Hi there, I know I am not the only one to be knocked for six every month when our hormones kick in. I have tried looking back for an older post but didn't manage to find one.
I am 41, have been sterilised and also have APS. Every month a few days before my period starts I go down hill rapidly with increased joint pain and tiredness etc, then I end up flat out for 3 or 4 days while it takes me another 3 or 4 days to pick up again.
ladies what is the solution???? I obviously can't take the pill but I think I (and my partner) are getting to the end of our tether as each month the flare seems to be getting worse.
I know i need to speak to the docs (about as much use as a chocolate fire guard) they tell me to speak to the rheumy but my 3 monthly app for one reason or another will actually be 9 months by the time i get there (unless it gets moved again) so i want to go forearmed with ideas so I don't get phobbed off before my foot is even through the door.
I would love to know what you other ladies have tried to overcome / ease the problem
many thanks
Nic
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tiredmum
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I have noticed I have been the same in the last 2 years (despite being on the mini pill which I have been 4 almost 15 years anyway, so I can confirm that aint likely 2 help anyway!).
I don't go in2 flare but joint, muscle, tendon, ligament, scar tissue playing up, stomach pains, fatigue, headaches, vomiting etc all get ten times worse & floor me. Not unusual 4 me 2 spend a few days confined 2 bed round about the time of my period, despite never having suffered with them b4 in my life. Bloody hormones, as if lupus aint bad enough as it is lol!
Good question.....me too as well as the whole not sleeping for a few nights before, followed by all the usual fatigue, joint pain, stiffness. Funny enoughI thought a few days ago I must mention this to rheumy too. Trouble is I forget unless I write it down before lol. It must be a hormone thing hence I will be so glad when the menopause occurs (you would think it would as Im almost 50 in a few weeks) and they are still going strong.....argh!!
There was a great article on the subject of hormones & lupus in the News & Views Mag a few years back. There must be some way of accessing it through lupus UK. Prof Graham Hughes as also written about it.
This was a major problem for me too. It's now under control with Cerazette progesterone only pill. But I haven't got APS.
You might get some help from the lupus nurse on line on the St Thomas' Lupus Trust website. Or even better, request a referral to St Thomas' lupus unit from your GP.
My Lupus has flared now I am approaching the menopause. I have a Mirena coil that is progesterone only but obviously just released into the uterus not systemic
Yes, I have the same problem, I was put on the mini pill permanently in an attempt to stop my periods, however the damned persistant things kept coming as did the flare ups. I am 48 so am probably approaching the menopause and am hoping that then things will improve. However, it is worth bringing it up with your Consultant as it is recognised and maybe there is something they could suggest relevant to your circumstances. Good luck!
I posted about this a couple of months ago now. I certainly think there is a link. I have been getting period pains that get worse each month after having not had them for years!! I never mentioned it to rheumie as had loads of other things to say, but I am going to mention it nxlext time ( though that is not until july). I wish I had a more helpful answer but maybe if you look back at my posts you might find some help there.xxx
I never put 2 and 2 together until i got my diagnosis, but yes, time of the month I wanted to hibernate, along with the usual evil PMT mode, I would ache all over and be more tired than usual, the rash would be aggressive on my face etc etc ... I had a mirena coil fitted last march, I had it fitted as I had horrifically heavy periods (menorrhagia - rhumie thinks it is connected to lupus, not sure if anyone else has experience this) and I couldn't go on normal pill as I had a blood clot with my 2nd son (I don't have APS, my bloods keep coming back clear for this, even though my blood is like soup) and I just don't get on with the mini pill. So Mirena seemed the best option, because hormone is released into uterus not systemic so therefore I was ok with blood clot risk. Its the best thing (apart from starting on Azathioprin) that I ever did! The first 3 months were odd, I had 10 day long periods, but would bleed only once each day, and I would get odd flutttering feelings in my tummy, the sort you get when you are early preggers and just start to feel the baby move, but I was'tt preggers. The 4th month my periods stopped, so did the aches, pains, migraines, rash flare, spots etc etc ...
I have had it almost a year now, I still get a bit emotional at the time of the month, so my boys nd husband avoid me, I feel really angry as well, always the last 2/3 days of the month, but I don't get anything else. Also the cyst on my ovary has gone, so i no longer feel the egg release.
I do not know if it will work for you, but this is my personal experience, I keep saying I feel the best I have felt in years
If you had asked me within the first 3-4 months I would have said it was crap! .. because I wasn't getting on with it, but I never got it taken out as I was so poorly with a huge flare and fighting my MFU consultant to get a Rhumie consultant, so I just left it in, and thought I would deal with it after everything else. And before I knew it, it was all fine, had settled down, and my periods had stopped and so had all the other bits and bobs that went with it. I have been on Aza for 4 months now and I feel great
I think I Might have to try the coil now! My periods are so painful I throw up and can't move, they aren't as Easy to judge now either I could have 3 weeks I could have 5 without one. THink ill try the coil.
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