Horrendous premenstrual flares anyone?

[Asarahjohnson]

I have a diagnosis of undifferentiated connective tissue disease - likely SLE. Generally my symptoms of joint pain, fatigue, mouth ulcers are so much better on a strict gluten free, dairy free,largely organic vegetarian diet with a miriad of supplements. BUT premenstrually it is awful. I get the headache (unrelieved by any analgesic) fatigue and sleeplessness I used to have all the time. This time the headache was so bad. I should b grateful as all this used to last several weeks and this time it was only 3 days. But 3 days when I could do nothing else but take to my bed.

Sorry just needed to vent and family don't get it.

[Barnclown]

Hello asara. This is really tough stuff you're describing. And I can v much relate to it because I had similar stuff until menopause (saying that, my migraines started in childhood, became worse during my years with periods, and continue since my relatively early menopause). Am 62 now. My lupus was infant onset, but prescription systemic treatment on a daily basis only began 4 years ago....fortunately for me, I'm mainly responding extremely well to treatment.

If allowed to get going, my migraines are typically horrific: darkened silent room perfectly still lying down for days stuff while feeling nauseous etc. My period pain syndrome was widespread & multisystem....I called it volcanic.

For what it's worth: In my late 20s a v good GP gave me the v powerful NSAID mefenamic acid 500mg to take at the first sign of premenstrual flaring. It helped me hugely with all my multisystem symptoms especially the spasms, nausea & migraine. But the key was to take it the minute I noticed even a hint of the pain syndrome coming on. No other NSAID, either OTC or prescription, helps me at all in any way for anything (I have other chronic pain syndromes, for which medics have prescribed NSAIDs & opiate analgesics)... but mefenamic does. It isn't recommended for sle patients, but my medics prescribe it because nothing else helps me so effectively. They have me take it on a full stomach with oesomeprazole. of course, I'm not on it all the time: just as & when. Have you tried mefenamic acid 500mg or heard of it (aka ponstan forte)? If not, perhaps worth discussing a trial with your gp

Like you, I've spent years conscientiously doing all the recommended lifestyle management inc diet & supplements. etc. 4 years ago when I got onto daily systemic lupus meds my tendency to the migraines continued... although they are slightly less frequent...and i continue to find mefenamic v reliable at stopping migraines in their tracks

wishing you all the best with solving this. Hope you'll keep us posted

🍀🌻

[Asarahjohnson in reply to Barnclown]

Thanks. Sorry for the rant. So glad there is this forum to vent now again when I need it!

[Barnclown in reply to Asarahjohnson]

You bet! And you're v welcome! Hope you're managing ok...

Having no one to vent to when I was going through all that back in the computer Stone Age was miserable....I was surrounded by men at work, was too busy trying to hold down my job with unrecognised lupus and out of touch re female intimates... I thought all other women were suffering the same symptoms and I was just a wimp. Now I know I was v unusual. My medics think all that time I had active endometriosis complicating the period stuff. Have you been looked at for endo?

[Pumpkin72]

I have recently been diagnosed with "lupus spectrum" (think this is my rheum's terminology for UCTD) and have been prescribed hydroxychloroquine. I have noticed a worsening of my symptoms pre menstrually and which come with headache. Just waiting to see if the drugs help this month or next once they kick in.

[MrsMouseSJ]

Yes, I get a marked exacerbation of symptoms and general malaise in the run-up to my period. I find rest helps. And agree with Barnclown. Mefenamic acid is good - but you must protect your stomach if you take it; I take 20mg Omeprazole per day, at least, on the days I am using it.

[johare]

Hi I am definitely worse in all areas just before a period. Migraines despite topiramate, joint pain, and stiffer than usual, etc etc. Hormones are a pain but necessary. I'm 52 now and just wish it would stop.