged a lot for the visit !!!