[Lupusgal68]

For the women out there.....Does anyone notice that their Lupus symptoms become worse close to and before their peroids starts? I know they question the connection of hormones with Lupus so this would make sense.

I didn't notice so much in my younger years, but as I have aged I have noticed how terrible I feel a week before my peroid with joint pain and everything inflamming. By day 2 or 3 it starts to calm down once again.

Is this just me?

Thanks
Pam

 

[karen.w.]

hi pam

No it's not just you I feel the same way too....I feel worse a few days before my period & then better on about the 3rd of it.(not to mention my mood too!)

It is strange the way our hormones affect lupus..through both of my pregnancies I went into remission...strange,but it was wonderful while it lasted!

take care..bye for now
karen x

 

[greenhaggis]

Same!

Plus I also get very severe tiredness and a higher temp, headache, blood clots and flooding! The only problem I had before having my kids was the headaches.

One docs comments were 'what do you expect at your age and after having 4 kids in 6 years, your hormones are probably messed up!

 

[cath]

HI Pam,

No it isn't just you. It is a well doccumented common lupie experience .

X C X

 

[Karin1]

As if PMS isn't enough!!

I'm in the same boat as well, and give fair warning to my family

Karin

 

[Clare.T]

It's very common & well documented. Some doctors prescribe extra meds to be taken before but I never learnt which meds.

Flooding and excessive bleeding and so on are more likely to be gyny problems and of course need investigating, not brushed off with fatuosities, if only to get relief. Investigation usually starts with administering a sharp kick to the GP where it hurts most. Ooops, just a moment's fantasy.

My experience was a very marked worsening from mid cycle onwards and an immediate miraculous clearing as soon as the period started with a few days feeling much better followed by very gradual worsening until mid cycle. Menopause was a great blessing

Clare

 

[neongirl]

My experience is very much what Clare described. Not that I want to age super fast, but I am in high hopes that menopause will help me out a great deal too

 

[audigg1]

I experienced the same thing. It took me quite a while to put the two together. Once I did, things made a lot more sense.

My ITP also got worse at the same time. Adding pain relief that actually worked relieved the cramps and made the bleeding worse.

 

[Marika]

Oh Yes,

In fact I am just getting over 'a flare' so to say that lasted about 4 days, and guess what my periods started tdy. I am 54 and really think it's about time this all stopped. But, yes....this I can say started about a few years ago being ill before my periods...but again you can't talk to other women about it because they say oh yes i get bloated and stomache cramps too...I'm sure they do too, who am I to judge...but I just spent 2 days in bed!!! due to pains, headaches swollen limbs ect....

You are not alone,
Hang on in there

Marika
xx

 

[Edith]

So do most of you actually feel better once it starts? I actually have only moderate symptoms about a day or two before and then feel horrible the first three days of menstruation. It often keeps me up at night with pain from cramps and body wide pain that I don't remember so much from my pre-lupus days. I always hope that I will start on a weekend because I sometimes have to miss work on the first day because it is so bad.

I got lupus at 32 and am now 35. I don't know if age has anything to do with the severity? Also I have never had any children. I have heard that will make the problems worse too, but don't know if that is an old wives tale or what.

 

[Lily]

Hi all,

Yes I followed the same pattern as Clare.

I had a hysterectomy but kept ovaries, that didnt stop me feeling the monthly flares and hormonal upheaval that Lupus brought me. Mine too improved for the week during my period, only to creep up during my cycle. I could always tell when I was ovulating with an increase in Lupus symptoms which only got worse until my period started. I dont ovulate as often these days but I can tell you when I do I reckon by the worsening of my symptoms during those months

Edith people with Endometriosis often experience something similar to you, have you been checked by your Gyn lately? It might be worth mentioning, other conditions like Fibroids can cause problems like that too.

love
Lily

 

[Clare.T]

I forgot to mention that marked " premenstrual exacerbation" of symptoms is on Dr Hughes list of "Alternative" Criteria which can assist diagnosis. See pinned note at the top of Not Yet Diagnosed section.

Clare

 

[Wolf in the shadows]

count me in too, I dread each month! just what we don't need lol

 

[Hatty]

Hi there

I used to have this but now have the new progesterone only coil, the mirena coil, and not only have 3 years contraception but also no periods at all! I have to say that I am very happy with it and would highly recommend this, as I used to have the most horrible periods! Obviously it's best if you aren't going to want more children in the near future and I'm sure there are lots of provisos but just to let you know the option!

It does hurt to have it put in, but balanced again all those awful period agonies...

xHatty

 

[acard]

Pam,
Good thread-I am a HUGE mess before and during my period. I had a endometrial ablation several years ago, so my period is light, but the other symptoms seem to get worse the older I get.
I often wonder if I should have had a hysterectomy instead of the ablation. I just hate it all. I have a cyst on my left ovary that gets big than it shrinks and then it goes back to being a large cyst again. I have had too many vaginal ultrasounds:sad: .

I guess it is truly indivual and very confusing.


Hugs,
Becca

 

[Sage Hen]

Hi,

Me too!

Sandy

 

[Soundy]

I ended up having a hysterectomy last spring because I was losing
more blood than my body could replace...bleeding to death a month at a time as my gyno put it ...excesive amount and twice a month...

I like Lily kept ovaries and still feel worse as I cycle...fever and aches
mostly and a few pimples... as a teen I was the envy of pimple faced
friends as I didn't have them...now at 46 I have to deal with them
weird...

 

[alisonr]

I only start to feel better towards the end of my cycle. Sore joints, extreme fatigue and VERY VERY moody. I'm 26, so not sure if age has something to do with it - hope not cause don't think i can cope with it getting much worse.
Just keeping smiling i suppose

 

[jaki]

wow guys i thought i was going mad i only noticed it recently maybe 5 months now but mid cycle onwards to maybe day 2 i am in huge flare my walk has gone on two occasions at least as far as predictability goes with lupus we are getting some warning and predict a flare to some degree.only mentioned it to my husband last night and he thought the same.wow i must mention this to doc and see is there anything we can do.
thanks guys
take care:wink2:

 

[mmair]

I can only add to this disscussion from the "other" end of the spectrum. I have never had a period (pituitary insufficience) and i don't produce any hormones. So I don't experience a worsening "once a month":wink2: However when I decided to try and get pregnant. I had fertility treaments. That was when my illness reared it's ugly head. I had a stroke and optic neuritis. I however got pregnant and survived it in the 23 week I gave birth to a 634 gram baby girl (after premature rupture of the membranes and placental abrubtion). She is 8 years old now!

There is definatly a strong link between Lupus and hormones without a doubt. However many write in the German lupus forum that they have success with Depo Provera (Medroxyprogesterone acatate) contains only Progesterone (estrogen is the Lupus alarm) and it often stops the natural cycle completely. Maybe worth asking about.

Hope you all find relief soon.

Liebe Grüß,
Monique