Any mamas with lupus?

[branditopolis]

I'm 26 years old and I had one pulmonary embolism at 19, another the week before DS was born (while on heparin!) and DVT earlier in pregnancy.  My diagnosis was Lupus Anticoagulant Disorder.  I was told this was inaccurately named as it is NOT lupus, but almost half of the people with lupus have it.  I was also told it's very common, just to a lesser degree.  I've seen 3 or 4 PCPs in the last year (my insurance keeps changing, long story) and every one looked at my chart and said something to the effect of, "so you have lupus, eh?"  I'm always quick to correct them, but now I'm not so sure they aren't right.  I've always gotten joint pain in my knees and elbow and one of my ankles, but mildly and it would come and go.  Mostly I used to notice my feet would get stiff if I sat for a while and stay stiff for a long time.  Now the pain in my knee is intense, and my ankles, and my left elbow, right wrist and right hand.  My ankles have been swollen so big they have creases, but when it happened before (again, to a lesser degree) i associated it with pregnancy or too much sodium.  I get headaches in different parts of my head, I'm tired, and I'm starting to notice a trend in these aches and the rash I always assumed was sensitive skin or an allergy to this or that detergent.  I got complete labs done last week and they've come in but of course I don't know how to read them.  I see the dr tomorrow and I'm dreading what she might say. 

I was just wondering... how do moms who have lupus feel about having the disease?  How do you deal with raising a child when you're so physically drained of energy you don't want to get up?  And lastly, what are other symptoms that arent as obvious? I don't even know how a doctor comes to a lupus diagnosis.  Can someone talk about their experience and the effects lupus has had on her life?

Edited by branditopolis - 1/17/12 at 10:32am

[heatherdeg]

I have known four people with lupus.  Two of them found incredible relief by trying a completely raw foods diet (the other two stuck with medication and honestly, they don't do nearly as well).  The two I know that did raw foods noted that eating like that was ROUGH and so they would intermittently stop.  I'm coaching one of them and we're trying to get her to 60% raw so as not to overstimulate her immune system.

I also know that bright red cheeks come with it, but I'm wondering if that is more from the steroids they often put you on to treat/control it.

I know this isn't what you were looking for, but I hated to see no replies and if nothing else--it bumps the thread.  :(  Hoping you come back and let us know what the test results were.

[illiterati]

Just wanted to pop in here and offer hugs. And I hope your test results helped clarify something for you, and some course of action. 

The two personal experiences wit autoimmune disorders that I can share are those of my mom and husband. My mom he systemic lupus that I believe went quite some time before being diagnosed or treated. And when she was treated I believe it was with conventional hard hitting interventions, and nothing holistic as far as I know. So no diet, excercise, herbal anything. Unfortunately she died following a kidney transplant. 

Now in my husband's case he has a type of arthritis similar to rheumatoid arthritis, but his immune system attacks the spine, among other body parts. He had his most accrue and debilitating flare about 2 years ago partly in reaction to a horrible sinus infection. His physical symptoms sounded similar to yours (pain, fatigue, he was also prrty depressed and had little appetite). Rheumatologists have recommended some pretty scary meds but he's been trying to stabalize things naturally.  Overall he's steadily made improvements. The basics of his regimen are cutting out gluten (this one was HUGE), he does physical therapy excercises every night, other things are regular supplements including fermented cod liver oil, and some other things. But for sure the gluten and the 15 minutes of nightly excercising are critical to keep him from having a flare (although he tells me us still constantly in some level of pain).  One other, um... medication that some may use is medicinal marijuana. It can be taken in tincture form and has really powerful antiInflmmtory properties. Some people...might only take it for an acute flare because well it can cloud thinking you know ;)

Sorry this has been more advice than commiseration. But I really wanted to share some of the things that have worked with my husbands autoimmune issue, even if it is a different disease. Good luck with everything and I hope you find some healing. 

