For the ladies out there--
Have you noticed that the certain symptoms get worse right before your period? About 4-5 days before, I get a lot of joint pain, am VERY susceptible to mouth sores, and the FATIGUE...it's terrible.
In a word, YEP. I usually have no joint pain to speak of, but the days before my period, my bones get achy. I also get mouth sores and strange gastrointestinal symptoms. I have thought all my life that susceptible to all kinds of ailments right before my period, and I am only more sure of that now that I have lupus.
Dear MLWC, I experienced most of that & some other things you didn't mention for many years. I tried to do self-help things, like cut down on caffeine, take ibuprofen as soon as I knew period was closeby, etc. Can't say I ever solved my problem though. Good luck! Vee
thanks for the input!
I feel a little better knowing that other people experience this. The only thing with me is that I have not been officially diagnosed with lupus--only Raynaud's and Hashimoto's autoimmune thyroiditis. However, my endocrinologist listened to some of the complaints I'd been having (even after my thyroid treatment started) and he thinks if I'm still having some problems, it could be a 'connective tissue' disease. I go to see him this week, so you can bet I'm going to mention this stuff.
I have been trying to keep a journal of symptoms and when theyhappen, and it seems they're worse during my PMS week. That's part of the reason I asked the question to you guys--because you know, after a while, you begin to think you're just crazy! (happened with my thyroid, too)
So, I'd like to ask another question-- is it possible to have lupus without having a malar rash? Though I have red areas on either side of my nose, I don't know if it could be called the 'rash'. (it seems I have a lot of the other symptoms, including Raynaud's...)
My period makes my joint and nerve pain go through the roof! It makes me super tired and majorly depressed....the cramps in addition to the other pain cause my whole body to go into spasm- it's not a pleasant experience.
I'm so glad that someone asked this question. My rheumetologist is "holding off" on the diagnosis of lupus so I'm MCTD but symptoms match everything I read on lupus. I get sooooo sick that I am guaranteed at least a day spent in bed or lying on the bathroom floor. Pain is worse, weakness, nausea is unbelievable and I sometimes shake almost as if I'm having a seizure. I thought it was crazy that a "natural" thing could be causing so much misery until I found out that it was associated with the "disease." However this is the first time I've heard it directly from other women and not just out of an article! Thanks for starting this thread.
oh my goodness! How grateful I am to you ladies!! FINALLY someone who is going through what I go through...It's the strangest thing-those pre-menstrual flares. I assumed it was an estrogen thing also...Which takes me to my next major question....I finally got the okay from my rheumotologist to start trying to get pregnant. My husband and I are thrilled. But I'm wondering....Dosen't your body get an overflow of estrogen when you're pregnant? And if that's the case, if my lupus flares just from PMS due to estrogen overflow, is this any indication of how my pregnancy would be? In other words, if my body can't handle a little pms, how is it gonna handle a kid?! This is my biggest worry...HELP!
Man, I am so with you on this! It freaks me out when I spend much time thinking about the huge change my body will go through hormonally if I get pregnant, so I try not to dwell on it for long. Yep, it is definitely scary to think of all the changes we go through everyday with lupus and then to add a preganancy to that. BUT... the birth of a child is one of the few things in this life that is worth some reasonable amount of risk. Only thing is, everybody has a different definition of "reasonable", and it must be an indiviidual choice. I just went off my period yesterday, and I had quite a few skin symptoms and joint aches this month, relatively speaking. I just pray to God, take my maintenance dose of prednisone and plaquenil, and hope that these are just blips and nothing major is happening internally. I am on a three month checkup schedule now, did monthly checkups the first year, but all is well with my blood and urine. Due for another checkup in a month or so. Wishing all of you good health in the new year!
My lupus flares monthly just like you're talking about. The mouth sores (which have gotten better with plaquenil, by the way), the joint pain, and the fatigue are all more of a problem the week before my period. I've wondered about this same thing...thanks for posting the question!
Its a weird club we belong to, periods would almost devastate me. With getting ill before the period, long, and painful cycles, then to almost be anemic and lethargic feeling for the week following, Oh and then the dread that it would begin the cycle again very shortly. I took birth control to regulate, but it made me even sicker. Is anyone especially allergic to latex in a flare? Enquiring minds would like to know. ANd does anyone have cervical polyps?
My doc says that the body tries to equalize itself during pregnancy, but the real worry comes a few weeks after birth when we (lupus ppl) tend to flare really hard. I looked back at the birth of my other 3 kids, and I found that I had been so sick for longer after giving birth. Im flaring now at 29 weeks, not so bad, they put me on prednisone taper to ease me through it, nerve-wracking but worth it. I was so happy when I was pregnant because, my period was gone, I had lots of joint pain, but it was nothing compared to what I went through with my period.
Hi i would like to add,Yes i use to have very bad period pains and was very ill,I don't know if it was related to this illness as proff mitchel at preston hospital UKwas treating me for M.S have only just been told they think its systemic lupus with sjogrens.Any way i had a hysterectomy three year ago now it was the best thing i had ever done.As i wasn't haveing anymore children anyway i have three,and went through a realy bad time with my last one 10wk early due to water infection,and me only haveing one kidney.she is 13 now and that is when i started being ill,My eldest daughter has realy bad periods and she has raynauds since 13 year old also vitamind b deficancey which doctors think is related to my autoimmune disease she is 20 now.She as contraception injection every three months so now very rearly has periods any more it helps her,my youngest daughter as now started with raynauds she also has very bad periods she as very heavey ones that on some occasions she as to change her self every hour.she also has to deal with being epileptic.I feel bad thinkig i have given my children some bad disease.
Question for you - help - The issue I'm having is while on 50-60mg of Prednisone I had zero periods. Then we tapered down to 45 mg. which I've been on for a few weeks. Since starting the taper I'm getting this darn visitor about every 12 days (4x in 7wks) & they are very long in duration. They are very abnormal in every way for me as well.
The hormonal aspect of them also are really killing me (PMS & during) & it puts me through a emotional roller coaster - not to mention the the severely increased cravings. And it's so hard on everyone around me - I'm so darn irritable. Not to mention I think my body is going to revolt from adding this to my Lupus situation & symptoms.
Has this happened to anyone else? If so what made it stop for you?
ditto on all that. And my period which used to be clockwork has gotten really irregular. Last month I skipped it and this month I got another round 10 days after I finished the last. Is this affected by autoimmunes. I find myself really hormonal lately.