[branditopolis]

Thanks so much!  When I went to see my dr. about my results I was really confused.  Again, I can't get a straight answer about whether or not I have SLE or Lupus Anticoagulant.  She rushed through the results, mostly talking about my PTT and INR because my blood was too thin and I had to change my dosage of coumadin.  When i asked about the rest of the results she scanned the page and said, "oh your kidneys seem to be functioning at a ... you know, ahhh... I think you need to drink more water is all."  So I don't know what that meant aside from that I'm probably a little dehydrated.  Needless to say, I'm seeing a new dr. next week.

Thanks for the advice.
@heather raw foods sounds tough!  I would like to look into it though, I don't know much about it.
 

@illiterati  How does gluten affect your body?  like I said, I have like, zero knowledge about how food affects a person's body.  Growing up, my family ate TERRIBLY, and I've just recently started trying to get myself on a more healthier tract.  I could be open to trying both of these things if either of them can lessen the pain in my joints.

[K1329]

Parenting with a chronic condition is difficult at best. It requires a lot of adjusting expectations - you simply won't be able to accomplish everything a healthy parent can. Accepting that fact is hard! But, parenting with a chronic condition is also absolutely doable. It just requires a little more planning. You may decide to rest the day before a big outing, to save your energy, for example. Or, conversely, plan an easy day after a busy one to recover. Hang in there & keep us posted.

[heatherdeg]

@branditopolis-- You know, raw foods IS kind of tough.  In fact, my own family tried to move to make more than half of our intake raw and found that there seriously was NO literature to guide you into it.  I'm trying to write some.  I had high hopes for one book, but it was overwhelming because the beginning of it was really about the countless tools/appliances you could be using.  Oy...

So let me give you some tips:

* Start by incorporating something raw into each meal.  Be it a side dish, a piece of fruit, whatever.  Even if you just shoot to transition a portion of one meal/day--maybe tackle dinner and look for a way to replace one part of your plate with something raw every day.  Then after 2 weeks, tackle another part of your dinner plate.  Or tackle part of your lunch or breakfast.  If you can get 51% or more of each meal to be raw, you significantly reduce the body's immune response.

* Spend some time in the bookstore or library reading through some of the raw cookbooks rather than just buying them.  See what they have that sounds even remotely interesting to you.

* Find a good produce coop or CSA (if you're in the warmer part of the country, I know they're often year-round) for access to lots of organic produce cheaper than hitting an organic grocery.

* If you have a blender, use it to make great smoothies.  Juicers are nice (I have one) but there's lots of good fiber that gets left out when juicing.

* Be open minded.  :)

Hope this helps!  It doesn't have to be all at once.  Ease into it.  Hopefully in a few weeks or months, you'll have enough raw in your diet to be feeling significantly better even if the lupus is not reversed; and maybe it will encourage you to really drive it home and be completely raw for 6-ish weeks to see if it can really help put it in remission.

[valperea]

I too was diagnosed with the lupus anticoagulant, and have not been given a straight answer if I actually have lupus or not. I had a dvt early in pregnancy as well and am taking lovenox shots for a while twice a day. I get the very same symptoms but my whole body is affectedby this. Do you know if we still get flares even if it's just the anticoagulant we have? I have never felt this bad ever I can't even get out of beds sometimes. Does pregnancy make the symptoms worse? Dr's just chalk it up to being pregnant. I thought I was the only woman that felt helpless about this situation. Please let me know what happens at your doctors as I can not get anywhere with mine.
Good luck to you!

[ASusan]

I had a lupus dx several years ago. I was tired, in pain every morning. When I left my job (to move to another state, not because of lupus), I had a stack of notes that the secretary had posted on my door about how I would be in late today because it was just so hard and painful to get up and get going in the morning. I had costochondroitis - pain in my  upper chest and rib cage. I had pain in my kidneys (but every test they did said they were functioning fine & no reason for the pain). Aleve didn't take care of the pain. I took plaquenil eventually, which is the typical med prescribed for lupus. It helped with most of the pain, but not the kidney pain. It also gave me (permanent) ringing in my ears.

I went to a TCM provider for weekly acupuncture and chinese herbs. Within 6 months of treatment, my blood no longer tested positive for lupus. I tapered off the plaquenil. This was 6 years ago. I have had slight autoimmune tendencies since then, but doing gluten-free (and dairy and egg and nut free) probably helped with some of the inflammation.